20 Ways that Hypothyroid or Hashimoto’s Patients are Gaslighted

It would make an incredible horror movie. THE PLOT: stunningly convince hundreds of millions of individuals worldwide that what isn’t a good thing, really is. That what appears to be so, isn’t. 

Or that leaves only look green because of alien filters in your eyes. That ripe apples fall because invisible evil hands pull them down. That fire doesn’t burn your skin–it’s only your imagination, so ignore the fake pain and blisters. 

That giving you only one of five thyroid hormones…a storage hormone called T4 with the name of Synthroid, Levothyroxine, Eltroxin, Oroxine, etc…is all you need to adequately treat your hypothyroid state. 

Because if those in authority say so, it must be so…right?

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The gaslighting of hypothyroid patients for decades

If you have never heard of the term “gaslighting”, it describes a form of manipulation by an individual or enterprise. The result is to cause you to doubt your own intuition, intelligence, perceptions and natural wisdom.

Here’s what gaslighting does: 

  • implies a person in authority knows what he or she is talking about or doing, over your own inner wisdom and observations.
  • makes you question your own self.
  • makes you second guess what is going on and your own perceptions.
  • spins a false interpretation of reality.
  • tries to put the blame on you.
  • makes you feel crazy.
  • is a way to benefit the person or enterprise pushing the delusion for their own aims. 

20 ways that Hypothyroid or Hashimoto’s patients are gaslighted–which ones are you?

  1. Authoritatively putting you on only one of five thyroid hormones as if it’s an adequate treatment, as if relying solely on “conversion” to get T3 is all you need (Yet all along, there was a proven treatment that contains all five thyroid hormones, including some direct T3, called Natural Desiccated Thyroid. But of course, you aren’t told, or it’s efficacy is grossly misrepresented)
  2. Telling you that Synthroid or Levo etc is the gold standard of hypothyroid treatment i.e. adequate, easy to dose, reliable, then sending you off into the world (Yet for all too many, sooner or later, T4-only meds have been problematic for millions, in their own degree and kind, for over five decades, as reported by patients worldwide about themselves, relatives, friends, etc)
  3. Implying the TSH lab test, aka Thyroid Stimulating Hormone, is a reliable way to diagnose or dose by.  (The TSH is a pituitary hormone, not a thyroid hormone, with a lousy “normal” range, and with a history of lagging behind for years and thus preventing diagnosis, and more)
  4. Implying that those continued symptoms, whether at the beginning or the longer you stay on T4-only, are somehow your fault, about your life situation, or in your imagination (examples in #5, #6, #7, for example. See the best list of symptoms on the net)
  5. Telling you that you need to “eat less” or “exercise more” (as if easy weight gain is totally your fault or in your control, instead of the fault of a poor treatment with T4, or the use of the TSH)
  6. Sending you to a therapist (as if your hypothyroid-caused depression isn’t related to your T4-only treatment…when it definitely can be… or can be due to the lack of a diagnosis)
  7. Saying your afternoon fatigue is due to “being a mother” or “part of getting older” (yet we see that need for a nap go away for the majority once optimal on NDT or T3 with optimal iron and cortisol)
  8. Implying that you have “separate” conditions which now need more medications only (like rising cholesterol, higher blood pressure, depression, fibromyalgia, and more…all which can be clearly related to a poor treatment and which either go away or improve, say many patients, once they have T3 or NDT in optimal amounts)
  9. Stating that Natural Desiccated Thyroid (with all five hormones) is outdated and thus a reason to avoid it (Hmmm. Then I guess so is listening to the radio, talking to people live on the phone instead of on Facebook, or sending a real birthday card instead of an internet one…should be avoided since they are outdated.)
  10. Saying you’ll get heart or bone issues if your TSH goes below range while optimal on NDT or T3 (Patients have noted that it’s not only normal for the TSH to go that low when optimal, but they see improved bone and heart health! A low TSH on NDT is NOT the same as a low TSH with Graves disease!)
  11. Stating that it’s rare for anyone to be above 2 grains, aka one grain is 60 or 65 mg depending on brand, so your continued symptoms aren’t related (Yet there are many patients who aren’t optimal until the mid-or-upper 2’s, or in the 3-5 grain range. It’s individual where optimal falls.)
  12. Implying that continued hypo symptoms while on NDT or T3 proves they aren’t needed (There are understandable and correctible reasons.)
  13. Stating that Natural Desiccated Thyroid is not for Hashimoto’s patients (contrary to the majority of Hashi’s patients on NDT who have reported great gains once they get up to their optimal amount)
  14. Stating that iodine is the worst thing for every and all Hashimoto’s patients (in spite of those with Hashi’s who discovered that iodine lowered their antibodies if they used it correctly with supporting nutrients. It’s individual and each Hashi’s patient has to find out for themselves). 
  15. Saying that NDT or T3 for those over 60 is dangerous (yet many patients this age range report huge improvements from using it safely and wisely, such as starting low, building in small doses, watching labs, learning how to read labwork, etc)
  16. Implying there’s no such thing as adrenal fatigue/hypocortisolism (yet many get low cortisol, as proven by saliva testing, due to the inadequate treatment of Synthroid or Levothyroxine, and suffer from it.) 
  17. Stating that the use of hydrocortisone (Cortef) in the presence of extremely low cortisol three or more times (as proven by saliva testing) is dangerous or should be kept low (in spite of how patients have successfully learned how to use HC safely and wisely as outlined in chapter 6 of the revised STTM book)
  18. Underscoring that if you are “in range” with your lab result, you are doing great (We learned that it’s where we fall that has meaning, not just being in range.)
  19. Stating that you should not go by what is said on the internet, such as on Stop the Thyroid Madness (STTM) or the books (in spite of the fact that it’s all based on 15 years of repeated, solid, patient reports and wisdom; can include studies to back it up on several pages; has the support of many other practitioners….etc)
  20. Implying you are a “difficult patient” because you dare to state what you have learned that is contrary to what the doctor says (See Things we have learned)

