t3 liothyronine being stopped by nhs

i have been told that the liothyronine meds i take are being stopped by gp surgery. i take 50mcg a day. recieve 84 tablets a month. my surgery hasnt contacted me yet but i rang boots up where i get repeat prescription and they said it is costing the nhs £954 a month to prescribe and i will have to get a private prescription for it and pay that. who can afford that amount of money. does anyone else know if nhs is stopping it?

26 Replies

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  • It wouldn't surprise me. I've written a post about it last week. NHS has to find a way of buying it cheaper. In other countries in Europe this would cost about €4 a month, I think that's what someone wrote in the replies. 

  • Katherine107,

    What makes you think your GP practice is stopping your Liothyronine prescription?

  • i was told by endocrinoligist at hospital a couple of months ago that the surgeries are being informed to stop t3 . it must be because its too expensive. my gp has not contacted me yet but probably will soon. also i am hopefullly moving away soon so will no doubt be prescribed it at new surgery. very worried

  • I am in the same position GPs in Bristol have now stopped prescribing it, this is very worrying.

  • Katherine107,

     It's a lot cheaper to buy T3 online than to pay £954 for Mercury Pharma T3.

  • The British Thyroid Association and the Royal College of Physicians (I'm not positive about RCoP)) recommend levothyroxine only for treating hypothyroidism. They take the word of the pharmaceutical companies word. We do know many thousands are fine with levo but there is a lot of us who don't do well. So they have a "perfect excuse" it is now so expensive through Mercury Pharma (Amdipharm) charging extortionate amounts of money that it is being stopped. Some patients do need liothyronine and those who are extremely unwell on levothyroxine, I just don't know how they will get on.

    Your GP can prescribe another T3 on a named-patient basis (which is legal) but willfew take responsibility for the patient. 

    This is a link and you can ask the pharmacist how much an equivalent T3 will be. They are permitted to be prescribed.

    thyroiduk.org.uk/tuk/treatm...

    thyroiduk.org.uk/tuk/treatm...

    I think because everyone (on this forum in particular) maybe requesting T3 to try to improve their health and it is becoming too expensive (I think that's the basis of it). 

    I also know many are buying their own T3, which strictly speaking should be the case and we should be prescribed what makes us well and not be forced to take something that makes one incredibly unwell. It's well seen these doctors haven't any idea of what the patient has to go through and their families also, as its those who have to cope once more with ill-health.

    Is it our fault that Amdipharm has increased their price enormously, how can it possibly be so expensive? It's the same when that company also run out of the T3 causing panic amongst patients. It's horrendous.

  • its so appauling that i cannot really believe what price they are charging.

  • It is - and it has gone up continually over the past couple of years but now it's beyond belief.There should be a serious investigation of how much they actually pay, as I am sure they are ripping off the NHS with the result that patients will suffer - no doubt about that.

    If the pharmacists can source the other T3's much more sensibly priced doctors should be allowed to prescribe without any prejudice.

  • I've just been quoted on private prescription 500 pounds for 100 tablets of cytomel that's 50 days for me as i take 2 a day which is totally undoable for us.  im wondering is it even possible to get branded cytomel which doesn't have all the fillers etc as all the ones you can get seem to be generic liothyronine?

  • My prescription for T3 was cancelled by my GP while ago. So I had to order on my own, I got Uni Pharma from Greece thanks to the link I got here and I am okay, it is easy to order, it's not expensive and what is best - I don't need prescription.

  • thanks for this info will look into it

  • is it same strength as the one from uk. i take 20mcg tablet. 

  • Uni Pharma comes in 25 mcg tablets, same as most other T3s in other countries (I don't know why only NHS T3 is 20 mcg). I got used to the change pretty quickly.

  • Iv never been offered t3  im just on levithyroxine iv never felt well aches, brain fog, v dry skin,depressed,narky,tired how can u check if u need t3   im on 125mg levithyroxine  x

  • I wasn't well on levothyroxine same as you. My GP somehow agreed to prescribe T3 after I suggested it many times. Anyway, it's all gone now, recently he just informed me that I can't get T3 on NHS any longer. Since then I have to get it on my own.

  • It's really awful that we have prescribe our own medication to do with thyroid. I was on thyroxine for years and felt so unwell. Finally got to see an thyroid doctor at hospital and he was all for t3 and wrote to GP to prescribe it. I cannot understand why it's so expensive here.

  • Thank you all so much im starting to feel like there may be hope other than drastic measures of selling our house getting smaller morgage etc to fund such crazy prices!!!

  • As well as Uni-Pharma T3 from Greece, another popular one is Tiromel from Turkey. Both are 25mcg tablets, neither are expensive, and both can be bought without prescription. I can't help with a supplier. I haven't bought T3 for ages.

  • A very small piece of information: Takeda Pharma Liothyronine costs here in Finland 0,20€ or 0,14€ each depending on if national health shares the cost

  • suggest you read my posts and read all the links too

  • We all need a to get our heads around a standardised method for challenging CCG's , GP's and Endos...and winning!

    Then we all need to do it.

    I am challenging it, read my posts for info and links to papers.

    GPs or endos can prescribe it if you need it, you just need to go about it in the right way.

    They cannot say no because of cost or simply because CCG has told them they can't prescribe it.

    The CCG issues guidance which it expects Gps and endos to comply with BUT IT IS GUIDANCE. GPs can prescribe anything even unlicenced drugs,

    Constantly just going and buying online lets them off the hook and will leave you OUT IN THE COLD for any other NHS help for the rest of your life. "You are self medicating....what do you expect ...yady yah

    How are you gonna manage to buy it when you retire?

    What about future generations? Poor conversion runs in families, have you got grandchildren, sisters etc?

    It is not just about STILL getting it if you are prescribed now but future people being allowed to try the t4/t3 route.

    what I suggest from my research will have best chance of success and what i'm doing

    1) find your local CCG online, search 'traffic light' to find their particular classification of t3 ( 'red drug' or 'red drug and not recommended' ) It seems to vary between CCgs

    if RED drug - then pursue shared care agreement between consulatnt and GP

    'If Red drug and not recommended' get consulatnt to put in Individual funding application

    I will let you know how we get on.

  • No, the NHS is NOT stopping T3 its the GP that is thinking his meds bill is too high.

  • Fortunately I can still get T3 from the doctor (at the moment) but when I went to collect my recent prescription in Boots was greeted by a very rude pharmacist saying "do you realise this pot (28 tabs) costs £248". I smiled and just said "oh, the costs has gone up" and walked away. 😡

  • that is terrible. not our fault we need it

  • when I got my first pot of T3 my pharmacist said something very similar but it wasn't that he was being rude, simply that he was so incredulous he couldn't help opening his mouth.  We had quite a long chat about it and how the situation had come to be so ridiculous.

  • Mercury obviously have a seller's market in the UK but I wonder if the rise in price is at all a reflection of a higher demand due to sites like this raising awareness.

    We are often told that there is no evidence that hypo problems cannot all be resolved by prescription of T4 BUT as this 2002 study shows ncbi.nlm.nih.gov/pubmed/119... that does not seem to be the case.

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