Underactive Thyroide

I decided to stop my thyroxine over 10 weeks ago now as my last Dr increased it too 150 mg. I was on 125 for 26 years and it worked for me . So recently i had another blood test and it showed over active so my new Dr decreased it to 75mg . I got so fed up being dominated by tablets and Dr interfering with my dosage i took matters in to my own hands and stopped them full stop. So what i want to know as anyone had side effects from stopping there Thyroxine??

39 Replies

  • You will gradually develop side effects. My worry is that you'll gradually decline then may quite suddenly start to feel really poorly. Then there will be no quick fix as you'll have to resume medication and increase gradually as you may be sensitive to it at first. I think you've been a bit rash in stopping your tablets and I think you'll regret it, sorry. Have you been given different brands of thyroxine? The different brands sometimes have quite different effects and this may be why you had to change your dose after all those years, or perhaps your weight has changed? Or are you approaching menopause perhaps? Your dose shouldn't have been changed because of the test only, the Dr should have taken into account how you were feeling.

  • What signs of over active did you have? Losing weight despite eating a lot, shakey hands when held out in front of you, unable to tolerate warm temperatures, sweating, unable to sleep?

    If you had all if the above, plus a few more signs as well as a suppressed tsh, then the doc was right to reduce your dose. But I suspect you had no symptoms and your doc was being a prize prat. What I did when the doc told me I was hyper and he was going to reduce my dose, was to reel off the symptoms of hyperthyroidism and assure him I had none of the but if I got them I would be sure to let him know. Result, dose left well alone.

    Assuming the doc was just going by the tsh, there are several articles, and dr toft states that a low tsh is fine so long as free t3 is not over range. (A toft, understanding thyroid. From amazon.)

    If your thyroid gland is not making any thyroid hormones and you have no replacement, then you slow right down, and eventually you fall into a coma and die. This is the reason the meds are free because if you need them you will die without them. Takes a while though. :-(.


  • The 'side effect' if you want to put it like that is death.

    You really need to convince the GP that at 125 mcg you felt good for 26 years and this is the dose you need.

    Apparently we can refuse dose changes if we feel good on what we are on.

  • Exactly what I would've written. There's a reason why thyroxine is prescribed free on the NHS. If your thyroid isn't producing enough thyroid hormone everything will start to fail.

  • Could you please point me to where it actually says you can refuse to change dose if your doctor wants to lower it and he has to keep you on the same dose, even if he thinks you do not need it. I have found where it states a doctor does not have to prescribe what you have asked for although you have the right to refuse to take anything he does prescribe. If your doctor prescribes a lower dose I would have thought asking him to go back to original dose is the same as 'asking him to prescribe something he feels is not warranted in his medical judgement'. Therefore I read it that you can refuse to take anything a doctor prescribes but cannot ask him for the same if he wishes to lower it, or more of the same drug if he does not think it necessary.

  • Agreed. There is no way on the planet that a patient can force a doctor to prescribe (or continue to prescribe) anything that the doctor is unhappy to prescribe. You can disagree, argue, go to another doctor, and that is about it.

    Let us take a situation in which some research shows that what someone is currently prescribed is actually dangerous. We have had that sort of thing happen quite often over the years. Surely no-one could expect a doctor to continue to prescribe?

  • Ok side effects. Puffy eyes, sensertive to cold and weight gain..Also slightly memeory loss.

  • So the statement "Apparently we can refuse dose changes if we feel good on what we are on." is a bit misleading. We can refuse to take more if the doctor wants to increase and we are fine on what we are taking but CANNOT demand he prescribes the same dose if he wants to lower it.

  • So 26 years on the

    Same dosage as worked well no problems what so ever. Then another Dr increases it and things change and not for the better. Then my new Dr changes them again.....it again not for the better...So your telling me we are not to ask why or challenge the Dr?? Even tho i am the one with the Thyroid problem...

  • The person who posted the question had been taking 125 mcg T4 for 26 years. Then a doctor wanted to change the dose after this dose had been the same for so long and she was feeling well on this dose. At least this is what she wrote. I'd assume there was some sort of discussion in the doctor's office.

