Monday, November 12, 2007
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"
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!
Tuesday, November 06, 2007
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!
Monday, November 05, 2007
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.
Thursday, November 01, 2007
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.
Saturday, September 29, 2007
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.
Sunday, September 02, 2007
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.
Saturday, September 01, 2007
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.
Monday, May 14, 2007
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.
Sunday, May 13, 2007
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
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!
FT3 421 (230-420)
FT4 1.2 (.8 -1.8)
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.
Saturday, May 12, 2007
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!
Friday, May 11, 2007
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.
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:
High Fasting Glucose
No Iodine detected
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!
Monday, April 30, 2007
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.
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:
Slow Hair Growth
Slow Nail Growth
Intolerance to Noise
Cold Hands & Feet
Insomnia Sleep Disturbances
Need for Naps
Inability to Concentrate
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.
Thursday, April 12, 2007
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!
Tuesday, April 10, 2007
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.
Saturday, April 07, 2007
These are the results of the tests I ordered:
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!
Friday, April 06, 2007
From the FDA's Website:
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
RECALLS AND FIELD CORRECTIONS: DRUGS - CLASS II
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.
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: Amerisource Health Services, Columbus, OH, by letter on April 12, 2005.
Manufacturer: Forest Pharmaceuticals, Inc., Earth City, MO. Firm initiated recall is ongoing.
Subpotent: Product may not maintain potency throughout shelf life.
VOLUME OF PRODUCT IN COMMERCE
58,544/100 tablet bottles.
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.
Wednesday, April 04, 2007
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.
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.
Sunday, March 25, 2007
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
Tuesday, March 20, 2007
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.
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.
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?
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).
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.
Sunday, March 18, 2007
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.
Saturday, March 17, 2007
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.
Friday, March 16, 2007
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.