The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!

STTM photos of people from video UPDATEDThe push continues, fellow thyroid patients.  And it’s getting louder and more widespread.

This week, Wall Street Journal columnist Melinda Beck, who writes a weekly health column, hit an important gong with her wonderful attention-getting article titled “Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism.”  

“Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck—and patients may be gaining ground.” ~Melinda Beck

Beck underscored the sad reality that doctors have been relying “on a single form of treatment for hypothyroidism”, aka T4-only like Levothyroxine or Synthroid.  And it’s been travesty.

Why T4-only as a sole treatment is a scandal

As I explained in detail in the revised Stop the Thyroid Madness (STTM) book, a healthy thyroid produces five hormones: T4, T3, T2, T1 and calcitonin, with T4 being the storage hormone, and T3 being the powerhouse of all the thyroid hormones. In that healthy thyroid, T4 will convert to T3, but the gland also produces “direct” T3.  That is an important distinction.

Yet this “single form of treatment” with simply a storage hormone, which was thrust upon thyroid patients by 1960 (see Chapter 1 in the revised STTM book for excellent historical details), has forced us all to live for conversion alone…and hundreds of millions of us over the past five decades have a paid a hefty price. There are simply too many reasons why the conversion of T4 to T3 can be impaired, ranging from genetic factors, to diet, to stress, to illness, to age.

That is exactly what compelled me, in 2002, to start what is now the largest active thyroid group still on Yahoo, and later, the largest “system of thyroid groups” on Facebook, called the FTPO (For Thyroid Patients Only) groups–the only system of patient groups endorsed by Stop the Thyroid Madness.

How patients are dismissed

In addition to quoting a few doctors, Beck interviewed thyroid patient/advocate Mary Shomon, who stated “It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants.” Also interviewed was thyroid patient/advocate Dana Trentini, who feels her second pregnancy ended in miscarriage due to only being dosed by the TSH, which in her case was left high–another hefty problem in the treatment of thyroid patients.

Major kudos to Antonio Bianco, president of the American Thyroid Association

When the American Thyroid Association (ATA) has been the height of disappointment for informed thyroid patients with it’s strong emphasis on “synthetic thyroxine” as well as its poor details about NDT, it was extremely refreshing to see him quoted as stating: “I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine’.” followed by Beck’s words that Bianco ‘has refocused the research to search for answers for such patients’. You give us a light of hope, Dr. Bianco.

Seven areas that patients beseech their practitioners to be wiser about…

1. Levothyroxine, Synthroid and all other T4-only medications

They have failed far too many of us. It’s not about exercising more, eating less, seeing a therapist or putting us on a myriad of other medications to treat conditions which are actually the results of that failure. Learn from us.

2. Natural Desiccated Thyroid (NDT)

What has been vividly changing lives is Natural Desiccated Thyroid (NDT)not T4-only medications. NDT has been around since the 1890’s–it worked then and it works now. Learn from us.

And to the contrary, NDT’s T4 to T3 ratio of 80/20 (as compared to the human ratio of 93/7) has not been a problem for the vast majority. Instead, problems are usually “revealed” on NDT due to a cortisol issue and/or low iron–both common problems that arise with patients who have been put on T4-only, or who have been left undiagnosed.

3. The TSH lab test

The TSH lab test is and has been as much a failure for thyroid patients as has T4-only. To be held hostage to a “pituitary hormone” has been a complete **nightmare** for thyroid patients. Even one of your own esteemed colleagues, Jeffrey Dach MD, as well as many others, know the travesty of the TSH as explained in chapter 4 of the practitioner-written book Stop the Thyroid Madness II.  Learn from us.

4. Lab tests that count, and how to read them

It’s the free T3 and free T4 lab tests which have been superior for either diagnosis or dosing, not the TSH. And a key observation noted by informed thyroid patients is “where” a result falls in the so-called “normal” range that has meaning. Many key lab tests have helped us in our journey towards feeling wonderful again. Learn from us. 

