My Journey Through Thyroid Cancer

My Final Post ..... The Ending of a Journey

2010-06-04T10:27:00.001-05:00

It is a very strange feeling to be writing this post. It will be the last update that I post to this blog. The blog itself will remain up for those who want to read it and find encouragement. I have reached the 10 year post diagnosis and 5 years past my last treatment and I am doing very well. My labs are completely balanced and cancer markers normal. Best of all I feel well. :)

It's time for me to begin the new chapter in my life. I have started a new blog that will align itself with my future career. In the next 1-2 years I will be graduating with my Naturopathic Doctorate. This is my passion. How do I teach others to heal and avoid the poor health I had to dig myself out of. There are so many ideas that swirl around in my head as I read and read and read. I needed a place to share them and this blog wasn't the place. So if you want to come and visit me at my new *home*. You can find me blogging at.....

LIVING HOLISTICALLY

To your health and may God bless you on your journey as much as He has mine.

Stephanie

Doing Better

2010-01-01T21:08:00.001-05:00

Thank you to all my friends who were concerned about my last post. It was very therapeutic for me to post my feelings about my journey but now the temper tantrum is done. I have been back on my hydrocortisone for my adrenals for 4 days and things have levelled off. I no longer have that weepy feeling and my energy is returning. The brain fog is gone and I am able to function like a normal person again.

I guess I need to pay attention to my adrenals and not feel like I need to be wonder woman. RAI damaged my adrenals and they are very vulnerable to stress. The holidays are a stressor for me. Looking back I had the same issues last year. So I will pamper them back to health and continue on my adrenal glandulars to support them after I wean off hydrocortisone.

Life is good. God is good.

Approaching the 10 year mark...

2009-12-29T11:35:00.012-05:00

You would think that the milestone of 10 years would send me into celebration of the life I have been able to lead since my diagnosis of thyroid cancer. But if I am truthful, yes, there are things that have been blessings but the struggles have been great.

There are few places I feel free to share my true feelings. Unless you have travelled this path you will never understand. Even though desiccated thyroid has helped me with fatigue it has not cured me. I struggle daily with rationing. If I do A & B then I cannot do C. But if I do A & C then I can maybe do D. I am sick of it. I want my thyroid back. The words of the ENT that ripped my thyroid out echo in my head. "You will never know it's gone. You'll just take a little pill for the rest of your life and it will be fine." WELL IT ISN'T FINE!! The idiot endos that thought RAI after RAI treatment would help me make me so angry. In their attempt to remove the cancer from my body they destroyed many other parts - critical parts.

My adrenals and my ovaries: Both sent me spiralling out of control into fatigue, hot flashes, hair falling out, dry skin, intolerance to noise, change...... life. Under treated thyroid with T4 only medication taxed my adrenals - So much for Synthroid being the Cadillac of thyroid treatment hey Dr. N? RAI after RAI pushed both my adrenals and ovaries over the edge. They are now waiving the white flag. I will forever depend on hydrocortisone, adrenal glandulars, vitamin c and bioidentical hormones in an attempt to maintain some level of normalcy. But the fact of the matter is. I am in early menopause with adrenal fatigue. And it s&*$#. My libido is non-existent and no amount of hormones has changed that. I have chronic insomia too - thank heavens for Xanax or I would never sleep some weeks. Yeah - I never noticed it was gone......

My gut: I struggle with food intolerance's, flatulence, constipation, liver overload and malabsorption. I cannot eat gluten which is what a social life is built on - people eat. I don't want to invite anyone over since our food is "wierd". I can't easily go to any one's house because neither I nor my children can eat the "glutened" food. So each time we have family gatherings I am forced to replicate the food everyone else is eating - but gluten free. More stress. If it were just me I wouldn't care but I am trying to make a life that is relatively normal for my children who do not quite understand it all. Then there are the church events...... why bother? It's more work than it is worth.

My weight: I struggle and struggle and struggle to keep it under control. But anyone who understands the body knows that adrenal fatigue, unbalanced hormones and poor digestion is a recipe for disaster. So each day I get on the treadmill for 30-40 mins to burn off enough calories so that I can eat and not gain massive amounts of weight. It seems even a normal amount can send my body into orbit. I can gain 5-7 lbs overnight. I hate the way I look and avoid looking at my body in the mirror at all costs. I hide it well with clothing but "I" see the truth. This issue has only magnified since Forest Pharmaceuticals decision to destroy the best thyroid product on the market. They will not tell anyone why they did this and it has made life miserable for many trying to find a drug that works as well. This all takes its toll as the energy I expend exercising is a trade off for another activity of the day. So there are days where I have to fore go the exercise so that I can do something else. Yeah Doc - I never noticed my thyroid was gone.

I always struggle with fatigue and overload during the holidays. I am so jealous of my Jewish friend who each year departs over the Christmas holiday to a tropical location to bask in the sun. Don't get me wrong I love Christmas but the whole production that goes with it has taken its toll. We rush around to find gifts for family members who really need nothing. Eating food that isn't good for us only to put on weight that will take months to get back off. The stress of it all sends me into this downward spiral that I now am experiencing. I think I could celebrate Jesus' birth in a warm climate, relaxing. To top it off I live in the Midwest where we do not see the sun for months. Can you say seasonal effective disorder?

Todays agenda....Breakfast, Treadmill, Shower, Clean shower, Dry hair..... Exhausted. Take a rest. Mop floor.... Exhausted so I take another rest until lunch. Do lunch then drop for the day. What kind of life is this?

I am the care giver of the family. There are times I need to be the one that is taken care of but it never happens. I must maintain the vitamin regimen of my two hypo children along with studying and keeping house. The food preparation is enough to make anyone throw in the towel. We are gluten free, soy free, dye free and as one lady I know puts it "crap free". That means I cook from scratch. I bake my own baked goods as well.

My family cannot understand my outbursts of frustration over food stuck to the sides of the microwave, chocolate milk puddles on the counter and slippers left in the line of traffic. To them it seems like nothing but to me it is *one more thing* to deal with when I am already feeling at my limits. It's those darn adrenals I know.

This year while making cookies my 7 year old daughter told me that if I had died from my cancer "Daddy would have to shop for their gifts". Why does a 7 year old need to deal with this? I am frustrated and angry. I feel like a part of my life has been stolen from me. The more I learn about my body and how God intended to heal it, surgeries and radiation have no place in it. These doctors have to see that the people are getting sicker and sicker as they dole out more medications and "treatments". Do they care? Why do they accept this as normal and not seek other answers? It's maddening to say the least because I am a life that could have been different.

Today I want to run from my life. To lie on a sunny beach somewhere while someone takes care of me. No one to talk to. No one to demand things of me. No noise, no commotion. Nothing to think about but me. I hate that I feel vulnurable. I hate that I fear the possibility of cancer returning. I hate that this is what drives me to eat well and do the right things. But that is where I am. I am alive and will get through this time again with effort but it gets tiring. Mentally and emotionally.

If I had it to do again..... I wouldn't. I do miss my thyroid....... But that isn't an option so I plug on.

Green Smoothie Challenge

2009-06-30T10:53:00.002-05:00

My local healthfood store is doing a green smoothie challenge. So yesterday I decided to pick up a big tub of spinach from CostCo and use the blueberries I got at the farmers market on Saturday to make a smoothie. It actually was really good - I had my doubts.

Here's what I put in it.

1 1/2 cups Filtered Water
1/2 cup blueberries
1 cup spinach (raw)
1 Tbs Agave Nectar

Blend and drink......

Here's a link to the challenge flyer - it's where I got my "recipe".

Stephanie

A little over 9 years later.....

2009-06-27T15:55:00.002-05:00

I had my 6 mos check up with Dr. B last Tuesday. I no longer look forward to my check ups with fear and trepidation of what the lab tests will reveal. I know I am healthy and strong..... I can feel it.

Dr. B quickly looked over my labs as we entered the room (a little snafu in the lab made them not arrive before our appointment). He scanned them and said that he had never seen them look more balanced and my immune system looked very strong. My Tg was even down. It had been 13.7 in December and now it is 10.3. I am thrilled as there has been no RAI treatments for 4 years now as of May 23rd. Thank God (literally) I walked away from my endocrinologist when my Tg rose for the 3rd time and he recommended beginning to think about External Beam Radiation. I had a feeling to my very core that this was not the answer.

So today someone asked me what I think contributed to my healing without traditional treatment. This made me think about it. So I thought I would share. My glucose levels were also down from 101 (fasting) 3 years ago to 85 now. No more insulin resistance. Which leads me to my list.......

1) Gluten Free - I read a great book called Dangerous Grains which made a very good case for the connection of cancers to gluten. It also linked autoimmune thyroid disease to it. I am sure this is something I had because I had antibodies (Tg Ab) when diagnosed with thyroid cancer.

2) Limit Sugars / No HFCS - I do not eat sugar for the most part. Every once in a while I will have a gluten free cookie but even then I make some with stevia, agave and honey.

3) Eating Organic - I eat as much as I can find and afford that is organic and locally grown / raised. The chemicals and hormones are very bad for our bodies.

4) Balanced Sex Hormones (BHrt) / Balanced Vitamin & Mineral Levels - Your body is a machine that needs the right things going in at the proper balance to keep it running. Just think how your car runs when a spark plug goes bad. Not well. So how do we expect our body to run well with toxic chemicals and low nutrient foods. It stresses our body and makes us age faster - this stresses the adrenals which tanks the hormones..... and so it goes.

5) Detox, Detox, Detox - I have lost 30 lbs and this has caused a lot of toxins stored in my fat cells to be released. It was a huge relief to my body to eliminate this burden of weight and waste. I have pampered my liver with Metagenics Ultra Clear Plus and Dandelion Root Extract. I also take high doses of Iodine (Iodoral) which helps to push the toxic halides like bromide out of my body. Three years ago I removed my mercury filled amalgam fillings and chelated to remove the mercury from the tissues.

This is what I believe are my five steps to health. It really isn't that hard but it takes time, preparation and thought to accomplish it. But I am here to tell you that it feels so wonderful to be well.

To your health......

Stephanie

Let's Try Juicing

2009-03-19T09:16:00.003-05:00

I am so tired of the inflammation and issues with fluctuating weight. I listened to a podcast the other day on http://www.talkshoe.com/ - Women4Balance broadcast with "The Juice Lady". (I should also add as a side note that I am one of the featured speakers on this podlist as well). I know I don't get enough fruits and veggies so this may help me get those vital enzymes.

Today's juice is:

4 Organic Carrots
1 Organic Cucumber
1/2 Organic Golden Beet with 1/2 of the greens
1 Organic Orange

It tasted pretty good too! This combo w/o the orange was labeled a body purifier. Here's hoping.

To your health!

Eye Appointment Improvements

2009-02-14T19:49:00.001-05:00

I have not been to the eye doctor in about 2 years. It seems that it is just one more thing to put into an already packed schedule and after years of having several doctors appointments per week I resist making more now that I am well. But my contacts were drying out and my eye sight seemed to be worse when wearing them so I sought a new doctor because our insurance had changed - yet again.

I found a doctor and scheduled an appointment. He did the exam and then asked me if I knew what my previous prescription had been. I told him that the left eye was -.75 and the right eye was -1.25. He smiled and said well your eyes have improved. They are both -.50 so you are over correcting. YEAH!!! I thought my eyes were getting worse but they weren't. It was the contacts being the wrong prescription that made things worse.

Once I was home I began to contemplate what I had changed since my last appointment. There were two things. Well actually three.

I had removed my amalgam fills and chelated the mercury out.
I had increased my Iodoral from 50 mgs to 125 mgs
I had begun to take 25,000 iU Vit A (Kroeger Sunny A)

Knowing that Vit A was important to the eyes I began to wonder about the iodine. Well guess what? Iodine is concentrated in the ciliary body of the eye.

So I looked for what the ciliary body did:

One function of the ciliary body is the production of aqueous humor, the clear fluid that fills the front of the eye. It also controls accommodation by changing the shape of the crystalline lens. When the ciliary body contracts, the zonules relax. This allows the lens to thicken, increasing the eye's ability to focus up close. When looking at a distant object, the ciliary body relaxes, causing the zonules to contract. The lens becomes thinner, adjusting the eye's focus for distance vision.

It appears that not only is Iodoral saving my life from thyroid cancer but it is also improving my eyesight. I love this stuff!!

Weight Loss / Colon Cleansing and Feeling Great!

2009-01-16T08:07:00.007-05:00

It's been a while since I updated. Life has been busy. The first week of November I attended the Weston A. Price Wise Traditions Conference in San Francisco. It was so much fun to be with over 3,000 holistic / natural / like minded people. There were not enough hours in the day and it seemed that many of the seminars I wanted to attend - like Sally Fallon's Eat Fat Lose Fat - were at the same time as another one that I wanted to attend. My highlight was to attend Dr McBride's all day seminar on the Gut & Psychology. Boy did this strike home for both myself and my children. I highly recommend listening to this clip from the conference. She discussed reasons for food allergies, behavior issues and how to heal the gut with diet.

My favorite doctor - Dr. David Brownstein - and friend spoke as well. He discussed the iodine & thyroid connection. He just released a new edition to his Iodine book where he discusses Iodine and children. My son's story is part of this topic as a case study. Lynne Farrow of Breast Cancer Choices gave a wonderful presentation on the history of Iodine uses in clinical practice and how it effects breast disease.

Now for me. I am doing very well. As I finished 2008 I began to reflect on the progress I have made again this year in restoring my own as well as my family's health. I have so much vitality and have been so healthy this year. I cannot think of a time that I was sick for the last 2 years. I have my bouts of headaches and feeling a bit fatigued but then I just take it easy and I am back up and running. I think it is detoxing related. This year I lost over 30 lbs bringing from almost 170 lbs to the 130's. I have not been this thin since the 8th grade. It feels so good. I get workouts done 3x / week at the YMCA too.

In November we took the kids gluten free. We have had to continually increase their thyroid medication and I was getting concerned about their behavior. When my son's teacher approached me about his ADD like issues I called my doctor and asked him his thoughts. Could it really be gluten? He told me if it where his child that he would try it. So I cleared the house of all gluten so there was no whining that they wanted something they could not have and took them both gluten free. I didn't think my daughter had much of an issue with gluten but it was easier to do both than one. My son had been having issues with GERD, Stomach aches and Constipation. My daughter was just very emotional.

One week into the gluten free diet my son's issues melted away. I asked him if he felt better and he said "My tummy doesn't hurt anymore". He has been very good about making sure his food is safe. It is now 2 months later and he is finally starting to eat more food. My ND says that it takes 6 weeks to heal 50% of the gut and then another year to heal the remaining 50%. My daughter's behavior got better too. The house became a calmer place and they became more attentive. I highly recommend reading Dangerous Grains - an eye opening book on why gluten is so dangerous. Also there is a great website for gluten issues info for kids from a Dr in New Zeeland that calls himself "Dr Gluten".

My daughter had an exposure to gluten 6 weeks after getting taken off of it. She was at her class Christmas party and she ate 2 Dixie cups full of pretzels. I picked her up from school not knowing this had happened. She was screaming in the car and hitting her brother. When we got home every little thing set her off and she would run out of the room crying. I wondered what was wrong with her. Then at lunch we were discussing her party and I asked what they had to eat (the teacher and I had gone over the "menu" to make sure she was safe but they changed the food grrrrrrr.....). She told me she had eaten pretzels. I said "OH that's gluten". She burst into tears and said she didn't know. Well that explained the behavior. But then 2 days later when she was taking a shower I went to dry her off with a towel and she had a rash all over her torso, buttocks and legs. The poor child was peppered with it. This can happen when there is a gluten exposure and you are sensitive. It was so itchy and she was clawing at it. There are still a few on her bottom - almost 4 weeks later. It takes so long to get this junk out of her. It has taken some time to detox her and get her attitude more level. So gluten is out of our home for good - see my Gluten Free Naturally blog for some great kid friendly recipes.

This week I am doing a 3 day fasting colon cleanse. My stools have been "off" lately and I am so constipated. I think this is due to the level of bromide I dumped when I was dieting. I did an Iodine loading test during this time and my bromide went to a 62 Ug/L when it had been 28 Ug/L when not dieting.

I will have my follow up appointment with Dr. B on Wednesday. He called me with my lab results last night and I am happy to report that my cancer markers were 13 - last one was 11.9 - so we are still hanging on with great markers. It's hard to believe that 3 years ago when I went to see him for the first time I was dying. They wanted to do external beam radiation for a recurrence of the cancer. My thyroglobulin markers were up to 24. I have gotten them down naturally. Praise God. I am glad I followed His leading in taking the road less travelled. Our bodies are amazing and can heal if given what they need and by caring for them as God intended.

So that's my update. Live well!

Stephanie

Detoxing, Detoxing........

2008-10-23T13:35:00.004-05:00

I am still struggling with my latest increase from 100 to 125 mgs of Iodoral. I know it is due to detoxing. I am experiencing fatigue, weight gain, aching joints and headaches. To relieve the headaches I can take 1/2 tsp Celtic Salt in 4 oz OJ and within 1/2 hour it is gone. The rest of my symptoms are harder to deal with. I find myself not taking iodoral at all every few days just to give my body a break. It makes me wonder. What on earth am I detoxing and how much? We know that iodine moves, bromide, chloride, fluoride, mercury and lead out of the body.

I do have an interesting observation to share. A week ago I was drying off after my shower and went to put my bra on. I noticed that there were gray circles in the middle of the cups where my nipples would rest. How weird I thought. So I got out another clean bra from my drawer that was also white. What do you know? It had the same gray circles in it. I must be detoxing something from my breasts. I have not had this before. I do have a grayish paste that I can scrape off my chest on my breast bone - is this bromide? I have no idea. I am thankful whatever it is, is coming out.

I will schedule my thermography in the next week or so and am eager to see if there have been any changes. I have lost 2 of the 3 fibrous masses in my breast through iodine supplementation. Let's hope that the 3rd is gone. It was smaller last year.

I don't think we quite understand the level of exposure to toxins we are receiving on a daily basis. I know I had no idea that I was this bad and I work hard to stay clean. I cannot imagine how bad someone would be who does not concern themselves detoxing. It seems they are a ticking time bomb of ill health. We are in for a health care crisis in the future I believe. It makes me sad becuase it does not have to happen.

So that's my update. I will continue on 125 mgs and then retest with a loading / bromide level test the end of October.

Day 6 on 125 mgs Iodoral

2008-09-23T22:10:00.002-05:00

Things were going quite well with my increase of Iodoral from 100 to 125 mgs until today. I was in my kitchen cutting up vegetables for dinner when all of the sudden I started to feel very anxious. I was baffled as to why this was happening since there was nothing for me to anxious about. Then it hit me. I have been on 125 mgs of Iodoral for 6 days. The last time I increased from 50 to 100 mgs it took 8 days for me to feel its effects. This time was shorter. It has to be the bromide coming out again. It makes me wonder exactly how toxic am I? I have been supplementing with what is considered to be very high doses of Iodine since 3/2006 (2 yrs 5 mos). I also noticed that I have a metallic taste.

Many websites will tell you that what I am experiencing is Iodism or an allergy to iodine however, this is obviously not the case since I have been taking iodine without issues for literally years. If you google bromide toxicity symptoms you will find that they mirror what is considered iodine toxicity. For me, I am lucky to have a doctor that tests my bromide levels when we check my iodine saturation level and I am still pumping out large amounts of bromide. It really gives me a window into one of the reasons why I probably got thyroid cancer. Between the bromide, mercury and low nutrient levels in my diet and stress of my job I was destined for it.

Increasing Iodoral Dosage Again to 125 mgs

2008-09-18T21:24:00.010-05:00

I am on day 2 of 125 mgs of Iodoral / day. The decision was made to increase to this level from 100 mgs due to my continued large levels of bromide being dumped. Bromide is so toxic that it needs to come out! I started on 100 mgs in November last year and felt good until I hit day 8 and then I experienced some bad detox symptoms. Panic attacks, depression, fatigue, joint aches, abnormal menstruation and more. It was very hard and lasted for 5 weeks. I had to take it for 6 days and then take a day off. I am hoping that does not happen this time.

