Hello I’m wondering about the possibility of getting off Levo and giving my thyroid another crack at natural production. I’ve been reading so many papers about the Covid vaccine messing with your thyroid and whether I should have just waited. My TSH was between 4 and 5 for the Covid years so 3 tests over 2 years. I’m now on 125mcg of Synthroid. Is there any chance of slowly reducing down and going natural again? T4 has killed my libido due to the increase in SHBG causing low free testosterone.
Can you get off thyroid meds after being on for... - Thyroid UK
Can you get off thyroid meds after being on for nearly 3 years?
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ockerdoc
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Ever test positive for antibodies?
No I’ve always been negative.
TiggerMeAmbassador
Probably best to get a scan to look at the condition of your thyroid and if it looks like it might be a viable option rather than putting yourself through stopping and starting
Ive pondered this question deeply as it’s the reason I have not put my 18 yo daughter on Levo. Despite a ton of the usual symptoms, low free ts, no antibodies and normal thyroid scan.
I’ve been watching her bloods for a couple years, optimizing vitamins in the meantime.
My takeaway is that - in layman’s terms - Levo does put your pituitary’s tsh production to sleep. And that theoretically it can wake up again after stopping Levo. I didn’t find anything conclusive on how often it would stay asleep for good, or if it does wake up, how long that takes.
Of course doing so successfully would mean your pituitary and your thyroid was only temporary in its dysfunction. As you say - viruses and vaccines (and childbirth for women and I think other things) are indeed temporary. On the other hand, virus and vaccine can also trigger a genetic predisposition and so despite it being a cause, it may still be a one way street.
In some ways the only way to find out is to find out. As you prob know there are some people who are dead set on getting off Levo, but from their profile it’s clear they will just move toward severe hypo and possibly myadexa (sp?) coma at worst and at best years clawing their way back to the starting line. But I see your point.
Looking forward to other replies if others come along to share.
2 months ago:
TSH 0.157
T3 5.72 (3.11-6.8)
T4 14.7 (11.9-21.6)
I take 125mcg T4 and 6.25mcg T3
In your post a while back, you were asking if you should increase your levothyroxine dose. What has changed since then?
Considering you are taking a considerable amount of hormones and your T4 in this test was only 28.9% through the range, I do have doubts that your thyroid will be able to provide a meaningful output. You must have been feeling under-treated at the time, hence you were asking to increase your dose (which many here would have suggested, although some people might be okay with a lower T4 when taking T3).
I personally would not go down that route, yes you may have had subclinical hypothyroidism at the time of diagnosis; illness and viral infections can very much mess with our thyroid, but these illnesses can also leave considerable damage in their wake. In some cases the thyroid can recover (but this is usually within 2-3 months or perhaps up to a year), but in some cases the damage can be permanent. And not all cases of underactive thyroid test positive for antibodies, you can still be underactive without positive antibodies.
If you are really keen on trying, you could gradually lower your meds to see if the levels go down further or stabilise. However, you do not want to push this experiment too far (and I would keep a close eye on testing), as your body heavily relies on thyroid hormones for many processes (lipid, protein and glucose metabolism, cardiac output, metabolic rate, thermogenesis etc.) and low levels can cause all sorts of problems in the long run.
Thank you 🙏
• in reply toTina_Maria
Why is that considered ’a considerable amount of hormones’? That does not sound very high to me.
Tina_Maria• in reply to
It is quite an amount of hormones for where his T4 and T3 levels are....
I have seen a lot of women say that with clean eating, limited chemicals in the body etc as much as they can, they have managed to come off meds. Depending on what you believe, thyroid issues are caused by a sluggish liver, it's all about cleaning your liver so it can function properly and kill off the EBV which causes the antibodies if you have them.
