levo is not for everyone

i think , when levothyroxine works for some people, it is a fantastic result, and am truly happy for them!

But for those of us, that levo does NOT work for, we get frustrated and angry as there are very few alternatives readily available to us! So therefore we are NOT going to praise this drug! , I see it as MY poison ... in fact my endo has took me off it for a few days, to try and level me out!

I just think its so unfair that most docs will not bend or try an alternative...though at present my doctor is realising how ill i am and telling me that he DOES sign prescripts for ndt, but cant prescribe to me..so lets see!

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19 Replies

  • You don't have to praise it but calling it poison is going to scare new users who are probably worried enough without being scared to take their meds.

    I hope you feel better soon and can find a way round your meds problem 😊

  • bantam12 i said i see at as MY poison.. not that it IS POISON.. please reread! even my doc said i am having problems with it... wouldnt dream of scare mongering! i am offended!

  • I read your post correctly the first time and I personally think poison is the wrong word to use, that is my opinion to which I am entitled to express. I am very drug sensitive myself and many do not agree with me, even paracetamol, but I wouldn't call them poison.

    I will not add further to this thread, we will agree to disagree.

  • i found your accusations offensive. i have good intentions..

  • Martine1234,

    Bantam12 is entitled to express her opinion, as are you. She has not made any accusations, offensive or otherwise.

    Levothyroxine doesn't suit everyone and some people do better with Liothyronine (T3) or NDT but it is very difficult to get either prescribed on NHS and you may need to buy online and self-medicate.

  • Levo definitely didn't work for me. For whatever reason I gained weight on it. However...it did work for my cousin. So I'm very happy for her.

  • sliceoflife precisely.. and that is my point .. glad you read my post acurately.. if you ask some people, they will love it.. others,like me , wont... i am only stating how it affects me! i wouldnt dream of offending anyone.. thats not why i am here... i think when something isnt working... and your doc says at first it is.. you feel you are going mad... so coming on here and reading many others in the same position is enlightening... hope you are ok and found a different treatment? x

  • Armour made a difference at first but then I started feeling bad again. Plus the price of Armour kept going up so my doc suggested the generic form of Armour. I felt great again after switching. I don't know if Armour changed something again but it stopped working for me. Now I have another problem. Once again my doc moved! This makes the 7th time I've had to find a new doc. And this one sticks me on synthroid even though my file says "can't handle synthroid/levo".

    So now I hope I can find an online pharmacy where I can buy my own ndt.

    I hope you get on ndt!

  • I used to love Goldshield Eltroxin, then they changed it to Mercury Pharma Generic Levothyroxine and now I hate what this one has done to me and my son. Using any others now does not seem to work either. This Mercury one was poison to me and my son.

  • Jazzw yes i will , but it is my opinion.. i have read alot more controversy on here.. sorry to offend..

  • please dont just pick out the parts that apply to you and be ready to criticise.. for some , they agree...we all think different ... once again ... i do not want to offend .thankyou

  • I think it's about picking your battles. :) I'm not offended by you speaking your mind, but I do worry about the messages that are inadvertently spread by thyroid support sites. Levothyroxine really isn't the enemy. The main thyroid issues here in the UK are about doctors dosing levothyroxine according to TSH - which is the main reason why hypothyroid people continue to suffer - and the ridiculous price of liothyronine in the UK when it costs pennies elsewhere in the world.

    Levothyroxine does work for many. We don't know how many, but usually when it doesn't, it's because a doctor has kept a hypothyroid patient on too low a dose for too long - or worse, refused to treat that patient for years because he/she was "only borderline". Underdosing leaves patients chronically hypothyroid, leading to nutritional deficiencies like low iron, low B12, low Vit D etc because of low stomach acid - a hypothyroid problem. If left on a low dose (or no dose) for years, putting the damage right again takes a long time. This is where taking T3 can help, because the body can get on with using it, rather than relying on body processes to fire perfectly (which they won't after years of going downhill) and convert the levothyroxine into T3. But Liothyronine is unlikely to be tolerated well if your iron levels are low or if your adrenal function is under par - and again, one or both are likely after years of being undertreated.