5. Symptoms that go along with hypothyroidism

To the contrary, there are clear symptoms that go along with the right lab tests to reveal hypothyroidism. Depression is overtly common in an undiagnosed or poorly treated hypothyroid state, as is afternoon fatigue, poor stamina, dry skin, hair loss, rising cholesterol, rising blood pressure, painful joints, and/or others. How do we know as informed patients? Because they go away when optimally treated on Natural Desiccated Thyroid. Learn from us. 

6. T3 added to T4

Adding T3 to T4 has proven to also be far superior to T4-only, and to the contrary, it has NOT been “difficult to sustain therapeutic levels” if practitioners will simply learn from their patients how to use T3-only with T4. The same goes for the even more superior Natural Desiccated Thyroid. Learn from us.

7. Listening to your patients instead of dismissing them

Finally and most importantly, though we appreciate the intense medical training that all our doctors have received, it’s time to consider that we, as informed patients, might have something valuable for our doctors or practitioners to consider and open their minds to. It’s not just about clinical trials. It’s time to RESPECT AND LISTEN TO YOUR PATIENTS, THEIR EXPERIENCES, CLINICAL PRESENTATION, AND THEIR OWN INNATE WISDOM. Learn from us

ANNOUNCING: A new powerful YouTube video in honor of thyroid patients worldwide:   Please share this video to your blogs, private Facebook pages, groups, Twitter, email. Join the PUSH!










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43 Responses to “The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!”

  1. Greg

    Having found STTM several years ago I tracked down a supporting doctor in Australia who supported the treatments and use of extract.

    Unfortunately when I contacted my doctors recently I received the following email

    “Due to a decision made by the Medical Council The doctor is no longer allowed to practise as an Integrative Medical Practitioner. She is now on extended leave in order to decide wether she wants to practise conventional medicine or retire.Access to a summary of medical notes is available if requested by another Doctor.”

    This is a disaster and shows how far the cause has to go as it’s clearly not accepted with the Australian medical system.

    • ilana

      Why is our illness a “menance” to the medical authorites? I live in Israel and it’s the same disaster here, it’s like a global conspiracy 🙁
      The neglect in treating us borders a crime.

    • Anina from Denmark

      On 23 May 2012, the Danish Thyroid Patients Association held a Seminar at Aarhus University Hospital in Skejby. One of the 10 issues were the subject of “What the future holds”, and the speaker was an endocrinologist dr. Steen Joop Bonnema from Odense University Hospital. What this good doctor had to share with the audience is not the point here, but the most interesting was what dr. Steen Joop Bonnema said during questions after the lecture … when asked about the possibility of standard treatment with desiccated thyroid (NDT) manufactured by the only compounding pharmacy in Denmark producing NDT for the few Danish patients who are the lucky ones, dr. Steen Joop Bonnema said (quoted verbatim): “Fortunately it will soon be over.”

      What did dr. Steen Joop Bonnema know in 2012, we didn’t know back then? Or rather: HOW COULD dr. Bonnema know already four years ago that NDT as a treatment option “fortunately will soon be over”?

      Several events around the world since 2005 tell their own story … starting with regulatory requirements (FDA) for changing of Armour Thyroid formula og and many desperate attempts to make Synthroid “housebroken”, as far Synthroid neither was approved or reliable. It remains unreliable, regardless of the FDA’s and the manufacturer’s continuous unsuccessful efforts to make synthetic levothyroxine durable and effective. And what about the huge increasing of prices so Synthroid for the first time in history will look cheaper than Armour Thyroid?

      Everyone knows what happens to UK-doctors who treat hypothyroid patients in accordance with the Hippocratic Oath, but against the standards set out by the medical unions in cooperation with the public helath authorities. In the Western world, the UK is the country where in fact most doctors beenig either stripped of their medical authorization, or commit suicide, or both. Therefore it does not surprise me at all, that the same is happening also in Australia

      The Scandinavian medical organizations, however, are content with only pursuing and firing doctors who do not obey the majority of their colleagues. Doctors in Finland, Norway, Sweden and Denmark being fired, and even Denmark’s only top-expert in thyroid diseases were forced into sick leave, and everything indicates that he will not be allowed to treat patients anymore. Why? Because he and the other fired doctors has treated their patients as humans, not as a series of numbers on a piece of paper.