I'm not sure about this statement.... if your lifestyle is causing your thyroid suppression then that's going to help and certainly optimising vits and mins.... but if your thyroid has shrivelled no amount of clean living is going to bring it back to life 😬
Yes, it all depends. I have no thyroid as had RAI, so no hope for me. Though some say you never completely get rid of all the tissue and it will still try to continue to work, but because we suppress the TSH with thyroid replacement, it stops it from trying to produce more! Lots of different info out there, who knows what is correct 🤔
NOT info, opinions. Not the same thing.
I think the technical workings of the thyroid are beyond you, to put it bluntly. There is more to hypothyroidism than just converting T4 to T3. It is vastly complicated and you're trying to distill it down to the liver not being able to kill off the EBV? I never even had the EBV. There are many, many causes of hypothyroidism but you're trying to blame the patients themselves for not having clean livers? You're not a doctor by any chance, are you? That is a very dangerous statement to make.
At no point did I say it's right, I said i have seen a lot of people say and there are a lot of opinions out there, who knows whats right. I said I don't know the technicals etc. Sorry, thought it was just a discussion!
Well, it's funny, because I've never heard anyone say that. But if you want to discuss something as controversial as that, you need to back it up with fact. It's true you didn't actually say you believed it but your post is rather ambiguous. It does read as if you think it's right - especially when you say: I have no thyroid as had RAI, so no hope for me.
We have to be very careful what we say, because the odds are that there is some poor desperate soul reading this who is going to believe it, and start trying to cleanse her liver with a view to stopping her levo. And who knows where that could lead!
• in reply toHookie01
I am sure you meant no harm. But, with controversial statements like that, it is best to check where they come from. From a naturopath offering liver detox treatment? Or someone selling supplements?
• in reply toHookie01
What do you mean when you say that thyroid issues are caused by a sluggish liver? That a lot of the T4 to T3 conversion takes place in the liver? While that may be true, they would not be on Levo to begin with if they did not have a thyroid problem…or are you seriously suggesting that autoimmune hypothyroidism is caused by a sluggish liver?! If so, please provide reliable sources.
On a more general note, there are quite a few integrative practitioners (mainly in the US) who claim thyroid disorders can be cured, often using their pricey supplements. So we need to be careful and not believe everything we read.
Hookie01• in reply to
Because livers now days are overloaded with chemicals from fake food, cosmetics, household products, pesticides etc etc, the list goes on and on, it cannot function as well as it should, so is not converting t4 and t3 as it should (sorry, not the most technical explanation but thats beyond me )and also it cannot hold reserves of vitamins and minerals which is why a lot are deficient. I wouldn't say supplements would be able to cure, but clean eating and living sounds feasible to me, but it's made very hard to do now days sadly. So many processed foods and drinks etc. It's a scary, crazy world we now live in! Quite a few health issues could be resolved with healthy living, but the world has changed so much.I'm not saying I am right, I was saying a lot of people have claimed this, just wish I had tried more before destroying my thyroid.
I recently went back to the NHS from being treated privately and the Endo wanted me to reduce my medication with a view of stopping, as she didn’t believe I ever needed to be medicated.
I came off the T3 and was at 75mg Levo and my symptoms became much much worse and she has now agreed that I need Levo.
I did blood work at 75mg and it showed room for increase.
Although she couldn’t help but mention that it was my fault for ensuring my body needed it by being on T3 and even starting medication in the first place🙄.
Maybe if you did try to reduce slowly it would become clear?
The question I would ask this endocrinologist, would they ask a type 1 diabetic to come off insulin with a view to stopping? Maybe by magic the pancreas could kick in (by having been mute for years) and suddenly produce some insulin...
Strangely, I do not see that scenario happening, yet thyroid patients are always looked at, as if they would not need their medication and they could pretty well try to get off it. Seems that one hormone is deemed necessary where as another essential hormone is not.
Some serious double standards if you asked me.