Here are my Iodine Loading Test results:

July 2008
Iodine Excreted 53%
Bromide Excreted 28.6 mgs/24 hr

Dosage history:
50 mgs March 06 - Sept '06
75 mgs Oct 06 - Nov 06
50 mgs Dec 06 - Mid Oct 07
100 mgs Mid Oct 07 - Mid Feb 08
Took a break from iodine from mid March 08 - end of April 08 for a detox protocol (off all supplements)
100 mgs April 08 - July 08
Currently on 100 mgs

Here are my past results:

November 2007
Iodine Excreted 66%
Bromide Excreted 34 mgs/24 hrs

Dosage history:
50 mgs March 06 - Sept '06
75 mgs Oct 06 - Nov 06
50 mgs Dec 06 - Mid Oct 07
100 mgs Mid Oct 07 - Mid Nov '07

August 2006
Iodine Excreted 60%
No Bromide done

Dosage History: I took 50 mgs Iodoral from March '06 to the time I took the test.

I am feeling great. My husband and I just returned from a 9 day trip to Alaska. It is wonderful to have a life again.

Here we are.

Just for grins I decided to get out a copy of the picture from our last cruise almost 10 years ago to the month. I was amazed at how much I have changed since then. I had not been diagnosed with cancer yet nor had I had my first child. My life was to change a whole lot after this. But you can see signs of the issues already in this photo.

I will try to keep up with my blog as I continue with the increased dose of Iodoral and retest my iodine and bromide levels.

Until next time....................

To your continued improvement in your health!

Stephanie

Update on me - Progress August 2008

2008-08-07T14:52:00.006-05:00

I get continued requests to update my blog with information on how I am currently doing. GREAT!!! That is why I have not spent much time on the blog or caught it up with all the details since December's posting. But I will get to it eventually.

My health continues to improve and it amazes me that I can feel any better. But I do and it is a wonderful feeling to live an abundant life. Recently I lost 30 lbs and went from a size 12 to a 6. I have not been this small in as long as I can remember. I suspect that my thyroid was an issue for many years before thyroid cancer was diagnosed. I always had issues with weight and ate less and less as time went on and worked out harder and harder but nothing fixed it. I joined weight watchers 3 times only to gain all that I lost and then some back again. Eventually you just resolve to being overweight.

One thing that I have discovered that was effecting my weight is Gluten. Gluten sensitives are very common in people with thyroid issues. Especially hashimotos folks need to watch their consumption as it has been show to increase antibody levels. So I have for the most part given up gluten. Wheat is a big issue - after consuming it within a half hour I become very sleepy and feel horrible. It just isn't worth it. So I have gone back to my gluten free ways (was GF for over 1 year). I am getting very good at baking things that taste like gluten products. It just makes it very difficult to travel.

Speaking of travel, we recently took the kids to California and spent two days in Disneyland and one day at Legoland. There was a point in my life where I would have NEVER attempted this. Both for my own issues but with two hypo kids, it would have been a nightmare. We all did great and enjoyed our time - kids first flight as well.

In 4 weeks my husband and I will leave for a 7 day Alaskan Cruise and in November I will attend the National Weston Price conference. It feels so good to have a life full of adventure again and not sleep.

I have also had requests for what I currently take in the way of supplements so I will give an updated list. Keep in mind that these have been designed for my specific needs based on lab testing so please don't think that this is the answer to all your issues. It is a constant fine tuning process. We run labs about every 3 mos on my levels. Which I am happy to report - my cancer markers (Tg) were down again for my July visit with my doctor. I am so thankful!

DHEA 5 mgs (doctors brand)
Pregnenolone 25 mgs 1/day (Research Nutrition)
C-500 4/day (Optimox)
Iodoral 50 mgs 2/day (Optimox)
Multi Mins 2/day (Biotics Research)
BioMulti Plus 2/day (Biotics Research)
Cu-Zyme 1/day (Biotics Research)
MSM Forte 2/ day (doctors brand - 1,000 mgs MSM / tab)
B6 Complex 1/day (Pure Encapsulations)
Sunny A 1/day (Kroeger Herb Products)
Conjugated Linoleic Acid 1/day (Vitamin Research Products - 1 gr / tab)
BioPro 1/day (Vitamin Research Products)
DMG Complete 4/day (doctors brand contains Folinic Acid 400 mcg, B-12 Methycobalamin, DMG Dimethylglycine 150 mg, Choline 50 mg, Riboflavin 50 mg)
1/2 tsp Celtic Sea Salt
UltraClear Plus pH 1 scoop / day as needed (Metagenics)
Methycobalamin injections 1,000 mg 2x / week
Armour Thyroid 4 grains (240 mgs)

The DMG is for a recent discovery that I have a gene defect in the MTHFR pathway. I am only just beginning to understand what this means. You can google Amy Yasko for more info. Basically that is all I know now too. My Dr is finding that many of his thyroid patients have this defect. It is genetic and common in Western European descent people.

So that's the update on me. Living life to the fullest. So much for my endo telling me that if I took Armour my cancer would return and I would probably die. It is now 2 1/2 years later and I am doing better than ever.

To your health!

Stephanie

Issues with 100 mgs Iodoral

2007-11-12T21:24:00.003-05:00

To some I have given the impression that my supplementing with iodine has been smooth sailing. This is not the case. I had issues with moving from 50 mgs to 100 mgs in October 2008. Here is my story.....

I did a 28 day detox with my ND in Dec '04. I had RAI (250 mCi's ) May 2005. I had to cleanse my body again from that. I spent the next year working on cleaning it up by eating only organic, off gluten and minimal sugars. Then in March '06 was when I started working with Dr. B. He started me off on 50 mgs from the start. I had no detox reactions either. So I was thinking "Hey this is great". Then in October of 2008 we decided to kick it up a notch and go to 100 mgs. Well I have to tell you that at times it was nothing short of hell. So those of you who think I don't understand how hard a bromide detox is, I do. But...... I pushed through because with a cancer diagnosis and measurable markers you just never know what is going on.

Here was my list of symptoms:

Body feels "shaky" like it is vibrating but you cannot see it - like when I hold out my hands.
Extreme anxiety to the point where I had to call someone to talk me down one morning.
Dropped temperature - one day it was 96.4 but most of the time it was around 97.1
Depression / "the blues"
Vertigo
Fatigue
Brain Fog
Aching joints
Acne
Breast Tenderness
Cloudy Urine
Heart pounding easily with little movement
Pain in thyroid bed ( I have no thyroid)
Painful lymph nodes in neck

So I took 2 days off and pumped in salt and Metagenics ultra clear plus pH. Then back on. I then did 6 days on of 100 mgs and 1 day off. It helped with the detox but my weeks were not great. I did not feel well but I knew that this was all part of the process. I will toughed it out at all costs. I had recently added 6,000 mg of MSM (at Dr. B's suggestion based on other Dr's experiences) to my protocol which helped the detox but this only made me feel sick to my stomach - but I still took it knowing that it was supposed to help me in the end. I also stress dose with Cortef to help with the shaky feeling and the anxiety. It helped. This went on for a month (since Oct 12).

So yes I understand and maybe that is why I "appear" to be less than sympathetic at times. I am a fighter. Even when things are rotten and I feel horrible I keep going because I know that in the end I will be glad. There are times when I am a bit freaked out over my symptoms but then I read the info on bromide toxicity and what it does and that lines up with what I am feeling so I continue.

So that is my story and now you know that it has not been smooth sailing for me with iodine either.

Keep plugging - the end of the road and better health is worth the journey!

Stephanie

Day 3 on Alpha Lipoic Acid

2007-11-06T19:45:00.000-05:00

I am so achy and tired. I am glad this is the last day . I have a burning mouth and a metalic taste in my mouth. I woke up this morning with mucous coming out of my eyes. I decided to take a dead sea salt bath with epsom salts to try to increase the detoxing. It also helps with the aching. In this case it didn't do too much so I wonder what is happening. I also wonder how much longer this is going to continue. The ups and downs are so hard.

Tomorrow is my appt with Dr. B. We have a lot to discuss. I hope he has some options for how to deal with all this. I am eager to get my labs too. A bit aprehensive about it on a level as well.

Mom is coming to be with my daughter. I am glad I don't have to worry about her.

Tomorrow is a new day. Hopefully better too!

Day 2 on ALA Chelation

2007-11-05T10:21:00.000-05:00

December 5, 2006 - Today was day 2 of chelation with ALA. I started on Sunday night and have been taking 50 mgs every 3 hours. It has helped in some ways but in others I am feeling achy and tired. My eyes feel heavy and I have a headache. ALA is supposed to cross the blood / brain barrier so I am hoping it is moving the mercury out of my brain.

I was at my dentist's office today. My son had his checkup and cleaning. He also got his spacers put in for his expander which will be put in on Monday. Poor kid but he was a trooper and did well.

I am struggling with the feeling of a swelling tongue. I didn't take anything before I went to the dentist because it seems nothing works and I do not have any zeolite like the stuff the Dr. gave me last week when I was there. I'll have to decide if I want it the next time I go.

I have a metal taste in my mouth and it seems more saliva. There is also a burning sensation on the edges like what I had prior to removal of all my amalgams. How can the FDA think this is OK. I wonder this each and every day. This is costing me thousands of dollars to regain my health and it could have been prevented.

SAD!

My Second Hair Test from Genova

2007-11-01T15:41:00.001-05:00

On Decmeber 1, 2006, I had my regular 2 week appointment with my Chiropractor / ND.
I have done a lot of research on heavy metal toxicity and more specifically those involving mercury. I had all my amalgams removed and my MD had been helping me chelate using DMSA / Chlorella / Cilantro drops and Mercurius Viv. My ND did not agree with this protocol so it was a subject that we tended to ignore. My ND likes to use Metal Free - www.metalfree.com to chelate mercury. There are a few positive testimonials but nothing that strikes me for its cost. I had read Andrew Cutler's Amalgam Illness book and it seemed to offer more reasons why people symptoms of toxicity but when testing is done they do not "show" toxic.

I was sure this was me. My hair tests consistently show no mercury. My DMPS challenge test showed zero mercury yet I had 11 amalgams in my mouth - that makes it virtually impossible for me to not have some toxicity. How possible would it be that I would NO mercury when it is in the environment? I didn't buy it. I showed symptoms and felt better when chelating.

I told my ND that I was experiencing eye pain behind my left eye. I told him that when I started chelating I felt better and the pain went away. He said that he suspected my pain was related to mold as was my fatigue. I asked, "But why is it that when I started chelating the pain went away and I felt better?" He said that mold is carried away by DMSA too. I had NEVER read this. That was my next mission to see if this was true. I was so skeptical of doctors - even those who had helped me because there had been many I trusted that about killed me.

We reviewed my hair test. I had one done through Great Smokies Diagnostics lab in February. It didn't show anything other than all my mineral levels were on the low side. My Uranium however, was in the red range. This time my mineral levels were low again and my uranium still high even after chelating with homeopathy for I-131 which is how I was poisoned. He stated that he was happy with the results but I was not. My nutrients needed to be at least midway according to Andy Cutler. Anything on the low end signals mineral transport issues. This is consistent with my low mercury reading as well. My ND knew nothing about Andy's mineral transport information and tried to blame my low levels on autoimmune issues. I was dx'd with cancer - my antibodies are now gone from the thyroid so I think that this is not the case. I was frustrated to say the least.

I had also done a hair test from my MD's office through King James Labs. It was taken at the same time as the Genova so I was eager to see how they would compare. I prayed that it would show more than the Genova test or that my MD would see something. This was getting annoying! Thankfully my MD did take me seriously and he did believe that I had uranium issues. He called Genova lab and talked with a technician and he said that I did have an issue. My ND said that he had called them as well and they had said that I did not have an issue with Uranium! He stated that the technician told him that it was on the "outside" of my hair and not in my tissue. This didn’t make sense to me. How was it getting to my hair if it isn't in my tissue? I made my mind up to continue the fight by myself if I had to.

Mercury Vapor & Zeolite

2007-09-29T12:30:00.000-05:00

On November 29 I was feeling achy in my muscles and joints and had been since the previous week. I had no idea if it was related to low thyroid or metal toxicity. It was so frustrating dealing with this all the time. It seemed so complex. Which was it? The chelation got rid of the pain behind my eyes but it seems that when I would chelate I would require more thyroid hormone. I wondered if this was what was happening again. I decided to try adding ¼ grain that I had stopped. I had issues preivously with my BP being at 142/80 and 130/78. Then my BP went down to 110/70 two weeks ago.

I had gone to the dentist the previous day. Normally I loaded up on selenium and take my DMSA but this time I forgot to take it. My dentist looked at me while I was having my consultation with him and he asked what was wrong with my left eye. I didn’t tell him anything about my eye being the one that had been bothering me with pain and visual disturbances. I asked him what he meant. He said that my left eye was “smaller” than the other eye. Now this was just weird to me. My left eye had been giving me issues and now my dentist could see it! He got up and handed me a bottle and he said that almost immediately my eye looked better. Just from holding it! He muscle tested me and my arm was very strong while holding the bottle but weakened when I did not.

I asked him what it was that he had given me. It was something called “Natural Cellular Defense”. It was Zeolite. He instructed me to place a few drops under my tongue. I did and almost immediately felt a burning on my tongue. I was in his office for over 1 hour which normally causes issues for me when I did not take my chelation protocol to “protect” myself from the exposure to the mercury vapor in the air. My dentist is a mercury free dentist but some of his patients still have amalgam fillings and that causes vapor in the office. I was extremely sensitive to mercury after having my amalgams removed in May / June of that year.
As that evening wore on I kept waiting for the swollen tongue. It never happened. I never got it the next day either. I was intrigued by this product. The website for this product is zeolitebodydetox.com.

Gut Pain So Off For an Ultrasound.

2007-09-02T13:04:00.000-05:00

In August we decided to do an Iodine Loading test to check my saturation levels. This required that I take a 50 mg tablet of Iodoral in the morning and then collect my urine for 24 hours subsequent to this. When my results returned I was at a 66% saturation. The goal is to reach 90% so I still had a ways to go but I was making progress.

I continued on the chelation protocol until October 23, 2006. On this day I experienced the worst pain in my abdominal area. The pain was on both sides of my body over where my ovaries were. I had not had a menstrual cycle since April or May so I had no idea if it was related to anything. I contacted Dr. B and asked him for advice. He suggested that I have a pelvic ultrasound. So on October 26 I was scheduled for the test.

This ultrasound definitely did not hold the excitement that my previous two had when expecting my children. The technician was very nice and allowed me to view the images she was taking. I had both a vaginal and an external ultrasound. She was able to view both ovaries. Neither showed cysts or any form of abnormalities. This was incredible because just a few months earlier my right ovary had a cyst that was so large that my naturopath could feel it through my abdomen. The results were good and bad news. The good news was that there was nothing seriously wrong. The bad news was that we did not know what was causing the pain.

Dr. B thought that since one of the follicles was enlarged that I may have been ovulating and that this was the reason for the pain. He suggested that I increase my Iodoral dosage from 50 mgs to 75 mgs to see if increased saturation levels would help with the pain. I was having some intestinal upset so we also decided to discontinue the chelation to give my gut a break.

Mercury Again X2

2007-09-01T10:45:00.000-05:00

I was feeling better than I had in years and it felt so good. I was able to enjoy my family and do things with them. I continued to do well until late September when I returned to my dentist for a check up and cleaning. A few days after my visit my tongue swelled up so much that I could hardly keep it in my mouth. I told Dr. Brownstein that I felt like a puppy with my tongue hanging out. He believed that I had been affected by some form of bacterial infection so he sent some supplements to me overnight because I was leaving for Oregon in just 2 days. He suggested that I try taking Citricidal (grapefruit seed extract) and ADP (Biotics) which would both act as natural antibiotics. We did not want to add any prescriptions that would further stress my body out because I was still chelating as well.

I traveled to Oregon for 4 days and did quite well. The swollen tongue did not subside for several weeks. I had stopped the chelation while I was gone on vacation. I began to take the Heavy Detox a few weeks after I returned. It was only a matter of a day or two and my swollen tongue was gone. This made me suspect of the cause of it. Shortly after my son had an appointment at the dentist and when I returned home, later that evening my tongue swelled up once again. It was then that I determined that I must be reacting to the “mercury dust” in the office. Even though my dentist did not used mercury amalgams in his practice, patients that he saw had them in their mouth and when cleaned or worked on created vapor in the air. I had become extremely sensitive to mercury.

A week later my husband was replacing a fluorescent bulb in our laundry room when it broke. I had no idea that he had done this because he left for work before I got up. I spent some time preparing breakfast but felt funny. My head felt light and I began to have a feeling of a panic attack. I wondered where this feeling was coming from. It was a little later that my husband called home to tell me what had happened. It was then that the bells went off in my head. MERCURY! Fluorescent bulbs are filled with it. So I removed all the rugs from the laundry room and placed them on the back deck. I opened the doors and allowed the ventilation to push the remaining vapors out of the house. Just how toxic is this stuff I wondered? Why do we continue to use it in so many things when it is a known neuro-toxin? After taking some chelation and detoxification products the panic attack stopped.

Thyroid Cancer - My protocol

2007-05-14T15:12:00.000-05:00

From July's appointment with Dr. B I stayed pretty stable until October. I had the following protocol to follow.

Metagenics LactoViden - 1 before breakfast
Metagenics BifoViden - 1 before breakfast
Pregnenolone 25 mgs - 1 before breakfast
DHEA 2 mgs - 1 before breakfast
Metagenics Multigenics - 3 w/ breakfast & 1 w/ dinner
Metagenics Vit E - 1 with breakfast
Metagenics Calcium - 2 with dinner
Metagenics EPA/DHA - 1 w/ breakfast & 1 w/ dinner
Biotics Research Cytozyme AD - 1 w/ breakfast & 1 w/ dinner
Metagenics Meta I3C - 1 w/ breakfast & 1 w/ dinner
Metagenics ActiFolate - 1 w/ breakfast & 1 w/ dinner
Biotics Research - Bio-D-Mulsion (10,000 iU)
Optimox Iodoral - 25 mgs w/ breakfast & 25 mgs w/ dinner
Rhodiola Forte - 1 w/ Lunch
Ultra Clear Plus - 1 scoop AM / 1 scoop PM
Metagenics Renegan DTX - 2 / day
Biotics Research Sunflax Oil - 2 Tbs
Hanna's Mercurius Viv - 3 pellets AM / 3 pellets PM
Buffered C Powder - 2 sccops AM/ 2 scoops PM
Dragon River Herbals Cilantro - 3 drops AM/ 3 drops PM
Biotics Research Chlorella - 1 w/ breakfast & 1 w/ dinner
Heavy Detox (DMSA & Selenium) - 2 at bedtime
4 grains Armour Thyroid
BHrt Progesterone / Testosterone cream

It was a lot to remember and maintain. I felt like all I did was pop pills and make concoctions all day.

Thyroid Cancer - Beginning Chelation, 3rd Appt w/ Dr. B & DMPS Challenge

2007-05-13T21:26:00.000-05:00

Within about 2 weeks post removal I was feeling so tired and felt like I needed to think about chelating. I had been reading and researching what people used and how it was done. It seemed to be such a topic of controversy. So I placed a call to Dr. B and asked him. I explained that my joints ached, my brain was foggy and I just overall felt lousy. He agreed to let me start the chelation process. He told me that he would send me a few items to start taking.

When the box arrived from his office there were quite a few things in it. Included was a bottle of Heavy Detox (combination of DMSA and Selenium). I was to take 2 of these before bed. I also received chlorella. I took 2 of these per day. There was a bottle of liquid cilantro. I had to add these to hot water and drink it once a day. All of these were supposed to facilitate the detoxification of the heavy metals in my body. I continued to do this protocol until I had my next appointment in July with Dr. B.

On July 13th I had my 3rd appointment with Dr. B. I went to this appointment feeling amazingly well! I was on 4 grains of Armour, supporting my adrenals and chelating. Life was good. I had also lost 20 lbs. It was amazing. I had struggled with my weight for so many years and once my amalgams were removed the weight came off without trying. I was able to easily work out for 45 minutes everyday without major fatigue. Dr. B was very pleased with the progress I had made. He recommended that I do a DMPS Challenge test to determine the mercury load on my body. I winced as he spoke. I had read about the horror stories of others that had done this test and suffered neurological damage. When I questioned him on this he stated that they have literally done it on thousands of patients in the practice. After a bit of discussion I hesitantly agreed. I was taken to another room and given the injection of DMPS. I was then given a collection container and told to collect my urine for 6 hours. When completed it I was to put a sample in a smaller cup and ship it to the lab for analysis.

So I began the 2 ½ hour trek home. I didn’t do well after the injection. I left Dr. B’s office and went to Whole Foods Market to do some shopping as I normally do when I visit the east side of the state. When I reached the parking lot, I placed the groceries in the back of the van and slid into the driver’s seat. It was at this point that I was hit with a panic attack. I felt anxious about driving home and wished that I was already there. I didn’t know how I was going to deal with driving alone the entire distance. After a few minutes I was able to collect myself and start on my way again. I had to mentally “talk myself down” through the entire drive home. I stopped a few times with my collection bottle in hand to catch my urine for analysis. Oh the things I do to gather information. It’s a good thing that we don’t always know what our life holds for us.

