Monday, April 30, 2007

Thyroid Cancer - Another ND Appointment

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

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
Slow Hair Growth
Slow Nail Growth
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
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.

Thursday, April 12, 2007

Thyroid Cancer - I have a new doctor!!!

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!

Tuesday, April 10, 2007

Thyroid Cancer - Synthetic Hormones Don't Work!

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.

Saturday, April 07, 2007

Thyroid Cancer - The Final Visit to the Endocrinologist

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!

Friday, April 06, 2007

Thyroid Cancer - The Big Synthroid Lie

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
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.
58,544/100 tablet bottles.


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

Thyroid Cancer - Getting uneasy so I am researching

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

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 & 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.

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

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 ...