      Viewed over the period of the last eleven years, what all of that does tell you? Ilana uses the word “conspiracy”. Is it right to use this word? President Franklin D. Roosevelt once said, “Nothing in government and politics happens by accident; you can bet if something happened it was well planned.” J. Edgar Hoover said: “The individual is handicapped by coming face-to-face with a conspiracy so monstrous he cannot believe it exists.”

      I say, FOLLOW THE MONEY, because not cancer, not heart disease, but the huge number of medical conditions and diseases arising out of the undertreated thyroid diseases, are an endless source of income for the world’s pharmaceutical industry, and for the industry’s henchmen in our society – the absolute majority of conventional doctors. As long as the absolute majority of our relatives are sitting with their fingers in their asses (pardon my french), and not helping us, and we are alone to fight for our lives, nothing will happen and our fate will also strike our children and grandchildren, and their children.

  2. Patricia

    I appreciate the fact that doctors have different opinions on the use of NDT, but shouldn’t the patient have some say in the matter? I’ve tried both synthetic T4 and NDT and NDT works better for me. The proof is in the pudding.

  3. Michal

    NDT saved my life and my sanity.

  4. rebecca

    Has anyone ever used iodine, thyroid support supplements and natural food to combat hypothyroid problems?

    • Janie Bowthorpe

      There are exceptions to most anything, but for “most”, iodine itself has not taken one’s hypothyroid away. Some have reported being able to lower their thyroid meds because of iodine; others didn’t. Some report iodine shrank their nodules, and that is huge!! For some, eating cleaner has helped them lower their thyroid meds, too! But others, it’s hasn’t. But it never seems to hurt to try whatever you can!

  5. cheryl hughes

    I am going to a new endo next week. This is attempt #4 at a doctor to hear me. I want to clearly tell him wat I want and be firm about it, but I am not sure what I need. I was on armour previously and got pretty severe foot pain and leg cramps. I switched to levo and have gained 100lbs since. My body cannot take anymore. This is effecting every little piece of me. I read stuff on here until I end up really confused. I watched my mother die from diabetes and this is such a scary place that I am in. I am wanting to stop the medications and insanity. I need to lose weight, I work out everyday and eat less than 2000 calories. I have tried everything under the sun with elimination diets to no avail. I feel heavy, like gravity is pulling me down, cold to the bone, stabbing pains in my head, swelling all over my body, sallow and dry skin, the list goes on. I am on 175mg levo, I take a b-complex, and vitamin d. I had a naturopath who did some extensive testing but all I got from that was an empty bank account and found out my body is in distress. I went to an internalist who led me to believe I was nutso. My last GP told me to get bariatric surgery. My last endo dozed off while I was pouring out my heart. This is very mentally taxing. I have a new GP which is why I have a new endo. I want to make this appointment the one that will be my road to recovery from all of this. I realize this is long and rambling but I am honestly on my phone and having difficulty editing. Any advice at all would be much appreciated. I hope this was a good place to post this.

    • Janie Bowthorpe

      If you are in North America, stop going to Endos. Most suck. If you are not and are forced to go to Endos, learn this page so that you’ll be informed and can win your argument:

    • Patricia

      Cheryl – your leg/foot cramps are more likely due to a magnesium deficiency rather than the Armour. Try some magnesium supplements. Worked for me.

    • cheryl hughes

      As suspected…the new endo said I should look into bariatric surgery. I asked him how a chemical imbalance (that is not being fixed) would then be fixed with bariatric surgery, he walked out of the room on me. However, he did send the nurse back in with labs he had ordered. Does anyone have a referral for central Arkansas?

      • Learner


        So sorry for your situation. You are on the right path. Keep looking for the chemical imbalance. It could be more than just your thyroid. Get a full thyroid panel and DUTCH test to begin. Try looking for a functional medicine doctor – a quick search turned up a few in Arkansas.

        Good luck!