The following morning and the next as well I woke up experiencing extreme anxiety. I had to mentally talk myself into getting up and out of bed. Once up I struggled with my emotions and would find myself in tears easily. I met my ND at the farmers market on Saturday morning (3 days after the DMPS injection) and told him how I was feeling. He said that it was quite common and that I should take some Metagenics Serenegan and also some Chloroclear to help. I took this for the next few days and it did improve my panic / anxiety symptoms

Thyroid Cancer - Removing My Mercury Amalgams and Root Canal

2007-05-13T19:49:00.000-05:00

On June 15, 2006 I began the removal of my 11 mercury amalgam fillings. Prior to this I had a test called the Clifford Reactivity test. It is a blood test designed to test your immune system against approximately 900 dental materials that could be used in the restoration process. When completed it produced a large booklet of information about what dental products I had sensitivities to and which were suitable. This would allow the dentist to place and use things that would not further stress my immune function.

We decided to do an aggressive removal process. We would remove one quadrant of my mouth each week for 4 weeks. We would follow the 7 day immune cycle as well. This meant that I would start removal on a Monday and the next week would have work done on Tuesday then the next week Wednesday and finally I would end on Thursday 4 weeks later. It has been determined that the immune system runs in 7 day cycles so it is harder on your body to do major work on the 7th day. As a Christian I found this interesting because so many things in the Bible are tied to the number 7 and it being the number of perfection.

I had 11 fillings to be removed. Two teeth had fillings that were too large so we opted to have them receive porcelain crowns. The rest would be restored with a composite material and on the final week I would have my root canal tooth removed.

My removal, though uncomfortable and sore at times went very well. Each week I had an adjustment from my Chiropractor / ND 2 days after each removal. This would open up the detoxification pathways to allow clearance of the toxins. I also had a lymphatic massage each week. This helped with the detoxification too.

The final week’s work was the roughest. I ended it all on June 8th. The root canal tooth was a bugger to get out. It took my dentist 3 hours to remove it. He also had to cut out an amalgam tattoo that had formed on my gum near this tooth. When the tooth was removed he discovered that there was a black sludge under this tooth. He also saw that there was necrosis of the jaw bone. He ground the bone down to clear out bacteria and any infection and washed it out with iodine. Knowing this now it all makes sense. I had root canal done in this tooth 2 times. It developed an infection shortly after I was diagnosed with cancer. If you read the book “The Root Canal Cover Up” all the pieces come together. I highly recommend this book. It will stop you from ever getting a root canal or encourage you to remove it if you are struggling with chronic medical conditions. For me with ever-present cancer markers I knew that this low grade infection / bacteria was a constant hit on my struggling immune system. Also Dr. B told me under no uncertain terms “Get rid of it”.

When we were done my dentist placed a magnet on my cheek at the removal site to encourage blood flow to the wound. I was pretty woozie when leaving the dentist. My dentist was concerned about me and made me promise that I would call him when I arrived safely. This was the beginning of a good relationship that would soon change my life in more personal areas. After removal I stopped at Walgreen’s to pick up some Vicoden. I really did not want to take drugs. That goes against everything I believe in but my dentist told me that I would need to have it. It was an anti-inflammatory so that would help bring the swelling down. I was also given SSKI (iodine) to flush my wound with.

I spent the next 4 days on the couch at home. I was achy and just felt overall like I had been hit by a truck. I slept quite a bit too. I knew that all of this had played a huge toll on my body but it was done and I could begin to heal from yet another insult on my poor body. But hopefully this would help me in the long run. It was a major expense – total bill was a little over $5,000 out of pocket. My insurance did not cover it after the initial $1,000.

My dentist was leaving for Spain on the following Monday after my removal. He called me at home on Sunday night to make sure that I was doing OK. He told me to contact his office if I had any issues and they would take care of me. He also gave me the name of another dentist that was covering his patients while he was gone if needed. It was so nice to have such a caring dentist. What a comfort to have a good dentist and doctor now in my corner.

During the next week I ended up coming into my dentist’s office. One of my temporary crowns was not working and I was in extreme pain when trying to eat. So I went in and one of his hygienists placed some de-sensitizer on my gum line to help. It did help. They also removed some bone pieces that were starting to come to the surface. I would be so glad when this was all over!

Thyroid Cancer - More Labs!

2007-05-13T19:46:00.000-05:00

On April 25, 2006 I had more labs run to check my thyroid numbers. As I continued to have fatigue it was time to see what was going on. I was on 3 ½ grains of Armour at this point. When the labs came back this is what my levels were:

TSH .02
FT3 421 (230-420)
FT4 1.2 (.8 -1.8)
Tg 19

My Tg was starting to come down. It was 23.3 on 3/23/06 so this was a good sign. We decided to increase my Armour to 4 grains to see if I could get over my hypothyroid symptoms. We also got the results of my 24 hour urine test to check my adrenals. Dr. Brownstein recommended that I add Cytozyme AD and Rhodiola Forte to my supplements to support my adrenals.

We discussed having my amalgams removed. I had visited a holistic dentist on 3/29/06 to discuss the safe removal of my 11 amalgam fillings and my root canal tooth.

Thyroid Cancer - My Second Appt with Dr. B

2007-05-12T22:57:00.000-05:00

My second appointment with Dr. B was on April 12, 2006. What a day it was. I was up at 5 am and couldn't sleep so I was tired. This had been going on for months. More specifically since I started Armour in January. I had this a year ago but it got better right before RAI and then it would happen off and on. To top my issues of the day off it rained the entire way to Detroit - all 2 1/2 hours. UGH!

I arrived right on time to my appt. Went back behind the door to the exam rooms where the bathroom was and when I came out there was Dr. B. He smiled and said "HI". Wow most docs are just running around not noticing anything. I sat in the waiting area for 2-3 minutes and then they called me back. Dr. B escorted me to the room himself. I had my sheet of questions ready and handed it to him and he said "OK but how are you feeling?" I told him better since I upped my dose and that I had cleaned my house like crazy but today was tired. I also told him that I believed my adrenals were worse. He immediately had me lay down - I got dizzy - He took my blood pressure and had me stand up and it dropped 15 pts. He said "That's NOT normal".

He sat down and said "I am sending you for a 24 hour urine test to look at your adrenals". I was to perform the test the next day so that he would have the results the following week. I think this has been a big issue for quite some time. I had been working on my adrenals for over 1 year now with my ND and it hasn't helped so now I was ready for the "big guns". I was glad that I got some answers as to where I really stood not just symptoms. I was so tired of the vertigo.

I had an appt with my Holistic Dentist to go over the plans to remove all my amalgams and my root canal tooth. I asked Dr. B what I need to do while this was going on. He told me that I was not to do anything with my teeth until I got my adrenal info back and we got them under control. I guessed that he didn't want to stress my system out while trying to heal.

We talked about the thyroid cancer and my persistent Tg number. He is hoping that the Iodine (Iodoral) will take care of it. If it does not he talked of upping my Iodine higher than 50 mg. I forgot to ask him where my iodine levels fell from his saliva and blood tests. I am guessing that it was also very low because of the dosing level I was started on. We will test my thyroid levels once a month. He told me that he will follow up with me each month to find out how I am doing between now and my next appt 7/13.

I love this doctor! As I was walking out the of the exam room he said to me
"Don't worry we will get you feeling well" and then he gave me a hug. *SHOCKER*
He is the nicest Dr. I have had next to my ND. I am so blessed to have him on my team. He listens and lets me tell him what treatment I am comfortable with, adding his experience and knowledge to it. He is well worth all that this is costing so far. There is hope!

Thyroid Cancer - Feeling tired & weird already

2007-05-11T22:56:00.000-05:00

I had started taking 50 mgs of Iodoral on March 20th. By the 23rd I was feeling bad. I had headaches and felt achy and tired. I didn't know what to think. Dr. B had given me a few tips to watch for if the iodine was effecting me negatively. I didn't know if that was it so I called him.

I remember feeling frustrated with this call and close to tears. I told him I didn't feel well and he told me to cut my Armour back from 3 grains to 1 1/2. I did not want to do that so I protested. I sensed a bit of frustration but in my gut I felt it was too little Armour that was my issue. These felt like hypo symptoms. So we ended up deciding that I would continue taking the 3 grains of Armour and get more labs run to see where I was. I remember almost bursting into tears through this conversation. I felt worse now on Armour than I had on Synthroid. Riding this wave of feeling good to feeling bad was so wearing. I just wanted it to stop. It felt like it never would. There are days were you just want to give it up and resolve yourself to the fact that you will never be "normal" again.

Thyroid Cancer - My phone consultation with Dr. B

2007-05-11T18:47:00.000-05:00

March 20th was my phone consultation with Dr. B. I was so eager to learn what the outcome of the 15 vials of blood would tell us. My appointment was scheduled for 8 am. I was to call into a special number and then would be connect with the doctor.

I had asked for the results prior to our phone call so that I could review them and also let my naturopathic doctor review them and have questions prior to my call. I could tell a few of the areas of concern because he had circled them.

I felt uneasy talking to Dr. B. His responses to my questions were short and kind of cryptic. That is hard for me. I am an outgoing and talkative person so those that are reserved put me on edge and I wonder what I did or said that may have made them upset with me.

I was definitely out of my comfort zone with this doctor. I figured it would take some time for him to get to know me and me him. It is so hard switching to yet another doctor when you feel so sick. I think it also makes you over sensitive about things as well.

We went over each test item and he allowed me to ask questions. He then explained what he was going to give me to take for each issue. I felt like I was pulling teeth at times to understand what was happening. Maybe it was the brain fog too.

The main issues were:

Low Iron
High Fasting Glucose
No Iodine detected
Low hormones
Low Vit D

I was told to take supplemental DHEA, Pregnenolone, Buffered C, Vit D, Iodoral (iodine / iodide combination) and Iron. I was also given a prescription for a progesterone / testosterone cream from a compounding pharmacy.

He ordered another fasting test to check my insulin & glucose levels. Oh joy I get to go drink that orange "goo". For someone that doesn't eat much sugar it is sickeningly sweet.

So there it was. The beginning of my new protocol. Why, I wondered, didn't anyone ever look at me as a whole person before? It seems insane that so many Dr's had seen me and blasted me with RAI over and over never looking and how my body was doing. When I complained of an issue, along came another drug to "fix" it. I believe that your body can heal with God's help when given the right building blocks. It was just a matter of figuring it all out and that is where a good holistic doctor is invaluable!

Thyroid Cancer - Another ND Appointment

2007-04-30T13:17:00.000-05:00

I had another appointment with my Naturopath / Chiropractor on the day following my appointment with Dr. B. I was eager to share with him my excitement over finding a doctor that treated his patients the more natural way, using Armour and nutrition to heal them - not chemicals and radiation. What a refreshing change! He was also someone who finally understood the thyroid more than I did. I was tiring of educating my doctors on my condition. I basically needed them to prescribe drugs and order labs up unto this point.

I enthusiastically shared that Dr. B had eased my fears of using Armour thyroid with a diagnosis of cancer. My ND still was not on the same page with me but by this point I had gotten to a comfort level with myself. It was me who was risking my health - whatever it was and if it really was real. Dr. B has used Armour Thyroid with other Thyroid Cancer patients and had not seen any issues. I think the key is keeping the entire body in balance, free of toxins and strengthening the immune system.

Thyroid Cancer - My Appointment with Dr. B

2007-04-30T08:04:00.000-05:00

Thinking back on this day it was truly a whirl wind of events. I had been working out in the basement as I normally do and had gotten a late start. I was in my kitchen starting to cook my breakfast when the phone rang. It was 9:45 am. I noticed on the caller ID that it said CHM. I didn’t think much of it because the previous evening I had gone online and had ordered all of Dr. B’s books in an effort to learn more about him and how he practices before my appointment with him. I figured that there was some issue with my order. The woman on the other side, Sue, told me that there had been a cancellation with Dr. B for that day at 5:15 and was I interested in coming in. I remember having a stunned, excited and anxious feeling all at the same time. Of course I wanted to come! Then my thoughts turned to Sierra. I had to find someone to watch her for me. I explained this to Sue and she stated that she would continue to call and I could call her back. I asked what this meant and she said that she was going to continue to call other patients that may want the appointment to see if she could fill it. I explained that I did want it but needed a sitter for my daughter. She told me that she would give me 15 minutes to get a sitter. My heart pounding I hung up. The adrenaline was really running. I quickly dialed my mother’s phone number praying she was there. She was just heading out to get her haircut and I had caught her. I explained the opportunity and she said that she could be there.

I had so much to do. I had my medical records all together from my appointment with the endocrinologist at the University of Michigan so all I had to do was grab that information and go to Staples to copy it. So I packed up my daughter and we went to Staples. It was a cold rainy day. We got out of the car and headed inside to make the copies. When we came out I went to start my car and had problems getting it started. “Oh No I thought!” I had been having issues off and on and today was not the day that I needed this. I called my husband and luckily he was in town. I was able to get my car started but he agreed to come home and swap cars so that I could take his to Detroit and not worry about being stranded.

At 2:15 pm I was on my way to my appointment. I was suffering from sheer exhaustion and I am sure my energy used to get to the office was pure adrenaline over the excitement to finally see a doctor that I believed would help. It took me a little over 2 ½ hours to arrive at CHM. I decided to wait a few minutes in the car and read my book. At around 5 pm I entered the office. I had filled out my new patient forms prior to this visit so I had just a few things to complete. I was armed with my records, list of supplements and recent tests that had been run by me and my ND.

I didn't wait long at all. The nurse called me back and took my weight and height and I was ushered into an examination room. The room was decorated with artwork from Dr. B’s daughters. I thought that was a nice touch and symbolized to me that he loved his family. On the counter was a relaxation “waterfall”. The room did not impress me to be very “medical” like many others I had been in. Maybe that was by design I thought. It created a sense of peace. I needed that! The nurse took my blood pressure and pulse and told me that the doctor would be with me in a few moments. I thanked her and she left.

As I sat in the room waiting I thumbed through the paperwork I had brought with me. I hoped that everything I needed was in the package I had quickly assembled. I remember shaking from the cold. My temperatures were so low and I found myself constantly cold. My body ached and I had vertigo. My tongue had also been burning since August and that was annoying. I hoped that this doctor would have some answers.

I couldn’t help but wonder how a doctor feels when they acquire a patient like me. I had a long history of seeing doctors only to fire them and move on to the next one. This pattern sets precedence that maybe “I” am the problem. My hope was that the detailed records I had brought would send a totally different message to him.

Dr. B entered the room. I remember thinking that he looked different than the pictures I had seen of him. He sat down in the chair next to me. I handed him the 3 ring binder of my records. He placed it on his lap and pulled out a sheet to take notes on. He asked me to tell my story. So I began to unload the story of how I had been diagnosed, the tests that had been run and the outcome of each. I told him how I had been through three rounds of RAI and had reached the maximum lifetime dose. I told him that my last visit to my endocrinologist had shown an increase in thyroglobulin and that my doctor had suggested that I start thinking about external beam radiation. I told him of my symptoms and that none of my doctors until my Naturopathic doctor believed that they were something to be concerned about.

These were my symptoms:

Achy Muscles
Brain Fog
Joint Pain
Eczema
Slow Hair Growth
Slow Nail Growth
Anxiety
Depression
Mood swings
Irregular Periods
Intolerance to Noise
Low Stamina
Feeling Cold
Cold Hands & Feet
Insomnia Sleep Disturbances
Dry Hair
Dry Skin
Need for Naps
Inability to Concentrate
No LIBIDO
TMJ
Vertigo
Carpal Tunnel
Spider Veins
Chronic Athletes Foot

After giving my list of symptoms to him I explained that the depression and anxiety were the worst. I felt anxious with panic attacks for one week before my period and then for the week after I was depressed. I told him that I had mentioned this to my endocrinologist and he told me that this was a “female” issue and that he did not deal with that. I explained that I went to my OB/GYN and asked him to look at my hormone levels and was told I was fine but was given an anti-depressant to help. Dr B then interjected – “You were given Prozac right?” I said “No Zoloft”. He sighed. I told him that I had only taken 1 pill and then decided that this was not the answer to my problem. When you have been raised in a Chiropractic household you know in your gut that drugs are not the answer.

When I finished my story, he politely asked me if that was all I wanted to tell him. This is very different for me. The doctors I had experienced rammed their views down my throat and didn’t’ want to listen to what I had to say. I told him “yes”.

He asked me to lie down on the table. When I was in the supine position I immediately felt the vertigo. I placed my hand on my head and groaned a bit from the wave of nausea it gave me. The room began to shake. He asked me what was wrong and I told him. He grabbed the blood pressure cup and took my BP. He then told me to stand up and took it again. My BP dropped a bit when I stood up. He told me to lie back down. Adrenals, I thought.

He explained that he would be pressing on my arm as I held it up and I was to resist him. I chuckled inside because my father had been doing muscle testing on me since I was a small child. I explained that I was very familiar with it due to my father and knew what to do. He pressed on various points on my chest. He checked my abdominal area along with my intestines. He told me I could sit back up and then did the normal “neck check” and asked me to open my mouth. I was about to be introduced to the world of toxic amalgams. He took one look and said “Wow there is a lot of mercury in there.” I asked him how he could tell. Looking back I laugh at this now because it was obvious but I knew so little. He responded with “Because you have a lot of fillings.”

He began to fill in the lab slip. He said that he was going to run a large set of lab tests to see what was going on. I was so relieved to hear this. I had been asking my doctors if there were more tests we should do to look at what this radiation had done to me. Not one of them thought more testing was warranted yet I felt worse and worse each year. Something was wrong.

He spent a fair amount of time with me. It was supposed to be 1 hour but it went over. I guess that’s a good reason why being at the end of the day is better. It was Valentines Day and I couldn’t help but wonder what his wife was doing on this day. I suspect that she was used to it.

He asked if I would be willing to be part of a clinical study for thyroid cancer. I said “yes I would be willing to do this”. I believe this was related to iodine but it is a bit fuzzy now. So much happened on that day and I had a lot to remember. He told me that a nurse would return to the room and draw some blood. He then instructed me to spit into a cup and showed me the level I needed to attain. He apologized for asking me to do this explaining that most women have issues with it. I said that I did not mind. After all I was looking for an answer to my problems – what was the big deal in spitting in a cup?

During this process my brain fogged over and I thought he wanted to get a urine sample. So I took the cup with me and headed to the bathroom. When I returned I gave it to the nurse. She looked strangely at me and asked what it was for. I told her Dr. B wanted it and I asked where the container was that I needed to spit into. She told me that she would ask the doctor. As she returned to the room I could hear both she and Dr. B laughing. It turned out that I was not supposed to pee in the cup but spit in the cup. I was so embarrassed! I guess I missed part of the instructions. He was good natured about it and that made me feel better.

After several minutes of struggling to fill the cup with saliva I was able to complete the task and was ready to be on my way home. It was 7 pm as I emerged from the room into the hallway. Before I knew it, Dr. B met me in the hallway and asked me if I was OK and if I had anymore questions. I told him that I was fine (I knew I had more questions but I was feeling a bit overwhelmed) and he told me that he would walk me to the checkout counter. I was so impressed that he had stayed the entire time. The entire visit was so personal which was so much unlike the doctors I had experienced on other occasions.

At the counter I met up with Sue – the one who had called me to come in for the appointment when there was a cancellation. I asked her why she had chosen to call me. She explained that she was sitting at her desk and saw a post-it-note on her desk. The note had the last name of “Vuist” on it. It was in reference to a doctor that had called wanting to talk to Dr. B about one of his patients that needed to see him sooner than 6 mos. She said that they could not match the name to anything they had. When she went to look at the waiting list she noticed how close my last name was to the one listed on the note and thought that it was probably the same person. So she picked my name off the list to call me. She also said that she remembered the conversation we had when I called to make my appointment. She was originally from a city near mine and was familiar with where I lived. This came up when discussing the time of my appointment as I explained having two small children to get going in the morning and needing a sitter. We had a good conversation about why I wanted to get in to see the doctor sooner than 6 mos. We discussed rising cancer markers and my fears after 6 years of limited success. I remember her to be very sympathetic. I believe that this entire story was perfectly orchestrated by God. I cannot imagine how much worse I would have been if I had waited 6 months to start my treatment.

Thyroid Cancer - I have a new doctor!!!

