I have searched and read in this forum (and elsewhere), but cannot find much information on how to stop taking NDT altogether.
In 2016 I started taking NDT - I didn't fall into the hypothyroid levels for THS/FT3/FT4 but had several symptoms since I was pregnant in 2006. (Test results below, before NDT and recently).
Symptoms I had: Cold all the time, loosing hair, thin eyebrows, "fatty" hump on my back neck, puffy face, couldn't sleep, exhausted, no energy.
After years of testing for all kinds of things, my doctor and I agreed that I should try taking NDT to see if it helped (I read a lot on stop the thyroid madness, where she says a lot of people don't have these hormone levels, even though they are hypo). The medication made a great difference at first on my energy levels, but maybe only for like a couple of months? I am not sure - I am definitely back to being exhausted again. My puffy face, thinning eyebrows and hump on neck are all gone.
A lot has happened since I started NDT, my life is a lot better now, much less stressfull. And my doctor retired a few years ago. This has made it difficult for me to get the NDT, I have to order it from Thailand at high costs, not really knowing if what I get is the actual medicine. And I always worry that it will get snatched up in the post, so I lose both medicine and money (and get a fine).
So, all in all, I am wondering if my extreme fatigue/hairloss etc was maybe "just" stress, and I don't need the NDT anymore. So i would like to taper off of it to see how I would feel without it. Maybe the NDT is actually making me feel tired now? I mean, if I really wasn't hypo, what would happen if I took NDT? I would love to see what my body is like without NDT.
- Can I taper like 0,5 grain a week?
- I read somewhere that the thyroid shrinks when you take NDT, so it cannot produce hormones anymore. Is this true? Have I ruined the thyroid?
I will be grateful for all feedback and thoughts!
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I take 2,75 grains every evening before bed.
Lab results in 2016, before NDT:
THS: 2,1
FT3: 4,9
FT4: 14
Lab results 2021, on NDT:
THS: 0,01
FT3: I cannot get this anymore
FT4: 12,8
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Update 22/1-23, 16 days after starting tapering. I have gone from 2,75 grain every evening, to 1,5 grains. So far I feel much better on this dose, will stay here for a few months to see if the T4 conversion will hit me in a week or two. I might try to go down to 1 grain for the summer at some point. As expected the tapering have left my body tired, but unexpected left my brain alert, fresh and happy!
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To be gentle on the body reductions should be done slowly such as a quarter grain every 2 weeks.I tapered myself down to a very low dose of levothyroxine. I felt fantastic for 3 months. Then the lack of thyroid hormones hit home and I became very ill . So please take care.
I wonder if I could switch to levo, when I technically don't have hypo? I'm based in Denmark, and doctors ONLY go by THS, and it has to be above 10 mU/l. Mine was never much above 2.
Thank you! I appreciate your feedback. Do you think I could be hypo even though my numbers were never high?
There are not upper ranges in all the tests, but just "should be greater than"., unfortunately.
My B12 from 2021: 258 (>200)
Unfortunately it is very hard to get anything private medically in Denmark; if I want to have FT3 tested, I have to pay for an appointment with a doctor on the private hospital also, which would run around 3.000 DKK/ 300 GBP. The most annoying thing is that the FT3 test it self is something like 200 DKK/20 GBP. But as there was a rise in the demand for FT3 after a book came out about hypo, they removed that test option.
I will try to talk to my new doctor, but I do not have high hopes; symptoms mean nothing here in Denmark, only lab results, and as mine are normal they will say I don't have anything wrong with my thyroid.
I think about this too, more frequently than I’d like to admit. I’m not officially diagnosed hypothyroid. My TSH went to the top of its reference range but no higher. My GP didn’t want to know about prescribing me levo. All normal, they said. At the time it was easier to self source NDT than it was to get levothyroxine. So I’ve now been on NDT for years and occasionally I scare myself silly with thoughts about what would happen if I couldn’t get hold of NDT, stopped being able to afford it or unexpectedly ended up in hospital with something else and had doctors who refused to replace my thyroid hormones etc etc.