    She could have said 'look doc, I've been very well on what I"m' taking and don't want to change.'

    The doctor increased the dose and now she is on a roller coaster.

    I'm taking two medications now for many years and the doctor has wanted to take me off them but I won't. Then she replies 'you are the one who wants this'. And I say 'that is correct'. And she writes the prescription. She was the one who started these back more than 15 years ago. They work well for me and I do not want to stop them because I know I'll be running into trouble. Bad enough that the thyroid business was off the rails for so many years because she reduced that dose.

  • I had sat down with the Dr to discuss this ! But he pointed out he is the Dr I'm not. I even tried to see it from his point of view..But still he put it up. So i took it and i was too hyper on it .

  • Hun, just cos he prescribes it, and you fill the scrip, doesn't mean you have to take as much as he wants you to. If the problem is the other way - he's reduced the amount he prescribes because he wants you to take less - then that is more difficult to solve and might even require you to look at self-medicating. But if you have a surfeit of Levo - just take what you feel is right for you. You should be justified next time you have a blood test. And even if you're not - plenty of people have a suppressed TSH and feel well. As long as doc can write on your notes 'patient insisted' he's covered, and should stop being a pain in the a*se.

    But do take it. If you're hypothyroid you will soon start to feel poorly. Your thyroid is essential to so much of the operation of your body.

  • Hii tested in that fact where can l fibdmkrei go please? By way I think that drop was way too much at once! Been there!

  • Beani2, I'm surprised you aren't experiencing side effects after ten weeks off Levothyroxine. Perhaps you could ask for a thyroid blood test to check levels. Long term untreated hypothyroidism can cause significant health issues and complications. Worst case scenarios are myxoedema madness and coma leading to death.

    I've had to stop thyroxine for 4 weeks on 2 occasions. TSH rose steeply and FT4 and FT3 dropped as expected. I experienced breathlessness, palpitations, numbing fatigue, was cold to the core, had considerable musculoskeletal pain and gained 3kg. It took a month to get thyroid levels back near where they should be and for most symptoms to improve but it took another 5 months for hairloss to stop, nails to stop peeling and breaking and skin to stop shedding like a snake.

  • If you have been on thyroxine for 26 yrs theres virtually no possibility of your thyroid going overactive

    no doctor should change a dose from 150mcg down to 75mcg without very good reason

    did you take your thyroxine in the 24 hours before a test

    as already said you will soon feel effects of not taking thyroxine at all , your iron and vitamin levels will crash and it will it take many months to climb back up again

    get a copy of all your results and post them .....something is not right

  • Im only going by what my Dr told me.

  • Lord knows how many doctors of people on these forums are wrong wrong wrong

  • Like you, I was sick of doctors saying there was nothing wrong with my dosage, so decided to stop taking tablets about 5 weeks ago. I had been on eltroxin with no side effects, then on to levothyroxine which did me no good at all. So far my only side effect has been extreme tiredness, so at present I am on multivitamins and iron along with selenium and vitamin tablets. Also eat 2 or 3 Brazil nuts a day. No aches and pains or bowel problems. Supposed to see a specialist whenever, so will see what he has to say.

  • I really Don't understand how you think stopping your hormone replacement altogether, because your doctor has lowered your dose, is going to make him change his mind. You might just as well say 'ya boo sucks'! It would have about as much effect. And the only person you're hurting is yourself. Do you really think he gives a damn???

    Did you try talking to him like a human being, and explaining how you felt? Did you ask for your FT4 and FT3 to be tested? Or get them tested privately? Did you do anything to take charge of your own health except this empty - and dangerous - gesture?

    OK, ten weeks is a long time, but you Don't have symptoms. Yet. But you will. As the others have explained. Maybe not today. Maybe not next week. But eventually you will. I once, for reasons I won't go into (but certainly not a fit of peek) stopped my T3 for six months. And I was fine for several months. But then, I noticed I was putting on weight. I got tested and my TSH had gone from zero to 35. Not catastrophic, but it would have got higher. All my vits and mins were low, and I had to build them up again with suppléments. And here it is, 2 years later, and I still haven't got back to where I was before I stopped. Not something I would do again, I assure you!