So you see, the horror movie plot has been a reality for hypothyroid patients.

Like a few years ago. A couple saw the STTM book in my vehicle and struck up a conversation with me. She was on Synthroid; he was on Levoxyl–a former T4-only med. They had each been on their T4-only treatment for 12 and 14 years respectively. They felt their hypo was perfectly treated and they believe in their doctors. So the other problems they dealt with were separate: his rising cholesterol, her depression, his fatigue, and her weight gain. But of course, they felt those have nothing to do with their T4-only treated hypothyroid, as some of it was their own fault, and their doctors are right…leaves aren’t really green, invisible hands make ripe apples fall, and fire doesn’t really burn.  Gaslighting.

Sad.

 

 

 

 

 

 

 

  • Check out the best list of hypothyroid symptoms on the net, totally based on reported patient experiences, reliable, and not culled from other cold lists to bulk it up. They can even occur on Synthroid or Levothyroxine, report patients over the years.
  • Have you Liked the STTM Facebook page? One of the most helpful thyroid Facebook page on the internet and based on reported patient experiences and the wisdom gained. 
  • See research that can back up what patients have learned (and there is more on individual pages)

P.S. The photo is an actor portraying a zombie. It’s simply to represent a horror show.

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42 Responses to “20 Ways that Hypothyroid or Hashimoto’s Patients are Gaslighted”

  1. Sharon Parshall

    I am so grateful I did the research and found “Stop the Thyroid Madness” and convinced my doctor to take me off Levothyroxine and put me back on NDT. On Levo, I had terribly painful leg cramps at night, low energy, foggy thinking, and I had restless legs every night. On NDT, I have no more leg cramps or restless legs.

    Reply
    • Martina

      I am located in Austria and was diagnosed 3 years ago with Hashimoto’s and put on Thyrex (Levothyroxine) right away. It helped at first, but I had to increase from 25 microgramm daily to now 125 mcg daily. I read a lot on NDT but I can’t get it here in Austria. No one here believes me that you can be “in remission” with Hashimoto’s or any other auto-immune disease really like the countless people I “met” online. Doctors here in Austria keep telling me I can’t get off Thyrex and always will be on it but I refuse to believe that. Still before taking it, I had intense pain, hair loss and all the stuff. I don’t want to quit it without a better plan! Can anyone help here?!

