I’m just wondering if anyone has tried weaning off their thyroid meds? I discussed it recently with my GP who was also curious and happy to monitor me.
My thyroid is suppressed and on my recent bloods my FT4 was <1.8. If I weaned myself gradually off could my FT4 increase and now I’m feeling better my TSH and conversion normalise?
I don’t know how much of my thyroid is damaged or if it still functions at all. But I won’t know unless I came off T3 to find out. Maybe saving a lifetime on T3.
I’ve heard some function on half a thyroid without meds and some have had their thyroid return to normal. I know it can also depend on the cause.
Has anyone tried this? What are your thoughts?
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I am assuming that this statement "My thyroid is suppressed" means that it was your TSH was 1 or lower (i.e.suppressed)? I am assuming you were taking T4/T3.
If you were taking T4 (levothyroxine and inactive) alone it has to convert to T3 (the Active thyroid hormone). It is T3 which is needed in the T3 receptor cells and needs to be optimal for our body to function as normal. The brain and heart have the most T3 receptor cells.
Yes I’m on T3 only my FT3 was 7.8 on 62.5mcg so had to reduce it slightly.
With a suppressed thyroid would my thyroid not produce FT4? So if I came off T3 and my thyroid was no longer suppressed would it begin to increase my FT4 and possibly convert to FT3?
I presume that you have underactive thyroid which was originally diagnosed by high TSH? If that is so then no your thyroid will not miraculously have repaired itself and be able to produce enough thyroxine for you to lead a normal life. How come you are on liothyronine only? Do you have a history of poor conversion? Do you have hashimoto’s hypothyroidism? It may be that you are over medicated but unless you have a conversion problem or a rare thyroid hormone resistance you would need TSH, ft3 and ft4 as well as vitamin and mineral blood tests to know how well you convert ft3 to ft4. I do not know how well you convert ft4 to ft3 but without full blood tests or some history it is not possible to give informed advice.
Yes I’ve done all of that and researched a lot since I was first diagnosed 4 years ago. So managing everything quite well atm relating to my thyroid.
I’m on T3 only as I didn’t convert well and was still ill on thyroxine. Now I’m in a good place I’m interested to see how my thyroid would function if I came off T3. I have hashimotos. I’m just interested to know if my my thyroid is not inflamed and not being attacked by my immune system if it could function again?
Why do you think your thyroid is not being attacked? Even if it isn't being attacked at this precise moment, it obviously has been, in the past, for you to need that high dose of T3. I take 75 mcg T3 only because my thyroid is now completely dead from Hashi's. So, it's doubtful that there's enough left of yours to produce enough hormone to keep you well.
And, poor conversion is a symptom of Hashi's. There's no reason to think that would have improved. I would say that if it ain't broke, don't fix it. If you're in a good place now, don't risk that by messing around with your replacement. Coming off thyroid hormone replacement could not only make you very ill, but could also mean that you'll never quite get back to the place your in now. I think quite a few people have experienced that after a reduction in dose, going back up again never has quite the same effect that it did the first time round.
Can you explain why my thyroid can’t function again after reducing a high TSH? Our bodies are great at healing and repairing and I understand this isn’t the case for all organs etc, but what evidence is there to show this isn’t possible?
From what I understand with hashimoto’s your immune e system attacks and eventually destroys your thyroid. Research supports that going gluten free can lower antibodies and slow down destruction but that there is no research that shows reversal of damage. I could of course be wrong or not have found this research. If you have found reputable research I would love to read it as I would love to be proved wrong. I wish you well on your journey to better health.
An underactive thyroid can be fixed to a certain extent. The thyroid as a gland has some regenerative potential, but it is notoriously slow at regenerating (1,2). It might take months and years, especially if large portions of the thyroid are already destroyed.
It has been reported that thyroid function spontaneously returned in 20% of patients with Hashimoto's. ... This regeneration may often be missed in adult patients because they are assumed to have hypothyroidism for life and antibodies and ultrasounds are not usually repeated after the initial diagnosis.
TSH tells your thyroid to produce thyroxin. The only reason it's suppressed is because your getting it from your meds; nothing has healed. Did you get your antibodies tested? Are they normal now?