I tried stopping cold turkey once (please don’t try it—it’s not good). I felt great for a month then fell off a cliff and it took the best part of a year to get myself back to feeling like I did before I stopped. Bad bad news. When I went cold turkey, my TSH hadn’t risen from a suppressed position even 4 weeks later and my T4 and T3 levels dropped horrendously under range. I don’t know if it would have risen eventually because I suddenly felt too ill to wait for that happen. I just restarted the NDT again feeling like a complete idiot.
I’ve often thought if I ever did it again, I’d concentrate on getting everything else optimised first before reducing NDT at all. Get my vits and minerals up to good levels, see if I could improve my fitness a bit by doing more walking. Eat well—cut out the processed junk.
And then—and only then—start reducing dosage really slowly. Quarter to half a grain at a time, holding at a slightly lower dose for several weeks, watching what happened to my levels by doing private blood tests. I think the trick would be to hit a point where my pituitary-hypothalamus-thyroid feedback loop might kick back in due to being in a slightly undermedicated state.
It’s a working theory but at the point where TSH started to rise above 1.0 again (if it did—*big* if, cos mine’s been suppressed for years) I’d be more optimistic that it might be possible to lower the dosage further and see whether TSH production would stimulate my thyroid to make more thyroid hormone as I lowered my NDT dosage further. There’s no thyroid hormone production without TSH production, and no regrowth of atrophied thyroid tissue unless the thyroid is prompted to start making hormones. It’s a process that would take months.
But you—and I—would need to be prepared that the experiment just might not work. And that we could just be left feeling rather under the weather for a long time, maybe catching every virus under the sun, needing loads of rest, pacing ourselves, for months on end to the point where we had to give up and accept that replacement hormones were needed after all.
I like to imagine though that at that point I might be able to persuade a GP I needed thyroid hormone replacement so that I no longer had to rely on getting NDT from a private and usually expensive source.
I’m not currently in a healthy enough place to try it. But if I was, that’s what I’ve thought of doing.
This really resonated with me "I scare myself silly with thoughts about what would happen if I couldn’t get hold of NDT, stopped being able to afford it or unexpectedly ended up in hospital with something else and had doctors who refused to replace my thyroid hormones etc etc.". I hate being dependent on illegal sources abroad, and have at all times the freezer stocked with NDT for at least a year.
Very good point about being in a healthy state before trying to taper - and to taper slowly. Point taken about cold turkey, it sounds horrible!
I went back in my notes from when I started NDT, and can see that with 1 - 1,25 grains I felt amazing, and when going higher started getting brain fog, fatigue etc. Maybe I only need around 1 grain? Or did back then, when my thyroid (maybe) still worked a bit. But everywhere I read that you have to take at least 2 grains, so I went higher, even above 3 for a period of time to see if that would help.
I only need 1+1/2 grains but I haven't a thyroid as am post RAI thyroid ablation for Graves Disease.
I'd suggest you try dropping down your dose and just see how you go :
Monitor yourself on physical symptoms such as blood pressure, pulse and body temperature - just as you are meant to and I did when I built up my dose of NDT .
Were your thyroid antibodies are run as your symptoms read as though you may have Hashimoto's - an auto immune thyroid disease - thyroidpharmacist.com
You can buy most things on the internet - including T4 - Levothyroxine which is the most prescribed treatment for hypothyroidism and works well for around 80% of all those who take it.
However since you have been taking the so called " Rolls Royce " of all the thyroid hormone replacement options you may well find that switching to just monotherapy with T4 a bit challenging for your body.
NDT was the original treatment for hypothyroidism and successfully used for over 100 years and given long before we had the science of blood tests and having to reach / score 3 or 5 or even 10 on a TSH reading to get any acknowledgement of being unwell and needing medical assistance.
Do you have any integrated or naturopath type doctors in Denmark as these might be a better source of support though presume, at a cost.