    • Cheryl Hughes

      I have recently been to Dr. Mary Sain in Central Little Rock…..Thank you to all of you who replied to me. I wish I had found her 5 years ago when I was diagnosed. I took her all of the bloodwork from my naturopath and most recent bloodwork from the endo. She was very understanding and finishing my sentences for me…that is how well this woman understands!!!! I was so overwhelmed with joy from meeting her. She reviewed the bloodwork and decided to check magnesium levels, selenium levels, MTHFR, methylation, iron levels, she is going to do an ultrasound of my thyroid, and she changed my meds to Armour. She also said her a few of her hashimotos patients have done well on gluten, dairy, and additive free diets, with liquid vitamins. This is the best news I have ever gotten and I hope I will be on the road to a better well being.

      • Janie Bowthorpe

        That’s wonderful, Cheryl! NDT rocks. By the way, might want to consider other brands:

        And whatever you do, remember we have to raise it to find our unique dose:

        • Galina

          Cheryl, this literally made me cry. I’m so happy for you and wish I could find a good doctor like you have. I’m crying right now because I wake up every morning in such pain that all I want to do is cry and go back to bed because everything hurts. I have started taking ibuprofen just to feel good enough to get through my day. I have so much inflammation that I feel I have no strength in my hands nor my legs. I walk slowly having no spring in my step. Even when I go to get up after sitting down I have to be careful because everything hurts. Getting in and out of my car is also a slow process because I have to hold onto the door to help myself in. I went to my son’s basketball game and stood there looking at the bleachers not knowing how I was going to get up there because my husband had gone up without thinking of helping me. I stood there a couple of minutes embarrassed not knowing what to do while people are just watching me stand there, then my daughter came up and game me her name and helped me get up bleachers. Tears are rolling down my face right now. I wish I could find a doctor to help me. My doctor has me taking 250mcg of levothyroxin daily and it does nothing. On top of everything else I have so much hair loss. I’m going bald.

          • cheryl hughes

            I have been on armour for almost 2 weeks now. I wish i could say that my life changed, however this is a slow, emotional process. The results of my bloodwork came back and my appt to discuss them was today. I found out that I am fine on selenium but she wants me to eat brazil nuts, my magnesium is at thr low end of normal so i will be supplementing that, and my iron levels were all low so she prescribed me iron. I took 60mg of armour for 3 days, on day 4 I knew I needed an increase, so I took an extra 30. Did 3 days of 90mg, then jumped into 120, tomorrow i will take 180. My hypo symptoms are rearing their ugly head and I am miserable. I know the levo had to get out and the armour had to build up, i just feel so weak and tired its emotionally draining. I have also stopped gluten and dairy. Hopefully the mineral supplements along with leveling out on armour will get me feeling better. You have to find a doctor, you have to be persistent. This website has been a lifesaver for me. ALL doctors should reevaluate why they are practicing and if it is not for the betterment of someones health, they need a new career. It is an epidemic, not just in the thyroid community, but in all areas of medicine. I believe there is an area here to search for docs in your area as well.

          • Janie Bowthorpe

            Cheryl, just an FYI: many patients are moving away from Armour onto other brands since the latter tripled and price and for some, wasn’t as effective anymore. See this:

    • Sylvia

      Try to go organic vegan (80% raw) at least temporary to address weight gain and high cholesterol until you get on better medicine or find a doctor. This was only way I was able to counter the weight gain. I am also trying to get off t4 only since it does not work for me.

  6. Peppy

    Can you tell me what you think of my blood test results? I am female, age 48, 5′ 2, 150lbs Recently diagnosed in January this year, but my blood tests last June 2015 were showing high TSH 3.85, I didn’t believe it was true, got tested again, and my TSH was then 4.18.

    January 2016 Prescribed Nature-Throid 16.25mg once a day.

    Blood Test Taken 4/12/16

    TSH – 1.94 – Range(0.36-3.74)
    T3 Free – 2.9 – Range(2.18-3.98)
    T4 Free – 0.8 – Range(0.8-1.5)
    T3 – 113 – Range(80-200)
    T4 – 6.9 – Range(4.8-13.9)
    T3 Reverse – 10 – Range(8-25)
    Thyroglobulin Ab – 24.5 Range(1000 – Range(<35)
    Vit D – 51.6 – Range(30-100)
    Iron – 44 – Range(50-170)
    Iron Sat – 23.0 – Range(20-50)
    Ferritin – 17 – Range(8-252)
    Magnesium – 2.2 – Range(1.8-2.4)
    Selenium – 138 – Range(63-160)
    Iodine – 57 – Range(52-109)

    Ever since the high TSH levels in June 2015, I've been reading everything about the Thyroid, Hypothyroidism, and Hash's
    I've upped my Vitamin/Mineral intake.