There's a diet that is for auto immune diseases that has had success healing people's "leaky gut", one of the causes of thyroid disease.
Google AIP.
It's extremely restrictive and although it works great for some people, even to the point where people who have caught their disease at the very beginning can come off meds, it doesn't work for everyone and people can end up being more sensitive to more foods once they start eliminating foods from their diet.
The idea of finding the "root cause" for the attack on the thyroid is partnered with this AIP diet. The idea is to correct the root cause and so stop progression of autoimmune diseases and acquiring new ones. Testing for SIBO, parasites, EBV, mold, Lyme and more is done usually when people have conversion issues. Treating these conditions is difficult and often take many attempts.
You could try researching AIP and root causes. Read Izabela Wentz.
Also research LDN. I don't think it's available in Britain. LDN reduces inflammation so well that people are reported to have reduced their Thyroid meds. ( I tried LDN and it I couldn't tolerate it)
I have never read of anyone "weaning off" their meds. Meds are only reduced when people start getting hyper symptoms.
All I can say is that I have had a suppressed TSH for over 15 years. Initially diagnosed with Hashimoto's in 2000, my doctor at the time prescribed T4 only but wanted my TSH between 0.05 and 0.1 as he claimed that would calm down antibody activity.
I have been on NDT since 2014 and my TSH has been <0.01 since.
Earlier this year, I went back on levo only hoping it would normalise my TSH ahead of a doctor's appointment (as I knew the doctor in question would not like my suppressed TSH). Since it took 200 mcg daily to suppress it earlier, I opted for 150 mcg daily which used to keep my TSH between 0.5 and 1. However, my TSH wouldn't budge; after eight weeks on levo only, it remained <0.01. I later read that a TSH that has been suppressed for a long time may never normalise. So it's not a good idea to go back on levo for that reason.
If you are a poor converter, you'd need to address conditions that can impair conversion (vitamin and mineral deficiencies) or hypo symptoms will come back once back on levo.
I understand exactly what your saying. But suppressed to me is preventing the thyroid functioning, so yes there is a risk if the thyroid is not dead that the immune system will attack it again once no longer suppressed.
But what if the thyroid has regenerated to some degree. If you’ve improved your diet, reduced inflammation, corrected vitamin levels? There’s lots of what ifs.
I don't believe that thyroid glands in patients with full-blown Hashimoto's can completely regenerate and start function normally again. I know it's a controversial subject, though.
But I don't think that taking levo instead of T3 will help your thyroid gland heal.
There is evidence of thyroid regeneration as most with underactive thyroid are caused by hashimotos. And individuals have had some success. But I believe this is down to the individual and I’d assume how much damage there was to their thyroid.
I wouldn’t take Levo as it didn’t benefit me. My question wasn’t based on taking Levo but thank you for your comments.
Honestly, I think you’ll regret it. You had a TSH of 149 when this all started. That’s not just a failing thyroid, that’s a thyroid that’s pretty much kaput.
I know how much you don’t want to be beholden to replacement hormones. You’ve had that chiropractor mention that things can be fixed... but in reality... Unlikely.
If your TSH had been mildly elevated when this all started, well maybe. But the other thing that happens when you take T3 is sometimes permanent alteration of the pituitary axis. Your TSH may never rise sufficient to stimulate the production of enough T4.
Haha yes kaput is a good word for it. Only now consultants are telling me I was pretty sick. Yep I was but no one really acknowledged this at the time.
Just a note: My TSH was 150 I was given Levo which almost killed me. after a few months I was given t3 Lio only. All problems disappeared and I was back working 24/7 . After many years on t3 feeling well the doctor decided to lower my does from 40 by 20(med. too expensive) every second day. My memory was effected: could not remember my own phone number, card details,pws etc ; complete loss of energy; unable to work; my heart started to play up; depressed etc.
On my blood test t4 could not be seen, my t3 was well below reference and tsh touch the minimum on the scale after six weeks so my doctor was happy and said we will continue with this. Ha ha
but.
I am now back on 50mg(officially40) t3 a day and I have got my life back.
