severe reactions to levothyroxine

can anyone help. i went to the doctor this week a nervous wreck crying and pleading with her they i felt levothyroxine was killing me and that my body was slowly dying . at first i thought i was having reactions to my blood pressure tablets and changed them with no success and now i realise its the levothyroxine. i have an appointment tomorrow to get my bloods checked and have asked to have my t3s done but the lab may not do them the doctor says. the problems i am having are mixeodema all over my body even my scalp when my glasses have been on my head i have deep indents which hurt,severe headaches,insomnia,irritability,nervousness,suicidal thoughts,i have gained over a stone in a month,flu like symptoms and breathlesness and difficulty swallowing at times and periodic itching. i do suffer from aniphylaxis and carry epi pens as i am highly allergic to asprin and salycilates. i truly feel my body is being poisoned please help

37 Replies

  • I'm touchy to many meds and can't do much Levo.

    Still trialling, though @12mcg. Doc doesn't know yet that i've reduced! You may well be on a lot more.

    For some, I can well see it being toxic, as one or two have posted here.

    If others can tolerate it ,then fine- but the get out clause of 'allergy' used by Docs is too glib -when used to suppress medical judgements.

    I've been made to feel at fault for asking for tests and not being happy with a 'toxic limit' on meds being OK.

    I would certainly press your case strongly and find another course of treatment.

    I'm sure you'll get this if you're firm -and I realise times are difficult for you with energy levels and physical distress..

    [Why not get a print out of your recent results and check stuff like Eosonophils and other immune type flags?]

  • thank you for your reply tegz x

  • I agree. It sounds like overdose. I wanted to ask you did your levels stay the same after you cut your dose? I know you are taking t3 as well.

  • i have just had my dose cut and the dr did this before testing which is tomorrow and i am not being prescribed t3 thanks for replyingx

  • There could be a number of reasons you are suffering this much

    You could be allergic to the Levo you are being given or

    You may be needing to increase your dose at a faster rate

    The symptoms of Hypothyroidism get far worse for many people, when they hit a certain spot (for me its when my TSH is between 7 and 10), this can make you feel like your are dying, but an increase usually takes you out of the bad spot. I think I would ask to be given a different brand of thyroxine, and see if there is any improvement, or ask if the dose can be increased. Its upto the GP on what way she's going to approach this, but dont let her do nothing.

  • I don't understand why you would feel worse if your tsh is coming down. I take it yours was much higher than that when you started treatment. Is there any reason for it?

  • yes, once your T3/4 levels drop beyond a certain point your body just starts shutting down, therefore your symptoms are actually less severe as your body just stops attempting to run at its full capacity. When you start taking levo there comes a point where your body is trying to run at full capacity again but you are not taking a high enough dose for it to do so. You actually feel far worse at this point because its fighting against itself so to speak. Once you get past this point it gets easier, but its at this point that most people think levo isnt working.

    It does tent to apply mainly to people who have had a much higher TSH than most hypothyroid sufferers rather than the ones who have been borderline. Mine was 56 when I was first diagnosed, but its gone way past 100 on occassions.

    I do take armour, but I need the T3 for other reasons.

    On another note, I appear to have missed the part in the original post where there is any mention of having Levo reduced, with the full facts, I would have added being over medicated as another possible cause on my original post, although I dont understand why a GP would cut the dose before taking bloods

  • Got it. Mine was up to 94 and after two weeks only of 25mcg, t4 was normal and I was down to 32. At five weeks the t3 t4 kept increasing to the good but the tsh is still lagging at 32. I feel good. I think if I take any more levo it will be too much. As long as t3 t4 are healthy I am ok with tsh at 32. Does your thyroid function at all? I was told that the levo just helps or supplements the thyroid and that is why people need different doses depending how worn out your thyroid is. I really don't want to up my dose, but it sounds like as time goes on I probably will.

  • Has yours gone past 100 while on treatment? If so, do you know why?

  • yes and yes, but I have no intentions on discussing it further on someone elses post, and I'm starting to feel very uncomfortable with the way you are questioning both my replies and other peoples like you have some other agenda

  • I am so sorry did not mean to upset you. I am just trying to understand this. Did not mean to make you uncomfortable. I thought asking questions was allowed. I do not know what you mean by having some other agenda. I am upset now myself and will not ask you anything again.

  • Mary it IS normal, sorry that guy reacted to you that way.

