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?

****************

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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68 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
    • Janie Bowthorpe

      Never heard of HCG causing a thyroid problem. Also, you didn’t provide ranges so it’s hard to comment on those…

      Reply
      • Britney Yancey

        Hi there,
        I am 29 years old and got diagnosised with Hypo back in August 2016 when I gained a sudden 15lbs. I am only 5ft so that was a huge shock to me. I had a lot of stress going on and over exercising. Once I stopped exercising so much, all the thyroid mess started happening. My wellness doctor switched me to WP thyroid from snythroid and feeling so much better! My body aches and energy levels are back to normal. Still feeling the brain fog, can’t lose any weight, and my body seems swollen (esp my stomach). My resent labs were as follows:
        I am on 130 mg WP Thyroid

        TSH: 0.01
        Free T3: 3.3
        Free T4: 1.33

        My doctor says my numbers are fine but I still do not feel or look that way!

        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
  19. Gretchen

    Hi Janie, Thank you for the response. I had my TSH retested in the morning (first time was late afternoon) and this time it was 4.23. Both Hashimotos antibodies were 1. I assume that means I can rule Hashi’s out now and the higher TSH is perhaps more accurate because of the morning blood draw? What’s the best way to find a Houston doctor who will take me seriously? I’ve been complaining of these same symptoms for more than 15 years and have been told there is nothing wrong with my thyroid.

    Reply
  20. Britney Yancey

    Hi there,
    I am 29 years old and got diagnosised with Hypo back in August 2016 when I gained a sudden 15lbs. I am only 5ft so that was a huge shock to me. I had a lot of stress going on and over exercising. Once I stopped exercising so much, all the thyroid mess started happening. My wellness doctor switched me to WP thyroid from snythroid and feeling so much better! My body aches and energy levels are back to normal. Still feeling the brain fog, can’t lose any weight, and my body seems swollen (esp my stomach). My resent labs were as follows:
    I am on 130 mg WP Thyroid

    TSH: 0.01
    Free T3: 3.3
    Free T4: 1.33

    My doctor says my numbers are fine but I still do not feel or look that way!

    Reply
    • Janie Bowthorpe

      Compare your results to the following page and see if they fit where patients find themselves when optimal and feeling great: http://stopthethyroidmadness.com/lab-values It’s not about just falling in the normal range….

      Reply
      • Britney Yancey

        My numbers seem fine compared to that page. But I haven’t done a saliva test,iron, or the thyroid antibodies.

        My temp last night was 96.2. When I took it this am it was 98.0.

        When I did an allergy test, my Candida albicans came back high. So I have been taking Candida blasters and watching my sugar intake.

        I used to see an endocrinologist back last summer but he put me in synthroid, water pills, metformin and adipex. None of these things helped. So I got off all of them and found a more holistic doc. He doesn’t specialize in thyroid but got me on WP thyroid and feel much better.

        I would love some helpful insight, I feel very alone and frustrated/ slightly depressed. Do you have any advice for me going forward?

        Reply
  21. Marleen

    My doctor just increased my NDT from 2.5 to 3 grains a day but he said I should take it all in the morning. Is there a better or more common way to split 3 grains?

    Reply
    • Janie Bowthorpe

      Our experiences over the years have found it better to split it, such as 2 grains in the morning and one grain in the early afternoon. The direct T3 in NDT has a short half-life, thus splitting. i.e. NDT is not Synthroid, where you do it once a day (and which leaves all too many with continuing hypo symptoms). See http://stopthethyroidmadness.com/natural-thyroid-101

      Reply
      • Marleen

        That’s what I was doing before when I was on 2.5 grains (1.5 in the am and 1 in afternoon) but these pills are 1.5 grains each so I think the best I could split them up would be either 1.5 (am) and 1.5 (afternoon) or 2.25 grains in the am and 0.75 in the afternoon. My doctor isn’t very knowledgeable with NDT or writing prescriptions for it but he’s wiling to try anything to help. Should I try to get the prescription for 3 – 1 grain pills a day so I can take 2 grains (am) and 1 grain (afternoon). Any insight you have would be great! And thanks for keeping such an amazing site on thyroid!

        Reply
        • Janie Bowthorpe

          My optimal dose is 3 1/2 grains, so I take two in the morning and 1 1/2 in the early afternoon. So I get the two grain and one grain pills, but all one grain works, too.

          Reply
          • Marleen

            I already have a 3 months supply for 1.5 grains twice a day so hopefully I’ll be able to switch after that. Does your doctor have to write anything or word it special for that or does the pharmacy just fill yours like that? Thanks so very much.

          • Janie Bowthorpe

            Doctor writes it the way I want it.

  22. SCM

    Janie,

    I’m on 50mcg levothyroxine. Symptoms are persisting and my GP is not interested so planning on self medicating with NDT.

    Does the dose recommend in your Thyroid 101 post (start on 1 grain, raise by 1/2 every fortnight aiming fo 2-3 grain mark) apply to everyone or do people like me who are on a low dose of thyroxine need to start lower?

    Many thanks.

    Reply
    • Janie Bowthorpe

      Based on 15 years of reported experiences, it seems to apply to everyone. It’s the final optimal dose which is different from person-to-person. Some are optimal somewhere in the 2 grain area. Some are optimal in the 3-5 grain area (I’m in that area). A very small minority are higher.