      Reply
      • Janie Bowthorpe

        Martina, success with getting off thyroid meds when one has Hashi’s has to do with whether you caught the autoimmune attack on the thyroid quick enough i.e. the thyroid wasn’t terribly destroyed by the attack because it was caught towards the beginning. Those people can get off thyroid meds if they stop the attack, and they do so with medications like Low Dose Naltrexone and getting off gluten, etc. But if the attack was going on awhile, and still is, there is a possibility of never being able to get off. By the way, patients in countries where NDT is almost too hard to get at least at T3 to their T4. Or they have NDT sent in to them.

        Reply
  2. Eric

    Great blog post and reminder to be true to self and symptoms. Thank you Janie.

    Reply
  3. Andrea Williams

    Jamie, I am on Amour 60 in the morning and 30 in the afternoon and I have Hashimoto and it is extremely debilitating. I am getting cold after I eat and it does NOT matter if it is ice cream or piping hot soup and I have to put on warm clothes because I am just shivering like crazy. Now in the afternoons regardless of whether of not I have eaten, I have the shivers where I will shiver for a 5-10 seconds then have a maybe 5-10 minute pause and repeat. This usually starts about 430-5 in the afternoon. I am going to a doctor at a UNIVERSITY run medical clinic now: Wake Forest Baptist Medical. I am also on meds for adrenal insuffency 10 am and 5 pm.

    Reply
    • Janie Bowthorpe

      Hi Andrea. It’s very unlikely that 90 mg is an optimal dose, based on what we see in each other for years. And if we have low cortisol, it’s not about doing adrenal meds twice a day like that. Chapter 6 in the revised STTM book is how we learned to do it successfully, which also applies to Adrenal Cortex.

      Reply
  4. Michelle Johnson

    I’m not able to lose weight and my body and face will retain fluid on and off quite suddenly. It’s very unpredictable and I have really bad fatigue I’m on 2.5 grains (acella) and these were my recent labs so I was hoping you could provide me something advice. I don’t know whether to increase or decrease my NDT, add cytomel or even synthroid.

    FT4 13 (9-19pmol/L)
    FT3 5.2 (3.1-6.2 pmol/L)
    RT3 14 (18-25 ng/dL)
    RT3 Ratio – 23.6

    Reply
  5. Michelle Johnson

    Also, in your experience have you heard any patients actually doing well on desiccated plus a little bit of T4 like Synthroid?

    Reply
  6. Mary MCDonald

    Hi! I have been on Armour Thyroid for about 30 years, (currently at 90 mg last 5 years) with one small stint of Levithyroid years ago. I have Hashimotos. Over the last 2 months I am very anxious and feel heart pounding. I am talk, thin active 58 year old. My blood test in December showed (for the first time ever) a High level of T3 at 6.7 (range for LabCorp is 2.0. – 4.4). TSH and T4 were normal. I want to consider taking my doctors advice and switch to T4 only. It really just dawned on me today that the anxiety/heart pounding are not normal. Your thoughts? Are there times when I do need to trust the lab work/AnD symptoms and switch?

    Reply
    • Janie Bowthorpe

      Sadly, Mary, this is what happens to people who stay underdosed for so long…as you have probably done. i.e. your adrenals may now be stressed, thus the high free T3, which is called pooling. See http://stopthethyroidmadness.com/pooling And the heart poundin and anxiety are due to excess adrenaline i.e. your body is alarmed now.

      So we’ve learned that in this situation, it’s going to be time to test all four iron labs (because iron may have dropped due to being continued hypo all these years) and order and do a 24 hour adrenal test, not blood, to see what you will need to treat. http://stopthethyroidmadness.com/recommended-labwork

      And we are forced, in a situation like yours, to go down a bit to stop the reactions.