2007-04-12T15:32:00.000-05:00

This is where my story takes a turn for the better. I thank God daily for the blessing of a doctor like Dr. B. This is the beginning of hope for the first time in my life since my diagnosis. It all begins on February 14, 2006 – Valentines Day.

The following is an e-mail sent to my friends on the day of my first appointment.

I am so excited ladies! Your prayers worked again. The Bible says the fervent prayers of the righteous availeth much. This is so true in my case. As I told you I have been trying to get in to see Dr. B - the doctor that specializes in Thyroid issues. I ended up making an appt for August 16th as this is the closest appointment they had. I asked if I could be placed on the waiting list and they said “sure, but there were 20+ other patients on the list that were waiting as well and some were terminal and NO ONE cancels due to the $50 deposit they place”. Given that I have read Joel Osteen’s book called "Your Best Life Now" I knew that I could pray for God's favor as he states we are children of God and can expect that people will do things for us that are good gifts from God and they have no idea (the people doing them) why they are doing them for you. So I prayed God's favor asking that I would be granted an appt sooner than August. Well, today I got a call and they asked if I could come TODAY at 5:15!!!! She told me that she needed an answer and that she would continue to call others while I looked for a sitter for Sierra. I convinced her to hold it for 15 mins and was able to get my Mom to come and stay with her. I called her back and I have an appt. She said when she saw my diagnosis she *knew* that I probably needed to be seen sooner. WOW GOD IS AWESOME!!!

So pray for safe travel for me. I am leaving at 2:15 - it's a 2 ½ hour drive but I don't want to get stuck in traffic anywhere or have something go wrong.

So that is my praise for the day!

This is my update to friends post visit to Dr. B. I was at an all time high for the 6 years of sickness.

HE WAS AWESOME!!!! I loved this doctor. What a blessing he was. I just got home - what a long day. I am beat so this will be quick. He was patient and listened to my story shaking his head - I think he was inside disgusted with the care I have received. He is doing an iodine test with blood and saliva and then gave me a lab slip for more tests. 12 VIALS WORTH!! I think he will know every hormone level in my body along with all other levels by the time he is done. But do you know what? Then we will have the answers as to where I really am. He was very knowledgeable but most of all he said Armour (my thyroid meds) was absolutely fine for me. *whew* that alone was worth the trip. His office visit was $375 and who knows what my labs will be but if it makes me well I don't care how much it will cost. He said exactly that to me "We won't worry about anything right now until we get you well". I finally have a doctor that wants to try to help me get well and not just give me another pill or poison me. He also said that my ND sounded like a smart man with the care I had gotten so far and that he would be open to working with him to help me since I am 2 hours away from him. This is another blessing.

So God is good all the time and all the time God is good (as my pastor says). But tonight it has more meaning as I have struggled to find a doctor to help me for 6 years. I will rest well tonight.
I have an appt with my ND tomorrow AM for an adjustment and to tell him the good news that I got in to see them. That story on how I passed all the others on the list is a God thing too. I am amazed at his awesome grace in my life. I am looking forward to the future. I will see Dr Brownstein again on 4/12 but will have a phone consult with him in approx two weeks when all my labs were in.

Ok I am exhausted - 4 1/2 hours on the road and 2 hours in a Dr's office did me in. Later!

Thyroid Cancer - Synthetic Hormones Don't Work!

2007-04-10T21:51:00.000-05:00

I visited my Naturopathic doctor on February 6, 2006. We discussed why there seemed to be so much negative feedback from the endocrinologists regarding Armour and neither of us could come up with any reasons- even through our research. My ND decided to speak with a biochemist friend of his. The response was not what I wanted to hear. He stated that this man had determined that if a patient was suffering from an autoimmune disease then they should not ingest any form of glandular products as this may initiate an immune attack thus forming another cancer – usually in the colon. After some talking he and I decided that I would try the Synthroid / Cytomel combination that my endocrinologist had suggested and see if I felt any better. I was not excited to do this because I had begun to feel better than I had in years while taking the Armour but the thought of another form of cancer concerned me too. So I started the next day on .150 mgs Synthroid and 50 mgs of Cytomel.

My trip back into synthetic hormones was nothing short of a nightmare. I went off Armour for 1 1/2 weeks and on the Synthetics. I FELT AWFUL!!! Within 3 days my body ached as did my joints. I could hardly go up and down the stairs in my house without extreme pain. I felt so bad that I stood in my kitchen (3 days after starting on it) and cried wondering how I could live like this. I had to have my children go up and down the stairs to get things for me. I continued to stay on it for 10 days and then one morning I had just completed my workout and realized I needed to go downstairs to the freezer. I started down the stairs and I got so dizzy that I lost my balance and fell 3/4 of the way down and hurt my back. I sat on the stairs and cried, asking God to show me what I should do. An incredible peace came over me and I just felt like I needed to go back on the Armour despite my ND’s concerns (and mine for that matter) - which no one could validate scientifically and I was tired of “guessing” about what was the right thing to do. On that very day, I saw my ND who is also a chiropractor and he checked my ears to discover they had filled up with fluid.

After being back on Armour for 1 week my brain fog cleared up and I was starting to be a happier person. My joints still ached a bit but not nearly as bad as they had on the synthetic combo. After 1 week back on Armour I saw my ND and one of my ears was clear again and the other was much better. I was pleased with my progress in just 1 week. I looked forward to what was to come for the first time in 6 years.

Thyroid Cancer - The Final Visit to the Endocrinologist

2007-04-07T19:01:00.000-05:00

I discovered that I could order my own labs from a website online to determine my Free T3 & Free T4 levels along with the TSH. I ordered these so that I could have my results prior to my endocrinologist visit. I wanted to be armed with information. So on the day that I had my blood drawn for the online test I also had blood drawn for my doctor’s orders. They were from two different labs but the results were indicative of my suspicions. I was low in Free T3 and this was the main cause my fatigue. Why was I the one to find this and not my doctor I wondered? The chart below shows the numbers. I was at the bottom of the range.

These are the results of the tests I ordered:

TSH 1.515
FT3 (230-420) 230
FT4 (.8-1.8) 1.3

I decided that I would not tell my endocrinologist that I had started on Armour just 3 days earlier. My intention was to tell him how I had been feeling and see what he suggested and then if I did not get a satisfactory answer I would ask him for Armour and produce the lab test I had run.

The following is an update I sent some friends after my visit to the endocrinologist.

To say that this visit was less than enjoyable would be an understatement. Many ask why I stay with him and it is because there is no one in Grand Rapids right now that has the knowledge of Thyroid cancer that I need to monitor my numbers. I have my new DO and ND to manage my Armour but there is still the portion of the cancer and neither of them understands it to the level I need. I am seriously considering calling Dr. B's office and getting on his waiting list. I don't want to endure more office visits like this one and need some more definitive answers.

First, he breezes into the room and shakes my hand and exclaims "Well we had you on .175 mg of Synthroid and you were experiencing hyper symptoms (TSH was .024) and we reduced your dose to .150 mg but now your TSH is WAY too high so we need to bump you back up to the .175 mg dosage again." EXCUSE ME???? I felt bad on .175 mg and .150 mg isn't working so let’s just put you back where you felt bad and not think about options?? UGH!! I didn't say this but thought it. This is the point where I interjected that I wanted to know where my Free T3 numbers were so I had them run. I produced my lab slip for him. I told him that I had been studying T3 and how some people don't convert T4 to T3 well. He went on and on about how it wasn't true that they had done lab tests on dead babies and had found T3 in them. I said "WHAT???". I said “Listen again - I didn't say that I didn't make T3 at all but that I could be someone who didn't convert it WELL enough to give me what I needed.” He quickly changed his tune and said "Oh I know what we can do. I'll leave you on the .150 mg since you seem to feel well on that (never asked me how I was feeling though just assumed that since I hadn't called I was OK) and we'll add some synthetic T3 - It's called Cytomel". UGH! I swear he thinks I am an idiot and it is so patronizing! I already knew his protocol before I got to his office. So at this point I interject with "Can I try Armour?" You should have seen how fast he looked up from his paper that he was writing on. The entire time he was telling me what we were going to do he couldn't take the time to look at me prior to this. He exclaimed "ABSOLUTELY NOT". I asked "Why not?" This pushed his buttons as he physically began to shake. I got the "Because it isn't for you." So I pushed further - "Why not?" Then he gives me the canned answer ( I think they get this in Endo school) "Because it isn't stable." I said "What do you mean?"

I swear this man was about ready to strangle me for asking questions and questioning his authority but I pressed on. He said “Because it is from a Pig and you don't want to take pig hormones." I asked why not again. He then said that they have a varying dosage amount in each pill because they come from many different pigs at many different slaughter houses and there was up to a 20% variance (+/-) in the potency." I know this isn't true so I challenged him again. I asked if it was FDA approved and if they required potency stability and he said "Yes but they allow a 20% variance". He must think I am a real idiot to believe that they would allow a swing of 30 mgs either way on a 150 mg dose. Then he went off on the fact that the synthetic T4 more closely mimicked the human T4 and again reiterated that I didn't want to put a PIG into my body. Then he went on to tell me that they used to make it out of Bovine thyroid until they became concerned with Mad Cow disease. His credibility very quickly began to go down the tubes with me. I then told him that I had made connection with other thyroid cancer patients who where on it and feeling quite well. At which point he told me that I couldn't. I asked why again and he said because I still have a tumor. HUH? I do? Well my Tg level was at a 22 again. *sigh* which was up from an 8 in August. I am sure it is due to the change in my TSH numbers but I will get to that.

I asked him what would happen if I took Armour. At this point he about lost it. He told me my tumor would spread and metastasize. He added at the end of this discussion that now that he was "supplementing" with T3 the free T3 test would no longer be a valid test to run to see how I am doing. Is this true? I told him that I was having problems losing weight working out 5-6 days a week. Do you know what he said? "Are you moving?" I said "What?" He said it again. I said "Can you explain what you asked?" He said are you getting any exercise? HELLOOO!! Did I not just say that I couldn't lose weight even with working out? He said the Cytomel should "fix it".

I left his office and went out to my car and cried. It is very hard to have a Dr. tell you that you will die of cancer if you take Armour - whether you believe it or not. I need a new solution. My comfort level isn't with my new DO in managing this cancer "watc.". He is just my way to Armour. I am so frustrated and as I told others. If I had to do it again I would NEVER have my thyroid ripped out!

Thyroid Cancer - The Big Synthroid Lie

2007-04-06T17:02:00.000-05:00

I was to visit my endocrinologist for a follow up on January 19, 2006. I had been researching the usage of Armour and had not been able to find any scientific evidence as to why Armour would not be good for thyroid cancer patients. The information I had gathered was that cancer patients needed to maintain a TSH level of .1 or below. The websites I visited sponsored by endocrinologists spouted information on how the potency was not consistent therefore it was not reliable. There was no information so substantiate these claims either. A review of the FDA website revealed that Armour had bee recalled only one time in over 100 years of usage.

From the FDA's Website:

Enforcement Report
The FDA Enforcement Report is published weekly by the Food and Drug Administration, Department of Health and Human Services. It contains information on actions taken in connection with agency Regulatory activities.

May 11, 2005
05-19
RECALLS AND FIELD CORRECTIONS: DRUGS - CLASS II
_______________________________
PRODUCT
a) Armour Thyroid (thyroid tablets, USP), 30 mg.,
Rx only, packaged in 100 tablet bottle containers.
Product label contains NDC 0456-0458-01 (FOREST).
Recall # D-217-5;
b) Armour Thyroid (thyroid tablets, USP), 60 mg.,
Rx only, packaged in 100 tablet bottle containers.
Product label contains NDC 0456-0459-01 (FOREST).
Recall # D-218-5;
c) Armour Thyroid (thyroid tablets, USP), 120 mg.,
Rx only, packaged in 100 tablet bottle containers.
Product label contains NDC 0456-0461-01 (FOREST).
Recall # D-219-5.
CODE
a) Lots 034052, 035064, 035066, 036171, and 036456;
b) Lots 034053, 034488, 035065, 035997, 036500, 040423;
c) Lots 034051, 035067, 035995, 035996, 036499, 042018.
RECALLING FIRM/MANUFACTURER
Recalling Firm: Amerisource Health Services, Columbus, OH, by letter on April 12, 2005.
Manufacturer: Forest Pharmaceuticals, Inc., Earth City, MO. Firm initiated recall is ongoing.
REASON
Subpotent: Product may not maintain potency throughout shelf life.
VOLUME OF PRODUCT IN COMMERCE
58,544/100 tablet bottles.
DISTRIBUTION

END OF ENFORCEMENT REPORT FOR May 11, 2005
###

After finding the Armour recall information I decided to look into the track record of the T4 only synthetic hormones such as Synthroid. I found a less than stellar track record. My research revealed that in August of 1989, Knoll Pharmaceuticals recalled 21 lots of Synthroid for reasons of low potentcy during stability studies. In 1991, Knoll recalled 26 subpotent lots of Synthroid and in February and other lots in June. Investigations for a Synthroid manufacturing plant led to citations for deviations from GMP: two in April 1991, and nine in December 1992. Knoll also distributed sub potent Synthroid during 1990, 1991, and 1992.

In a release from the FDA they summarized:

"The history of potency failures ... indicates that Synthroid has not been reliably potent and stable. Furthermore, Knoll's use of an overage [in potency] that has not remained consistent over the years suggests that Synthroid has stability, potency, and consistency problems. Although you [Knoll] claim that Synthroid has been carefully manufactured, the violations of current good manufacturing practices discussed above indicate that Knoll has not always manufactured Synthroid in accordance with current standards for pharmaceutical manufacturing." 1

As I began to dig even deeper I found that the apparent reason for the endorsement was the strong financial relationship of the makers of Synthroid, Knoll Pharmaceutical, with the American Association of Clinical Endocrinologists (AACE). The AACE website until the recent redesign referenced the support of Knoll Pharmaceutical. One the leading endocrinologists in thyroid cancer research at a university who touts Synthroid as the only solution is also being funded by Knoll Pharmaceuticals. Is this is conflict of interest? I think it is. Many patients are left sick and debilitated for the sake of money. I am a person that relies on good solid scientific research and I was not finding anything to warrant the warnings about Armour.

During this time of research I learned of the importance of Free T4 and Free T3 levels in the body. I had been taught since my diagnosis that the only relevant number was the TSH – Thyroid Stimulating Hormone. As I read more I learned that the T3 hormone was the metabolic hormone. This was the active form of the hormone that is converted from T4. When an individual has a normal functioning thyroid approximately 20% of the needed T3 comes directly from the thyroid and the rest is converted from T4 as necessary. What was my body doing I wondered since I did not have a thyroid. Could this be the reason why I struggled to lose weight and stay warm, among other things?

1 Food and Drug Administration. Letter to Knoll Pharmaceutical Company, April 26, 2001.

Thyroid Cancer - Getting uneasy so I am researching

2007-04-04T21:02:00.000-05:00

I continued to struggle with fatigue after the 3rd round of RAI in May. It was now December 2005 and I was tiring of the continued fight to regain my life. It seemed that no matter what I did or how many vitamins I took or what changes in lifestyle I made I couldn't get on top of it.

My naturopathic doctor suggested that I may feel better on Armour Thyroid medication. I had been on Synthroid for 6 years and had bounced up and down on the dosages. There seemed to be no good dose. I began my quest to find a doctor that would prescribe it. This proved to be no easy feat. I found a Yahoo e-mail group that discussed Armour thyroid and how it had helped them to feel worlds better than when using synthetics. I was interested. I began asking questions and within a very short period of time I decided that I had to get on Armour no matter what it took. I needed to try something different.

I found a DO in a city near my home that practiced integrative medicine. I had decided that instead of a mammogram I would do a thermography and not have the added issue of more radiation – no matter how small they tell you it is. I didn’t want any more. So on January 16, 2006 I visited this new doctor. He was nice and spent time with me reviewing my medical history. He asked why I was visiting him that day. I told him that I wanted to get a thermography because I had previously had 3 mammograms for a spot on my right breast that was being watched. I also told him that I had been diagnosed with thyroid cancer and had been on a synthetic thyroid hormone for 6 years and never felt well. I wanted to switch to a natural thyroid hormone to see if it would help. He agreed that this would be a good thing to do. He asked if I was on iodine and I said “no”. I didn’t understand why this was important and didn’t ask. I was to learn more about this just a few months later. We did a quick calculation and decided to start my dosage out on 2 grains of Armour. I had been on .150 mgs of Synthroid.

As part of my office visit he did a physical breast exam. He mentioned to me that I had 3 fibrous masses in my right breast. This did not make me happy. What else would I be inflicted with I thought. I decided that I would talk to my ND about this the next time I saw him and find out what he thought. After the exam I was taken to a room for the thermography. This would prove to be quite a new adventure. I was instructed to remove my top and then told that I must stand with my hands on my hips so my arms were away from my body for 10 mins. This would be a treat I thought. I should have brought some music. So there I stood. Luckily I had brought a book so I looked at that while waiting. The nurse returned after 10 minutes and told me to stand on a spot on the floor. She pointed a camera at my chest and proceeded to take images of my chest. After taking a few images she took me to the back room and ran the faucet with cold water. I was instructed to place my hands in the cold water for several minutes. This forces the blood to move toward the core of the body. After doing this I was taken back to the room with the camera and the nurse took several more images. When we were done I could get dressed again. The images would be sent to a company in Detroit that reviews and reports on the results. I paid for my visit and left. On the way home I stopped at Walgreen's to pick up my first prescription of Armour.

The following I entered my kitchen as I normally did. I picked up the bottle of Armour and began to think about what taking it would mean to me. I had been told for 6 years that taking this drug would make my cancer come back. Each time I asked the doctors why I could not have it I was told that it would not keep me suppressed. This is very important to thyroid cancer patients. TSH is the hormone that feeds the cancer. I remember taking the pill into my mouth and thinking “Well here we go”. At this point I had little to loose. If things started to go wrong I could always go off the medication and take the Synthroid again. I knew I didn’t feel well. After all the definition of insanity is doing the same things over and over and expecting different results. I was definitely at that point.

Thyroid Cancer - Consult with the Endocrinologist at Univ of Michigan

2007-04-04T19:07:00.000-05:00

My appointment with the endocrinologist was set for September 19, 2005 at 2 pm. It was a woman and from what I had read she had a lot of credentials. She seemed to be well thought of so once again I had high hopes that I would finally get some answers as to while I continued to have high Tg after 3 rounds of radioactive iodine. Since I had reached my maximum lifetime dose of RAI I was also looking to line up a team of "experts" just in case I had a recurrence. My Tg had been 8 at my August appointment but you never know.

My mother agreed to make the trip with me on the day of my appointment. That was nice because it was a 2 hour drive to the University Medical Center building. It's nice to have another set of eyes to help you find your way as well not to mention the moral support. I went armed with my medical records in a 3 ring binder and my nuclear medicine scans from each RAI treatment.

I met with Dr. D and she was very nice. She seemed interested in my condition and listened to what had transpired through my treatment. She did a physical neck check and we talked for about an hour & 1/2. At one point during my appointment she left to take a call. She was gone for about 1/2 hour. Now I felt that was incredibly rude! She appologized when she came back but still. I made an appointment to see her during that time. After much discussion she told me that she would review the records I had brought and would issue her opinion in 1 week. I thanked her and my mom &amp;amp;amp;amp;amp;amp;amp;amp; I left.

On the drive home my mom & I talked about what she had said and in some ways we had learned a few things but in many ways it was the same thing I had been hearing from the last two endocrinologists I had been seeing. I wondered if there were any answers. So I continued to work with my naturopath and kept my appointment for January with my current Endo.

After 6 weeks had passed I received an envelope in the mail from Dr. D at the Univ of MI. It was 5 weeks past the promised date. By this point I had decided that I would not be seeing her for anything further. I had called on two occasions during the 6 week time asking about the status and each time was told it would come the next week. I was not impressed.

I tore the envelope open to see what had been written on the 3 pages of Out-Patient Notes. The first page & a half described my treatment history. The next 3 /4 of a page was a description of my current health status at the appointment and what vitamins I was taking. This was a major disappointment. I knew all this information and now I had gotten 2 1/4 pages describing my life. The final 1/3 of the last page of the document was the following:

My impression at this time is that Stephanie B. has:
1. Iatrogenic hypothyroidism
2. Thyroid cancer, papillary (1.8 cm) with nymph node involvement
3. Status post thyroidectomy x2
4. Status post radioactive iodine ablation with a total of -300 mCi per day of radioactive iodine.

We had a very long discussion regarding her care. The patient requested that I review her chart, which took me some time to complete, and I have done this, but it is still unclear whether her intention is to follow up at this institution with her thyroid or just have another opinion regarding her thyroid gland treatment.

