After been on 200 levo for about 10 years and never really feeling well, about 5 years ago felt really unwell every day bad pains in neck

Going down right arm funny head, eyesight blurry getting worse, had to push myself every day to function so tired, out of interest couple of years ago stopped levo, all symptoms went and felt great, for couple of months, then boom started to feel realt unwel swollen face and eyes, explained to doc an started levo again, eyes and face went down all other symptoms were just the same , went to endo, just to be told its all in my head, I'm still having constant battle with doc, doesn't believe me an sending me back to endo, need help, my tsh 193, t4 1.7 no other tests done x

23 Replies

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  • What a terrible story! Did your GP agree to just stop or did you do it on your own?

    Either way, you needed to keep your replacement up.

    I hope you get to see endo soon and maybe he will consider adding T3.

    With some more info before then ,from this site, you will be in a good position to demand better treatment. It's late now so tomorrow you will get more response, I'm sure.

  • Knew you'd be first responder on this, tegz. T3 could well be the answer, princessze, but as I'm TT I can't say for sure... except.. now you're with people whose collective knowledge and experience will help you through this. Insist on an Endo appointment.

  • Yes, thank you all x new to this out of interest can you see all my replies, as covering several answers to several people in replies but not sure where there going, don't want people to think I'm not replying lol x

  • Hi You are realy having a terrible time. If ti is less than a year since you saw the Endo, or even if longer, phone Endo`s sec and say desperate and ask, as you were originally referred sometimes OK, or even better send an e mail letter to Endo, via the secretary.I would certainly pay on line for a TSH, T4 and importantly a FT3 testI, assume gP will not. Choose a well known co eg I use Blue Horizon, venous blood or finger prick , results to you with range of course.Quote TUK 10 for a £10 discount.Main site bestI think you probably need T4 ( levo) and T3, this is usually Endo`s first choice but is becoming a problem. Some people buy it then and ask t be monitored, expensive!T3 lowers the TSH and helps all the other symptoms, normally only a tiny amount needed, certainly starting dose is usually 20 mcg split 12 hour apart.The Endo should do all the relevant tests, ask and have a print out with results + ranges etc.You know you are not right, treatment should ake you like "normal", fight if needs be,

    Best wishes,

    Jackie

  • Thanks for reply, no doc Neva said to stop levo , by accident really, went to stay with daughter to help her after major accident, so much going on I simply forgot, then I noticed all pains were gone, less bloated all over body, more energy, my eyes were the best so clear and bright, felt great

  • Difficult to understand why your doctor thinks a TSH of 193 and T4 of 1.7 is even vaguely normal. Are you back on 200mcg of T4? It seems curious to me as to why your T4 is so low on that amount but clearly your body is asking for more with such a high TSH.

  • Hi jan, started on 25, up to 125, told doc no better and the more I take the worse I feel, he just told me to go back to 100 and that was that, I just gave up done what he said, went back sick of not felling normal, said he doesn't know what to say, so I asked for another endo app. X

  • Going to endo on 16th sept, a new one fingers crossed, not took levo for a week to test, again feel great what must b normalish, what other tests should I b having, back on levo tomorrow x

  • Lol wrote more but don't know where it's gone, wrote in two boxes as couldn't fit in all of it xx

  • I suppose there is a chance that you are allergic to T4 but I would have thought this was fairly uncommon and the symptoms might be different. I had been on T4 only for about 6/7 years when it suddenly stopped working, high TSH (up to 44) but an increase in T4 made me feel awful all the time. Now on a T4./T3 combo through endo but he did check for coeliac, Vitamin D3, B12, ferritin, transferrin and iron status. I was low on D3, so now supplementing with that but I think I have issues with B12 (have a lot of the symptoms) although my serum B12 was in the normal range. Due to go back in 2 weeks so hopefully this can be investigated further as the serum B12 is not always reliable.

  • As far as I am aware not been tested for anything else, will make a note and ask, all I get told is your under active you need to take thyroxine and there's no other treatment end of story, so you can't possibly feel the way you do, you all seem so knowledgable thank you for your replies, and best wishes, fingers crossed x

  • As far as developing an intolerance to T4, it may be unusual, but it is possible. I was more or less OK on Levo for 12 years and then I had a really bad reaction to it, which looking back had been slowly creeping up on me for about six months - and the only thing I could think of was to stop taking it. Like you I felt so much better for a couple of months, it was wonderful - but then went downhill badly.

    My GP also refused anything but levo, end of, :-( and I tried 4 times to go back on it but couldn't. By this time my TSH was 150, and the GP said it could have been higher because that was as high as they tested. At least around here.

    In desperation I saw a private endo who tried me on T3, but my vits and ferritin were so low I couldn't tolerate it. She said that low ferritin in particular could be an issue. We tried two different NDTs but I felt worse on each one, and I wondered if I had developed an intolerance to T4 in any shape or form.