      Then once iron and cortisol are treated, which will take a little while, and we can raise NDT back up, it’s important to learn what to look for this time around to find our optimal dose: http://stopthethyroidmadness.com/natural-thyroid-101

      Reply
      • Janie Bowthorpe

        And no, it’s not about switching to the lousiest way to treat hypo. Your doctor is not caught up yet. It’s about all that I wrote, based on years of reported experiences and wisdom…

        Reply
      • Mary MCDonald

        hi. Did you mean I might need to go lower than 90 mg on my Armour thyroid until I get a new blood test and saliva testing done? Is saliva testing still about $150 most places? I did it years ago and was flatlined all day. But I do need to find out where I am at now since I take Hormone Replacement Therapy for the last year and a half and I love the help it has given me as far as mood and skin quality.

        Reply
        • Janie Bowthorpe

          Hi. We stay at, or we lower to, the amount that doesn’t cause us problems. It will mean we are still hypo, but at least it’s an amount that doesn’t cause further stress and excess adrenaline. Saliva testing can be a little lower than $150 at many places.

          Reply
  7. Mary MCDonald

    Mary again here; regarding my post. Aren’t there times where you have seen some of us “may have” to switch back the other direction?? From Armour to Levothyroxine?
    Or should I just decrease my Armour thyroid 90 to 60 mg?

    Reply
  8. Dianne

    Hello, I have Hashimoto’s and I’m 22 years old. When I was first diagnosed with the condition I was put on levo, but quickly found a doctor that would prescribe me NDT. He started me on 1 grain. I’m up to 2.5 grains, and am still having no luck losing weight with a HR consistently in the high 50’s. My temperature sometimes drops under 97.4 in the morning, but I don’t trust my thermometer’s accuracy too much to be honest. My rT3 has been high before, and my T3 seems to hang out just below the range. My ferritin was also low in my last labs. Would I benefit from attempting to dose 1.25 grains in the morning and 5 mcg of T3 two times after that? Thanks for the help!

    Reply
    • Janie Bowthorpe

      Hi Dianne! Congrats to the world of NDT. A few things to share with you. First, NDT is not a weight loss drug. It’s more about giving you back the thyroid hormones you may not be getting, which in turn will improve your metabolism.

      Second, we all had to learn what optimal means, which 2 1/2 grains may not be for you. Study this page and especially the green graphic which explains what to look for to know when one is optimal. It’s IMPORTANT. http://stopthethyroidmadness.com/natural-thyroid-101

      Third, if RT3 has been high before, that always points to either inadequate levels of iron, and/or a cortisol issue–both which will need discovery and treatment before you are going to soar on NDT: http://stopthethyroidmadness.com/iron-and-cortisol

      Reply
  9. Samantha

    I get a racing heart at night. It doesn’t last long less than half hour sometimes up to an hour but it happens 8+ hours after my last NDT dose. I’m on 2 grains per day. Is it possible to get a racing heart from still being hypo?. My last free t3 was 67.74% of the range.

    Reply
    • Janie Bowthorpe

      Samantha, this is just a guess and not a diagnosis, but we have noted that when we are underdosed (as two grains is for the majority), the effects runs out too quick and we get more hypo. When the latter occurs, our hearts can race. Study the green graphic on this page to see what constitutes an optimal dose: http://stopthethyroidmadness.com/natural-thyroid-101

      Reply
      • Samantha

        I was thinking the same. I think if it were a problem with say too much NDT then I would experience it shortly after taking medication. My family is relocating to Canada soon and I think I’ll have to switch to ERFA, do you know if people are still have lots of problems with it?

        Reply
  10. Terri

    My thyroid was completely irradiated 30 years ago. October 2016 I switched armour. Does the information about labs and ranges still apply to me?

    Reply
  11. syb

    I just switched to np and this us my first week and until yesterday everything seemed good. Today m y heart races like crazy…well it just seem like it. I’m on 1 grain 30mcg. Should I up it?

    Reply
  12. Michelle

    I was recently diagnosed with hypothyroidism and put on desiccated thyroid. My TSH is suppressed (I’m on a 2 grains/day) and I was wondering if your TSH is suppressed is your thyroid gland active at all? Can it still convert T4 to T3?