I always find it odd when postees compare insulin dependent diabetic and thyroid treatment …they are completely different diseases., and even specialisms within endocrinology. An obvious variation is that blood glucose shifts in minutes and can now be seen 24/7 on a continuous blood glucose monitor that stores all the stats.re.insulin jabbed and carbs consumed, recording the ‘hypos’/ ‘hypers’, whereas with hypothyroidism we have to collect blood results( frequently private ones) over months/ years, looking for patterns, even with vit/ min levels, as the ‘huge tanker’ of thyroid levels shift( or not)…
• in reply toJudithdalston
You can replace diabetes with almost any disease and ask yourself if doctors would tell patients with those diseases to go off their meds and see what happens. I once suggested to a doctor that I go off my blood pressure medication, and he said absolutely not, your blood pressure will rise and that will put a strain on your heart. He went on to say that hypertension is usually a chronic condition. I would say hypothyroidism is more chronic. And, why would hypothyroidism (after going off meds) not put a strain on your heart?
A person without a thyroid on T3 only would end up ill very quickly if T3 was stopped. Levo decreases more slowly, sure, but we risk becoming very ill and putting a lot of pressure on our adrenal glands if we allow ourselves to go hypo. Been there, done that. And I would not recommend it to anyone diagnosed with clinical hypothyroidism and thyroid antibodies.
Judithdalston• in reply to
My Gp recently threatened me with DEATH having a suppressed TSH ignoring that the previous 20+ years it was also suppressed, but has never commented on my diabetes, and possible associated ailments!
• in reply toJudithdalston
I know, I have been ’dying’ for the past 15 years according to doctors…still alive and kicking!
I think of it in much the same way as food. You could stop eating for a few weeks and you probably wouldn't die. But you would gradually become very unwell. The same goes for thyroid medication. Sure, you won't drop dead or go into a coma immediately you stop taking it, but every day that your body and brain are deprived of those vital replacement hormones puts a strain on everything as it struggles to keep going.
The point I am making is, that it appears that for other chronic diseases patients are not asked to get off their medication or reduce it to a point where they can no longer function. Of course diabetes and hypothyroidism are different diseases, but both hormones are essential for life - without insulin you will die, and the same goes for thyroxine, you will die if you have none. The way those hormones are measured is secondary to their physiological importance.
The point is both are very important hormones, but it feels that thyroxine does not seem to have the same medical importance for health care professionals as for example insulin.
• in reply toTina_Maria
I could not agree more!
Hypo comma = Myexedema or The 3 types of coma associated with diabetes are: diabetic ketoacidosis coma. hyperosmolar coma. hypoglycaemic coma. All have/could have bad out comes.
If you decide to quit levothyroxine, there are multiple research articles on relative success with selenium plus myo-inositol for hypothyroidism: pubmed.ncbi.nlm.nih.gov/282...
It is interesting isn't it, I was reading up about myo-inositol as a hormone balancer just the other day... do bare in mind this is for auto-immune hypo's which the OP isn't
Thanks I’ve been watching Dr Westin Child’s videos about coming off it doesn’t seem too bad. 25% reduction every 4 weeks will be what I’ll be trying.
In mid 2023 I tried to come off 75mcg levothyroxine by reducing 12.5mcg every two weeks, which was far slower reduction than my doctor suggested. I was tested regularly, when it was obvious my TSH was going skyward and I gave in and continued with levothyroxine, I was then really quite unwell for many months afterwards. Please be very careful, if your body does need it, it will punish you harshly if you remove it.
• in reply toockerdoc
I would not trust Westin Childs. He lost his licence as a doctor of osteopathy a few years ago and is now selling pricey supplements, many of them containing iodine. I know he claims hypothyroidism can be cured in many cases and I personally believe he is a dangerous charlatan.
Whoops, didn't mean that to sound as if supplements could be used in order to successfully quit levothyroxine. Just something to possibly try if you do quit.
I stopped taking synthroid after 12 years and I still have some thyroid function. I do not feel good, but I never felt good when on it either. My t4 and t3 are in range; my tsh was 13 when last checked.
How long have you been off? Apparently you can take thyroid glandulars aswell to help as your coming off.