Great point with monitoring temperature and pulse etc; I did do that initially - I raised my resting heart rate from 64 BPM to around 75 BMP (and I am definitely not in good physically shape!). I also don't feel as cold all the time.
We don't really have any naturopath doctors in Denmark, only "real" doctors. I wish it was like in the UK where you can get at least a blood test for a reasonable price. I will try to talk to my doctor though, when I have tapered, and ask for bloodwork. Fingers crossed I will get it.
I did something very similar—my guide in the early days was STTM and in many ways I wish I’d never found that site. Especially back then, when it was almost militantly stating that Levothyroxine could never be enough and that NDT was the only thing worth taking. I did alright on a lower dose for quite some time too but kept reading there that most people needed at least 2 grains and that many settled on 3 grains. And so I did that thing that people desperate to find more energy do and followed the anecdotal advice… when really, the issue was overwhelming stress at work and in my personal life.
I’ve learnt so much since then and try to steer people away from doing what I did until they’ve tried everything else. But many, just like me, are in that state of desperation and just don’t get the support they need from their health providers. I’d been consistently let down by doctors not just for myself but for my husband too. I was at breaking point and had to try something. And it helped, of course (still does!), but now I wonder if I should never have done it.
It is what it is. I am where I am. I’ve decided 2023 is going to be a year of prioritising me.
thank you - this is so similar to me! I also Think it was probably due to stress for me. I agree with the desperate people, I certanly was. I hope you find a good solution.
I tapered off Erfa....felt a little tired so went back to Thyrovanz NZ.....I learnt from thyroid groups it's always good to split your dose throughout the day with the biggest amount taken in the morning....I now only take 25mg Thyrovnaz NZ at 8.30am and 25 mg at 3pm ( any more and have fast heart beats/ palpitations ) Good LUck
I took NDT for more than 10 years, and agree with most of the thoughts here as to whether / if / how others have decided to taper off. JazzW makes some excellent points.
I was able to taper off after more than 30 years of Levo (for awhile), NDT (for awhile) and back and forth, and back and forth. NDT, by far is to be preferred in my decades of experience. Changing any course of treatment for thyroid medication - whether up or down, is usually the best course of action. January 2023 marks 3 years for me having ended all pharmaceutical type thyroid hormone replacement - again after more than 30 years on various T3 / T4 replacement thyroid hormone supplements.
One of the things that concerns me a little about your experience is that you say "exhausted again, puffy face, thinning eyebrows"...which might speak more to needing to increase the dosage rather than decrease (just an idea to consider). I know what it is like to lose a good Dr. We are left to cast about on our own. There are some very experienced people here on HealthUnlocked. When that happened to me, and I could not really find another "good Dr.", I was left to fend and educate myself. I have recently found at least a Dr. who listens and helps me make decisions. Wonderful lady! She herself admits that I know more about Hashimotos than she does (if that is not frightening, I do not know what is). Still, she listens, looks at the research I send to her via email, and helps me weed through what might be less reliable - she is a great one for research - doesn't have an entrenched "Main-stream Medical" attitude.
It is with her help that I discovered why I need thyroid hormone at all. She and Dr. Alan Christianson here in the US. I gave my Dr. - his book, his research on how too much iodine can cause problems for some of us. drchristianson.com/thyroidr... And how reducing iodine from foods, etc. offered at least some relief to more than 75% of those who tried the 30 day iodine balancing diet. Dr. Christianson offers his own brand of vitamins, supplements, etc., but I went on the American Thyroid Associations website and used their iodine reduction food list. thyroid.org/low-iodine-diet/ It's all free. Dr. Christianson offers a mountain of research (for free) - of course the supplements are not free. (And I am not promoting his supplements) I learned that some of us become toxic with just a little too much iodine - and it's the thyroid that suffers.