    Thank you

    • Maura


      Your ferritin level is way, way too low. The Functional Medicine level (in contrast to Conventional medicine) should be between 70-90. According to Dr. Datis Kharrazian, anemia is a dealbreaker. If it isn’t resolved, nothing else will improve. If you haven’t read his two books, I would definitely start reading those. Here are some good resources. Were you tested for your Thyroid peroxidase antibody (TPO) level as well in addition to the Thyroglobulin Ab? Both tests should always be done together. Some people respond more to one than the other. These antibodies tests are a good way to track progress. As inflammation goes down in your body, these levels will go down as well. Food reactions are a common reason for the inflammation. Go gluten-free if you haven’t already. Good luck.

      Why Do I Still Have Thyroid Symptoms? when My Lab Tests Are Normal: a Revolutionary Breakthrough in Understanding Hashimoto’s Disease and Hypothyroidism – Dr. Datis Kharrazian

      Why Isn’t My Brain Working?: A Revolutionary Understanding of Brain Decline and Effective Strategies to Recover Your Brain’s Health – Dr. Datis Kharrazian

      • Janie Bowthorpe

        One important qualification though: no one can go just by ferritin. Some people can have low ferritin but good or high iron due to having the MTHFR mutation.

        • cheryl

          This is interesting. What do you think about these levels:

          Ferritin 21.2 (10-291)
          Iron Lvl 41 (65-175)
          Percent sat 11 (20-50)
          TIBC 388 (250-450)
          Magnesium 2.0 (1.8-2.4)
          Selenium 129 (23-190)
          MTHFR negative for A1298C positive for C677T


  7. Sherrie

    I’ve been hypo for over 20+ years as has most of my family due to being Downwinders.
    I’ve tried many of the meds for hypo, most did not work for me. They made me ache with every move.
    Only two worked and one of those changed their dose, eliminating mine.
    NT Thyroid has been fantastic. It has few ingredients (3) and is cheap. 3 month prescription for $27!

  8. Catherine

    Hello, I am a 55 year old female. Starting to think my thyroid has been my problem for the last 10 years. Can you tell me what you think about the below lab work recently.
    Component MY Value Standard Range
    TIBC 143 ug/dL 250 – 450 ug/dL
    UIBC 100 ug/dL 131 – 425 ug/dL
    Iron 43 ug/dL 27 – 159 ug/dL
    Iron Saturation 30 % 15 – 55 %
    Erythropoietin 10.1 mIU/mL 2.6 – 18.5 mIU/mL
    CRP <0.5 mg/dL < 0.5 mg/dL
    Sedimentation Rate 59 MM/HR <30 MM/HR
    Thyroglobulin 115.6 ng/mL < 55 ng/mL
    Thyroglobulin Antibody <1 IU/mL < 40 IU/mL
    TSH 1.697 uIU/mL 0.350-5.500 uIU/mL
    Thyroglobulin Antibody <15 U/mL <60 U/mL
    Thyroid Peroxidase Antibody 28 U/mL 24.0 ng/ml > 5.4 ng/ml
    Vitamin B-12 1023 pg/ml 211-911 pg/ml
    Ferritin 55 ng/ml 10-291 ng/ml

  9. Jennifer

    My daughter got diagnosed with hypthyroidism last year they put her on levothyroxine but she still has symptoms and just last month she had a blockage in her artery that resulted in a mild heart attack now she has two stents and under a lot of medication I’m scared for her health she is only 18 years old and I don’t know what to do

  10. Jean L

    I sympathize with all these people writing on your blog. I think it is great what you are doing because it must be helping many others like myself. Maybe because I put down something about the active ingredient. I just feel it must have something to do with that. Granted, they are substituting alot of bi-products they never did before. However, I am a thyroid patient on natural thyroid for many, many years. I know how I feel now and how I felt in 2003 on this medication. It is a tremendous difference and nobody could possibly understand that if they are not going through this for that many years.

