Informed thyroid patients are officially a bother, says the American Thyroid Association

The American Thyroid Association is losing its marbles and squirming in its uncomfortable seat thanks to informed thyroid patients.

Oh boy. Here we go again with a brand new nutty focus by the American Thyroid Association.

The American Thyroid Association (ATA) has recently released a dim-witted and negative article towards informed thyroid patients, based on the ATA’s own biased survey with a hidden (but obvious) agenda, titled Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism. You can find it in the ATA journal, called Thyroid, Volume: 29 Issue 11.

Who was surveyed?

According to the abstract of the article, the survey was directed towards physicians, whether Endocrinologists or Primary Care doctors, of which 63% responded. It states that “almost half of the physicians reported that patient requests for tests and treatments were somewhat to very likely to being a barrier to appropriate management of thyroid hormone therapy (46%)”. Endocrinologists “were more likely to report patient requests as a barrier”. (Well duh, informed patients would exclaim, as they find most Endo’s to be rigid, arrogant, and narrow-minded.)

“Physician-reported patient requests included requests for preparations other than synthetic thyroxine (52%), adjusting thyroid hormone dose based on symptoms when biochemically euthyroid (52%), maintaining thyrotropin level (TSH) below the reference range (32%), and adjusting dose according to serum T3 level (21%).”

“Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them…”

The gist of the article is that thyroid patients who are requesting certain “tests and treatments” from their doctors are erecting “barriers” because of those requests, i.e. barriers against “appropriate management of thyroid hormone therapy.”

i.e. how DARE informed thyroid patients request certain tests and treatments that years of patient experiences reveal has helped!!

How DARE informed thyroid patients learn from years of patient experiences before them and request the same tests and treatment which patients before them used to get well!!

And of course, how dare we go against “appropriate management of thyroid thyroid hormone therapy”–the very therapy which has kept millions in a continued hypothyroid state for decades now. Sorry ATA, we as informed patients are not fooled by your “appropriate” therapy below which we will gleefully stand FIRM against.

  1. Treated with T4-only (which has kept millions of us since the 1960’s with continued hypothyroid symptoms in our own degree and kind)
  2. Being held hostage to the man-made TSH lab test range (which patients noted has caused continuing hypothyroid symptoms)
  3. Your refusal to prescribe the Reverse T3 (RT3) lab test since it’s “unnecessary” (in spite of the fact that rising levels clog our cell receptors which lowers Free T3)
  4. If T3 is added, failing to give enough to treat one’s need for direct T3 (and of course, because T3 lowers the TSH–an abomination!)
  5. Calling us “normal” based on erroneous ink spots on a piece of paper (in spite of clear problems related to what is called “normal”)
  6. Treating clear results of a continued hypothyroid state with more prescription drugs (hypothyroid depression, anxiety, easy weight gain, hair loss, pain, etc)
  7. Discounting the reality of adrenal/cortisol problems from their “appropriate” treatment as bogus.

And then the second birdbrained comment….

After the comical idea that patients should never request certain tests or treatment which would be inappropriate for proper care, the ATA comes up with another batty conclusion:  that if a doctor DARES to “adhere to patient requests”, it may be a “driver for inappropriate care and lead to harm”.

*Yawn*

No ATA, if informed patients (who’ve read the patient-to-patient Stop the Thyroid Madness and/or the books) manage to wisely convince a doctor what they sorely need to feel human again, that doctor is being WISE and HELPFUL. i.e. T3 in their treatment, getting the free T3 optimal, ignoring the low TSH when on T3, and understanding that a reaction to T3 is more about a cortisol problem, just as having a high RT3 can be about low iron or inflammation.

Bottom line

The American Thyroid Association is clearly reacting uncomfortably against the informed patient push contrary to their long-held and HARMFUL beliefs and protocols which have NOT worked for patients and have kept us sick for decades.

No ATA, it’s YOU and the medical professionals who follow your pea-brained ideas which has harmed patients. Put your empty opinions and arrogance on the coat rack and LISTEN TO NEARLY TWO DECADES OF PATIENT EXPERIENCES AND WISDOM in getting well again on Stop the Thyroid Madness. WE are the evidence.