She had quite a bit of radioactive iodine ablation and the risk of side effects/toxicity from radiation therapy increases with repeated administration.

What remains unclear is why she has persistent thyroglobulin levels, despite a fairly high dose of radioactive iodine as well as surgery. Despite these therapies, she continues to have measurable amount of thyroglobulins. We discussed this issue.

At this time, if indeed she does intent to follow up in the clinic here, I would recommend referral to the Nuclear Medicine Division where they administer radioactive iodine and complete further therapy. She may benefit from other imaging modality such as a thyroid ultrasound, CT/MRI of the neck or PET scans. In the interim, she should maintain a suppressed TSH.

So there you have it. Again no one knows why this continues to happen but they are all too happy to run more nuclear scans on me. No thank you. It felt like a wasted trip. At this point I did not know now much this visit would cost. I was told anywhere from $350 - 400. They also told me that my insurance would not cover it because it was out of network. It turned out that it was in my network and I paid $15.

Thyroid Cancer - 3 1/2 mo Post RAI Follow Up - Looking for a New Doc Again!

2007-03-25T21:34:00.000-05:00

On August 22, 2005 I went to have my blood drawn for my follow up visit with my endocrinologist. My appointment with him was on August 31, 2005. This was over 3 ½ mos after the administration of 250 mCi’s of Radioactive Iodine. I am not sure what the medical community would think about this but I think this is horrible. I would ask him about this at my appointment.

I arrived at the office on August 31 for my follow up. They weighed me 168 lbs with a BP of 116/78 and a pulse of 104. My TSH was .16, FT4 1.1 and Tg 8 with no antibodies. He told me I was doing well. I told him I didn’t feel well. I asked him why I had not been able to talk to him before the ablation when I called. He gave some excuse about the nurses handling things. I asked why it was over 3 mos before I got to see him after the ablation. He told me he was busy. WHAT?? I pushed further. He told me that there were people that were scheduling 5 mos out and he had to balance them all. I asked why he didn’t close his practice to new patients if he couldn’t handle the ones he had already. He told me “They need me”. OH MY GOODNESS!!! I must be chopped liver because I think I needed him a few times when I wanted answers or help to feel better and he brushed me off on his nurse. He finally got frustrated when I asked for copies of the entire treatment and told me that I should probably go see someone else. I said nothing, got my copies, paid and left. Again I returned to my car and cried. This is not health care I was experiencing. There was no “care” here. I would go for labs, they would run them, take my weight, blood pressure, feel my neck and if I was in their “range” send me on my way after paying a $15 co-pay. It didn’t matter how I felt or what symptoms I had. My range was good so therefore there is no issue.

I took my daughter into see her pediatrician the same week. The Dr asked me how I was doing. He had been with me through the entire process since I was diagnosed 4 mos after my son was born. I gave him my story and he told me I was getting horrible care. His scheduler helped me get an appointment with an endocrinologist at the University of Michigan for September. I was excited and hopeful that this doctor would have some answers as to why my thyroglobulin continued to rise after so many ablations.

In anticipation of my trip to the University of Michigan I began to visit all the hospitals that had done scans and ablation therapies. There were 3 in all. I checked out the films from all the radiology departments and made copies of the documents in the files. It was at this point that I found documents that had been omitted from the information given to me by my ENT. I am assuming that he had copies because many were communication from his office to the radiologist

Thyroid Cancer - The Days Following RAI

2007-03-20T21:37:00.001-05:00

For the next day I just relaxed, watched movies and rested. My children would yell to me through the door from the hallway and I would talk to them that way. My husband and I would talk on our cell phones. Thank goodness for the “in network” feature so we did not use our minutes. It was weird doing this just two floors away.

On Wednesday, May 25 I wrote the following to my ND.

Hi Doc -

Just wanted to check in with you to let you know how I am doing. I did relatively well the first day but when I hit the 24 hour marker yesterday after the administration of the RAI I started to feel pretty bad. I know the first 48 hours can be the worst but didn't anticipate it would take 1 day to kick in. My body temperature runs from hot to cold all day long. I have been vomiting off and on since yesterday 6 pm. I just took some toast with butter and it has stayed down. Water isn't sitting well but Apple Juice does so I am drinking that to try to stay hydrated. I am not sure if brown rice water would help in this situation since it isn't the flu. My suspicion is that it is just the toxins coming out through my saliva and entering my stomach. It seems to be worse after I have slept for a few hours so I am wondering if it just pools in my stomach during those hours. I am sleeping all but about 8 hours per day so my naps are 2-3 hrs at a time. I am exhausted! So I just keep sleeping knowing my body will take what it needs.

The good news is that I still have my taste buds intact, saliva glands are not too sore nor is my neck. Traumeel seems to help that. I continue to massage them all as we discussed. I am fighting constipation since the RAI - suggestions other than oatmeal ??? Anything else to consider? Other than that I think I just need to continue to tough it out.

This was his response. It brought tears to my eyes as I read it. How vastly different my two doctors were. One would not talk to me and had just given me a toxic dose of a radioactive pharmaceutical drug and the other thinks of me and prays for me while he is traveling to a conference. I felt blessed.

Stephanie,

Thanks for the update. You've been in my thoughts and prayers as you went through your ablation on Monday.

Brown rice water will be really helpful for you at this point for soothing your stomach. Also, for nausea, try grating an apple into a bowl. When the pieces start to brown, eat it. It's very calming. Soaking prunes overnight in water and drinking the water is yet another idea to help you cope with this set of symptoms.

I'm out of town at a conference until Tuesday, so we'll touch base again when I return.

Doc

Looking back now it still feels so vivid in my mind. I can feel how it felt to me both emotionally and physically even though it is 1 ½ years ago. I truly believe that if it weren’t for the support and skill of this doctor I would have been in some serious trouble physically. He worked very hard to help be gain my strength back. His encouragement was worth its weight in gold as well. I thank God for bringing him into my life.

The second day was the beginning of the worst for me. I woke up at around 3 am and began to vomit. I did this every few hours for 3 days. It was awful. As I mentioned in my letter to my Dr, it seemed to get worse when I slept and then woke up. My body ached like the worst flu I have ever had. I was freezing cold so I piled on the blankets and wore sweats and then I was burning up and taking things off. On the second night my husband went for a walk and brought back a bunch of lilac flowers for my room. They smelled so good.

After 3 days of isolation my daughter was really starting to miss me. I had my mom bring her to the top of the stairs. I told her to run to me quickly and give me a hug. She did that and then I remember telling her to “run, run run” back to grandma. It made me sad. My poor little girl was almost 3 years old (on 6/4) and she had to deal with the hard things in life already.

By Friday, May 27th I was getting stir crazy. The nausea had subsided so I decided to go to the local grocery store. It felt good to get outside and just get out. I wandered around for a bit but tired easily and returned home shortly after to take a nap. I was amazed at how hard this hit me. But then again I had received the equivalent of my first two ablations in one dose.

On June 1 I e-mailed my ND again to ask more questions.

Just curious if you would understand why after 9 days the back sides of my tongue now feel like they are burned and I have some pain. I would have thought that this side effect would have come sooner in the process. I have not eaten anything hot that would have done this so I am assuming it is due to the radiation. My tongue is also sore when I move it around (underneath) as is my throat - just a little. Suggestions?

Stephanie,

I don't know why these symptoms would show up 9 days later. But I do know how you can deal with it. Mix 1/2 Echinacea and 1/2 water and swish it in your mouth for a couple minutes. Do this twice a day. It will have a great healing effect. (You can swallow it too).

Doc

Thank goodness for home remedies! I did not want more drugs or other toxic substances so I steered clear of contacting my Endocrinologist.

Within a few days I would develop another issue. The inside membranes of my nasal passage became sore and dry. I had huge sores on the inner part of the end of my nose. I put vasoline on the inside to try to keep it "moist" and try to get it to heal. It was very painful to the touch. The air passing through my nose would irritate it. How awful this RAI is to my body.

Thyroid Cancer - RAI #3 and a New Job

2007-03-18T21:42:00.000-05:00

The weekend dragged by as I anticipated the ablation on Monday. It was my mother’s birthday. This would prove to be the second bad birthday for her. My grandfather had died on this day the year before. I felt bad. I had begun to prepare my children for this time as well. I told them that “Mommy had to take some yucky medicine that was not good for them but was good for me. Because this medicine was not good for them and being by me would allow them to get it they could not be by me for 10 days.” It broke my heart to see my little girl look at me not quite understanding why she couldn’t see me. I had gone to the dollar store earlier that week and picked up 10 gifts for each child. I wrapped each one and placed them in boxes. I told them that each day grandma would let them choose a gift and they could open it. Then they could use the gifts to count how many days there were left before they could be with mommy again. It would give them something positive to look forward to as well.

I was thankful that my mom would be able to spend the week with them while I was in isolation. It was one thing I did not have to worry about this time. My both of my children would be with someone they loved and knew. Their schedules would be the same and they would not be shipped off to someone else’s house. This was the first time for my daughter and the third time for my son but the first he would remember. My husband still did not have a job at this point so he had to keep searching and interviewing. He did have a very good prospect on the table but we were in the waiting game.

Monday, May 23rd arrived all too quickly. I remember getting into my car and placing the healing scriptures cassette in to listen to while I drove to the hospital. My favorite scripture had become Mark 16:18 – They shall take up serpents; and if they drink any deadly thing it shall not hurt them; they shall lay hands on the sick, and they shall recover. Tears rolled down my face as I claimed this scripture for my own. I knew that God was with me through this and that he had promised never to leave or forsake me. The drive to the hospital is a blur. I remember parking the car in the same ramp I had been in the day before. This time I walked through the hospital knowing where I was headed. It was my third visit to the Nuclear Medicine Department.

I arrived once again to the patient waiting area and checked in. They tagged me again with the typical hospital wristband and I was told to sit down and wait. My wait this time was longer. I had visions of the technicians drawing straws to see who would administer the RAI to me. As I sat in the chair once again staring at the events of the day on TV, I thought about how lonely this whole journey is. No one could be with me due to the exposure. No matter how much your husband and other family members love you they can never understand what it feels like to go through this over and over again. The journey into extreme hypo until your brain fogs, body aches and you just cannot function anymore is something I never would have imagined. Your body literally shuts down. The 10 days alone would be welcome to me in a way. No one would demand a thing of me. It was my time to just recover and lick my wounds once again.

No one sat with me as I waited. I just wanted it all to be over, but would it ever be over? I knew that I would never do this again. I would hit my maximum lifetime dose of 500 mCi’s of I-131. Further treatments would risk acute myeloid leukemia. This was it. But I couldn’t think of the “what ifs”. I just had to make it through today. I began to watch the people being wheeled by the windows again. I prayed for the people being treated and for myself. It was such an empty and lonely feeling. I wished someone could take it all away. I was alone and once again it was just me to fight this battle. I had to deal with this. I had to find the strength somehow to fight once again. I was tired both mentally and physically.

About 20 minutes after I arrived, a technician came to take me back to the room where I would ingest the toxic Iodine. I put a smile on my face as I always do and followed her to a room with 2 chairs and a table. On the table was a cup of water and a release form with a pen on top. It was another cold, sterile room. I was instructed to sit in one of the chairs so I did. The technician explained that she would be right back while I read the form. She showed me where to sign when I had finished.

While she was gone I read the standard blah, blah, blah of medical legal forms. I placed my signature on the bottom and waited. The technician had used the rolling chair to get the RAI just like the last time I was administered the ablation. She returned with a large cylinder again. It was about 2 feet long and 6 inches in diameter. She could not pick it up but set it upright and unscrewed the top. Inside was a prescription bottle with 4 capsules. She handed me the container and instructed me to open it and take the pills and drink all the water. I looked at the pill bottle to verify that it was for me and the correct dose. I took the pills and swallowed. She handed me the precaution sheet and told me to call the number on it if there was any problem. I asked her how she could administer the dose of this level and not be affected. She said that she had to go through some testing the next day to determine her exposure. How scary is that? I did not ask what she had to do. I just wanted to leave and start the process. I said good-bye and began my walk through the halls. I remember thinking that I was passing by all these people that had no idea that I had ingested a large dose of radioactive material. I quickly walked toward the elevators and pushed the button. As I was standing there I a couple came up to the elevators. The woman was pregnant! I decided to pretend that I had forgotten something and left the area. I did not want to be on the same elevator with her. I did not want to expose her or her baby to this horrible drug.

I returned to the area in front of the elevators when they got on and the door closed. I pushed the button again and when it arrived I stepped in. Finding the close button I pushed it to ensure that no one else had the opportunity to join me on my journey. After leaving the elevator I walked quickly to my car. As I sat down I felt the comfort of its confinement. It was familiar and felt safe. I drove out of the parking ramp and handed my validated ticket to the attendant. I couldn’t help thinking that this many had no idea what I had just gone through or what I as about to encounter but then neither did I.

I started home and on the way decided to stop at the local video store. I had brought my laptop upstairs to the bedroom where I would live for the next 10 days. I could watch DVD’s on it. I ran in to the store quickly, careful to keep my distance from others. I selected 3 DVD’s and paid for them. I left the store and started home. When I was approximately 1 mile from home I called home to tell my mother to get my daughter and take her downstairs. I did not want her to great me at the door when I was at my highest level of radioactivity.

I pulled into the garage and gathered up my videos. I stepped into the house and grabbed some water. I would begin to drink water to flush the toxin out of my body. I would have to follow the low iodine diet for another day and could start my Synthroid in 3 days. Oh how I waited for that day! I was like a junkie looking for a fix at this point. I headed upstairs to the bedroom. It was equipped with a TV and full bath. My meals would be brought to me for the next 5 days.

I did not feel bad at this point so I turned on the TV and lay on the bed. I grabbed my laptop and began posting to my friends on the e-mail groups I belong to. I told them that I had returned home and so far was doing OK. Many sent words of encouragement. I couldn’t help thinking of how much harder this would be if I couldn’t somehow connect to others like I was doing on the computer.

At 3:30 I received an e-mail from my husband. The subject was “Does this ease your tension at all???” I opened it to find that he had been offered a job to start on June 1. This was the exact day that our COBRA would be ending so we would not have to pay another $960. They offered to start his insurance on the day he was hired. What a blessing. God once again provided for our needs and I could relax and recover without worrying.

Thyroid Cancer - The Whole Body Scan 3 Days Before Ablation

2007-03-17T10:00:00.000-05:00

My Naturopath worked with me to build up my body prior to the RAI treatment. At one point I was taking 54 vitamins per day. I felt pretty well all things considering. Then I hit a brick wall and called my doctor asking if we could test my levels early. It was only 4 weeks after going off my medication but he agreed. The levels came back and my TSH was 80.73. I went hypo very quickly! This was May 12th, 2005. I would not speak to my doctor through this entire process. After they got the test results the doctor’s office scheduled the RAI scan and ablation and called me with the dates. The scan was set for May 19th and the ablation for May 23rd.

I had researched for 5 years by this point and was beginning to be a doctor’s worst nightmare. I questioned everything! I had an unsettled feeling about this. My biggest objection was over the TSH level. My TSH had risen from suppressed in August of the previous year to .92. When the TSH is suppressed the thyroglobulin levels are lower. I would later ask the nurse about this and be told that the correlation between TSH & Tg is non-existent. I wanted to get my TSH suppressed and then run the Tg but my doctor would not let me do it. He just kept scaring me with the spreading cancer concept.

I went for my scan on May 18th. It was the third hospital I would go to for this procedure. Each doctor had their favorite. There are only 4 hospitals in my city. This hospital is the largest one in my city and the hardest to find things in. I parked in the ramp across the street and walked across the cross walk. I remember thinking that this should not faze me because I had done this on 2 other occasions but it did.

I checked in at the desk in the nuclear medicine department and sat down to wait for the technician to come and take me back. A national news channel played in the waiting area. I stared at the screen while my mind ran wild. The room was surrounded by windows so I watched as patients were wheeled by. Because this is nuclear medicine, it is the hot spot for cancer patients. The people I saw were obviously enduring massive amounts of toxic chemical treatments with radiation poisoning. They were pale in color and frail looking. I shook inside knowing that in a few days I would experience the poison again for myself and my stomach had a sick feeling.

I waited about 15 minutes and then the technician took me back. She checked the tag on my wrist to make sure I was who she thought I was and then proceeded to push a chair outside the room and down the hall. She returned moments later with a large metal cylinder which contained the scanning dose of I-123 that I was to ingest for the next days scan. I took the pill and left. I would return in 24 hours.

The next day I returned and checked into the Nuclear Med department again. I made small talk with the people around me. One person finally asked why I was there. I told her that it was for a scan to determine the dose of radioactive iodine I would receive. She asked for my doctor’s name and I told her. She said that she had the same doctor and found him to be egotistical and did not listen to her. Great, this is just what you want to hear as you are approaching an ablation dose. I was called soon after and taken back to the scanning room.

The technician led me down the hall and as we walked she started to explain what would happen. I stopped her and told her I knew the drill. This was the fifth full body scan since being diagnosed. I was instructed to lay down on the flat cold metal and plastic table. It is narrow in width – maybe two feet wide. There is a pillow for my head. This hospital was one of the most “patient friendly” I had experienced. The scan takes ½ hour and is in a cool room because of the machines. She offered to get some warm blankets for me. I eagerly accepted. She put a relaxation CD on and dimmed the lights. I was told to lay flat and not move. While the machine was over my head & neck I should not swallow if possible. That’s like telling someone to try to not think of a bear. All you do is think of a bear. But again I knew this was what was expected so I was prepared. I spent my time thinking and praying to God for his protection on my body from the radiation. I prayed that the scan would somehow be negative and that the treatment would be called off because I had been healed. I asked to see the image on the screen and she showed me what had happened. There was nothing that "lit" up - not anywhere. I thought "OH good!!! There isn't anything to ablate". My doctor would not think this way though. I was taken to another room to do the "Uptake measurement". This tells them how much of the RAI your body took in. They place a measurement device on your knee becuase this is a good baseline reference. Then they put the machine at your neck. My uptake was only .3%. This is VERY low and signified that I was what they call "Iodine Resistant". Then the scan was over and I was free to go home for a few days. I would await the call from my doctor’s office to tell me what dose had been chosen.

My scan had been done on Thursday and on Friday the 20th I received a call from my endocrinologist’s office to let me know that we were all set for Monday’s ablation. I asked the nurse what dose my Dr had chosen to give me. She said 250 mCi’s. I asked why. She said “He wouldn’t have ordered it if he didn’t feel it was necessary.” I asked if I could talk to him and I was told “No” that there was nothing for me to discuss with him. I asked her if she understood what I was about to go through. She brushed it all off and discounted my fears. I ended up in tears. I told her that this process was so hard and scary. She apologized for making lightly of the situation but her voice did not reflect sincerity. I wanted to call it off right then and there. But what would I do instead? I had no plan. I had no one to help me. When I asked my ND what he thought he said he didn’t know. He told me that he would be there to help me prepare for it by strengthening my body and then afterward to restore my health. The dosage scared me. It was the same amount as my first two ablations combined.

Thyroid Cancer - Stretching My Faith on the Long Journey

2007-03-16T21:51:00.000-05:00

When I got home from this appointment I had to call the partner to let him know that there would be no way that I could return to work. Talk about stress! Now I could not go back to work and I was about to undergo another round of radiation which usually knocks me on my butt for 6 mos to 1 year afterward. My husband was still looking for work and interviewing but did not have a job.

I went off my Synthroid on April 16th and began my decent into hypo hell for the 3rd time in 5 years. This time I had two children. My son was 5 and my daughter was almost 3 years. How was I going to keep up with two kids. My son was in pre-k and they met 5 afternoons so that was good. But my daughter was home all day and did not take naps and I needed them. I used videos to get her to sit in the chair while I napped. It was so hard!

I wrote this message to a Yahoo group of Christian ladies with whom I had grown close to on April 22nd. It really emphasizes the journey and how emotionally draining it is.

The depression part of this journey has kicked in. :( I am fatigued and achy. Now I am feeling blue and just want to crawl in a corner and cry. I hate this process and am beginning to remember why thyca patients call this "hypo hell". I am on day 7 since stopping my medication. That means there is no more in my system and I suspect that is why I am sinking downward. I have 3 more weeks before I go for my blood test. It seems like a lifetime away.

