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?
NHS BAN ON PRESCRIBING T3: Hello, new to this... - Thyroid UK
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
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
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.
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.
Just been informed today after my first visit to an Endo (9 years with Hypo) that within the next three to four months there will no longer be UK prescriptions for T3 being filled by the NHS.
She said It is one of the drugs on the list that the dury is still out on even though there is documented evidence that for many people it was the goal changer to their optimum health turn around. I will get my first prescription filled but after that I am on my own (or in the same boat as so many of you) please can you let me know of a reliable source from abroad that any of you are regularly buying.
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.
Ask your GP for proof of it not working, to back up his statement. He's scaremongering and talking nonsense.
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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.
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.
I could not get an appt with the endo of my choice for 12-18 months quoted and yet i got one within 5 days if i paid privately for it. He was happy to prescribe me T3 as i self treat with it and my test results are good and within range. He wrote to my GP to continue prescribing it and my GP has refused, even tho he said he would if a consultant agreed to it!! its all a nonsense and tbh i could do without the stress. I thought i had finally got it sorted only to find my gp lied to me and i am £170.00 out of pocket which would have got me 42 boxs of T3 utter waste of time and money xx