    I realize many of these people are recently diagnosed with hypothyroidism. So they cannot tell the difference between what is sold now and what was sold then. I forget how I actually felt back then, but I can only remember that it is a significant difference.

    If you don’t want me talking about the active ingredient, I understand.

    My only fear right now is that the major drug companies who seem to want only synthroid on the market is very, very upsetting. Like so many others. I personally don’t know what I would do if they took this off the market entirely. It scares me to think it is being fazed out.

    I think many pharmacists and doctors do not realize the difference because so many professionals are saying there is no difference between natural and synthetic. Especially the major drug companies like Pfizer.

    They should raise the price of this natural thyroid medication to keep it being made. It seems to me that the more money a company makes on something, the more they want to continue to manufacture it. True?

    • Janie Bowthorpe

      Hi Jean. Sorry you aren’t feeling as well. But I do want you to know that many do still feel as well on NDT. I’m one. Are you still on Armour? That is one brand that has changed, and people are leaving it behind in the dust to be on other brands like WP Thyroid, NP Thyroid or Naturethroid. The active ingredient in NDT is pig thyroid, Jean. And it’s not just about money–it’s also about volume of people ordering something. The volume of NDT being prescribed or used today is FAR more than it was even a decade ago.

      P.S. I know you send another post asking why I hadn’t approved this one. I don’t live on my computer 24/7. 🙂 🙂 I just got on.

      • Jean L

        It is a great feeling to know others feel the same way I do. I hope your right!! If the high demand is a big issue, I hope it grows into something bigger for us! Keeping the faith.

  11. Ty

    Well I am having a very hard time with my symptoms. I was DX grave APR 2015 had total TT in hopes of better control and reduce of symptoms 4/21/16. now going on 3 months post TT have racing heart, pounding heart, extreme anxiety etc.

    Blood tests at 6 weeks post TT:(6/1/16):
    TSH – 3.03 (range 0.40-4.50)
    FT3 – 2.6 (range 2.3-4.2)
    FT4 – 1.3 (range 0.8-1.8
    Reverse T3 – 31 (range 8-25)
    I took this blood work 24 hours after I took my Levoxyl

    4 weeks on 125mc Levoxyl. 7/8/16
    TSH – 1.46 (range 0.40-4.50)
    FT3 – 2.5 (range 2.3-4.2)
    FT4 – 1.7 (range 0.8-1.8
    Reverse T3 – 35 (range 8-25)
    (These were taken 12 hours prior to my levoxyl dose)

    Met with the PA to discuss and still having racing heart, extreme anxiety and all that. He said to lower my dose of Levoxyl to 88mc and I agreed to do this and this alone for a week or until I feel increase of symptoms.

    I asked him about adding T3 and he said that is ok. So I will try reducing this dose to 88mc for a week and see how I feel, but regardless I will add 5mc of T3 next week and increase the T3 if I need to.

    Any thoughts?

    Also any good thyroid doctors or doctors who know what they are doing you know of in UT? or salt lake city?

    Thank you

  12. Ty

    Thanks. I have looked through this directory, but will again. Was just curious if you happen to know someone here

    Also how will I know how much T3 I need and should it help with the heart palps etc.?
    How do you know your sufficient dose of T3 and dose that change often?

    I will be looking through the posts here.

    • Janie Bowthorpe

      The T3 link I posted explains that. No, can’t remember all the possible better docs. But if you do what it says on the second link, you’ll find one. 🙂