The point I wanted to make is do not mess around with t3 without a good reason. Always see how you feel before you make and drastic changes.
Give up gluten, soya .......make sure you get all you vitamins and minerals sorted. Good Luck!
I was wanting personal experiences or evidence so you’ve helped me. Opinions are just that but speaking from experience is invaluable in helping others examine how they manage their medication.
You want personnel experience? OK. I was diagnosed in 2000 with a TSH of about 11, TgAB in the thousands, and TPOab just over-range, very low FT4/3. Didn't do well on levo, tried T4+T3, NDT, and eventually ended up on T3 only. My thyroid was declared officially dead in 2007.
In 2013, for complicated reasons I won't go into, I came off T3 completely, cold turkey. I was taking 225 mcg T3 only daily at that point. Still felt hypo. I stayed off for six months, at the end of which time I found I was putting on weight. I can't tell you if I had other hypos symptoms because I was pretty ill at that time with non-thyroidal things. Got my thyroid tested, and TSH was 45. Not exceedingly high, a lot lower than yours, but higher than my diagnosis. Seems I never make much TSH, compared to Free levels. However, my supposedly dead thyroid had managed to make miniscule amounts of T4 - not much in the way of T3, though - enough to keep me alive. Whether that was because some thyroid tissue had regenerated, or whether it hadn't been dead at all, there's no way of telling. But, it certainly hadn't regenerated enough to keep me alive much longer, that's for sure. And, I started taking T3 again.
We know that thyroid tissue can regenerate a little, we see it in TT patients. And, we know that the body can cure itself of a lot of things. But, there are limits. Deliberately testing those limits doesn't seem a very good idea to me. I nearly died in 2013, from several things. I'm very lucky to still be here. I put my faith in my body healing itself, and it failed me. I needed antibiotics, and a host of other drugs, initially, ending by going back onto T3. Why did I stop T3 in the first place? Briefly, I would say, delirium followed by a strong dose of denial. Lesson learnt. And I would never recommend anybody else try it.
‘Now I’m in a good place I’m interested to see how my thyroid would function if I came off T3.’
If you are in a good place and feeling well, I’d stay there. There are so many people on here who are struggling to get into that position or even to be fortunate enough to be prescribed T3.
As for your GP’s ‘interest’ - I’ll bet she is. It’s not her life that might go down the pipe if this experiment doesn’t work. You may find it hard to get your meds back to a place where you feel good as it always takes time to build to the right point and for your body to adjust.
It’s not really success getting from bed ridden to functioning. But I’m definitely in a better position. I would just rather be in a great place physically and healthy
I get the feeling that you are quite young? If so, the enthusiasm of youth may be making you impatient? ... My best advise is: "Rest a while". ... Sit back and give your body a chance to improve some more on your current meds. ...Then see what you think. ...In any case ..... Hugs to you. <BIG HUG!> And smiles! ;~)
Thank you for your kind words. Not sure if 46 is quite young haha I’m just not one to sit back and accept my fate that a pill can replace my organ and there’s nothing I can do.
Tbh I wouldn’t be where I am now if I hadn’t tried and tested different options in my recovery to find what works for me. Thank yuh Gingersnap202 x
OMG don't do it... If you feel well now do not mess with anything. Do not be the guinea pig for your doctor's experiment!!
Once your thyroid is damaged to the point that you are on T3 medication it's highly unlikely that it will recover; that's why people are on medication for life. Unless you are having hyper symptoms do not do this.
This is what will happen when you, "wean off T3".
At first, your Adrenal gland will kick in to keep you going. You'll feel great for a bit, then start having panic attacks because you're being flooded with adrenalin because it can't be regulated like thyroxin. Then after your adrenals are spent, you have months of adrenal fatigue and be unable to function.
Your stomach acid will get low, you won't be able to store vitamins and iron and end up deficient and anemic. This will add to your crippling lethargy, and take months, maybe a year, to correct
Who knows what else damage will happen from starving your organs from T3.
Your doctor has just proved s/he knows nothing about thyroid disease and all the ramifications that go with it.
If it's not broken.. Please, please, Don't fix it.