    I got my ferritin up a bit and vits as well and since December I have been taking a tiny amount of T3, and no T4. You CAN in theory get T3 on the NHS - it is licensed to be prescribed in the UK, unlike NDT. My first prescription from the endo was private and it cost a fortune. She then asked or rather told him to prescribe it on the NHS and as I probably looked like hell on earth (certainly felt like it), he hopped right to it! Now he doesn't make a murmur, although he had refused point blank when I first suggested it. The endo was great and very helpful. I dare to hope my GP has learned a little, but I'm not holding my breath.

    Even on such a tiny amount of T3 my TSH went down firstly to 95 (GP still went mad), and a month or so ago it was in the 40s. Still far too high of course but at least going in the right direction, albeit pretty slowly, and much better than 150. My T3 has gone up a bit but not hugely. I was just trying to find something that didn't make me feel worse, like any form of T4 seemed to, and never experienced the light bulb moment that some people report with T3 - probably because I was taking so little

    I can't tolerate a higher dose yet, so am hoping that the TSH will keep going down, even if slowly, and I will eventually feel better than I do at present. I was surprised that so little T3 had any effect on the TSH at all, to be honest.

    Even with not taking any T4 at all for 18 months, My T4 although a bit lower than the range, (only to be expected), isn't anything like as low as yours and although we're all different, your results as Jan 4963 says, don't look even vaguely normal. I hope you manage to get the help you need - perhaps T3, either in a T3/T4 combo or on it's own, might be part of the jigsaw puzzle for you.

    Don't let them tell you that T3 isn't available on the NHS - it is! Good luck.

    Kanga xx

  • All rings a bell, well will be seeing my endo soon, thanks to you all on here I will have a lot more knowledge when I see him/her, as I said I stopped taking levo a week ago to see how I felt, same result I feel great no symptoms, no bloated body no pains no cloudy head no blurred achy eyes no tiredness,no putting things off till I can muster up the energy and never getting anything done, I can only describe it as feeling cleansed from my head to my toes, I feel lighter, brighter, clearer, energised, and that's how everything looks through these new eyes(. Well feel like new eyes ). I know it won't last, but not started back on levo just yet, want this feeling a little longer x

  • princessze - it's so disappointing isn't it? Like you I felt great for a while when I stopped the levo. If only it could last. My GP scared me with dire warnings along the lines of 'you'll feel so tired you won't be able to get out of bed', so I tried to get back on it but felt so bad that I couldn't.

    But of course the feeling good doesn't last as the levo clears from your system over a period of weeks and for me, it wasn't just tiredness, but acute nausea and a whole raft of other things which I won't bore you with as you prbably know what I'm saying anyway. So taking nothing wasn't an option - if only - but the question was what?

    It's so weird - when you stop the levo you feel so much better, so it can't be a coincidence, yet when it's out of your system you begin to feel terrible. What a puzzle and uphill struggle it all is. Don't blame you for putting it off, I would be the same. x

  • Kangagirl, I know I'm completely baffled, why am I taking something that makes me feel so bad, why doesn't anyone believe me, why don't the doctors know how to treat this,if only, to think of all those years that's past me by feeling horrendous an i didn't know any different, well lets hope with everyone's help things might change, helps to here others experiences an I'm not alone and going quietly mad lol x

  • Hello Kanga, I was thinking of an allergy towards the T4 (perhaps fillers) rather than an intolerance. Like you I experienced the same thing with T4 after quite a few years on it and now the T3 is making a difference but it hasn't dealt with all the symptoms and I also find that increasing the T3 is impossible. My iron and ferritin are fine but my B12, folate and Vit D were all on the low side.

    What I wondered was whether these were stopping the T4, and now the T3, working as they should and I will only feel the benefit when my deficiences are addressed.

    Its a minefield and yes, I also get T3 on the NHS but through an endo, doubt if my doctor would have prescribed it otherwise.

  • Hi Jan - I never know whether to call it an allergy or an intolerance! I did have a horrible red bumpy itchy rash on the bottoms of my legs for about 3 years before the big bad reaction happened, but nobody connected it with the levo. The only thing that helped was the strongest prescription cortisone cream, which made the skin very thin and I didn't use it unless the itching was unbearable.

    Looking back, this co-incided with them raising my levo to 125mcg. Apart from a few slight reoccurrences, since stopping the levo - crossed fingers - it has gone. I'm probably asking for trouble saying this, but since being on the T3 it hasn't come back, though the skin on my legs is pretty dry. So I suppose that could be seen as an allergic reaction of some kind - never mind what was going on on the inside!

    I did think about the fillers, but I didn't do well on NDT either, so I'm tending to think it may be a problem with T4 in any shape or form. And every tablet seems to have fillers of some kind including others I take for non-thyroid related reasons. So trying to cut out fillers or find different ones is a minefield - you may be exchanging a bad one for a worse one! I think it's more a case of finding a medication which helps you and just hoping the additives aren't too bad.