REFERENCES:

The abstract: https://www.liebertpub.com/doi/abs/10.1089/thy.2019.0383

From PubMed: https://www.ncbi.nlm.nih.gov/pubmed/31436135

Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.

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46 Responses to “Informed thyroid patients are officially a bother, says the American Thyroid Association”

  1. DJ

    So, The American Thyroid Association – I’m guessing their studies are largely funded by the pharmacuetical company that manufactures Levothyroxin/Synthyroid? Or what is the root of the T4 obsession? Where did that begin?

    Reply
  2. Bailey

    This hits close to home today. After a few years of struggling to treat on my own and arguing with my husband about his desire for an “actual diagnosis”, I went to establish care with a new doctor today. I have been taking NDT over the counter for about 3 years, until 5 weeks ago. I am miserable. Since stopping the NDT I have chronic headaches, depression, gaining weight rapidly, the list goes on. I stopped taking the NDT in hopes of getting “clean” labs and working with a doctor that would help me sort things out *facepalm* I know better. I left today feeling worse than when I walked in and with a prescription for Zoloft, which I have no intention of taking. This doctor told me that the labs I requested were unnecessary because TSH tells us when our thyroid isn’t working properly. That having little to no TSH (as a result of the NDT) was harmful. Never bothered to ask why I thought I was hypo, when the depressed feelings started or accept that it correlated with when I stopped the NDT. They would rather tell me I am depressed and the fact that I have no body hair and am going bald at the age of 34 and have horrible struggles with my cycle among countless other red flags for hypo, is normal.

    Reply
  3. Amy

    I hadn’t needed a doctor until hypo hit. I have been appalled at what I have experienced. Simply put my education allows me to challenge them and I have found terrible diagnostics, improper dosages, testing … I have been forced to have $$ procedures which I feel were intended to pad their wallets. I am not exaggerating as in one case I filed a formal complaint and the insurer went after them. I had a “mere” chiro find in 15 min what 7 “specialists” missed. I refuse to ever see an endo again, they were the worst. I have family overseas and needed a surgery which my expensive insurance here denied 2x despite 5 surgeons saying I needed it asap. It would have cost me 120k here. I had it done in Germany for 13k and with far better technology. I have no doubt the ATA is recognizing the change in patient education and pushing back. This is big $ but at our expense. To think an educated patient is interfering with proper care, ha! Tell that to some of the docs who hung their head when I figured out my own issues with some help of course. None of them deny my diagnoses today. I do believe the doctors were worried about me but the US health care system dropped the ball and repeatedly. This is a systemic issue and they are not unaware…I had some enlightening conversations more than once. We need to fight to protect our health and pay attention to laws which may be deleterious to us. I am concerned that will be the next move to protect their pockets. I have written to my representatives on the subject but we need a big name or a physician to represent the cause so to speak. As a patient I adamantly enforce my own care and I verify everything before agreeing to it. I do not want to “play doctor” I feel I have too.

    Reply
  4. C. Mitchell

    I honestly can’t imagine how irresponsible any doc could be, not to give patients any & all tests they or their insurance are willing to pay for. Since all humans (and computers too, actually) are fallible & miss things sometimes? Along with all the benefits of simply giving the patient the full peace of mind they need? How is that not worth the money they’re paying you for your time? Is the test you think they don’t need really any different from a second opinion? Yes, because you’ll have more confirmed information at your disposal for the both of you. Your job will be completed to an even further degree, so you both rest easier. Complaining about performing one’s *full job is approximately as backwards & corrupt as any officer who complains about the extra time it takes to not use violence. If you don’t think you have the time to handle it, fine; just pass the paycheck to a qualified person who does & we’ll all be better off.

    Reply
  5. Dorothy

    This article is a good example of what happens when medical schools shut-down curiosity and questioning of their students, and encourages medical paternalism. Instead of these researchers & doctor at the University of Michigan surveying what happens when patients assert themselves, perhaps we all would be better served if they spent their time questioning and researching why so many treated thyroid patients continue to have symptoms (and develop better treatment strategies).