On another note, I belong to a group of moms (8 other moms in the group) and we have been getting together for 5+ years now. I sent out a message when I found out my cancer was back and not one person responded. So I sent out another message saying that I didn't think they got it. Then I got an e-mail from one and a reply that she got it but would call later (never did), another responded that she would help and call later (also never did), another tried to call while I was on the phone with the ins co but is rallying the group to try to get them to bring meals. My best friend of the group just moved to IL and she has called 4 times, crying and feeling so helpless for being so far away. The rest have all disappeared again. I am so hurt. When others in the group have needed help everyone has pitched in but now they have done this to me 3 times! We started getting together 3 weeks before my first RAI treatment. I forgave that one because we didn't have the bond yet - the next one was harder. This is very hard.

Sorry to vent - I am just feeling very alone today. Guess that's just part of the journey too. I think I need to visit the ThyCa support board for a while. I think I will go SN on the Gymboree loops (not this one) too. I see so many people stressing over what they are buying and how they didn't get that one special piece and I want to scream "Who cares!! Is that what life is about? Will it change what is really important in your life?" I like Gymboree clothing too but when you are fighting for your life it just gets put into perspective.

And so it continued. I must face the reality that I was once again fighting for my life and to remain with my family. I did not want to leave my husband or my children. This was not what I planned. Why did others have a thyroidectomy and RAI and were done and I continued to have issues 5 years later.

My online friends did offer support. The scriptures were a great source of comfort. One friend sent this:

Praying Steph! I know I share this verse with a lot of people, but it's just so good!!!
Psalms 61:2 "From the end of the earth will I cry unto thee, when my heart is overwhelmed; lead me to the rock that is higher than I."
Psalms 62:7 "In God is my salvation and my glory: the rock of my strength, and my refuge, is in God."

This was the point in my life that I would struggle hard with God. I would be introduced to God’s will for our health and what we are to eat. I would learn that God wants us to be well. I visited a Healing Room at a local church that my neighbor attended. She came to my house personally one night to invite me. I was out of my comfort zone but was glad I had gone to let others pray over me. I was on a journey and God was using this time to teach me patience and trust.

Thyroid Cancer - Here We Go Again Preparing for RAI

2007-03-15T17:25:00.000-05:00

Then it happened again. On April 15th, 2005 I went to my endocrinologist’s office for a check up and to get the results of my labs. My Free T4 was 1.0, TSH was .92 and Thyroglobulin was 34. I wanted to try to suppress my TSH to see what my Tg would be then because it is lower when suppressed but my Endo would not agree. My normal TSH was .1 or below and this was significantly higher. But like sheep I was herded onward to my third RAI treatment. I was told to go off my Synthroid the next day in preparation for the scan. I couldn’t believe it! Here I was doing all the right things and this happens. I asked my endo if it could just be a remnant of tissue that was not producing Tg and was resistant to iodine that now got healthy? Tg is produced by both healthy thyroid tissue and also cancer. He said not possible. I told him that I had done a liver cleanse, was exercising and had started a nutritional supplement program. He discounted my efforts and sent me on my way. Later I acquired the chart notes from this day. His comments were so far out of line. Obviously he has no clue what nutritional treatments are all about. If it doesn’t come from the Merck manual then he doesn’t think it works. Next are the notes from the doctor. I am sure he never thought I would see them.

Stephanie presents for re-evaluation of papillary thyroid cancer treated with near total thyroidectomy in two separate procedures on 3/01/00 and 4/12/00. She was given 103.3 millicuries of radioactive iodine on 5/26/00, and 150 millicuries of radioactive iodine on 01/19/01. The thyroglobulin decreased but never completely suppressed. Back on 11/30/04 the serum thyroglobulin was 11 with negative antibody on Synthroid .137 mg daily. Now on 04/15/05, the thyroglobulin was up to 34. The Free T4 was 1.0 and TSH was .92. The thyroglobulin antibody less than 1.0. Stephanie is feeling well. She states that she has started a new vitamin and “body cleansing regimen” and she states that she knew that through such “healthy measures” she would make any remaining tumor cells “more healthy” and she was very convinced that the thyroglobulin would increase.

Now let me interject here. How in the world do tumor cells become “more healthy”. Is he an idiot or what? The very nature of tumor cells is unhealthy. If they are healthy cells they are not tumor. I did not say this! I asked if there was tissue that became health and started to produce Tg when it had not been doing so previously. This is just like a thyroid gland that doesn’t produce enough hormone but when healthier it will produce more. I did not do a body cleanse but a liver cleanse. Was he even listening to me??? Back to the Chart Notes……

Examination of the neck shows no palpable thyroid tissue. There is no palpable cervical or supraclavicular adenopathy.

PLANS: I told Stephanie that we need to discontinue the Synthroid now. In one month we will check a TSH level. When it is greater than 50, I will refer her to “local hospital” Nuclear Medicine for an iodine 123 body scan. The results will be called to me and I will then treat with 200 to 250 millicures of radioactive iodine depending upon the results of the iodine 123 scan. We will re-start the Synthroid three days after this treatment and do a total body iodine 131 scan seven to 10 days later. The patient is to call me before the next appointment in four months if other concerns arise. We will recheck a Free T4, TSH and thyroglobulin tumor marker at that time.

He was going to administer a high dose of radioactive iodine but I would not see him for a follow up until 4 months after the treatment. Talk about throwing someone to the curb. I truly felt like this doctor and his staff felt like this treatment was a trip to a day spa with a vacation of 10 days to follow. It was completely inhumane.

Thyroid Cancer - A Job Loss

2007-03-14T19:28:00.000-05:00

In February, my husband lost his job. This was another major stress factor adding to my already fragile physical and mental condition. We were not in dire straights financially but things had been tight with a cut in his sales territory over the last year and a half and a loss of almost 50% of our income. We decided that we both would look for a job and whoever got one first would work and if it were me then he would continue to look for a job that he would enjoy doing and not just settle for one that would pay the bills. Our biggest obstacle at this point was a $960 COBRA insurance payment. Once again we could not net this lapse due to my pre-existing condition.

I contacted my old CPA firm and began communications with the partner in my old area. We began to discuss what options I had for returning to work. At one point they had offered me a part-time position with flexible hours but I was pregnant with my daughter and not interested. So we began to look at options.

As time progressed we came to an agreement that I would return 3 days a week with 2 overnights. A client was found that was starting a project at the end of May and I would lead this implementation. I talked with the partner on April 13th and it was almost all set. The partners’ meeting was two days later in the morning and they would approve the budget at that point.

Thyroid Cancer - Working with a Naturopath to Detox

2007-03-13T16:02:00.000-05:00

On November 3rd, 2004 I called his office to make an appointment. I had an appointment for December 2 (picture of my first appointment above). Four weeks seemed like an eternity! They had me fill out a health questionnaire online before arriving. He used Metagenics testing to determine the supplements I would need. At my first appointment we sat down and discussed the results of the test. They discussed the symptoms I was complaining about. This is a list of my symptoms:

Achy Muscles
Brain Fog
Joint Pain
Eczema
Slow Hair Growth
Slow Nail Growth
Gastrointestinal pain
Constipation
Anxiety
Depression
Mood swings
Irregular Periods
Intolerance to Noise
Low Stamina
Feeling Cold
Cold Hands & Feet
Insomnia
Sleep Disturbances
Dry Hair
Dry Skin
Need for Naps
Inability to Concentrate
No LIBIDO
Edema
Vertigo
Carpal Tunnel
Varicose Veins
Chronic Athletes Foot
Yeast Infections
Brown Facial Spots
TMJ

The list was long and pathetic and no doctor would listen to me and take me serious until I met this doctor. They did a full exam and found that my liver was so toxic it was bulging out of my rib cage. They listened to my intestines and could hear yeast. I was overweight – I am 5’7” and weighed 173 lbs. I was instructed to come back in a few days to get their “findings” and hear what they recommended.

I returned to their office a few days later and we met in a conference room once again. They told me that I had a toxic liver and also yeast in my intestines. Their recommendation was to start on a program called Metagenics UltraClear Plus. It was a 28 day detoxification program. I would eliminate all gluten, sugar and high glycemic index foods. I would slowly eliminate foods until in the 2nd week I would eat only fruits and vegetables. Then I would begin to add back foods. They also told me that I was very dehydrated. I was never one to drink much water. I drank mostly coffee and Coca Cola. Water just never tasted good to me and in some cases made me gag. It had to be very cold for me to drink it. They asked if I wanted to postpone the start of the treatment given the holidays and I said “No!” . I was tired of feeling poorly and wanted to feel better sooner rather than later. It was only food and my health was more important.

So I began the program. I had to drink the shakes and slowly increase them as I decreased foods. It was hard giving up the carbohydrates and also the caffeine because I was so tired that I depended on that boost. About three weeks into the detox I got a bad upper respiratory issue. Bronchitis set in and then I got a yeast infection. I had read that this was normal for detoxing. The toxins must come out! I made it through and felt better than I had in years but then I started to feel worse again. I have no idea to this day why my body does this but it seems that when I correct one thing another rears its ugly head.

So over the next few months I continued to drink 75-85 oz of water in an effort to try to get hydrated. I exercised 3-4 times a week by using the ball and treadmill. Some days it was extremely hard to do this but I kept trying to get it done despite how I felt because I knew it was good for me. I did feel better than I had in a while so I figured it would just take time.

Thyroid Cancer - My Hormones Are Out of Balance

2007-03-12T23:04:00.000-05:00

After getting off the birth control pills my “imbalance” began to level off a bit. I couldn’t seem to lose the weight that I had gained with this pregnancy. I had gained 24 lbs with my first pregnancy and within a few months was back down to a good weight. This time I had gained 39 lbs and could not lose it. I was constantly tired – needing naps every day when my children napped. These were not just little naps either. I would sleep for 2 hours or more depending on how long my kids would sleep. Then I would get them up and put in a video and lay back down on the couch. I just couldn’t’ seem to get on top of it.

Another issue I was experiencing extreme intolerance. I couldn’t handle any noise, had a short fuse and seemed to lose control easily. My son was 2 ½ at this point. He was jealous of his new sister and acted out on many occasions. I had absolutely no patients with him and would end up screaming uncontrollably at him. It was awful. I wondered what kind of mom I was becoming. As my periods returned around 1 year I began to have hormonal issues. For the week prior to my periods I would have severe anxiety. I would be afraid to get out of bed in the morning. I don’t know what I was afraid of but it was so bad that I had to mentally talk myself into getting up and starting my day telling myself that there was nothing to be afraid of. Then for the week after my period I would experience depression. It was like the postpartum blues I had when my son was born. So for 2 weeks of the 4 weeks in a month I was a hormonal basket case.

On July 12, 2004 I had an appointment with my endocrinologist. I told him that I couldn’t take it anymore. I was so tired and had the anxiety and depression. He said it couldn’t be related to my thyroid levels and then told me that it sounded like female issues and he did not deal in female “issues”. So in August I was due for my yearly physical so I asked my OB/GYN to check my hormones. I also was having breast pain in my left breast. He did find anything in his exam so he ordered a mammogram. I was 39 years old so he said “it’s time”. He also ordered labs to check my hormone levels. Of course they were all “fine” according to him but now I wonder. So many other labs were “fine” that really weren’t. He prescribed Zoloft and told me to take them 5 days before my period was supposed to come and that should help with my "issues". I took one and then decided that this was not the answer. I never had depression issues prior to removing my thyroid and now I do. Something was off and I wanted to find it.

So life continued on and I was miserable. On November 2, 2004 I went to a health seminar put on by a local Naturopathic / Chiropractor. I had heard of him years earlier but never investigated it as an option. But now I was desperate to feel better. His talk was on healing the immune system naturally. I went with my parents. After the seminar was over they told people they come up and ask questions of the doctor. I was impressed with what I heard so I went to ask him if he knew how to treat people with thyroid cancer. He said that he had helped patients with this condition and was convinced that he could help me.

Thyroid Cancer - I'm Pregnant & It's a Girl!

2007-03-12T22:53:00.000-05:00

On October 7th I was feeling nauseated. My period was late. I decided to take a pregnancy test. I did not believe that it would be positive because I had been told that it would take a lot for me to get pregnant, if at all. I took the test and immediately the second line popped up signaling that I was in fact pregnant. I was in disbelief! It has been so easy. I was convinced that God wanted this baby here for a reason when it had overcome all odds.

I had been reading and reading about pregnancy after a thyroidectomy and RAI. I had learned that as your pregnancy progresses you will need to add more thyroid hormone to help give the baby what they need. The baby uses your thyroid for the first 2 trimesters and then in the third it’s own thyroid begins to take over. My endocrinologist didn’t seem to know this but luckily for me he was willing to oblige to a point. I had appointments with my endocrinologist on November 8, 2001, December 14th, 2001 and March 19th 2002. During that time my TSH rose so my medication was adjusted from .150 mg Synthroid to .175 mgs. My Tg began to rise as well. I was told that we were not going to test Tg until after the pregnancy was over. One of my tests came back as 54 which was quite high. My endocrinologist told me that the proteins for thyroglobulin and those produced in pregnancy by something else were very similar and caused the Tg levels to be artificially elevated so he decided not to test my Tg until after my daughter was born. I do not know if this information is correct because I have not been able to find research to support this information. I have found that Tg is elevated in an iodine deficient state which is what I was – I am convinced. I never took any supplements after the second round of RAI to build my levels back up. I am allergic to seafood so I avoid all things related to fish and seaweed and I did not use salt. Although the use of refined salt is not recommended for iodine supplementation either due to the chloride used in the refining process.

I was so sick with my baby. This was even worse than when I was pregnant with my son. I was nauseated with him in the morning would throw up and then would feel a bit better. With my 2nd child I was sick all day long. I had to take drugs to keep from vomiting all day long. I threw up every morning and sometimes during the day. It was awful. I did not want to eat much of anything. I know my diet was lacking in good nutrients.

On June 4, 2002 I gave birth to a beautiful baby girl. Sierra was born VBAC because I didn’t want more surgeries. It was 34 hours of labor. She was a healthy 8 lbs 5 oz and 19” long. I was so relieved to see a healthy baby after worrying for 9 mos that she would be OK after having 2 rounds of radioactive iodine.

I had a follow up with my endocrinologist on June 25th. This was my first appointment post pregnancy. My levels were not doing well but I was still dealing with coming off of pregnancy hormones so we would wait.

At 6 weeks postpartum I had my follow up appointment with my OB/GYN. We decided that I would go on the mini pill so that I could continue to nurse my daughter. I had done this with my son and had no issues. This time things did not go well. I had a very bad reaction. My brain fogged and I had no coordination. It was awful. I knew it was a problem when one day I started running the water to fill the utility sink to soak some baby clothes and forgot about it for several HOURS! I didn’t notice it until I had flooded my laundry room. The water was running out of the room into the garage through the walls. It was at this point that my husband and I decided that I needed to go off the pill. I just couldn’t deal with the hormones. They were reacting poorly with my thyroid issues. This was only the beginning of what I would deal with after this pregnancy.

Thyroid Cancer - Fired an Endo & Got Endo #2

2007-03-11T19:20:00.000-05:00

On March 8, 2001 I returned to my endocrinologist office for a 1 month follow up post ablation. The doctor asked how I was doing. I was soon to find out that this was just a courtesy question. I told him that I was tired and achy and still did not feel well. He told me that my TSH was suppressed and there wasn’t anything he could do for me because I was where I should be. He said that the way I was feeling could not be related to thyroid and was probably “female” related. His abruptness hurt. I suppressed my tears once again until I reached my car and then let the tears flow. Why didn’t anyone care how I felt? It wasn’t in my head. I had maintained a very busy lifestyle prior to my diagnosis. I was a very busy computer consultant who traveled all over juggling up to 4 clients at a time. Now it was all I could do to get up in the morning and fix breakfast for my son and then crash on the couch and eagerly await naptime so that I could sleep again. I was gaining weight while eating very little. It was so depressing.

I decided to contact my OB/GYN regarding how I felt. He agreed to test my thyroid levels and adjust them as I felt necessary in an attempt to make me feel better while I figured out what to do next. I had an appointment set for July with my endocrinologist. I wasn’t sure that I wanted to continue to see the endocrinologist. I just wanted to find someone who would help me. Someone who believed that I still wasn’t well. It’s not in my head.

I began to ask around to family and friends. Did they know of that was a good endocrinologist. I thought that this was the only type of doctor that could manage the thyroid cancer. One of my girlfriends mentioned that she had started seeing an endocrinologist because her doctor had transferred to a new location and had referred her to this new endocrinologist. I asked her if she like him and she said that she had only seen him a few times but liked him. She said that he seemed nice enough. Well nice sounded good after the nightmare I had just been through. Since I had no intention of going through RAI again and was convinced that the endocrinologist I had been seeing knew what he was doing no matter how big a jerk I felt comfortable in switching to someone with less “experience”.

I discussed it with my OB/GYN and he said that he would give a referral to this new endocrinologist. He had checked with the doctor he knew but his wait time was 4 months out and his specialty was diabetes. So I contacted the 2nd endocrinologist’s office and made an appointment for June 22, 2001. It seemed like a long time away.

I continued to feel worse during this waiting time. I just could not regain my energy levels. I tried to lose weight and it was very difficult. It was discouraging. I could breathe something fattening and the weight would come on. I was eating virtually nothing. I tried the Atkins diet but always craved the carbohydrates and would go back to the way I was eating. Knowing what I do now I was not eating well at all. I was consuming lots of comfort foods – refined carbohydrates and sugars, quick from the box and take-out.

On June 22 I went to my first appointment with my 2nd endocrinologist. He had come from Mayo Clinic which was impressive to me at the time. He seemed nice and was willing to listen to all my concerns. I reviewed my medical history to this point. I told him that I was discouraged because the previous doctor wouldn’t listen when I said I didn’t feel well. He would tell me that I was “suppressed” and that was the end of the discussion. This new doctor told me that he was willing to help me adjust my dosing based on how I felt. He ordered lab tests and told me that he would let me know how I was doing. When my labs came back my Tg was at 10.8. This was a HUGE improvement over the 346 that had been tested in January prior to my 2nd RAI so I was encouraged. This endocrinologist told me that this number would probably come down in the next few months. My next appointment was set for September 14th.

I was starting to feel better by the time I returned for my 2nd appointment. My labs were run prior to my visit so we could discuss the information at my appointment. My TSH was 1.5 and my Free T4 was 1.1. The Tg (cancer marker) was down to 4.4. The doctor told me that he was pleased with this level. He said that as long as this level stayed below 5 he would be happy. This was wonderful news. It seemed that for once in this journey that things were changing for the better. We discussed that I wanted to get pregnant again and he agreed that it would be OK if I tried. I was now almost 36 years old and I did not want to wait much longer. My husband was 41 so we were not getting any younger. I had read that post thyroidectomy and RAI it may be difficult to get pregnant which is another reason why I did not want to wait much longer. My son was now almost 2 years old.

Thyroid Cancer - RAI #2 and a Trip to ER

2007-03-10T16:31:00.000-05:00

My RAI was administered on a Friday so that my husband could be home for the first few days after I received it. On January 19th I entered the hospital once again for an ablation treatment. I was handed a pill bottle with two pills for a total of 150 mCi’s of I-131 and told to swallow them while the technician watched me to make sure I did. Then I exited the hospital, returned to my car and drove home. I knew the drill. It was January this time and the lower level of our home was cold. I blocked off the open stairway with a blanket to keep the heat in the family room. I ran a small space heater to keep the room warm. I pulled out the hide-a-bed and settled in for the week.

This treatment hit me harder. I was nauseated by the evening. By the next day my saliva glands hurt as did the glands in my neck. I sucked on lemon drops to try to get the saliva flowing. I resigned myself to the fact that I was going to feel rotten. After all I had ingested a lethal substance in an attempt to kill a part of my body. It kind of puts it all in perspective when you think of it in these terms. I was given instructions that I could restart my thyroid medication in 2 days and stop the LID after 36 hours. At least I knew what I was supposed to do this time. All that was left was to get well.

My son was sent to my girlfriend’s house for the week while my husband was at work. The sad thing was that we ended up having to pay her babysitting services for the week. If I had a friend with cancer and needing treatment with no one to care for her child I would not charge them for my services. But what were we to do? We needed someone to care for him. It just seemed to add insult to injury that no one was willing to just help us.

My poor son got the stomach flu during this week. He began throwing up on Wednesday night. I could hear him crying while I was in the basement and it killed me not to be able to go to him and comfort him. He had thrown up all over himself and his bed. My husband was scurrying to try to get him cleaned up. It was 2 or 3 AM. It was 5 days past my RAI treatment so I decided to come upstairs and help. My husband took Dawson out of the room to put clean pajamas on him and wash him up. I stripped the crib and took the clothing to the washer and started a load and returned to make his crib with clean sheets.

