NHS BAN ON PRESCRIBING T3

Hello, new to this, has anyone any idea just how many people are affected by this ban by the NHS NOT to allow Doctors to prescribe T3 even when there is a clinical need? I know of a few people who are struggling to get T3. This situation seems to be nationwide, and quite frankly is an outrage. Does anyone know if there is a nationwide petition which could be signed?

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  • I think, though I maybe mistaken, that there was a petition last year or early this year to try get it readily available on nhs prescription, I am wondering if that is what has kick started the widespread withdrawel of it as the price, I have been told, is astronomical now. To say its relatively cheap abroad.

    My friend is on t3 only as she cannot take t4, luckily she is still getting her prescriptions and should continue to do so or they are literally signing her death warrent. I believe it was a scottish lady that took up the fight, but again, my memory isn't all that goid and I am sure someone will be along soon with the correct info lol

    Just googled and found a petition, thyroid uk did one which ended in march but I think they onky got around 12 k signitures

  • HAVE JUST SIGNED AS WELL AND POSTED ON FACEBOOK

  • I've just signed, hopeful more will too that didn't know about it.

  • THANK YOU...HAVE SIGNED.XX

  • Hi, The best way to get T3 is to buy it privately online. We have been doing this for the last 15 years. Not only does it ensure you have T3 when you need it, but it avoids all of the aggravation of fighting NHS doctors and getting more and more stressed about it. As an NHS patient you are in a no-win situation. The doctors hold all the cards, so remove yourself from the situation. Jane x

  • HI,CAN YOU SEND ME DETAILS? HAVE TRIED SOME FROM ABROAD BUT NOT VERY GOOD.

  • Oz49,

    Which brands have you tried?

  • HI CAN YOU SEND ME DETAILS?

  • Janeb totally agree with everything you said

  • I agree with you... but I'd still like to see change.

    While going abroad for an answer is an individual solution to this problem, that will not change the ever-decreasing level of care patients are receiving from the NHS. THAT is why I have signed the petition.

  • It is not a NHS ban it is various CCG's instructing GPs not to prescribe.Whatever reason they give the real reason is cost.

    The NHS is and always has been underfunded .It always will be underfunded unless there is a major change in how it is organised and funded.But would any politician risk that.

  • Hi, this IS now a UK wide ban from Scotland down to Cornwall. It sucks.

  • You are wrong, see posts below.

  • Oz49,

    It is NOT a UK wide ban. Many of us are prescribed T3 on the NHS.

  • It's not a UK wide ban. I picked up my NHS T3 prescription on Tuesday. Whether the pharmacy can get hold of it is another matter!

    I've written to my MP about it (again) and yet to receive a reply. But then again he's yet to receive an "x" on the voting form from me :)

  • The ban is not UK wide. I am prescribed a daily dose of 60mcgs of T3 by my doctor.

  • You're right I think it is at the CCG level, but from guidance from above. It may not be an outright ban, but they are making it very very difficult to prescribe. I was on it - for years - moved GP (as I moved house), new CCG and first thing she did was try to get me off T3 - without even consulting an endo! I fought for a while, then agreed to a trial of increased levo to see if that would "fix" me... on her promise I could reinstate T3 if I wasn't happy. Well 12 months on, one lying GP later I am struggling to be treated properly. This is an abhorrent situation where care is not paramount. What is even more concerning is the willingness to provide antidepressants to mask the symptoms that could be alleviated with effective treatment.

    The only way to change (i.e. convince politicians to take a risk!) is to get as much public support as possible... but its a long game

  • I believe the reason behind all this is because the NHS have only ever used one supplier for T3 and the supplier obviously knows this and has hiked the price up. So there are reports of T3 costing over £300 and more per month. Whereas in many European countries you can buy it over the counter in many pharmacies for a few quid a month. I think many people are starting to take holidays abroad so they can go and buy their own supply or ask friends to bring some from abroad when they're on holiday. Not sure how easy that is with regard to customs etc. Though if they're in proper packs and for personal use, it shouldn't be a problem.

    The NHS should challenge the cost from the supplier or look for alternative suppliers who would compete on price. Instead of just saying its too expensive you can't have it.

    I bought some a few months ago with a view to switching from Levo directly to T3 but in the end saw an Endo in London and have got NDT to try instead. But I'm aware that NDT doesn't work for everyone for various reasons (I'm only in week 6 just now) so have kept the (600) T3 tablets for now just in case I need them.

  • First iv heard of this as I'm on t3 and still getting mine thyroxine does not work for me at all

  • Here is the Times article outlining the cause

    m.imgur.com/a/U42vD

  • My pharmacy told me they had stopped making it which wasn't true. I changed to another pharmacy and they can still get it. I hope NHS don't stop it as I was practically bedridden without. I'm really fed up with this CCG, they have changed four of my other meds on grounds of cost but because they were inadequate actually ended up costing more so I was changed back. I've signed the petition although it didn't specifically mention T3. We have to fight this.

  • Oz49,

    There is NOT a NHS ban on prescribing T3. Some CCGs have banned the prescribing of T3 but it isn't nationwide. There is most definitely a post code lottery when it comes to prescribing T3.

  • I to would like to know more about this I don't think it is right for it to be stopped at all

  • I can only take T3 to feel well. Fortunately mine has not been stopped (Dudley CCG), but it is certainly frightening to think it could stop at any time. It is said we live in a democracy (!) so surely we should try to keep writing letters to Jeremy Hunt, the Chair of the Health Committee (Sarah Wollaston), etc etc. One letter was sent to Sarah Wollaston, and a waffly letter was sent back by Jeremy Hunt.... but it seems nothing positive has come from it.

  • I spoke to my GP 10 days ago and he said there was no proof it works so would not prescribe it. I'm so frustrated I would love to try it because I would so like to feel bettter than I do now

  • Ask your GP for proof of it not working, to back up his statement. He's scaremongering and talking nonsense.

  • My doctors pretend that there is no other treatment than Levo, so, no hope of getting T3 on the NHS even though I suffer with most of the problems you get on T4 only and have done for many years as my Thyroid was removed completely. I wish I knew where to source T3 as I would gladly pay for it.

  • Some off topic replies have been deleted.

    If you require sources for medication or information about endos please contact the member by private message. It is discourteous to the original poster to make requests on his/her post as s/he will get email and on-site notifications which are of no interest.

  • An endo consultant placed me on T4/T3 combo trial last year March and I am still on it. I got told by a GP a couple of years ago that they cannot prescribe T3, only endo consultants (and only if an endo consultant would want to - the GP Registrar whom I saw after getting referred to hospital point-blank refused; the endo consultant I saw on my next appointment was the one who put me on the combination treatment).

    I had a look on bnf,org for the cost of T3 through the NHS. It is shocking that so many people need it and yet cannot obtain it. :(

  • Thank you for reply. The problem is getting to see an Endo consultant! 2 referals have been sent over the course of 9weeks, silence from the Consultant.

  • Hmmm... That is strange. Couldn't your GP chase it up? I thought you could choose the hospital you want to go to where you live, or has it all changed now the past two years since a GP referred me?

    I think you should follow this up with your GP and I hope he or she can chase it up.

    Good luck and keep us posted.

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