    Especially irritating and unacceptable is this comes after a 2016 research study finding hypothyroid symptoms remain despite treatment. Dr Antonio Bianco, past ATA president and a researcher in this study said “Doctors should be telling their patients, ‘I’m going to normalize your TSH, but you’re going to be at a higher risk for gaining weight, experiencing depression and fatigue. It is also more likely that your cholesterol will go up.’ ” This is beyond nonsense and should be malpractice.
    https://www.rush.edu/news/press-releases/hypothyroidism-symptoms-linger-despite-medication-use-normal-blood-tests

    Reply
    • Susan Siens

      Dr Levy, in his book about Vitamin C and its uses, discusses why doctors are such utter conformists.

      Reply
  6. Linda Duncan

    My latest Endo visit was a real challenge. It was all I could do NOT to walk out.
    In the visit as usual they check all my weight and BP etc… so all that was very normal (except for my consistent 25 lbs overweight that I have been HOLDING since I started Armour Thyroid in 2015. (Though I have no longer gained weight since starting Armour Thyroid)

    The medical group UTMB in Galveston TX, is also a College branch. Which means that an Intern will do the initial evaluation questions. The questions are about which supplements/vitamins I take and a discussion about the previous labs. For my own records, between the last 6-month visit, I have been paying for my own labs about every 6 weeks. They have shown improvement with my antibodies, iron, cholesterol, T3s and T4s, which have been normal or just a little low. TSH has been below 0.01 since I started Armour. BUT Armour has made me feel more balanced. When I get these results I pay for, I can change my diet to keep healthy, as well as I know how.

    The Endo Drs I have seen, are constantly telling me that I need to lower my dose. But I know that when TSH is 2.+ or more, I don’t feel good and have a hard time participating with family or enjoying anything, I will also have anxiety and gain weight feeling no energy etc.

    I told the intern that I would be keeping my dose and doing the same as I have been since the last visit and would appreciate the Dr ordering the Labs (STTM) recommended. I even had to raise my voice to insist I get these checked for their records. Paying out of my own pocket within the last 6 months, I wanted THEM to use my insurance and have the latest results on record. Also, insurance won’t pay for labs but every 6 months or only every year!! I disagree that waiting that long in-between labs only gets me way off track and sick.

    Anyway, when the REAL Dr came in after the Intern had spoke to her behind closed doors, the Dr backed up the Interns diagnoses and recommendations. I really was angry. Why would I trust someone with very little experience about the symptoms and individual labs that a Hypothyroid disease puts us through. If I tell them that “I’m feeling as good and close to normal but would like a check on labs” then they should want a good count on labs for ME.

    Since their last labs, I had been having trouble with my anemia OR too much iron, and had to beg them to check my blood count. (they wanted me to go see a Hematologist then!!) Frustrated as I felt, then the Dr said to me “you really need to get a PCP for those blood tests” (it appears that this Endo only wants to study TSH and T levels.)

    I disagreeded and told the DR that the thyroid controls blood and Cholesterol, and checking the Antibodies would be a good sign that you’re not going through unnecessary pain and inflammation etc.!! And To keep a count on the Ts 3 & 4 as to check the total balance, is what I NEED.

    She then asked me “Do you know what TSH is?” I thought for a second why she asked it that way… then told her “It’s a hormone”. She then said how do you get it? I told her, your pituitary gland tells your thyroid to produce Thyroxine. I think she was testing me… But then she mentioned If you have too much causing a very low TSH count, then it can cause you a heart attack or Stroke in time. Then she still insisted that I lower my dose of meds.