For me, as with many women, my long journey with a sick thyroid began shortly after giving birth - about two years after giving birth. Why does it happen that so many women have that happen to them? Why more women than men, regardless of whether they have given birth or not? For those that have given birth, it could be in the prenatal vitamins that starts the ball rolling - which contain iodine, and more than some of us can handle. If, like me, we are also poor eliminators of excess toxins (as iodine becomes, year after year of too much) the thyroid begins to suffer. In the US almost everyone has iodized salt on the table. Once again, there is a little more added to an already iodine overload. Add to that what we get in modern day prepared foods, many times with iodine added which may or may not appear in the "ingredients" list. Add to that what appears naturally in almost all foods to a greater or lesser extent, chief among the greater: all things dairy, all things that come from the sea, egg yolks, many things red (like red beans, beets, etc.) and we've added a little more. And yes, even in our NDT, there is iodine - which we must have. We must have iodine for the thyroid to function properly. It is not possible nor desirable to eliminate iodine completely. What Dr. Christianson found is that there is a very narrow window (for some of us) between too much and too little - and if we have reached the level of iodine toxicity, we must reduce iodine to feel better. 30 days on a lowered iodine diet did it for me.
I soon began to have chest pains, and anxiety - all classic signs of too much NDT / Levo. With my personal Dr.s help, I began to reduce the dosage. It took about 3 months to completely eliminate NDT . The blood test numbers, meanwhile bounced around - but I kept telling her I felt much better. The anxiety went away, the chest pains - horrible chest pains, went away. I have found a non-pharmaceutical brand of bovine glandular that I still take in a very miniscule way, like about 1 mg per week. Reducing iodine made all the difference.
Now, instead of iodized salt, I use kosher salt. On this, my 3rd anniversary of being free from pharmaceutical thyroid hormone replacement, I might indulge in a little dairy, seafood, etc. And yes, I usually pay for it by feeling less well for a few days (a little brain fog, slightly less energy, puffiness). You would think I would be kinder to my poor beleaguered thyroid after all these years - and I should be! I didn't believe the many "Stop the Madness", "Isabelle Wentz", nor Dr. Christianson when I tried the iodine reduction protocol. But what choice did I have? The medicine was not working so well anymore. Now, I believe. It really is possible to heal the thyroid - at least to some extent. Main Stream medical says, "Nay, Nay". What I know is that I feel so much better.
May you find your way to better health as well! It is very possible. Oh, and please, share what you find when you get better! So many more are added to the crippled thyroid ranks each day, and are looking to find their way.
Thank you for your thorough reply, I will read it again a few times to get all the details
I don't have the symptoms like puffy face etc anymore/ again, only the fatigue. But I have other stuff going on as well that might cause that, like PTSD. Your doctor sounds wonderful like the one I had that retired - a doctor that actually listened, and loved my investigations etc.
I am super intrigued by your iodine information! I was actually about to start a iodine supplement as that was what I got from my googling - now I will look further into this!
In your original post, I believe you said you take all your thyroid medicine at night. I have been experimenting with my own. PAUL ROBINSON has a whole book on the circadian rhythm. You could have high or low cortisol. It's serious. I know because taking my thyroid medicine at 430am is MUCH different than taking it at 630am. You should check out his website AND email him. Sincerely!
There are genetic factors involved that preclude the idea that “all people will develop Hashimoto’s if they overdose on iodine”, so we know that’s not the case. Genetics, iodine, and estrogen dominance were (I know without a doubt) all factors in my own Hashimotos development AND reversal. It is both complicated and simple (a paradox?). I think that’s why main stream medical does not want to properly address the malady. There is no money in simple cures, and it’s such a knotty puzzle!
Hi, there - I have been a quiet follower of this thread for some time but felt the need to chime in here because I am in the process of tapering down off of NDT. Before I started thyroid medication, I never had a TSH reading over 5 (last read before starting NDT was 4.something but it was climbing about 1.0 every 30 days) so I was technically always inside of the lab range but my FT4 and FT3 were in the bottom 10% to 15% of the lab range. I was exhausted, couldn't lose weight, had brain fog, couldn't sleep, etc. Note that I do not have evidence of a damaged thyroid. I do not have hashimoto's, I have no evidence of an autoimmune disorder in multiple blood draws (have to prove it to EVERY doctor I see), and an ultrasound of my thyroid suggested all healthy thyroid tissue. Also, I am in the USA.