The next day my husband took him to my girlfriend’s house and the poor baby was sick. My friend told me that he just lay in her arms and slept. He had a couple of diaper blow outs while in her care. I felt so guilty. He should be home with me. Wasn’t that the reason why I was at home, to care for my son? Yet here I was unable to barely care for myself and wondering just how many more years I would have to live and be with my family. The following day Dawson was still sick. We called my sister in law and asked if she could come to help me with Dawson. She could not. So we ended up leaving him home with me. I kept him in his exersaucer and stayed 7 feet away from him. I did not hold him on my lap or have him near me. I just cared for his immediate needs. I wanted to cuddle him and hold him. But I couldn’t. This stupid cancer was stealing more than I knew from me. I prayed that God would protect him from whatever danger he may be in by being home with me before the 10th day when I would be allowed to be with him.

On 1/25/01 I returned to the hospital for my post ablation whole body scan. This would be the 4th one I would receive since my diagnosis. The scan took about 30 mins and when it was finished the technician told me that they would run it back and make sure everything was OK. A few minutes later she returned apologizing profusely. She explained that when someone put the film in the machine they had gotten finger prints on it and we had to do it all over again. So I laid on the table for another ½ hour. Does anything go right the first time I wondered?

I seemed to be doing well after the ablation. I was back on my medicine and beginning to feel more normal. Nagging symptoms of hypo haunted me. I continued to ache and feel tired. I hoped that as time went on I would feel better and regain my energy.

On February 3rd for some unknown reason I started to itch. As the day went on I noticed that the itching got worse. I never thought to look at why it was itching until it had moved from my waist to my torso. When I finally looked I saw huge circles all over my mid-section. HIVES!!! They continued to creep up my body so I decided to go to the ER. When the doctor checked me in he asked if there was anything that I thought could have caused them. I told them that I had just undergone a radiation treatment a few weeks earlier. The doctor told me that it could not be related to the treatment. At the time I knew less than I do now about my body and health. Now I look back and think “You moron!!” Of course it was related to the radiation. My poor body had major inflammation from all the toxic substances you have bombarded my body with. What else is it supposed to do but revolt? I was given Tagament and Prednisone and told to take them and within a few hours the hives were gone.

Thyroid Cancer - It's Back Again. Preparing for RAI #2

2007-03-09T19:15:00.000-05:00

On November 7th I returned to the Endocrinologist for my 2nd appointment. He did a physical neck check, reflexes and blood pressure and then gave me a lab slip to check my levels. Why these doctors don’t have your labs completed BEFORE the appointment I will never understand. There is nothing to talk about at the appointment and you end up having a follow up phone call to discuss the results. Again, I wish I had copies of my lab tests from this point in my journey but I don’t. When my endocrinologist called me he told me that my thyroglobulin was still too high as were my antibodies and I needed to prepare for another round of RAI. I was not excited about this and when I asked him when he said “As soon as possible”. He told me to go off my Synthroid and that he would see me on December 27th for a follow up. He would check my levels again at this time. I was to start my low iodine diet (LID) on the 15th of December. This was depressing because Christmas was coming and it meant that I would not be able to eat the normal foods of the season.

A low iodine diet requires the removal of ALL items containing salt. This means no seafood, dairy, foods with carrageenan, agar-agar, algin, alginate or nori, egg yolks, red dye #3, chocolate, molasses, soy and potatoes. If you are curious just what this means take a look at a label on something you eat. I’ll bet you find a form of iodine or potential iodine in the product. So in a time when you are the most tired from being off your medication and going hypothyroid the most effort is required in preparing meals from scratch.

On December 27th I returned to my endo’s office and we reviewed my lab tests. My TSH had not risen to a satisfactory level so I had to wait. My doctor told me that he would like to ensure that I was not saturated with iodine prior to the RAI scan and treatment so he wanted me to do a 24 hour urine test. We would do this in January before the RAI.

On January 8th I had my pre-scan appointment to get the results of my lab tests. My TSH was 96.3 and Tg was 346 so I was all set to have my scan the following week. As we talked about the treatment I asked the doctor to give me advance notice as to when he would schedule the ablation because I had to find someone to care for my son who was now 15 mos.

The scan was scheduled for the 15th of January. I performed the 24 hour Iodine urine test and the results were a “5”. I a not sure what the unit of measure is for this test but my endocrinologist told me that this was the lowest level he had ever seen in all of his years of practice. This doctor was in his late 50’s so this was quite a few years.

On January 14th I arrived at yet another hospital to swallow a pill for the I-123 body scan. I was given 5 mCi’s of I-123. I returned the next day (1/15/01) for scanning. The technician in the nuclear medicine department did a full body scan along with an uptake. The uptake registered at .7% which would be the normal uptake at 8809 hours. This was an indication that of the dosage amount I received very very little was taken into my body and held. The normal range according to the report from the department was 8-33% after 24 hours.

After the scan and uptake were done I was instructed to take the folder with the results up to my endocrinologist. I waited a few minutes and then was escorted back to his office. His office was cold and sterile just like the rest of the office. I handed him the folder and sat in the chair opposite his desk. He took it from me sat down and then said “Now be quiet while I write a few things.” I was taken aback by his bluntness. As I sat there waiting for him to complete whatever he was doing I scanned his room. Behind him were many books on shelves and then my eyes zeroed in on a sign behind him. It said “Member of the Christian Doctors Association”. This should have brought me comfort but what was to follow in the next few minutes would discredit any positive thoughts I may have had.

My eyes returned to the papers he was writing on. I saw him reach for a small pad of paper and begin to write. It looked like a prescription pad. I couldn’t resist at this point and interrupted him. I asked “What are you writing?” He told me that he was writing the prescription for the RAI. I asked him when it was for and he replied “for now”. It was at this point I reminded him that I had no one to take care of my son if I returned home “radioactive”. I reinforced our prior conversation that I would need to have warning before my treatment so that I could make arrangements for the time I needed to be away from him. I still cannot believe what he did next. He put his pen down and looked me in the eyes. This was the first time he had looked at me since I entered the room. Then he proceeded to give me this speech: “Look I am not a salesman here. If you don’t want to do this then I am not going to force you. It doesn’t matter to me if you don’t want to do this. We can cancel this right now”. Those words are burned into my brain. I could not believe the insensitivity that this doctor portrayed. I was tired, achy and scared. I was undergoing the second RAI treatment in less than 1 year when it was supposed to be done in one treatment. I remember the tears welling up in my eyes and I told myself not to cry in front of him because it would only make things worse.

I asked him how long I would need to be away from my son after treatment. I already knew that the general recommendation was 10 days but I wanted to know what his thoughts were. He said “30 days”. I was a bit shocked and said “What am I supposed to do with my son. I am a stay at home mom and don’t have anyone to help with my son.” What little respect I had for this doctor at this point quickly left as he uttered the following words: “Just put him in a high chair in a corner and throw some food at him. He will be fine.” Oh my goodness! Has this man no heart. My baby boy was 15 mos old. He needed to be cuddled and rocked and sung to. I could never do that to him.

I told my endocrinologist that I would check with my husband on the best time to have the RAI and would schedule it with his office manager. I left the building and got in my car. Again I broke down. How could a doctor that had sworn to “do no harm” do so much harm to his patient emotionally? Didn’t he know how hard this was? Hadn’t he seen many patients go through this journey into hypo hell? Your hormones rage out of control, you ache all over and you can hardly stay awake. It is truly the worst feeling I have ever had in my life. It had gone from bad to worse. A nice personality ENT that didn’t know how to treat thyroid cancer to a nasty endocrinologist. He was skilled in his field but what was that worth if emotionally he was destroying my spirit?

The following day I called and talked to the office manager. We scheduled my RAI treatment for January 19th. Before I hung up I asked the office manager if I could ask her a question off the record. She said yes. I asked her if the Endo was always mean to his patients. She asked why and I told her my story. He had been short with me on other occasions but this time he was down right nasty. She said and I quote “Oh honey that’s just the way he is. You need to learn to deal with it.” Deal with it, I thought? But I couldn’t think of what else I could do at that point. I just needed to get through this RAI treatment and get well.

Thyroid Cancer - My Introduction to an Endocrinologist

2007-03-08T14:18:00.000-05:00

On July 19th I entered an old dingy building for my appointment with the endocrinologist. It was not like the upscale medical offices I had grown accustom to. It reminded me of hospital hallway scenes from the Waltons. Gray walls and tan speckled floors with stainless steel kick plates surrounded me. The chairs in the waiting room were a throw back from the ‘70’s. They were orange, gold and avocado colored vinyl. It was cold and uninviting. I was soon to learn that this was the demeanor of the doctor I was about to see.

I don’t remember much about the appointment itself. He breezed into the room like he was God’s gift to thyroid patients. He did the standard blood pressure, reflex and neck check with swallowing water. He ordered lab tests for TSH, T4, Tg and Anti-bodies. He sent my blood to Dr. Carole Spencer’s lab claiming it was the only place to have thyroglobulin analyzed. He definitely agreed that my care to this point had been sub par. He gave me a prescription for Synthroid telling me that it was “The Gold Standard” and that I would not be able to stay suppressed on any other thyroid medication because of potency variations. He gave me a couple of cards of samples and sent me on my way.

My information regarding my care (or the lack there of) from this doctor is sketchy. I did not acquire any copies of my labs. I was trusting that all that could be done was being done.

No new issues were discovered in my labs so a follow up appointment was set for November 7, 2000. My thyroglobulin was still detectible and I had antibodies but it was only 2 mos post ablation and my endocrinologist told me that my markers could come down for up to one year because the cells had damaged DNA that would try to repair the cells and would eventually give up and die. So I was waiting. Three and a half months seemed like forever. But I had a reprieve from the medical hell I had just gone through. I could just enjoy my summer and my son and begin to adjust to being a stay at home mom.

On August 4th my life was about to be turned upside down again. I have heard it said that God never gives you more than you can handle. I honestly believe that he pushed me to the limits. On the eve of this day my husband arrived home with a somber look on his face. When I asked him what was wrong he informed me that they had eliminated his position and he had been let go from his job. I was stunned. I had just quit my job not 1 month earlier and now he lost his. What would we do for insurance I wondered? This was certainly not the time to be without. Understanding insurance I knew that I could never let my coverage lapse or it would be possible to be denied for a pre-existing condition. Thankfully DJ had been looking for a new position prior to this and within just 10 days he was employed again. This was definitely not a stress I needed. I am thankful to God again for his faithfulness.

There was a wait time before we were covered on the new job's plan. We needed insurance from the beginning of August until the end of October. We had to take out COBRA insurance to ensure that we were covered. The cost per month was almost $500. Again true to God’s faithfulness one of my old clients contacted me when they heard that I was no longer with the firm. They asked if I would be willing to come and work for them to clean up some outstanding issues on their system. Since I was the one who had designed and installed their accounting system it was a great fit. I was able to work one day a week and they agreed to pay me $55 per hour! What a blessing. My girlfriend watched Dawson each Monday for $25. We were able to easily cover the cost of our insurance plus catch up on the medical bills from my treatment. I worked this job from September 2000 until the end of March 2001. I could arrive at 9 am and leave by 4 pm which worked out well since I couldn’t get up early given my fatigue from all I had been through.

Thyroid Cancer - The Long Road to Recovery & then I got an Amalgam (Mercury) Filling

2007-03-07T21:49:00.000-05:00

On June 9th I contacted my Endocrinologists office to ask for a new prescription for Synthroid. I had been on .137 mgs and my TSH was .9 which was not suppressed. My Dr. made the comment that if it weren’t for the high Tg he would have increased my medication to suppress my levels but since I had to go off of them he was not going to do it until after the RAI. Well apparently he forgot this conversation because when I called to get an increased dose he refused to give it to me. More frustration on my part! I knew what I had been on was not enough before and doubted it would be now. So I continued on the .137 mgs and waited until the next blood test.

On June 29th I called my doctor again to let him know that I was not feeling well and felt like I should have my labs checked. His response back – through the nurse – was that I needed to be on replacement for 8 weeks before they would recheck my levels. Why he picked 8 weeks out of a hat I have no idea. All reputable websites including the one for Synthroid said that you should check levels every 6 weeks. So I waited again.

On July 18th I called my endocrinologist again to tell him now I had vertigo and was light headed with body aches. I swear I just had to keep getting worse and worse before they would finally let me get my levels checked. So he finally agreed to check my TSH & T4.

When my levels came back from the lab my TSH was 2.23 and my Free T4 was 1.7. The nurse called me on 7/27/05 to let me know that the Dr. had signed off on the labs and said they looked good and there would be no change in my thyroid medication dose. I asked what the numbers were. I was shocked that he said they were OK. I explained to her that I was a thyroid cancer patient and that my TSH must be suppressed to .1 and the number she gave me was far from that. She stated that she would talk to the Dr. and get back to me.

A few hours later she called me back to tell me that the doctor told her that it had not been 12 weeks yet and that the TSH may decrease further. Now it is 12 weeks??? When I called in June it was 8 weeks. I was getting more and more uneasy. I wondered if he even pulled my chart when he looked at my labs to know that I was a thyroid cancer patient. I was desperate. I felt lousy. Give me the drugs, I thought!!!! Once again I ended up in tears. It is hard to maintain your composure when you feel so horrible and so helpless at he mercy of an uncaring doctor. It was all about the numbers and not about how I felt. But my persistence worked and he increased my meds to .175 mgs – yes that’s right he went up two dose levels. I felt like he did that just to spite me knowing that I would go hyper and have to call again and beg for a new level. I did not like this game we were playing nor did I enjoy not being able to discuss this situation with the doctor. I have copies of my chart notes so I can see exactly what was conveyed to the nurse and I am not impressed.

Over the next few months I concentrated on trying to get my health back. I used some Metagenics detoxification products to get the radiation poison out of my body. I ate organic food, juiced vegetables and continued to take vitamins and get Chiropractic adjustments. I went weekly for the first 2 months and then bi-weekly from that point on. I needed to keep the toxins moving out!

In July I went to the dentist for a check up. I was apprehensive because each time I had RAI I would also get cavities. It seems quite comment for ThyCa patients. This time was no exception. I was told that I had a cavity. So an appointment for August was made. They briefly told me about what they would use – Amalgams. They said they had composites but they were more expensive and not covered by my insurance so I would probably not want that. Yes that was a consideration. We had just come off a long unemployment stretch with huge COBRA payments. I had heard that amalgams were not good but didn’t know why. I was so tired and beaten down that when it came time to get the work done I just let them put the amalgam in. After all I already had a mouth full of amalgams so what was one more? Boy was I sorry afterward.

Within a day of placing this amalgam I started having a burning sensation in my mouth. My entire tongue was on fire like I had drunk hot coffee and burned my tongue. It would not go away. There were days of lesser intensity and then days with more to where it was all I could think about. I asked my ND and he had some suggestions. None of them worked. It was driving me crazy!!! I would not put all the pieces together about this issue until almost 1 year later.

Thyroid Cancer - You are done! Cured - NOT - Time for a 2nd opinion

2007-03-06T08:29:00.000-05:00

On June 6, 2000 I went for my follow up appointment with my ENT post RAI. He took my vital signs and looked me over. He asked how I was doing and then told me that I was done. I looked at him oddly and said “Done, what do you mean?” He said, “You are done. You do not need to see me again.” I said “Never?”. He said “No, not unless you have problems.” I asked him who was going to watch me over the next few years. He told me that I did not need to be watched and that the RAI had taken care of the cancer. I got a very uneasy feeling. As I mentioned previously I had joined some e-mail groups that were formed by other thyroid cancer patients. I knew that I was not done. I knew that I would need to have my thyroid levels checked and that I needed to have my TSH suppressed to .1 or below. I had learned that someone would need to watch my thyroglobulin (Tg) levels to determine if there was active cancer. Experts stated that scanning was required at one year post RAI treatment to determine if the treatment was successful. I left the office knowing that I needed more than he could give and questioning my treatment and care to this point. Had we done the right things I wondered?

After a few days of thinking and reading I decided that I needed to seek the opinion of another doctor. By this point I had learned that Endocrinologists were the specialist of choice for thyroid cancer. I talked to my OB/GYN to get a referral to the local Thyroid Specialist. I called and scheduled an appointment with the local thyroid endocrinologist for July 19, 2000.

I contacted my ENT’s office and told them that I wanted copies of everything in my file. They did not want to give it to me which made me nervous. I told them I had a legal right to them. They told me it would take 24 hours. I arrived at the office the following day to pick up my records and they were not ready. The office manager told me that I could not have them. I told her I was not leaving until I had them in my hands. A few minutes later my doctor appeared in the waiting room physically shaking. He questioned why I wanted my records. I told him that I was not comfortable with his comment that I was done with my treatment. I told him that the research I had done on this type of cancer dictated that I be watched closely for 5 years after removal/treatment. I commented that many things should have been done. There were no antibodies checked, no thyroglobulin levels and no low iodine diet followed prior to RAI. I emphasized that I wanted to see someone who had experience with thyroid cancer and asked him why he had not referred me to someone who was experienced. He had no answer and disappeared to have his office manager prepare my records. Looking through the documents I felt like there were pages missing. I was to find out a few years later in 2005 when I requested records from the hospital that there were in fact documents regarding my treatment missing.

I had high hopes for my appointment with the endocrinologist. I felt a sense of relief that I would be seeing someone who was skilled in thyroid issues and more importantly had treated many patients with thyroid cancer.

I was nearing the end of June and a decision needed to be made about my job. My leave of absence was over on July 4th. My surgeries and tests were over for the most part but physically I was not well. I was tired and had substantial brain fog. The thought of getting up at 6 am or earlier to get on an airplane to fly to a client for 3 days was not appealing at all. I did not know how I would manage to be effective in my job. After discussing it with my husband we decided that I would resign from my job at the firm. It was somewhat hard for me to give up the only real career I had had. I really loved what I did but in my current condition there was no way I could handle the stress and pressure of the job. The managing partner told me that I was always welcome back when I regained my health and felt ready. So on July 3rd my resignation was tendered and accepted. A sense of relief fell over me that this decision was made.

I had been out of work for almost 8 mos at this point and my income had comprised 60% of our total household income. Thankfully, shortly before having my son I was given an inheritance from my grandmother who had died the previous year. We were able to pay off our house taking a large burden of over $1,200 per month out of our budget. We were also able to pay off both of our car loans giving us another $500 per month to pay for other necessities. Thankfully we were debt free after these items were paid off and helped relieve the financial stress that would have otherwise plagued us.

Thyroid Cancer - RAI and Hypo Hell

2007-03-05T19:20:00.000-05:00

On May 18, 2000 I met with the radiologist to receive the RAI for the preliminary scan to determine the ablation dose. I was given 1.8 mCi’s of I-131 and told to return the following day for scanning. Years later I learned that using I-131 for scanning was controversial because it has a tendency to “stun” the cancer and thyroid cells and not allow them to take up the ablative dose effectively. Because it has an 8 day half life I had to wait another 8 days before receiving my ablative dose. It was 16 days after the lab test reading of 102 TSH. I was so hypothyroid by this point. I don’t know how I managed to take care of my son through this time. It was only by the grace of God because I had no one to help me during the day. My husband was wonderful and pitched in to help when he came home.

Through my research and involvement on the thyroid cancer e-mail groups I was to learn later that standard protocol was to go on a low iodine diet 2 weeks prior to receiving RAI in order to starve your body of iodine so that it would take up the radioactive form and kill the tissue. I was taking a multi-vitamin high in iodine intended to help with thyroid issues thinking that I was doing my body good. Consequently not much of the first ablative dose was effective.

I had done some research prior to my ablation and found that in previous years a patient was placed in a room isolated from all other individuals. Food was brought to their rooms and placed outside the door so that the individual was not exposed to the patient. The patient then took the meal inside their room and ate it. All remaining food that could be flushed was and the rest placed in a trash can located inside the patient’s room. All articles such as books and magazines had to remain in the room when the patient left because they were considered toxic materials. Three to four days after the RAI was administered hospital personnel in protective gear would enter the room with a Geiger counter to find out how radioactive the patient was to determine if they could be discharged.

On May 26, 2000 I entered the hospital, swallowed 2 pills for a total of 108 mCi’s of I-131 and returned home to spend the next 10 days in the lower level of my home. The instructions I was given for precautions were frightening. I wondered how it was determined that an individual given a radioactive substance was deemed to be safe to return home with a 6 month old child in close proximity. I was to flush two times, eat off of paper / disposable items, sleep alone for 5 days, wash clothing separately for 1 week, avoid contact with pregnant women and children for 10 days, and maintain 7 feet of separation from all others for 5 days. In bigger, bolder print on my instruction sheet was “Time and distance equals exposure.” How frightening! I figured it all probably had to do with money. Insurance companies do not like to pay for anything “unnecessary”. I guess keeping my family save isn’t that necessary. Little did I know I was to do this 2 more times.