    I asked the Endo Dr “Do you have hypo?” and she said “No” So then I said, “How would you know how I feel?”
    She then agreed that she wouldn’t but that the Medical guide lines that many Drs must “GO BY “are what She must implement under the “Standards”. Then the Endo left the room and wanted me to get my Thyroid labs done after a month (which is 7 months between testing for her records)

    Well… as I was leaving, I looked straight at the Intern in training, and said, I was not coming back. Her expression appeared as if she had accomplished her “Treatment recommendations, in spite of the fact I wasn’t coming back”
    I really felt alone and helpless about who I could trust to GUIDE me. I know I will “again” be looking for another Dr. and how could I possibly go to a PCP Family Dr who probably doesn’t treat Hypo patients. It’s stressful to deal with people who haven’t lived it. ☹

    Reply
  7. Paige Kelley

    If you’re female, fat, and forty, (or over) guaranteed, the physician will tell you to “exercise and lose weight.” That’s what happened to me when I turned 40 and had unexplained symptoms. I countered with, “I run 3 miles a day and have lost 35 lbs in the past year. Is that enough for you?” Then the neurologist walked over to my purse, picked it up, and said “It’s too heavy. Lighten it up.” He also declared I had too much stress in my life and it could be helped by massage therapy. (which was conveniently offered through his office) I told him that now that my two toddlers napped at the same time, and the other was in school, my life was wonderful. I LOVED having little ones. He ignored me. The next visit, I even had a suggestion for a diagnosis…which he immediately dismissed. “Too rare! Impossible!” Next visit, I showed up with a CT scan ordered by my primary, and its results/reading- which indicated the exact diagnosis (sarcoidosis)he had so arrogantly dismissed. He FINALLY ordered some tests.

    Several years later, I repeatedly told my rheumatologist that I felt like I had been run over by a Mack truck. She insisted that I must do aerobic exercise. I said the only thing that helped was working in my garden. “Not aerobic enough” she said. I showed her a picture of the retaining wall I had built. “Well, no wonder you hurt.That’s TOO much!” she said. (Cue eye roll) I ended up getting a second opinion. I was hypothyroid and had a Vitamin D level of 17. My rheumatologist didn’t appreciate the second opinion, and became snarky and unprofessional, as well as very dismissive of the treatment recommendations of the fibromyalgia/fatigue clinic. (Which included bioidentical thyroid) I ended up leaving her. She missed the obvious clues I had been giving her. She could have solved my problem on her own, but apparently I was only a fibromyalgia and sarcoidosis patient to her- and she couldn’t see beyond that. As a doctor, she should have known that people develop other problems that need to be treated, but she had developed tunnel vision.

    It’s been 19 years, and I continue to see only one of the doctors from those years, a wonderful pulmonologist. A good primary went into concierge medicine. The rest are long gone. As a nurse, I have no tolerance for incompetent or dismissive and arrogant physicians.

    Reply
  8. Mary Renken

    I found a perfect companion survey of hypothyroid patients:
    https://www.ncbi.nlm.nih.gov/pubmed/29620972

    Reply
    • Janie Bowthorpe

      Bingo. And satisfaction would have been even higher is they knew to raise until optimal, and had good iron and cortisol to be able to raise well.

      Reply
  9. Catherine

    So they can create a Frankenstein such as myself by removing half of my thyroid due to papillary carcinoma that rarely spreads outside the neck anyway and where the treatments are often more harmful than the cancer and then refuse to take responsibility and treat us? That is what I am reading. Let’s put them in our shoes and see how much they enjoy their quality of life!

    Reply
    • Susan

      I have had TSH tested and doctors say it’s normal. However I have so many symptoms of thyroid problems but docs are just throwing more and more prescriptions At me to treat symptoms. I asked for a full thyroid panel of blood work but when I got to the lab it was only another TSH. The doctor said unless it was abnormal there was no reason to test anything else.

      Reply
  10. connie hill

    What is the latest on change in NP thyroid? I have gained ten # in one month all the sudden! What’s an alternate treatment?

    Reply
    • Janie Bowthorpe

      The latest is that it sucks. Run. Alternatives listed on this blog post (and sign up to be notified by email about new blog posts on the bottom of any page on STTM): https://stopthethyroidmadness.com/2019/09/23/the-sad-saga-of-where-we-are-today-as-hypothyroid-patients/

      P.S. When you have signed up and get an email notification of the blog post, DO NOT REPLY TO THE EMAIL. Click on the underlined title of the blog post and post directly on the blog post. 🙂

      Reply
    • Liz

      I too have gained an excessive amount of weight this last month on 240 mg NP thyroid??