  13. Ty

    I will read through this thanks for link

  14. Alicia

    About 1.5 years ago I was finally able to convince my endo to write an Rx for Armour Thyroid. It seemed to work much better, for about 6 months. Then I began having hypo symptoms once again. I explained all of this to my endo. He reluctantly ordered the Free T3 and Free T4 and Reverse T3. I sent in my results at NTH yahoo group and the wonderful moderators analyzed and informed me that I was ‘pooling’. So I googled and read up on that, took the results to my endo and ‘begged’ him to switch me to another NDT med. But “No”. His reasoning was that “We don’t know enough about the other NDTs” I offered the information from the STTP book, Testimonials from other NDT patients who had been on Armour before and after the formula change, contact information for three local naturopaths who had extensive experience with other NDTs… all to no avail. He wasn’t interested in learning any more about the NDTs that “We don’t know enough about…”
    He also dismissed the fact that I was ‘pooling’ and got up and walked out saying, let’s go get your labs and wouldn’t discuss the ‘pooling’ issue. He also would not order the saliva cortisol, iron labs or anything adrenal-related, saying that I didn’t have any adrenal fatigue symptoms. Hah! He knows full well that my sleep/wake cycles are totally backwards (here it is nearly 5am and I’m wide awake…. but even my mom cannot pull me out of bed in ‘my morning’ and has never been able to do so. Also, this endo is a #s doctor… if the tsh falls within range, he says I’m ‘on target.’ but ‘target’ to him is to keep me suppressed – which isn’t necessary with Medullary Thyroid Cancer, as it stems from C-cells, rather than thyroid cells. So, he likes to keep me near 0-0.75 and I feel like I am constantly revved, but after so long,, I’m so exhausted that I just crash… usually for 2-3 days at a time. This then wreaks havoc with my other Rx meds (hydromorphone for severe bone tumor pain, opium tincture for chronic diarrhea, and Xanax). When I crash for days, I only get – about every 1/2 hour, because the meds have worn off and I am continually running to the bathroom. I don’t even feel like getting up to take the meds — and then of course I end up in severe withdrawals, feel even worse and go right back to bed. I’m also in divorce litigation (going on 5+ years as ‘ex’ won’t settle anything, but just waiting for me to give up and walk away) so my stress levels are, as you can imagine, through the roof – despite meditation, yoga, exercise, healthy eating, etc… Yet my endo doesn’t think that any adrenal labs are necessary. He says, well, we know you have one foot on the accelerator and one foot on the break, and you’ve been dealing with all of this for a long time, in fact quite well considering all that you’ve been dealing with for all these years. UGH!
    My next every 4 month appointment will be mid October. I’m hoping that I can convince him to order the labs recommended here on STTP. Otherwise I’ll look into having them done myself, but that isn’t likely as Even at discount prices, they’re unaffordable as I’m surviving on a very low SSDI. Right now, my insurance covers the Calcitonin, CEA, TSH, BMP/CBC but even those usually require refiling as they’re denied the first go round. With my current insurance, I pay just a $20 copay every 4 months, so as you can imagine, even one recommended lab test at a reduced $ a lot for me… more than I usually spend on labs in an entire year.
    I also hope, at my next appointment, I can again approach changing to a different NDT. Perhaps they’ve learned a little more than last time I asked… but I doubt it. It seems that the whole practice has changed in regard to their policies in the last year or two.
    The other reason that he’s hard to convince is that he was put off by the information in the STTM book that I took to my visit a year ago….but I’ve gone on far too long so that’s a topic for another post at another time.

    I’d go to a naturopath if I could afford one, but as we all know, most (at least around here) don’t even participate in Medicare so I cannot even file my own claims, and of course Medicare and associated plans usually don’t cover any non-conventional doctors, supplements or other therapies. So I have to rely on my own research and the wonderful advice and assistance from other patients on groups like this and the Nth group on Yahoo.

    I’m familiar with the steady creep of the price in Armour Thyroid, but can anyone tell me just when the formula last changed, how many times it’s changed, and to which other NDT are patients going to from Armour? With which one have most prior-Armour users had the most success/benefit?

    I apologize for having gone on so long… Obviously I’m not very good at all about cutting to the chase and feel like I have to input all the details whenever I write anything…. so thank you for ‘listening’ to this end!

    I really appreciate everyone’s help!

    • Janie Bowthorpe

      Hi Alicia. I’m sorry you have to have such a narrow-minded, close-minded and head-up-his-behind Endo. Here is the info on Armour that you asked about:

      And there are three consistently good brands they are changing to: NP Thyroid (I’m on this one), WP Thyroid or Naturethroid. 🙂

      And even if you change, you’ll still need to address the adrenal situation and potential low iron. If u can order your own saliva test and iron labs somehow, that would be a crucial first step. Maybe a family member could help with the cost of the labs?


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