Look at this as an autoimmune disease rather than apoorly functioning thyroid gland.
With any autoimmune disease a tiny proportion of people may 'miraculously' go into remission. (Thats not to say it may return at a later date.) But I would say these cases are far and few between, some are questionable. And the general prognosis is an autoimmune disease is progressive.
My aunt struggled with myasthenia gravis all her life, and because she had that, she then developed a host of other autoimmune diseases to make her life really miserable. She had two girls, and one was also diagnosed with myasthenia gravis. Within a year, she apparently had gone into 'remission'. Ie she no longer met the 'requirements' of that autoimmune disease. However, it does not mean she is now symptom free, and has to live very carefully and be tested regularly incase it comes back. And of course, the question is now asked, wherever she really had it at all. My mother also had an autoimmune disease (vitiligo) which she developed (she swears after getting badly sunburnt at the age of 17), that progressed and the patches got bigger and bigger over the years.
I am a big believer in the body being able to heal itself, but I do think an autoimmune disease is a different kettle of fish. Nobody really knows what causes an autoimmune disease to start. (Genetic, damage, etc). Once you have developed autoantibodies, the immune system 'remembers' them. Just because you don't have them showing in your bloods, or they lower, does not mean they have been erased from the memory banks.
Another metaphor is like measles. You get vaccinated, you have the virus, you feel ill, you develop antibodies to the measles. They are now in your immune system memory bank. Next time you come across the virus, you may feel slightly unwell, but that is because the antibodies have kicked in and are fighting the virus. You may come across the virus loads of times more, without even realising, because this time you don't feel unwell at all. Thats not to say you don't have the antibodies, or that they are being triggered. We know that the virus is the trigger, but you may not know you are exposed to it. In hashimotos the trigger is an enzyme that the thyroid gland creates. (Need to double check the validity of that statement!)
In theory, if you could 'reset' your immune system, reverse any damage that contributed to the original development of the autoimmune disease and find out what the other unknown cause is and fix that, then you might be on to something. In reality, unless you live on your own, don't mix with people, restrict your diet and environment have access to a complete bone marrow transplant, I would think it is very, very difficult! I would also think, if there was any chance, it would be something you need to do within the first few months of developing it, I think once you have had it for a while it would be too far gone.
So, you have three issues here:
1. Hoping your thyroid gland will heal itself from the damage caused by the attack of your own body – and hopefully be able to produce enough thyroid hormones again once healed.
2. Removing the conditions which allowed the autoimmune disease to develop in the first place. (Tricky as we don't actually know, could be genetic, environmental, physiological etc.)
2. Erasing the immune systems memory – so it does not attack ever again - tricky.
(I have also thought about wherever I could heal myself – can you tell?! )
Its a horrible thing to think you are on medication for the rest of your life, and when you feel well, its hard to believe that you are ill and its easy to think that you don't need the medication and that your body is doing it for you.
As someone’s who’s struggling to even take t3 and feels crap, I can’t understand why you want to do this. People come up with self heal stories etc. I want all natural no drugs but that can’t be the case. Like someone said your results were bad without medication so why put yourself back in that place again.
Hope you make the right choice and feel happy in that choice. Take care
That doesn’t mean I haven’t been very sick for many years getting myself to a good place.
I’m open minded to various options to help myself some which have worked. I wrote this post not to be controversial but to find personal experiences of others not necessarily opinions. But I appreciate your comments thank you
I suppose if you found out the cause of the hashi's and corrected it then there's a chance of recovery. Gluten can be a cause due to molecular mimicry. You would need to be gluten free and see if the antibodies went down. Then maybe try other things like dairy, etc
Thank you sharing your experience it is a real help. I know it’s a risk weaning off and I think you’d soon know about it if there was an issue. Just sometimes you wonder if you could ever come off medication as no pill is ever going to replace an organ in the body
It will not take you very long to discover the effects of T3 weaning. T3 has a half life of about 8 hours so every time you wake up in the morning you are pretty much off your meds. So, if you must do this, just don't take your pill tomorrow morning and let us know how you feel by the evening of the second day.