My RAI had been administered on a Friday so that my husband could be home to take care of him. My husband took a week of vacation during this time. I was so thankful that he could be home so that I did not have to worry about him.

That night I laid on the couch watching TV in the lower level of our home. We had a daylight basement with a family room, full bath and two finished bedrooms. One was an office and the other a workout room. The family room had a pull out couch and this was to be where I would sleep for the next 5 days. I didn’t feel any ill effects that evening and began to think that all the horror stories I had read were not going to happen to me. I fell asleep that night only to awaken the next morning feeling like a major bout of the flu had hit me. My head hurt along with my joints and my stomach was upset. I slept for the next two days and don’t remember much of what occurred.

For subsequent days and nights as I felt better I spent time on the iVillage.com thyroid cancer message board. There were so many encouraging ladies on this board. They helped to ease my fears and encourage me when strange symptoms occurred. They helped me to keep pushing on even when I felt lousy and didn't want to deal with it all. I remember crying as I would type. I didn't know who these ladies were yet they understood exactly what none of my friends or family could ever know. I don't know what I would have done had I not found this support.

On June 1st I returned to the hospital for my whole body scan (WBS). How I drove to the hospital I still do not know as I look back on my condition. The test took around 1 hour to complete. The procedure is easy to perform. The patient lays on a flat table as a metal plate with films approximately 1 ½ ft square passes slowly over you. As it moves over your head you are instructed not to move or if possible swallow. As I was trying to sit up the vertigo hit me very hard. I felt very dizzy. I told the technician that I was so hypothyroid and got dizzy. She asked if I was on thyroid medication and I said “No”. My ENT had not given them to me yet. She said that I obviously needed them and that I should contact my doctor to get the prescription.

I contacted my ENT’s office when I got home and asked when I could get my thyroid replacement hormone. It was met with resistance. I told them that I couldn’t take it anymore. The vertigo was so bad that I could hardly stand up without passing out. The nurse in the office told me that I would have to wait until my follow up appointment with the doctor which was the following week (6/12/00). I was frantic and in tears telling them that I couldn’t wait. I had to have hormones soon or I was going to loose it. Mentally I was unable to think. I was so foggy brained and experiencing huge hormonal issues relating to anxiety and depression.

To recap, I had lost ¾ of my thyroid on 3/1/00, the remaining amount on 4/12/00 and TSH test run on 5/8/00 with a value of 108.2. It was now 24 days later and I can only imaging how high my TSH was at this point.

I called my OB/GYN’s office after getting off the phone with my ENT’s office. I explained to him my situation and how desperate I was. He told me to come to his office that day and he would see me and prescribe some medication for me. I remember sitting in his office in tears because I felt so awful. The scary thing is that I had driven to his office. I think God’s protective hand was on me through this time. Looking back I realize just how sick I was. My OB/GYN prescribed .100 mg of Levoxyl. I was so thankful to finally have medication in hand. My ENT’s office was not happy that I had gone around them to get medication. It felt like a power struggle that I was in the middle of. But I had a baby to care for and wanted to get my life back and no one seemed to care that I was a person beyond the chart.

Thyroid Cancer - Waiting for Radioactive Iodine (RAI)

2007-03-04T19:34:00.000-05:00

While waiting for the next step in my thyroid cancer treatment one of my teeth developed an abscess. It was the only tooth that had a root canal in it. Apparently the bacteria left in the tooth had decided to flare up into an infection. It was really no wonder that this occurred now. I had been under a large amount of stress with having given birth by C-section in November, nuclear med scan in January and partial thyroidectomy in February. On top of all this I was caring for a new baby which in itself is tiring.

I was given a low dose antibiotic to try to knock the infection out. It would not subside. My dentist called a doctor friend of his who was an infectious disease specialist. He told him to prescribe 850 mgs of Augmentin. I was on this dose for over 2 weeks. It reduced the infection enough so that on March 27, the endodontist could re-do my root canal in the tooth. I was told that this infection needed to be cleared up before I could undergo any further treatment for thyroid cancer.

Days later brought more news of what was to be my next medical adventure. My ENT had done some investigating and determined that I needed to meet with a radiologist.

On March 29, 2000 I met with the radiologist at the hospital. He reviewed my medical records and interviewed me about what procedures had been performed. It was at this point that he informed me that I would have to have a radioactive iodine (RAI) treatment but that this could not be performed until I had a total thyroidectomy. This would be my 3rd surgery in 5 mos time. I was wondering how I was going to handle all of this. I was so tired from just being a mom and then adding all the tests and doctors appointments it did not seem fair. It was during this appointment that I would first hear a line I would come to hate. The radiologist told me that I should not worry because I had “the good cancer”. He went on to tell me that if there was a cancer to get then this one was it because it was easily treated & cured. For me this was not the case and I would continue to suffer for close to 6 years after this from this "good cancer".

Life was moving fast and I was growing more uneasy. No one seemed to have answers for me and my doctor’s office became more and more hostile to my inquiries. I am sure they just wanted me to do what they said and not ask questions. I would soon find out that they did not know what they were doing. The truth was soon to be revealed to me but not after the first major mistake was made. I had found two e-mail groups and joined them. One was on iVillage.com and the other was the ThyCa.org group. Being a member of both began my education into what thyroid cancer was and the standard protocol for treatment. My care was quickly deviating from the norm.

On April 12, 2000 I returned to the hospital to have the remaining quarter of my thyroid removed. I was nervous about returning once again after the nightmare I had with the IV. I made sure that I made them aware of the previous situation and they got a nurse who was skilled in difficult insertions to assist me. I was relieved when it was in on the first try. The surgery itself was over quickly without any issues. I returned home the next day to recover. When I got home I had to change my dressing on my neck. I slowly peeled off the bandage and saw my war wound. I looked like the bride of Frankenstein. There were big black spider-like stitches across an inch and a half to two inch incision. I wondered if I would look normal again. It was so ugly.

After returning home I began to wonder how I was going to deal with all that was to come. I had been placed on an antibiotic not suitable for nursing so I was forced to face the reality that I had to stop. With radioactive iodine looming over me just 6 weeks away I gave up. I was depressed and angry. This is not how I wanted it to be with my son. I wanted to enjoy him and instead I was going from doctor’s appointments to labs to hospitals to take care of myself and this "good" cancer. I hated the first time I tried to give my son formula. He did not like it and spit it out. I cried as I tried to feed it to him feeling like I was poisoning him by not feeding him God’s perfect food. I felt so guilty. Then he broke out in a rash all over his face so I figured it had to be the formula. I had more guilt. I tried soy and he absolutely hated it. So I tried the regular formula again combined with breast milk I had frozen and eventually he was hungry enough and took it without issue.

It was the middle of April and I was in the waiting game. I had my thyroid removed and was on no thyroid hormone in preparation for radioactive iodine (RAI) treatment. I was told very little about what this entailed. My ENT did not know how to treat thyroid cancer and was depending completely on the guidance of the radiologist at the hospital. I was told that I had to wait until my TSH reached a high enough level so that I could be treated with RAI. How long I was to wait was not clear. As time wore on I was more and more fatigued. I was trying to care for a baby who was now almost 6 months old. I looked forward to the naptime because I would sleep. It gave me 3 hours during the day that I could finally get some rest.

One morning I woke up around 8 am to the sound of my son waking up. I pushed back the covers and began to sit up. I felt so dizzy. I waited a bit and then tried to stand up. I couldn’t. I almost passed out and had absolutely no balance! Thankfully the phone was near the bed. I called my husband and told that he had to come home because I was scared to try to pick up the baby in my current state. My ENT would later diagnose me with a calcium deposit in my ear canal and gave me exercises to do to dislodge it. How insane!!! The problem was that I was severely hypothyroid.

Thinking back I realize the insanity of the entire scenario. On May 9, 2000 I had reached the end of my rope. I was so tired I could hardly stay awake. I literally fell asleep on the couch after supper and moved from the couch to the bed and proceeded to sleep until 8 am when my son would awaken. I was so achy and feeling frantic. I called my doctor’s office and told them that I couldn’t take it anymore and that I had to have a high enough TSH. I was told the target was 80. The doctors office called in orders to have my TSH checked with a blood test. I went to the lab and had the blood drawn the next day. The results came back at a level of 102.78!!! Then the mad scramble began to get another appointment with the radiologist to begin the RAI therapy.

Thyroid Cancer - The Official Diagnosis - The Big "C"

2007-03-03T15:00:00.000-05:00

I returned to my ENT’s office on 3/12/00. I was supposed to go to have my stitches removed. I went by myself. I did have my son who was now 4 ½ mos old. I was placed in the examination room. The doctor entered and removed the stitches while asking how I was doing. I said I was doing OK all things considering. He said I had healed really well and he was pleased with my progress. After removal he stated that he was going to quick go and grab the pathology report.

This was the point that would forever change my life. I remember him returning to the room, closing the door and standing by the door just to the right of it. As he began to read he fell back against the wall and said “I am so sorry I thought it was nothing.” I sat there not quite realizing what was happening. He looked at me and said “I did not even look at the pathology report before today because I was so sure it was nothing. The report shows that the nodule was malignant and that it has spread to your lymph node.” He went on to explain that he never takes out lymph nodes and that this one must have accidentally been removed. I was stunned. I had heard the “C” word. I looked to my left and saw my sweet baby boy sleeping in his infant carrier. I said nothing. I did nothing. My doctor said I am surprised you are acting this way. I looked at him and quietly said “I don’t know what to say”. Before I left he said to me “I do not know how to treat this but will contact my oncologist friend to find out.” He told me that he would be in touch to let me know the next step but discussed chemotherapy and radiation. It is all a blur to me. I don’t think I really wanted to know. I wanted to leave, run anywhere but there. I wanted my husband and he was not there. I wanted someone who could tell me that it would be OK and that this was not really happening. How was I going to tell my husband that his wife was diagnosed with cancer when we had a new baby?

I walked out to my car, placed my son in the infant carrier base in the back seat, slid into the drivers seat and burst into tears. I cried and screamed and asked God why? Why was this happening to me? I grabbed my cell phone and paged my husband. I waited and no response so I called my friend. She sensed that I was upset and through my tears I told her what had just transpired. She told me her mom and sister were at her house and that they would all be there to support me and to come over. I drove to her house and broke down. Thank God for good friends who are there for you when you need them. My husband called me while I was at her house. I feel bad as I look back. This poor guy was working out in his territory and found out that his wife was diagnosed with cancer. I can only imagine the thoughts that went through his head. I do remember him telling me that we would talk that night and that we would get through this.

That night after dinner while still sitting at the table I called my mom to tell her that I had been diagnosed with cancer. I remember avoiding it all day not wanting to call. I am an only child. I remember telling her that I got my results of the pathology report and that it was malignant and had spread to my lymph node. She was quiet on the other end and did not say much and then hung up. Later she told me that she had cried and gotten angry at God. I wonder why it is God that we curse so quickly when bad things occur. It is to God that I owe my life and strength through this time.

Thyroid Cancer - The Nuclear Med Scan, Fine Needle Biopsy & Partial Thryoidectomy

2007-03-02T08:23:00.000-05:00

The next thing he ordered was a nuclear med scan. The test required that I come in to the nuclear medicine department at the hospital and ingest a pill containing 33.2 uCi of I-123 and then return the next day (1/18/00) to scan my neck. I remember this was a difficult time. It was now the 2nd week of January and I was nursing my son. Given that I was going to be ingesting a radioactive substance I was told that I would have to pump and dump for 3 days. So I stocked up milk for days before my test to prepare for feeding my son with breast milk from the freezer. I was determined that my child would not be fed formula and I would continue to nurse him when it was safe again.

The anxiety was heightening. My son was now almost 2 ½ mos old and I was set to return to work on February 2, 2000. The doctors continued to tell me it’s probably nothing over and over again. I tried to believe them but with a new baby it was hard to not worry. A decision had to be made about my work. I had a job that required travel and that was not conducive to the testing I needed. I decided to take a 60 day leave of absence from my job.

The nuclear med scan was inconclusive and it was at this point that my OB/GYN told me he was over his head and he needed to refer me to an Ear, Nose and Throat doctor. This was the wrong choice for this form of cancer. I should have been referred to an Endocrinologist. Since he believed it was probably nothing I don’t think much thought was given to future care or the appropriate doctor.

At the end of January 2000 I saw my Ear, Nose and Throat doctor. He evaluated my tests and we discussed that it would be a good idea to do a FNA (Fine Needle Aspiration) to determine what we may be dealing with. Again I was told that in most cases these nodules are benign and are “nothing”.

I arrived at the hospital on February 2, 2000 to undergo a fine needle biopsy (FNA). I was brought into a small examination like room with a table. I was placed face up on the table and given a pillow for under my neck to help stabilize it. I was asked if I would like to have it “numb” or not. Oh my yes!! I do not want to feel this at all. So they swabbed my neck with a surface anesthetic and then gave me a shot so that I would not feel it internally. I was instructed to lay very still as the Dr inserted a needle into the cysts and placed the fluid / cells that were drawn out onto slides for analysis. It wasn’t as bad as I expected. I did not feel anything and suffered no after effects.

On February 11, 2000 I returned to my ENT’s office for follow up to get the results of my FNA. The results of this test showed “focally atypical follicular cells”. He told me that these cells were abnormal but it still could not be determined if it was a malignancy. He again assured me that most of them are nothing and that we would take out ½ of my thyroid and it would be fine. If the other ½ of my thyroid did not pick up the slack for the half that was removed I would be given thyroid replacement hormone to take care of it. I was told it was easy and would just require taking a little pill for the rest of my life. My doctor advised me that the surgery might damage the laryngeal nerve resulting in a hoarse voice. This was somewhat upsetting to me. I was a member of an a ccapella He went over the incision, placement scarring and bleeding. “We” decided to schedule the surgery for a right lobectomy. I place the “we” in quotations because looking back on this there really was no coordinated effort. I was a tired new mom scared out of my mind as to what was happening and not understanding anything. I had no idea of the importance of my thyroid what it controlled or what options other than the one I was being hurried through were available. So onward I went …………blindly.

On March 1, 2000 I entered the hospital to have a right thyroid lobectomy. My mother came and took care of my son. My husband took me to the hospital. I had to stay over night. I remember pre-op. They had to start an IV. An older lady approached me and proceeded to try to start my IV. She made the first attempt on the inside of my left arm. She poked through the vein. Next she tried my right inner arm and poked through that vein. Then she went to my left hand and poked through that vein. As you can imagine I was beside myself at this point. I told her to go get someone who could get this done. I was a nervous wreck and in tears. Another nurse came and said a prayer and then proceeded to insert my IV. I remember her saying “Thank you Jesus”. I told her I agreed and it was at this point that she told me she had prayed for a positive result. She departed and returned a few minutes later with 3 latex gloves filled with ice. She placed them on each of my veins where the previous nurse had attempted to start the IV. I looked like a junky with huge bruises on my arms. Shortly before they took me to the operating room the doctor came in to talk to me. He wanted to make sure that I was ready. He marked my neck with a black marker to show the side of the thyroid he was to remove.

I remember being wheeled into the operating room. I laid on the table thinking about all the people that were praying for me. There were friends, family and church members from both my church and my parents and those of other churhes as well. It was very comforting. I remember praying myself that God would spare my life so that I could return to my husband and son. The next thing I remember is someone calling my name and feeling freezing cold. I was shaking and crying. They told me it was the anesthesia and piled warm blankets on my body. The doctor came in the room a while later and told me that he had removed 75% of my thyroid because when he got in it “looked bad”. I now question why no frozen section was done during surgery. I will never know at this point in my journey but this would prove to be an issue later when my pathology results were received.

I was wheeled into my room to rest for the night – although this is an oxymoron since in a hospital you do not get to rest with all the poking, prodding and blood pressure reading. In the morning my doctor and an intern entered my room. They had run some labs during the night. The tests indicated that my calcium levels were low so they suggested that I get some additional calcium. When I asked how I should do this I was told to take 5 or 6 TUMS per day. I was stunned! Did they not know that this was an antacid and taking this would reduce my stomach acid? Why try to fix one thing with something totally unrelated? This was to be the beginning of many more medical “treatments” I would question.

A few days after being released I began to feel tingling in my face. I called my ENT and was told that this was the calcium deficiency and was probably due to the parathyroid glands being traumatized by the thyroid surgery. I added more calcium that I had purchased from the health food store and that helped clear up my symptoms.

Thyroid Cancer - The Diagnosis Process - The Ultrasound

2007-03-01T22:53:00.000-05:00

My intention with this blog and the ones to follow over the next few months is to document my medical history of my journey through thryoid cancer. My hopes are that it will help someone else who is either newly diagnosed, in the middle of their journey or has gone through the same thing. I am finding that this process has created a sense of healing and strength as I remember what I have been through and realize that I have in deed made it through.

I will be adding a bit of my story continually so check back for the new installments. :)
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My journey begins in March, 1999. I was at my annual physical with my OB/GYN. He was performing a lymphatic / endocrine check and casually mentioned that my thyroid was swollen. I didn’t ask what that meant nor did he offer any words of direction as to whether I should do something or have it checked by someone.

One week later I was to discover that I was pregnant with our first child. I was 33 years old, working for a regional CPA firm, had just made manager and was flying high in my career. I was working 70-100 hours most weeks and found myself on a plane early Monday morning only to return home late Thursday evening. I was sleeping little and eating poorly. My average breakfast was a pop tart and a cup of coffee. Morning snack was a can of Coke and a candy bar or Little Debbie snack. Lunchtime was usually fast food like Mc Donalds or Wendy’s where I would pile on another Coke and some fries and a burger or chicken sandwich. While on the road room service was the norm because I was always under deadlines with my clients and had too many clients on my plate to allow any time to rest and rejuvenate from the stress of the day. When my weight reached a level above which I would tolerate I would join Weight Watchers and get back to a slightly healthier life and force myself to exercise while traveling. This continued for the 4 ½ years I was a consultant. Next came pregnancy.

I was so sick throughout my pregnancy. I eagerly awaited my 12th week hoping that somehow the nausea would subside but it did not. I vomited every morning and throughout the day so I ate what I could keep down. This consisted of chicken, grapes, bagels, double cheeseburgers, fries and ham & egg croissants for breakfast. I limited myself to 1 Coke a day because I didn’t want my baby to get too much caffeine. Some days I could eat more and spicy Mexican or Italian food hit the spot. Vegetables were a virtual no go. I could not stomach the thought of a vegetable so I did not eat them. I am sure I ate a few but it was very minimal. As the fatigue continued from pregnancy and I am sure also due in part to my failing thyroid I cooked less and less and picked up a variety of takeout items. My husband would treat me with Slurpee’s which soothed my stomach. And so this continued for 9 months until our son was born by C-Section on November 5, 1999.

All was well with the world as I cared for my new baby. I experienced the normal fatigue that comes with being up all night and also some post partum blues which I attribute to the c-section and the lack of the transition your body goes through in preparing for labor and delivery. He was a beautiful baby and I adored him. My life would forever be different. Little did I know just how different my life was about to become.

One week before my postpartum checkup I contacted my OB/GYN to tell him that I was experiencing some rectal bleeding. He instructed me to come to his office so he could check me out. He was being cautious because my father had died in 1997 from colon cancer as did his mother (my grandmother) in 1998. He did an examination of me and said that he suspected it was a fissure but to be safe he was sending me to a gastroenterologist. This was now the first week in December 1999.

Within a few days I was seen by the gastroenterologist. He first did a preliminary exam which included a lymphatic check along with my thyroid. This doctor asked me if I was aware that I had a cyst on my thyroid. I told him “No” but that my doctor had mentioned 9 months prior that my thyroid was swollen but had not told me to do anything about it. He told me I should have it checked. So I mentioned that my 6 week post partum was the following week and I would mention it to my doctor then. I was elated to learn that there was nothing wrong with me after this doctor did his full exam only to find that it was hemorrhoids related to pregnancy.

The following week I went to my 6 week postpartum. My son traveled with me to my doctors appointments. He was such a good baby that it made it easy. Little did I know that I would be carting him to many more appointments. I asked my OB/GYN about the lump on my thyroid and he checked it and agreed that there was something there and we should check it out. He ran standard labs including a TSH, FT4 & T4. All of which were normal – or should I say “in the range”. He ordered an ultrasound which was performed on 12/29/99. It showed that I had a multi-nodular cyst measuring 3.9 x 2.8 x 2.6 cm.