    Reply
    • Janie Bowthorpe

      Probably not much. But as we see it, it doesn’t matter, as the thyroid wasn’t producing enough anyway on its own… But yes, unless you have a mutation preventing it, you can still convert T4 to T3 that you are giving yourself, though having direct T3 is important, too as you are getting with NDT. 🙂

      Reply
  13. Janice

    Has anyone on here switched from NDT to Iodine and supporting supplements?
    I have been on NDT for over 15 years. I am on 2 grains (130mg) once per day.
    Thoughts? Experiences?
    thanks,

    Reply
  14. Sharon

    I am new and am concerned about my recent testing.
    FT3 1.89
    FT4 1.7
    TSH went from 1.05 to 0.27 in a year
    I did a round of HCG in January to lose some weight for the first time so this could be the reason.
    My primary care doc who is treating my thyroid has me on .15 of levothyroxine and so did my endrocronogist years ago when I went to him. I am wondering if I should explore other options and maybe find another doctor. Please help!

    Reply
  15. Sharon

    The ranges are:
    TSH 0.27-4.20
    Free T3. 2.50-4.30
    Free T4. 0.8-1.7

    Thanks!!!

    Reply
    • Janie Bowthorpe

      Based on what we’ve learned in each other for 15 years now, your free T4 is way too high. We start making higher levels of RT3 when our FT4 is over 1.4. And that can explain your miserably low free T3 i.e. when RT3 goes up, T3 eventually goes down. And the latter makes you more and more hypothyroid. Are you on too much T4?? If you are, the body tries to clear it out by having it convert to more and more RT3 instead of T3.

      Reply
  16. Sharon

    Levothyroxine is a T4 medication, is that correct? If so, should it be lowered or should I suggest I go on a completely different medication? Sorry for my ignorance!

    Reply
  17. Yvonne

    I am seeing a naturopathic physician to treat my symptoms. TSH 1.24 (0.04-4.50) free T4 1.1 (0.8-1.8) Free T3 2.5 (2.3-4.2) Thyroid Peroxidase antibodies 7 (<9 IU/ml). My tsh varies and was 3.97 a few months back. My Dr is treating me with nature-throid 16.25 mg qd for 2 weeks now. Am I on the right track? My ultimate goal is to be healthy and lose weight. Despite exercise and a wheat free grain free diet I have been unable to lose weight.

    Reply
  18. Gretchen

    Hello all, I’m very new to all of this and I’m trying to learn about how to interpret lab results…so much confusing information out there, but I’m hoping someone might be able to help me decipher the numbers a bit. I have practically every symptom of Hypothyroid there is: extreme fatigue (take naps virtually every day and NEVER wake up refreshed), 40+ lbs of weight gain, severe abdominal bloating with certain foods (bread and pasta for sure), brain fog, hair is breaking and thinning and has very poor texture, eyebrows are thinning on the sides, hard to swallow sometimes, irritable bowel, returning carpal tunnel like symptoms even though I had surgery to correct that years ago, puffy face, swollen eyelids, depression, mood swings, memory problems, and I wake up a couple of times a week feeling like I’ve swallowed something and am choking in my sleep. The debilitating fatigue is probably the one thing that bothers me the worst. I wake up tired and I’m tired throughout the day. I had blood work the other day and here are my results.
    TSH 2.7 (0.40-4.50 range)
    T3 Free 2.7 (2.3-4.2 range)
    T3 Reverse 14 (8-25 range)
    T3 Uptake 31 (22-35 range)
    T4 Free 0.9 (0.8-1.8 range)
    T4 Total 6.3 (4.5-12.0 range)
    I didn’t have the antibodies test, but will do that in the morning in addition to retesting the TSH as I have read on various websites, that the time of day can in fact make a difference in the results. I figured since I was going back for the antibodies test anyway, that I’d just double check it. I don’t have insurance and don’t have a doctor yet. My thought was to order the tests first (so much cheaper doing it on my own rather than having a doctor order them) see if anything was glaringly obvious…and then go about trying to find a doctor. Anyone have any thoughts about the information I’ve given? I really appreciate the consideration and am learning so much on this site, so thank you. Oh…and another side note, I’m adopted and don’t have much information, but I saw a notation in my file that said my maternal grandfather had a goiter operation. Not sure if that is relevant, but thought I’d mention it.

    Reply

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