  • I agree with susymac - it could well be that you are under-dosed, or be an allergy. How long have you been on thyroxine, what is your current dose and please post any recent thyroid function tests that you have? Sorry you are feeling so bad. xx

  • i was diagnosed in december and started on 50 mcg it was then increased to 100mcg after 6 weeks and then i was told it was normal. 2 months ago i started to get more severe symptoms and went to my gp last week who ordered blood tests for tomorrow and she reduced my thyroxine by 25 mcg I dont have my test results but will ask for copies when i go tomorrow. thanks for your replies. havent taken my levothyroxine this morning and im terrified but the joint pain has gone will take it this afternoon so that i can take it later tomorrow as my blood tests are at13.40 and dont want to take it before the tests

  • When I stopped levo, my joint pain almost immediately improved as did my ability to think. I tried dessicated thyroid, which was an improvement, but ultimately ended up on T3 only. Like Jane's daughter, I feel like T4 is poisoning me. It's almost like it is blocking my body from working at all. A bit like there's water in my petrol tank, if that makes sense :D

    It may be that you are one of the few people for whom T4 doesn't help at all. You may find you can tolerate a certain dose but then need to top up with T3, or you may find you need T3 only.

    The other thing is to make sure your iron, ferritin, folate, vitamin B12 and vitamin D levels are good, not just 'NHS normal'. All of these can affect your ability to use thyroxine.

    I hope you find the answer soon. It is horrible feeling so bad. I'm so glad I'm not in that place any more and hopefully you'll be in a better place soon too.

    Carolyn x

  • Hi

    I'm so sorry you are feeling so bad.

    If you are going for tests tomorrow you could also ask for for the full range of tests suggested on this page from the Thyroid UK main website:

    including B12, D, folates, ferritin, and intracellular magnesium. Sometimes deficiencies in these vits/mins can delay your recovery.

    Your doctor may not be aware that there are alternatives to straightforward thyroxine with which MANY people have trouble. My daughter said she felt toxic with any form of T4 administered to her. As well as liquid thyroxine there are various other mixes which are explained on this page:

    Let us know the results of your tests with reference ranges and then we can advise further. Good luck.

    Jane x

  • thank you jane x

  • Good luck tomorrow- Your old and new figures will be of interest due to my not liking Levo much.- so I am biased :) Also, to hear what may have been going on with your taking it.

  • I had what appeared to be an allergic reaction to levothyroxine - intense itching of scalp chest abdomen which woke me at night bot no sign of a rash, piled on 1.5 stone in 2 months, oedema all over body which leaves dents. I told gp I felt like it was poisoning me. Am now on t3 only trial no longer feel poisoned but still feel ill and neither weight nor swelling any better 3 months on. Gp agrees ' t4 doesn't seem to suit' me but says I'm the first like that he has come across

  • It may take a while to feel totally better and you may find you need a higher dose than the GP is prescribing. It is really important that he goes by how you feel and your free T3 level rather than your TSH. Once you are on T3, the TSH is pretty much unrepresentative of your thyroid hormone levels.

    I am now on T3 only, 75mcg a day, and I still am not losing the swelling or the weight. I do feel much better though. I think I need a further increase but I'm not due for that just yet. I am in the process of switching from 4.5 grains (270mcg) of NDT so I am having to wait for the remaining T4 to leave my system before increasing my dose again. This is much more than I needed before I was put on levothyroxine. I only needed 20-30mcg back then. I think the T4 has royally screwed up my system so that I need so much more T3 to even function. Hopefully my cells will eventually 'switch on' to the t3 so I can lower my dose.

    I hope you start to feel much better soon. T4 seems to be poison to some of us!

    Carolyn x

  • What do you mean by the tsh is pretty much unrepresentative in thyroid levels once t3 level is stable?

  • That's not quite what I said, so I will phrase it better. What I wrote wasn't as clear as it could be :D

    What I meant is that once you are taking T3, your TSH will likely be lower than it would normally be, given your t4 and t3 levels. I hope that made more sense. What I mean is, TSH is no longer a good indicator, in many cases, of your actual thyroid hormone levels. I should also clarify that TSH isn't a thyroid hormone. It's actually a pituitary hormone that signals to the thyroid to produce thyroid hormones. Taking t3 can lower the level of TSH more than if you had a healthy thyroid producing the same amount of T3, so it is important to look at t3 levels rather than TSH when you are taking t3.

    I hope that made more sense. I'm not doing a great job this evening :(

  • Yes it does. Thank you. So this senerio is only if you are taking t3 replacement then? This gets so Also, since my small dose of levo has brought my t3/4 to midrange high, and my tsh is still straggling at 32, I feel good. It is the t3/4 that really counts then? Getting this slow by surely.