I have lots of thoughts to share but my recommendation here would be: if you are going to slowly taper off, I would reduce very very slowly -- maybe 1/4 of a grain every other day. Make one small change and stay at that lower dose for multiple weeks -- maybe 8 to 12 weeks -- before lowering again. If my research is correct, your cortisol is going to increase to compensate for the drop in thyroid hormone levels when you lower your dose. Cortisol will compensate until your thyroid starts producing more hormones, if it ever will. As you can imagine, this is stressful for your body and is why I suggest going slow. If your TSH has been suppressed, then you'll need to measure it within 30 days of lowering to ensure that you start producing it again as sometimes when you shut it down for too long, it never comes back.
I'm currently on this every other day rotation of NDT: day 1) one 0.5 grain tablet in the AM & day 2) one and one quarter of a 0.5 grain tablet in the AM ... repeat. I've been at this dose for multiple months. My TSH on the last read from about 2 months ago was right at 3.something but my FT3 and FT4 were back in the absolute floor of the lab range (maybe even lower than pre-medication days). And guess what? All of my ugly symptoms are back. Insomnia, fatigue, inability to focus, weight gain, etc. I had low vitamin D but that has been corrected, and I'm supplementing with liquid B12. My life is not stressful at the moment and hasn't been for about a year or more... but because all of my symptoms returned, I've been holding constant at this dose to decide what to do while I look for a competent doctor to help me. I suspect my subclinical hypothyroidism is very real and honestly, I suspect that I may have progesterone dominance (maybe from adrenal fatigue?). The second half of my female cycle is an absolute mess of mild depression, insomnia and mood swings. Honestly, my quality of life is pretty poor and I don't feel like my life is sustainable as it is today. I refuse to believe this is my new reality lol something has to change.
I've tapered off of NDT largely on my own after an endo suggested it a few years back. Honestly, I wish I had had a competent doctor with me to walk me through this but the medical system has largely let me down... hard to find good doctors, for sure.
Best of luck to you and feel free to reach out with questions or if I can help.
Before I started thyroid medication, I never had a TSH reading over 5 (last read before starting NDT was 4.something but it was climbing about 1.0 every 30 days) so I was technically always inside of the lab range but my FT4 and FT3 were in the bottom 10% to 15% of the lab range. I was exhausted, couldn't lose weight, had brain fog, couldn't sleep, etc. Note that I do not have evidence of a damaged thyroid. I do not have hashimoto's, I have no evidence of an autoimmune disorder in multiple blood draws (have to prove it to EVERY doctor I see), and an ultrasound of my thyroid suggested all healthy thyroid tissue.
My situation has many similarities to yours. My TSH never went over 5.7, my Free T3 went down to 8% through range, and my Free T4 went down to about 14% through range. (Figures are from memory - I'm too tired to check my records.) My symptoms were similar to yours. I don't have positive TPO antibodies but my Tg antibodies were once a smidgen over range.
I don't know if I have a damaged thyroid or not. But I do know my pituitary "doesn't look right". It is flat - squashed in one direction and stretched in another. I haven't had any pituitary function tests that I'm aware of other than TSH.
I have several health problems, not all connected with thyroid.
The things I have found most helpful in making some improvements are :
1) Taking thyroid hormones. I started on Levo, couldn't tolerate it at all - made me feel very ill. I couldn't tolerate NDT either. Ended up on T3 alone for several years, but intermittently kept trying Levo and NDT. Eventually was able to tolerate Levo along with T3 after improving nuttrients and reducing cortisol, and have found this Levo + T3 the best combo I've found.
2) Reducing my high cortisol.
3) Optimising as many nutrients levels as I can afford to test.
Nothing would induce me to come off my thyroid hormones. I've tried that 2 or 3 times over the years and it was always disastrous.
And like tattybogle , I'm wondering why you want to come off thyroid hormones?