    So, it's up to you. You can continue to stamp your foot and sulk. Or you can be responsible and go back to your doctor. Discuss it like two adults and get tested before resuming your life-saving treatment. As the head cardiologist of my local hospital said to me : sometimes we have to act like big girls, and do what we have to do. :)

    Hugs, Grey

  • Goosey, it IS possible that this person has been medicated for 26 years for a problem that otherwise may have been temporary. I find it a bit odd, but then again, we don't know much about why the T4 was started in the first place.

    Theoretically the negative feedback loup should function properly once it is no longer suppressed by oral T4 therapy. After all, if this sort of thing didn't happen, then women taking birth control pills would become sterile after stopping them. Or people taking HC to support their adrenals would need to take them forever as well.

    Only time will tell if the course of inaction will result in Beani2 ending up being a wet dishrag. If her current GP wanted her to go down to 75 mcg and then down to Zero mcg, then it's for the two of them to figure out what's best.

    I entirely realize that because we've been through hypo hell, we are always alarmed when someone goes this route because we don't want them to suffer. Thyroxine is not aspirin and hypothyroidism isn't a headache. And we know that if the situation goes entirely pearshaped, it can take a long time to correct.

    But hoping here that Beani2 keeps in touch with us and isn't put off by what can be interpreted as 'hyper' concern. :) I'd hate to find out that she felt alienated by what she may interpret as our being over-zealous mother hens. Heck, we don't even know how old she is.....

  • But, Gabby dear, she didn't say the doctor reduced it to zero. She said "I decided to stop my thyroxine over 10 weeks ago" It was her decision, she said, because she was fed up with her doctor messing her dose around. And while I can understand that is very annoying, it does seem rather a drastic solution - well, no solution at all, really. If she was on 125 mcg for 25 years and feeling well, no hyper symptoms, then she obviously needed it! Or would you perfer to continue disputing this point?

    But I agree, we Don't really have enough information. That is why I suggested she post her previous results.

  • Goosey, I am not disputing anything at all. Just if Beani2 runs into some big trouble I want her (I'm assuming her because most of us seem to be shes) feel that we are not being judgemental, just concerned for her well-being.

    You know I love you Goosey. Don't get upset. Your heart's always in the right place.

  • Goosey, it's also confusing when Beani2 writes: "Im only going by what my Dr told me."

  • There are several strange things here. One, her doctor reduced her from 150 to 75 in one go??? The man's a homicidal maniac!

    Sorry to discuss you as if you Don't exist, beani2 but you're really not giving us much help here. If you want people to advise you, you must give them the détails. Like : what did the doctor tell you? You haven't shared that with us. And what were your results a) when your dose was put up and b) when it was reduced? It's important to know these things.

    Gabby, you said : it IS possible that this person has been medicated for 26 years for a problem that otherwise may have been temporary. I would say it wasn't possible, given that she felt well on that dose. You're nit-picking, Gabby! And gooses Don't like their nits picked!!! :)

  • Not picking your nits Goose. But as you so rightly remark, there is important information missing and until we know the details, if we get to know them, it's pfffft from me.

    When I got onto this forum, I laboriously to the degree of miniscule detail explained everything on my history. It's worked out for me (I believe). I think that without the relevent details, how can we know? We don't even have blood test results to go by in this instance.

  • Absolutely. We agree on that point, at least. lol

  • I tried to PM you but as usual, the stupid thing doesn't work. Can't send messages.

  • I am actually women not a

    Man.....And as more information that very hard at the minute as my memory side of it is not working propaly its decreased in the last two weeks. The only way to describe i ca n describe it as my bran as had the wires pulled out...

  • Well, Beanie, there you have your answer : that is the symptom - the first symptom - of no thyroid hormone. And you can't have any left at all by now, if you had your thyroid removed. You really should start taking some very, very soon. But start with a small dose - 50, perhaps, and work up. OK? You must do that now. Before it's too late.