      Reply
  23. Tim D

    Hi Janie.
    I’m a 55 yo white male living in Australia. I have Hashimotos.
    Currently around 140kgs, yes I have the all too common sudden weight gain issue with inability to lose it once gained.
    I’m on 200mg per day of Eutroxsig, anything less and I get a funny precursor in the form of Benign Positional Vertigo (BPV) which lasts about 3-5 weeks before it subsides. To get back to normal I usually take more for a week or so.
    My labs are as follows
    TSH 0.05 mU/L (0.40 -4.00)
    Free T4 24 pmol/L (10-20)
    Free T3 6.0 pmol/L (2.8 – 6.8)
    My quack is concerned about the very low TSH levels, last few years its been hovering around that.
    My quack keeps advising me to take a lower dose to get my T4 down but I know if I do I’ll get BPV again, so Its a bit of a catch 22 situation.
    I cant find a thyroid specialist who will recommend NDT let alone be that versed in the subject. I have asked my doctor about it and he just echoes the guidelines that all doctors go by.
    Looking around I cant see a supplier of NDT here in Australia, maybe someone from here can advise.
    What do you suggest I do ?

    Reply
    • Janie Bowthorpe

      All we can tell you is that your free T4 is too high. It’s probably converting to RT3 to clear it out, and rising RT3 makes one hypo. There is compounded NDT in Australia, so you’d need to find a doc for that.

      Reply
  24. Tim D

    Hi Janie,
    I found http://www.compoundinglab.com.au (Brisbane) and http://www.acpharm.com.au (Sydney) will do it but only if you get a prescription, price is around $75-90 for 100 capsules, (made from imported Porcine) , I’ve been told that a daily dose of 200mg of Eutroxsig/Oroxine is equivalent to about 120mg of NDT (2 grains).
    They tell me that I could find an integrative practitioner on http://www.acnem.org
    I hope this info helps all Ozzie sufferer’s.

    Reply
  25. the_pan

    So I switched from Synthroid to NDT (Thiroyd) and got really ill. I know readers here insist it’s because my adrenals are taxed and other things might be off balance but the leading Hashi specialist in Canada here insists you guys feel better on NDT because you didn’t raise your T4 only meds high enough because the Dr. would have dosed based on inaccurate lab results. Has anyone here done T4 only and dosed according to symptoms alone before switching to NDT? My specialist says that NDT has a T4 and T3 ratio of about 5 to 1 while a human’s thyroid would produce those hormones closer to 10 to 1. So her reasoning is I got sick on NDT because I am not able to raise it high enough to get sufficient levels of T4 before I am overwhelmed with too much T3. Anyone have thoughts on this? My specialist also suggest I change to Westhroid if I insist on getting all the hormones because the ratio will be correct and not from porcine, yet the site says T4 and T3 is in fact from porcine so wondering if the formula has changed since… starting to feel pretty screwed.

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  26. Amanda

    Hi, I’m 26 and was diagnosed with hypothyroidism in March 2014. My aunt has Hashimoto’s and when I told my UK doctor that, no further testing was done and she simply said ‘well you probably have that too.’ Not knowing ANYTHING at all about Hypothyroidism, Hashimoto’s or anything else thyroid related, I asked if further testing can be done to give a firm diagnosis and was told it wasn’t necessary. Naively, I didn’t push and just upped my dosage until I was in a ‘normal’ range. Not surprisingly, 3 years later and I’m on 125mcg of Levothyroxine only with a TSH level of 2.7 and still feeling awful. Sometimes better, sometimes worse – on a good day, I’m still struggling to lose the extra kilo’s but feeling energetic and motivated, happy and like myself…on a bad day I’m foggy, EXHAUSTED and struggle to get myself going and even then I can’t make it through the day without a lie down. I also get regular migraines and from time to time also; irregular heart beat/racing, shivering and anxiety. I have two children so I have to get out of bed and get through the day but I feel physically and mentally drained on a bad day and I hate it! Even though I’m present and doing stuff with the kids I don’t feel fully there. This all sounds like depression but I started feeling like this at the same time I had my Hypo diagnosis and it definitely hasn’t got any better yet. I have recently moved to Germany (sept 2016) and my new doctor here is great so far…thankfully he doesn’t just go by what the tests and the numbers are showing him but I’m really just wondering if anyone has any advice for me; what do I need to ask for to make sure I’m covering everything and getting the right info? I need a definite answer to what kind of Thyroid problem I am dealing with – up until now I accepted the ‘Hypothyroidism or Hashimoto’s triggered by childbirth and stress’ answer but I need to feel like (and look like) myself again; I have two children that need me to be healthy and I’m about to start applying to do my Teaching degree over here. It’s such a relief to see that I’m not alone with how I’m feeling so any help or experience is so welcomed, although I’ve been on T4 (Levo) for 3 years now, I’m still such a newbie! Thank you.

    Reply
    • Janie Bowthorpe

      Hi Amanda. One of your biggest problems is being on Levo. It’s just been a lousy treatment for millions over the years, and depression is one of many results of being on a poor treatment. http://stopthethyroidmadness.com/t4-only-meds-dont-work The same page will mention what does. And second, people with Hashi’s need to keep track of their antibodies to see if they need extra help to get them down. http://stopthethyroidmadness.com/hashimotos I would also strongly recommend getting the revised STTM book, so you can start your journey to being better informed, because we HAVE to be in light of doctors who don’t get it. Book Depository online in the UK has it.

      Reply
  27. Marcella Haman

    I have had a Hpothyroidism Hashimoto surgery .Put me on Levothyroxine 50 MCG TAB. I HAVE THE FATIQUE EVEN AFTER A GOOD NITES SLEEP.FEEL FOGGY,WHEN I WAKE UP.GAINED WEIGHT,BLOOTED STOMACH,LEGS ACHE VERY BAD .CAN’T WAIT TO SIT DOWN,SHORTNESS OF BREATH. HAD A AORTA HEART VELVE PROCEDGER DONE.ABOUT SIX MONTHS AGO. HOPEBYOU CAN HELP ME.REALLY HAVING A STRUGGLE WITH BEING HOT AND COLD. THANK YOU FOR YOUR HELP !

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