      Reply
    • Montana NAR

      I have also gained 10# on this last bottle of NP Thyroid.

      Reply
      • Susan Siens

        Wow, you all make me feel lucky. I’m still taking NP Thyroid and I am definitely under-dosed due to concern about further stressing my overstressed adrenal glands. But I haven’t gained any weight! Do any of you take Lugol’s solution or another form of iodine?

        Reply
      • Rachel Hamlin

        I’m on a call with Acella now on hold trying to talk to their NP specialist. THe first line rep says no change was made when I said that was false she said the only change was in supplier, that the porcine thyroid comes from europe now and she speculated it was how they were raised but claimed that no filler etc had changed. Again using the “cosmetic” change line which I told her was false. In any case when I started crying about how this was going to ruin not only my life but my young kids. SO I got through to DAvid as some have mentioned and he gave me a case number but says it should be fine this new supplier was thoroughly vetted and claims that they’ll send me a mailer to send some pills back.
        In any case – if enough people call and go through starting a case file maybe they’ll start to take us seriously……

        Reply
        • Susan Siens

          I will do as you suggest, Rachel. What I have noticed about my NP is that it now leaves a paper residue under my tongue which it did not do before. I can also drink a little coffee which I could not do when the medication was working more effectively (got jittery even with just a little bit).

          Reply
  11. Wes

    I hope this does something to the bad endo doctor community. I am still suffering with hypothyroid issues with being on just T4. I can’t find a doctor, in Central NC (Durham/RTP) to give me the T3 I need.

    Reply
  12. Z.M.

    Wow, doctors are really proud of destroying lives, huh? They seem to love it when patients are suffering and ill. Guess it makes them more money. I believe in science but have no faith in doctors. STTM helped me when doctors never could. Doctors told me for almost ten years that there was nothing they can do for my symptoms. I followed the STTM protocol and now I’m better! Amazing how dumb doctors are. It seems all they learn in medical school is how to rake in the $$$$$$$.

    I firmly believe that this is also because women are the main sufferers of thyroid illness. Doctors are mainly men. By refusing to treat female patients, they’re able to stop women from advancing. It also means male thyroid patients suffer because they can’t get treatment. Just another example of the medical community listening to their prejudices instead of their patients. (John Oliver’s Last Week Tonight had a great segment on this issue for those who aren’t familiar with it.)

    I’m glad we’re a bother to the ATA and endocrinologists (who are the worst ‘doctors’ I’ve ever met). They don’t believe in science. They only believe in lining their own pockets. Keep up the amazing work, Janie! We’re with you all the way.

    Reply
    • Catherine

      Agreed. Especially when they are a woman over 40 complaining. They view us as weak and easy to brush over. Even the female doctors! I had a female endocrinologist that was rude and abrupt and took no consideration for how I felt.

      I had half of my thyroid out when 32 yrs old. I am now 46. At the time of removal I predicted that my symptoms would be dismissed as aging and my prediction is apparently correct based on the overwhelming amount of responses on Sttm concerning their doctors treatment of them.

      One day the medical community will look back and see our current standard of treatment as barbaric. Eventually alternative medicine will merge more and more with traditional medicine and everything will change. Unfortunately, we are just victims of our time.

      Reply
    • Susan Siens

      I agree with everything you say, Z.M. Doctors AND nurse practitioners are grossly ignorant and have no interest in educating themselves beyond the textbooks they read in school and whatever the last drug salesman they saw had to say. I have come to the conclusion that the “medical profession” tends to attract people with serious mental and emotional problems who like having power over people.

      Reply
  13. K

    Wish to god a class action suit could be brought forth
    And legislation enacted to force them to abide by the hippocratic oath of “do no harm”

    Reply
    • Susan Siens

      Some form of mass protest, instead of our individual howls, would be most welcome. Frankly it appears that nothing gets through to doctors except a swift kick to the [you fill in the blank].

      Reply
    • Rayann

      Well the Physician Assistant I was seeing told me very sincerely that he lived by the motto “do no harm” it was very important to him. That’s why, he told me, even though I have just about every hypo symptom there is, he could not give me T3. I said, well I still have all these hypo symptoms and you know they’re hypo symptoms because you said they were so what are we going to do about that? He just shrugged….