Thanks for sharing what has worked for you. I was not having a lot of success with feeling good/normal on NDT and often felt over stimulated, couldn't sleep well and wasn't convinced it was helping me. I was also not really able to do any cardio without having my heart rate go crazy. This is what set me down the path of tapering off medication altogether. I feel a bit stuck in my current state/dose because I've invested so much time and effort in getting off NDT that part of me wants to continue reducing my dose to prove to myself that I really can't feel good and function normally totally off NDT. But part of me is sitting here thinking if my FT3 and FT4 are already tanked with a TSH of 3.something, then what on earth do I think is going to happen when I take away the last 0.5 grain? That I'll magically feel better and my hormones levels will improve? Not likely, right? LOL I don't really like either of my options and really am a bit sick of this problem and not being able to find anything or anyone that can help me and paying for expensive testing out of pocket. It's exhausting.
Also to add: If anyone reading this is able to lift weights, do cardio and/or do yoga on thyroid medication, please speak up. These activities have such a positive benefit on my well being and mental state that i need to get it back in my life but am not sure it's possible on thyroid medication.
It sounds horrible for you And I can definitely recognise a lot.
Re being able to lift weights etc, I have found that iron supplements helps me a lot with the general fatigue/ feeling that every single cell in my body is exhausted. I had forgotten this myself, but went through all my notes the past days and found that this helped me a lot earlier, so I have started dosing 80 mg hemo iron a day, spread out over the day. According to my notes I should feel a difference in a few days. (I am not below in ferritin or iron when they do the blood test, but do tend to be in the lower end of the range. I have read somewhere that all females menstruating are probably too low on iron). Well, it is worth a shot I think.
Thanks for posting. It’s really interesting to read your sorry.
For me, the thoughts around tapering off/trying to get off NDT are based on the sinking feeling I’ve damaged myself further by starting thyroid hormone medication on the basis of what many doctors (certainly most GPs in the UK :-| ) would consider to be “normal” thyroid blood tests. I was in a bad place at the time, so desperate to feel better.
I may have medicated myself into a corner because I think if I was to try what you’ve done I’d end up in a similar place. I fear my TSH wouldn’t bounce back (would love to be wrong).
Regarding you and what you should do next, I do wonder whether that tiny bit of T3 left in your remaining NDT dose is enough to be confusing your pituitary/hypothalamus into not producing enough TSH. As I said somewhere in my great long essay above I think those of us in our situation need TSH to rise substantially to get the thyroid to pump out more T4 and T3. We see all the time here unmedicated people who struggle along with TSH where yours is, with similar bottom of the range FT4 and FT3 results. Maybe your TSH won’t rise further until you drop it altogether…
Or it might not rise further at all. Thyroids don’t have to be atrophied for it to be a version of hypothyroidism. It can have a secondary cause.
Secondary hypothyroidism can, as HumanBean mentioned above, be caused by a pituitary and / or hypothalamus not responding the way it should. When I was about 10 years old, I had a bad knock to the head as a result of class mates enthusiastically taking down a netball post without looking to see whether someone was in the way. Kids being kids, they just laughed and I was so embarrassed I tried to make light of it but I remember well how very odd I felt afterwards. I also lost a fair amount of blood in childbirth. Both these sort of things can cause pituitary failure (or certainly partial failure—it doesn’t have to be an all or nothing thing).
Hard, isn’t it?
The alternative (for me at least) is to front up to what I’ve done with the next friendly GP I encounter. Or (and it’s recently occurred to me it might just work, given all of the GPs at my surgery have moved on), I could even style it out and say I was diagnosed with hypothyroidism by a private doctor 23 years ago and chose to self-medícate but now want to try levothyroxine. Might be the best way for me to go, should there come a time when I just can’t get NDT any more, particularly as I know they lost my previous medical notes when I moved home in the year 2000….
definitely possible. I’ve no thyroid but I “run” in the slowest meaning of the word. I’d love to do yoga as I’m sooo inflexible. So don’t discount it just cos you are on thyroid replacement. 😁
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