    That's why people here talk about getting their hands on Liothyronine or NDT - not because those drugs are better than levothyroxine, but because their health has declined so far that they have to seek a slightly different solution. There are many who add liothyronine to levothyroxine or add levothyroxine to NDT in order to optimise their thyroid hormone intake.

    But I do honestly believe that if doctors did consistently dose levothyroxine according to symptoms rather than TSH from the beginning of treatment, far fewer people would need to seek out forms of T3.

  • I'm surprised at the reactions to this post. If you do a search for 'poison' on this forum there are over 400 mentions, a significant proportion of which are referring to levo as poison on the front page alone and I don't recall any of those people being asked to take their posts down. People say far more contentious and hyperbolic things here. I think we all take it with a grain of salt - ?

  • Yep, I'll retract my statement. Apologies.

  • ...Not that I wouldn't sometimes like to ask people to take their posts down! I see stuff that grinds my gears, believe me. But I also want to be able to come here and be fully open about how I feel about my own experiences, so I enjoy that openness and try to ignore the posts that would otherwise give me indigestion. :-)

  • I think I've been hypersensitive to this because I have a friend who's recently joined the site after being diagnosed with Hashi's. She's been taking levo for 6 weeks or so and is doing really well on it - but having visited us here now worries that it might not work for her. And when you're hypo, and still in that undertreated stage at the beginning of treatment, you worry lots, don't you? You can't help it because you feel so rough.

    I do worry that one of the messages people get - not so much from here because people will give alternate views, but from other sites, like STTM - is that levo won't work and that it's best to get your hands on T3 or NDT as soon as possible - without giving levo a chance.

  • Sure, I understand and agree.

    A lot of folk, by the time they get here (still unwell in other words), are angry, anxious, exhausted and frustrated, and I understand what that must look like to an outsider who is hoping for answers, not more problems and questions. But equally, usually the message newbies get is to try your levo and see where it gets you (I've read that dozens of times and have written it myself) because it's easier to be on levo.

    You also see the odd person who tries it and feels poisoned. That's legit too. A small percentage of people feel literally poisoned on it (same as a lot of other meds goodness knows) and I suspect more people feel metaphorically poisoned, eg I took it and continued to feel like I was dying and it gave me no relief at all. (That used to be me btw.) We see a lot of people here who seem by their test results to be undermedicated, so we know in many (most?) cases it's the fact that the dosing is off.

    Like you I find sttm problematic (their methods didn't help me because my symptoms are subtle), but it has helped a lot of folk I guess so we all go on our own journey.

  • What you have to remember, Martine, is that we're all different, and what suits one, won't suit another. NDT doesn't suit everyone, either. Nor T3. Lots of people say that T3 makes them put on weight. Come to that, not everyone can take vit D3 or vit B12. We have to find what works for us.

    The problem is that doctors have been taught in med school that one 'size fits all'! It doesn't. People who self-treat can experiment, find what suits them. Those treated by their doctors, often can't. But there are millions of people who do very well on levo.

    I don't really understand why you posted this. It isn't a question, it isn't informative - you are sort of preaching to the choir! - so what was the purpose? I think it's the randomness of this post that has upset people - randomness is rather unsettling, I find. So, if you had a point, it might be a good idea to explain it, don't you think? :)

  • Ah! Now I see!

    Its not poison, but of course if you don't get on with it, it is yours - or at least not helpful to you. And it fools the doctors into thinking they have a cure for us, which leaves us sick until, in my case, I took things into my own hands.

    It works for a lot of people, but we don't see them here on this board for long! Not poison for me, just no use. Its only the undertreated, and the ones for whom levo is unhelpful that hang around - like you and me!

    Apart from giving you somewhere to vent, is there anything we can do to help?

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