      Reply
      • Janie Bowthorpe

        Wow. I have never heard of twisting the Do No Harm as a reason to withhold T3. But it makes sense if they think T3 is harmful..which is incredulous.

        Reply
        • Susan Siens

          So what do they do with people who make sufficient T3? Lower it so they can get sick as well? My husband is an RN and he completely believes that most doctors WANT people to be sick so they can make money. I have heard two RNs say they think doctors want patients to become diabetic (which I believe as it is fairly easy not to become diabetic if you know the first thing about nutrition). Stuff that up the hole in your face, Dr Phil.

          Reply
  14. Di

    Australian nurse Sister Elizabeth Kenny went through this, fighting to get past the medical
    community’s group think at the time. Her treatments worked! But they were not in the
    official textbooks, so they would not even listen to her–even though her patients
    were walking in front of their eyes!

    Reply
  15. Di

    AARGH!! Australian nurse, Sister Elizabeth Kenny, went through this–trying to get through to
    the medical community, and counter their erroneous group think at the time. Her methods actually worked, but they were not
    in the official textbooks, so she was laughed at.

    Reply
  16. Mary Renken

    Somehow, I picture most of these annoying patients as women over forty. Not all, but most. When the Docs start with, well, you ARE getting older…

    Reply
    • Jenny

      Mary, I now am one of those women (over, in fact well over) forty – but when the doctor first told me when I asked for help for these symptoms ‘Well, you are getting older…’ I was twenty three. TWENTY THREE!!!!! And decades later am still suffering from these arrogant and stupid men (most of them are men) – and certainly three of those I encountered seem to have had sociopathic or psychopathic tendencies – those three seemed to get some sort of delight from actually LYING (pre internet when it was so much easier for them to get away with it as we couldn’t look anything up). One – the only one who took my temperature,three decades ago, told me that my body temperature of 35 degrees C was normal. Used to Fahrenheit, and being desperately hypo (as I now know, too late) I eventually queried his statement, and he said ‘normal for you’ – it should have been 37C or nearly five degrees Fahrenheit higher. And he got away with it. ‘First do no harm’ – my foot! For two decades until I got the internet I struggled to get through each day with a temp that rose to 35 but each afternoon dropped to 33 (in bed with six hot water bottles, unbearably cold), unable to work – yes, adrenals on top of hypothyroid and also Cell Danger Response, I know now, but my doctors (a different lot of sadists) ignored that.

      Thank God for the internet – we must keep it free and fair!

      Reply
  17. James West

    At Ann Arbor VA I find the medical students tend to parrot the lies verbatim that they hear so they’re able to give the “right answer.” Nevermind that discerning truth is discouraged almost with blunt force trauma. My primary care physician at Ann Arbor VA openly admits he knows “little” about thyroid care, but asserts that it is” simple as ABC”.
    VA has gone to hell in a handbasket!
    I’m not kidding.
    James West

    Reply
  18. Russ

    The find-a-good-doctor list seems outdated.
    Can we start a thread about Doctors who are actually working with us?

    If so, I’m near Orange County in Southern California and would appreciate the names and location of any good Doctors within 75 miles of me.
    Thanks in advance!

    Reply
  19. John Triggs Triggs

    They keep prescribing drugs that have nothing to do with the management of our health. I took LevoThyroxine for 5 years. My GP kept prescribing the same thing but added Blood pressure, Cholesterol and anti depressant medication. When I asked for Whole Thyroid she refused. I changed GP’s and my health improved within 5 days. If I had relied on mainstream medicine I would be dead. John, Auckland New Zealand

    Reply
  20. Jill

    Janie Bowthorpe, I just love and appreciate you and STTM sooooo much! Reading this made my day. Your writing gives me hope and energy. Also, this time your illustrations made me laugh out loud, as a release to decades of time-wasting, endless struggles with incompetent, moronic endocrinologists and know-it-all Drs. THANK YOU, thank you, thank you for this article and for ALL that you do!!!
    STTM People: United, we will never be defeated! ✊🙌

    Reply

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