A little over one year. My last thyroid test was taken after 3 months of no meds. Since then I've taken single-episode Synthroid occasionally--I'm running my own self experiment. I took 12.5 mcg in October. Result: anxiety. Took 200 mcg yesterday. Feel a little better. So far, overall I think I do better in the long run if I take it maybe once a month.
I have been clear of levo now for 6bweeks cut down over 3 months since sep. All is going well very well but I use a very holistic approach.lymth node draining, reflexology, exercise both weights and pilates. Plus I do Chinese based exercises for thyroid combined with others including Indian exercise and prenayama meditation which all contributes to getting well. I also have a very clean diet drink milk and water kefir plus kanjina pro biotics. Also vit d and K2, iron,zinc and other specific drinks I make. My temp and hear rate are slowly rising consistently week by week so all is improving. You can do it but it takes a 24 hour a day job, it requires a lot of dedication but I feel much much better than being on that trash T4 med, it's horrendous. It is a slow process though.
Thank you that’s very encouraging I’m determined to get off. I do weights yoga meditation etc aswell but probably going to lay off the intense cardio while coming off.
Reduce by 25mcg every month. Last month at 25mcg go to 12.5 then to 0mcg. I haven't noticed any issues at all just positive benefits. And you can tell the right direction by taking heart rate and temp 4 times a day as they should stablize and then slowly rise over the weeks.
Henryski , please be more cautious about what you write on here , if you're going to write advice such as you have just given to ockerdoc, you at least need to make it clear (for anyone else reading later) that stopping thyroid hormone could make some people become dangerously unwell.
As I say in my reply, it takes dedication and a holistic approach and I was sick as hell on levo so the only option for me was either try my best to get well or just become suicidally depressed. There was no choice for me but you have to take it slowly and be patient as you try other treatment methods and it does take a lot of work. If i didn't try something I'd be worse now. I've done a lot of research into this, practcal especially and I wouldn't try anything if I thought it was dangerous but some people can do it and I don't listen to most GP as they haven't got a clue. And likewise everything has a risk in life getting outta bed and walking down steps can be dangerous to. I tend to look at what I can do with what I have and listen to my body to.
yes , but you're still making it sound as though it's just a matter or how dedicated you are .
and the main problem is that you are still not making it clear that it could be dangerous for some people eg , those with long term autoimmune damage without enough healthy thyroid tissue remaining to produce adequate t4/t3 , or those with a TSH that was unresponsive for whatever reason and therefore unable to stimulate thyroid to produce enough T4/T3 .....etc etc
• in reply toHenryski
What research if I may ask? And what is practcal?
Henryski• in reply to
There are many many thyroid and hormone specialists eliciting valuable latest research on this topic. YTube is a valuable resource for this. Listen to the podcasts and make your own mind up about them. Practical things like lymth drainage which worked wonders for me, Hang legs at 90 degrees against a wall 20 mins, worked wonders for me memory and mood came back brain fog disappeared felt like I'd lost 5 stone in weight, motivation came back, most negative symptoms disappeared. Also Indian pranayama by Dr Devika bhatnagar., 3 easy ways to help thyroid work correctly by nygurl41. These work for me so I continue to do them every day.There are solutions out there it's just finding them and trying them.
• in reply toHenryski
I actually laughed when I read this. Maybe laughter will cause my atrophied thyroid gland to regrow🤣.
• in reply toHenryski
No, not everybody can do it using those treatments! It is very dangerous to make such claims. You can encourage people to go off their medication and end up very ill in the process!
If the thyroid gland has suffered irreparable damage, for instance as a result of repeated autoimmune attacks, no amount of lymph draining or reflexology sessions or beverages can change that!
I am getting sick and tired of people describing hypothyroidism as a treatable condition, implying that thyroid patients need to take matters into their own hands to cure it. It can be very dangerous to go off your medication.
Many people here are not well on Levo due to being under medicated or needing T3. If they read that they can stop Levo, as long as they do yoga, they may be tempted to try it. You have a responsibility as a member not to post incorrect or misleading information.