My advice? Don't do it. As other's have said, don't argue with success.
Yes, I have read that, I have also read 8 hours. My personal daily experience tends to support the 8 hours - but there could be other factors. I'll stick to 8 and do a bit of research. But I agree, 24 is in some of the literature.
OK, I have just done a very fast Google scan of the half life of T3. Companies and researches seem quite coy regarding stating of the half life of T3. However for those who were brave enough to take a stab at it I read (and you will find) figures which range from 8 hours to 2.3 days one group even mentioned 2 weeks. What that tells me is that they are not sure and the first draft of somebody's thesis should not be published to the Internet. The only statistic all seem to agree upon is that 95% of T3 is absorbed completely within the first 4 hours (btw absorption nothing to do with half life).
I usually write that the half life of T3 is either 8 hours or 22 hours depending upon who you believe. It is hard for me to quote 22 hours when my experience is 8 hours
I'm curious about this experience of yours. How can you know what's in your blood? The T3 in the blood doesn't do anything. It's only when it gets into the cells that it's really active. And, it stays in the cells for 3 days.
The only statistic all seem to agree upon is that 95% of T3 is absorbed completely within the first 4 hours (btw absorption nothing to do with half life).
That cannot be true for everyone. What about people with thyroid hormone resistance of one degree or another? Or are they only talking about euthyroid people?
And, I do know that absorption has nothing to do with half-life. except, of course, that half-life in the blood is just what is left in the blood, and the more that is left in the blood, the longer the half-life. So, there probably isn't any hard an fast rule, we can only generalise.
Nothing very curious: I feel great, normal and very energetic until about 4:00pm in the afternoon. Actually to be more accurate it's 8 hours after I take my pill which takes place between 5:00am and 8:00am depending upon when I wake up to go pee. If I need to do stuff late afternoon I consciously wait until 8:00am. So about 4:00pm on average I start to get a little bit tired and lose my "drive" to do things. by 7:00pm I am really dragging - but I don't have many evening activities so it doesn't bother me. By 10:00pm I can to to bed and sleep like a baby. The "feelings" are like clockwork, on the rare days when I can't take my pills until after my blood tests I feel ill until I take my pills (NDT Armour) then, boom, I'm back on track.
The 95% I threw in since it was the only consistent stat that was quoted, compared to the spread and paucity of half lives.
If I get time I will look into biological half lives, I am beginning to think you have to also quote the environment in which the "decay" is taking place. I am used to a stricter definition, things I have had experience with have half lives regardless of their environment or time at which you make the measurement.
HOWEVER... regarding weaning off T3 the half life be it 8 or 22 hours (or 24 for that matter) is irrelevant - just miss out a pill on day 2 and let us know how you get on, you should feel some effect by the end of day 2.
Now, if you will excuse me I have to get back to the impeachment hearings!
Half-life applies to what is in the blood. The T3 in the blood has no effect. It's what is in the cells that it is effective. And it stays in the cells for about three days. So, your feelings of growing fatigue cannot be due to the half-life of T3. Enjoy the hearings.
Wow, you sound like a doctor, ignore the observations from the patient, just push your own (possibly misguided) theories. I start everything from observations because that is reality.
I feel great most of the time that matters, I cannot party all night anymore and I cannot work in a lab until 2:00am like I have done all of my life, but that's OK, I don't have to any more.
I write my experiences here to help others get to my level of wellness. I tell people everything I have done and put up with uneducated docs. I admit that I cannot party all evening, I leave that to others like you, please tell us how you do it. People from all disciplines bring their experiences to this table and it's a great and unique idea. If my T3 (blood or cells) starts to run out at 4:00pm then so be it - I can run it out even sooner if I ride my bike. I know my body, the T3 I get in Armour NDT has a half life of ~8 hours and I am not going to pretend otherwise to fit in with other people's (probably sloppy) experiments.
If your t4 reading is 1.8 then I think that the only way for it to raise is to take levo. Your thyroid is practically dead. My last t4 reading was 2 which I was told was undetectable. I would never dream of stopping my t3 as I know my thyroid is never going to work on its own. Jo xx
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