    I asked the endo why this should happen after 12 years, and she said an intolerance (or allergy) could occur at any time just out of the blue. I have a lot of food and environmental intolerances too - something went seriously out of whack when I had the ubiquitous 'flu-like illness' back in 1972 which started my health on the downhill track. (Or rather I should say up and down - there have been ups! :-) ) HypoT wasn't diagnosed until 2000, and then only when they were testing for something else.

    My endo seemed to think low iron was a particular factor in not being able to tolerate T3, but I'm sure the other things make a difference too, and everything should ideally be at its optimum. Particulalry B12 I would say, which sadly is notoriously diffcult to get in the most effective form of jabs unless you have PA, and even then sufferers often don't get nearly enough.

    Like every other flipping thing, I seem to over react to oral supplements too so anything I take I try to do it through the skin, which is pretty slow going even if it works (transdermal iron is surprisingly effective though).

    As for upping the T3 - I'm going to stick with the dose which doesn't actually make me feel noticeably worse for now, until I feel confident enough to make a serious attempt to raise it. I can't afford to feel continually nauseous and dizzy and anxious and migrainey and completely useless for a week if I do the wrong thing, as my weight drops like a stone when I can't eat and I just can't risk losing any more.

    The past year has been pretty hellish, and even now I can't say I feel all that well, just less ill than I did a year ago (again fingers crossed that I'm not jinxing it!). I take heart from reading on here about a lady who took a year to get herself up to a proper dose of T3, so it isn't just us.

    I have a host of other symptoms which like you I would dearly love to get rid of, and I'm hoping at a later date I will be able to increase the T3 or even add in a little T4. I would much rather just be able to pop that little white levo pill every morning and forget about it, although it seems unlikely at the moment. As I keep telling my GP, nobody wants to put themselves through all this for fun - I didn't ask for the levo to bite me on the bum, and if it hadn't I would still be happily taking it.

    I have tried to reconcile myself - not very successfully - to the reality of not being able to do the things I could before (even when on levo), and that by taking such a small amount of T3 it will no doubt take absolutely ages to feel anything like really normal - maybe never. But, when I began on the T3, as I say, I was just looking for something that didn't actually make me feel worse - I felt so ill that taking nothing was obviously not an option.

    For now, slow and cautious will have to be the order of the day for me personally, but if you can get your iron/ferritin and vits up to speed I think it would help. I'm trying not to beat myself up about not being able to increase the T3 - you can only do what you can do unless you're feeling strong enough to put up with the side effects, and I'm not! :-( even if that sounds wimpy. I hope you fare better - good luck. xx

  • Hello Kanga, you seem to have had a pretty rough time for a lot longer than me but your story sounds very familiar.

    Was diagnosed initially in 2002 and my first recollection of feeling really unwell was about 2007. Over a Christmas holiday I developed masses of small red spots on the inside of my thighs which left bruising. I was so worried I had something like meningitis I went to the hospital - really rude doctor said if it was that I would already be dead -charming. However, after that I developed bad hives, they would come in bunches anywhere on my body except below the knee and face and itched like crazy. Never attributed it to T4 and still don't know if they were related but to cut a long story short I just went for allergic reaction to something and cut out milk and one or two other things.

    Never felt really well after that and had such bad dryness on my shins that the skin was thin and skin fell off like dandruff.

    About 2010 I took another dip and couldn't even get out of bed, fell asleep all the time - but again I never related it to the thyroid or T4.

    About 12/18 months ago, after a private blood test, I found my TSH had risen to around 44 and also found out that the Levo I was taking had been withdrawn because it was ineffective - so goodness how long I had been taking it before it was withdrawn.

    Felt I had been hit by a train, but really knew nothing much about the thyroid until I joined this site. At present I am with an endo and a combo of T4/T3 but I still don't feel normal. Just hoping that the Vit D and B12 etc will kick in and make the whole system work properly again.

    Would love to know what the spots and hives were all about, but don't suppose now I ever will.

    However, I will keep in mind the T4 intolerance and if all else fails see if this can be taken out of the equation -you never know.

    Good luck and if you ever find out about the spots, please let me know.

    Thanks, Jan x

  • Hope you feel better and good luck x

  • Looking forward to see if you get a quick response with T3 adding in - or a retest whenT4 level in body has resettled.

    If that TSH stays up, I hope the former -if Endo is confident

    He will hopefully do a freeT3 test this time to help in this.

  • Here's hoping , looks like there's more to all this than I ever knew, been taking levo for along time now, just pushed through each day,didn't know any different, but I'm tired of it all (literally ha ha ) 50 now, just want me back x

  • Be nice if there was a computer program, somewhere, that could take in blood results, DNA check for deiodiases etc & current state of health and spit out a dose regime. Shall we call it 'Mendo'? :)

  • Yes would be nice lol x

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