  • To be honest , first you question if i am real, Then a man or women, I feel like im being laughed at to be honest .Glad you can laugh as i can't laugh, cry, or even think.I still don't know how im still holding on to my job as i feel totally disconnected from life it self . So il leave you all to it.

  • well, to be strictly honest, I didn't question if you were real, or if you were a man or a woman, and I certainly wasn't laughing at you! I was horrified that you would do such a thing and put your life at risk!

    But it does go to show the importance of putting information in your profile, and as much detail as possible in your post. We do get trolls sometimes, and it's not nice. We need to know who you are before answering in depth. I'm sorry if we upset you, I'm sure that wasn't anyone's intention.

    So, have you restarted taking your hormone yet? surely you must realise that you're not yourself - that comes across in what you write, which is why we weren't certain if you were for real. That last post is the first one that sounds as if there's a living person behind it. Forgive me for saying that. You are obviously ill - to us, anyway - I Don't think you realise it. But you have to restart your hormone now, if you haven't already.

    Hugs and apologies, Grey

  • Im 44 but was diagnosed at 17 years old and had the Thyroid operation when i was 26.

  • Does that mean a full thyroidectomy, partial or?

    If you have zero thyroid then you are not producing your own. If you have half a thyroid you may be producing. This is why you should get the bloods done since it's been 10 weeks since you stopped taking the meds.

  • I'm happy you are on whats right for you.

  • Beani2, Hi Ya,

    Please, I beg you, don't stop taking your meds. I did it and you will regret it. It slowly takes you down. Im with them, too, I can't believe your doctor lowered your dose like that. I understand your frustration with the tablets every day, I totally understand. You were probably like me, you never took any meds and then bam, here we are. But I'm here to tell you it's no good to be off of your med. I did it and my symptoms came back with avengance. You are probably feeling good right now as it takes time for the body to adjust but when it does, Look Out!!! And it won't get better. I was in denial that I thought I was better and I wasn't. I am not back on meds, on Nature Thyroid, and I been on it for three months and I am still struggling. I beg you, don't stop taking your medicine. There is nothing good that will result from that. I'm walking with you as I know what you're feeling, I know where you're at, and believe me it's a trick and don't fall for it. I thought I was better and part of me in denial and I was so wrong. It is frustrating finding that right balance on what to take, also, but we can't give up. Don't give in Beani2.


  • Thank you every one..... :(

  • Beani, no one's laughing at you and everyone is concerned. Your doctor reduced dose too much when s/he reduced dose from 125mcg to 75mcg as 25mcg dose adjustments are usual.

    I'm not clear from your post whether you had a partial or total thyroidectomy. Partial means you have some thyroid remaining which in theory should produce some thyroid hormone. The fact that you were on 125mcg for over 20 years suggests yours did not. Total thyroidectomy means you are dependent on thyroid hormone replacement. You will die without it within 3-6 months.

    Your metabolism will become so slow that you will develop organ failure, ie heart, kidneys, lungs which may be irreversible and you will not be able to withstand illness and will succumb to infection, most probably pneumonia, and die.

    The Brain fog you describe above is a typical hypothyroid symptom as the brain needs a lot of thyroid hormone to function well and enable the rest of the body to function.

    Please see your doctor and resume Levothyroxine as a matter of urgency.

  • Bean (from another Bean) - no-one is disbelieving you or laughing at you. I think you will find that all of us here are very afraid for your health because you have stopped taking medication that you need to keep you alive.

    Many of us are here because we are still struggling with our thyroid health, and many posters are very knowledgeable about thyroid issues. They have helped me enormously.

    Please please start taking some medication again.

  • I have had Hashimotos for 13 years & could never understand why I felt soooooo physically lousy. I stopped taking T4 & felt much better. I take adrenal supplements which help me immensely. Of course I do need some thyroid support so I am gradually trying to introduce T3 with the support of the very knowledgeable & supportive Doc P. Have you thought of the natural route? Hope this helps.

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