  • It can also be true for people taking any thyroid medication, but more so for t3. It is not uncommon for someone to have a low-ish TSH on levothyroxine but to have a suppressed TSH when they are on the equivalent dose of t3.

    T3 and T4 are definitely the important figures. There are too many things that can affect TSH, many of which we probably don't even know about. It also seems that TSH is unreliable once you have hypothyroidism as the feedback mechanism between thyroid, hypothalamus and pituitary no longer works as it should.

    I'm glad you are feeling better. Perhaps the TSH will eventually catch up in time :)

  • Not wishing to muddy the waters overmuch, right now- but this is a similar situation to Gout serum Urate levels.

    If you suffer from Gout, a level of 350 is getting into the trouble zone but with NO previous attack you can have double or even treble this reading -without problems, though this would be unusual.

    [Under treatment mine is bottoming at 200 now.]

    The differemce is that the gout sufferer has autoimmune markers to boost the untoward immune response that causes much pain.

    You wouldn't connect having a pint of beer with literally being unable to walk a few days later -but it can trigger this.

    Thyroiditis is another autoimmune affliction, along with Vitiligo- frequently existing together.

    This implies a stronger connection to the development of Hashis on that score -but nothing can be ruled out due to lack of research into Thyroid diagnosis & management.

    Autoimmune issues may well modify internal thyroid regulating mechanisms and allergy responses to medications, both.

  • ....Hi tegz - do you think your gout is connected in any way to your UAT ? Would appreciate your knowledge on the subject as I know a few people with this condition and all male !

  • The only connection I know of is the autoimmune one.

    Gout is stopped in its tracks by one med- Colchicine and that is Cytotoxic stopping new white blood cells forming to attack own body.

    I have wondered if it would help in stropping Hashis- but can't be taken long term,easily so low dose only- as a prophalactic.It's quite a toxic drug but neen in use for ever. Gout is Baaad stuff, as you probably know, from your friends.

    Women don't generally get it till after the menopause- so there are hormonal elements involved.

    [Protection by estrogen, like with the heart]

    It's well know that autoimmune ailments run together- that is sure.

  • Thank you things are so much clearer now.

  • I'm a lucky boy -& have all 3 afflictions I correlate..

    [but not Hashis, thankfully]

  • Tsh =thyroid stimulating hormone its pushed out by pituarity to flog a failing thyroid on a feedback loop

    once you administer any form of thyroid meds but especially t3 or dessicated thyroid meds it often falls to virtually zero this is even more so if you have central hypothyroid because the pituarity cannot respond

  • thank you to everyone who replied to my question I did get a bit confused with other people asking questions not that i am complaining as i know we are all desperate to beat this dreaded disease or at least control it. my thoughts and prayers are with you all x

  • Your kind thoughts must have worked Helvon- as I saw a sensible & responsive new Dr today [which I wasn't relishing ,tbh] and got some forward movement. :)

  • im so glad for you tegz xxxxxxxxxxx

  • With regard to not being able to lose weight. I found that I was gluten intolerant through the York Intolerance test. Not only gluten but dairy too. Along with hazelnuts, brazil nuts. When I came off the gluten and dairy the dimpling and swelling went away. Levothyroxine always made me feel terrible - I was never offered anything else. I too was always nervy and anxious. Only through my own research was I able to find a much better solution through nutri thyroid medication.

  • Without doubt many thyroid patients cannot tolerate thyroxine in any form

    many of them will have the DIO2 gene which means they cannot cinvert the t4 in either thyroxine or in the natural dessicated thyroid meds and thus must only be treated by t3 alone in divided doses

    Professor Colin Dayan in Cardiff is researching the DIO2 gene but your gp should be able to arrange test for it

  • So sorry to hear what you are going through.But please take heart that you are not alone .I too went to my GP with exactly the same symptoms.Been feeling rough since went hyper ,that was 3 months ago and still feeling ill,just a matter of time and dose management and own research and talking to others on this website.Hope you feel well soon .Let us know what happens.

  • I've experienced everything you have mentioned. I refused to take it for 30 yrs despite an extremely high TSH. I also felt like I was dieing on it. I have now been forced to take it due to a recent pulmonary embolism .i am also now on a combination of ceritidine and strangely ranitidine to combat symptoms.drs. Refuse to believe it's an allergy to thyroid medication but I know differently.

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