To say that it requires a lot of dedication to go off Levo..that is just too much!!!
Do you actually know what that trash T4 med is? It's the thyroid hormone T4. Not a drug, a bio-identical hormone, exactly like the T4 that your thyroid makes.
There are many possible reasons why you didn't get on with it, but none of them make it 'trash', because it isn't. And thousands of people get on very well with it.
But did you even try to find out why it didn't suit you? Did you try any alternatives, like NDT or T3 only? Because that's what you should be encouraging people to do, rather than the drastic steps you're taking - which are never going to end well, and could do a lot of harm to a lot of people should they be desperate enough to follow in your footsteps.
Totally irresponsible to post that here without any disclaimer. It sounds as if you're blaming hypo patients for being weak and not having the strength of mind to do what you did. Whereas, in reality, what you're doing sounds pretty stupid to me - if you'll forgive my French. 
How can it be bio identical when it's full of excipients 5 in all sometimes 6 that the body doesn't even recognise and hinder massively bio availability. I I've been through it for years sick to the death of it even doctors don't give a shit about your symptoms, do you expect me to live in misery like a zombie for the rest of my life, no thanks I'll btake the gamble and try something I haven't tried before. You seem to think it's impossible to get off these meds, well it's not.
you've been off it for 6 wks henry ,,,, you might be ok in 6 months ,or like several others on here who have tried the same thing, you might crash at some point and have to rethink your approach, but whatever happens ( and i wish you all the best ) is it really appropriate or safe to encourage others to do this when you have not been doing it for long enough to know if you will have problems yourself ?
Well all I can do is take it day by day do my best to try get well again BCOS the NHS isn't doing anything to help me. I'm not blaming anyone for there lack of will BCOS I was like that for years unable to function and do anything but I slowly made progress over the months and months, lifestyle changes, diet certain foods vitamins exercise and other things to and daily routine plus many other things which I integrate into my daily regime have made improvements slowly.
The excipients are in the pill, yes, of course they are, because you can't make a pill without them. But they do not impact the active ingredient, the T4.
And yes, some people do react badly to some excipients. S what they do is experiment until they find a pill with excipients that don't adversely affect them, not throw the baby out with the bathwater!
You're right, doctors don't care about symptoms - for the most part they don't even know what they are - and they don't even care how you feel. But that's no reason for self-sabotage.
And I certainly don't expect you to live like a zombie, but that's not the only alternative (but I might add that that is exactly what you will be doing when your thyroid hormone levels get too low to sustain life - which I'm pretty sure they will do because thyroids cannot recover or regenerate).
No, what I would expect from someone in your situation - in the self-same situation I was in about 15 years ago - is to seek out another solution. For me it was massive doses of T3 only. For you it might be NDT. But did you even try?
I think it's more than likely impossible to get off thyroid hormone replacement, yes. But we don't have your case history to know what's going on with you - which is another dangerous element of your post: lack of information. I did try myself. I lasted six months - which was amazing given that my thyroid resembles a dried up pea! But when I tell that story, I always add that I wouldn't recommend anyone else do what I did, because I don't want to be responsible for making anyone ill. You, on the other hand, seem to be actively encouraging it. And that is wrong.
I'm encouraging people to try many different methods, using a holistic approach together not just rely everything on one pill or one specific thing. You are right to some extent that I'm experimenting with different approaches and methods but if it's working for me I'm not going to change it and of all the methods I've used because they're natural I've had no side effects at all. I believe it can be done and but I was never on a high dose anyway and I also think the longer you've been on this med then the harder it will be if you ever want to come off it. There's a specialist on ytube with headline 37.1 % of patients don't need thyroid meds. He explains in specifics a slightly elevated tsh is present in most people and taking levo in this case will do nothing to make them feel better. It's between 2-4 and in most case will normalise itself or with the help of diet and certain vitamins can be normalised. I'll try post the link later as I've not saved it, but it makes interesting reading/listening.
yes but in UK / NHS, hardly anyone would get put on levo for a slightly raised TSH of 2-4
NHS are pretty stringent about that . They require TSH to be over range twice ( 3 months apart) , most GP's would interpret that in practice as TSH over 5 at the very least. Many GP's really won't consider it until TSH is close to 10 or over.
Most would also want to see trend of rising TSH ,,, so if eg. it was 5.5 at first test but 4.6 at repeat , then even if 4.6 was just over range, they would tend to 'watch and wait' for longer , rather than start levo at that point.
and if TPOab were negative, then even with 2 x TSH over 5 but not as high as 10 , you'd struggle to get put on levo at all by NHS.
in other countries ,there may well be more of a problem with people being put on levo inappropriately for a one off TSH of 4/5 ish without solid evidence of an ongoing/ worsening thyroid problem, so yes of course those people can manage to come off levo , cos they probably didn't need it in the first place. ..... but it's unusual to find an NHS patient that was put on levo without good evidence of ongoing / worsening hypothyroidism.
I asked for T3 and or ndt from GP to which they replied they can't prescribe it. They don't want to know and I can't afford the astronomical costs of private treatment, you need to be a lottery winner to afford them. And T4 is trash if it doesn't work for you. Asked for tirosint or an oral alternative, oh sorry we can't do that too expensive was the reply. Well bollocks to those GP anyways, they're not here to help anyway all they care about is their safety protocols as long as tsh is in range your fine. Yes it's left a nasty taste in my mouth.
Tirosint is T4.
If it really is the levothyroxine that is the problem, it won't help.
If it is the excipients, then trying different formulations might help.
That's why I asked to be prescribed tirosint it's the purest form of T4 there is, I think there's only one other excipient in it and many people using it reported great success with it but I was told it can't be prescribed but no doubt privately it can.
Tirosint contain glycerol, water and gelatin.
Tirosint SOL contains glycerol and water.
We've seen a number of members having issues with Tirosint. Possibly due to the gelatin. Possibly the different absorption (quantity and rate).
The prescribing issue is fairly easy to get round. The cost is the problem. At least, the cost if supplied through UK pharmacies. Or, for that matter, from the USA.
It even stated this in the levo paperwork. If a patient still has unresolved symptoms then another brand of thyroxine may be prescribed so they know there's serious issues for some patients with absorption and conversion from T4 to T3. I even asked for a fortnightly thyroxine injection, they wouldn't entertain that either. Also I previously bought many supplements from many places esp Amazon - none of them worked - I wondered why? I then purchased pure herbal clean supplements from British Supplements and hey presto they worked and really well and found out most supps are full of inactive ingredients that stop or hinder the bio active ingredients from working as they should, even causing harm or side effects. Yes they're expensive but they work quite well.
Your GP was right, he cannot initiate the prescription of T3, it needs to be an endo. And getting NDT prescrbed is next to impossible. So a lot of people buy their own on-line - which is a lot cheaper than going private.
The majority of doctors know next to nothing about thyroid, that is a given. Which is why we, the patients, have to learn as much as we can and either advocate for ourselves or self-treat. But, if you want to talk about nasty tastes, I have a few wtories that would curl your hair! Going right back to my early childhood. I hate doctors, and come the revolution...
I felt fantastic coming off levo! I thought that levo was a poison to my body and that it had made me feel worse. I reduced levo gradually over many months and got down to 25mcg per day. I hadn't felt so good in years!
THAT LASTED FOR 4 MONTHS.......then I quickly became very ill. TSH sky high; ft4 and ft3 under their ranges. My face was bloated and I could not function. I spent the next 2 years all but bed bound.
Determined to get my life back I trawled the internet and found this site. I learnt about ft3 and liothyronine. And that was where my problem had lain. I was a poor convertor and needed a little T3 added (7.5mcg daily)to my original daily levo dose to bring my ft3 levels up .
Well you might like me to be but I'm not and I can't post to often as I'm too busy doing other things.
Yes, you can, but your TSH will go up.
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