I received a message from my doctors saying that I have to go in for a meeting because prescribing of Liothyronine in Southeast of London is no longer available by NHS England.
I have been on Liothyronine T3 monotherapy for many years and am stable on it and was very ill before.
I feel very overwhelmed so if anyone could help I would be very grateful
Hello T3 is available on the NHS but most ICBs ignore that guidance and have looked to remove it. Get onto ITT and ask for support on the group.
Don’t despair. You can buy it privately and it’s not too expensive. [redacted by admin] But read the forum posts about the NICE guidelines for reasons why the NHS should prescribe T3 for you. Do you have the DI02 genetic mutation which leads to incomplete T4 to T3 conversion? If you do, and you get it tested and show the result to the GP etc, it may help your case.
It is too expensive for some people.
Could you post the names of pharmacies where it isn't too expensive?
from what I understand myself, (I’ve just been re prescribed it Again by Endo.) If an endocrinologist prescribed it for you, the doctor should not stop prescribing it for you. Read the NICE guidelines. (I’m sure that’s what I’ve read)
Oh dear, I’m so sorry. That is bad news. I am also taking a significant amount of T3 (not monotherapy but with T4 in a funny ratio, but have been on mono therapy in the past) and it is so refreshing to come across someone else on this forum on T3 only. This forum is incredible and I have learnt so much over the years but more recently I have noticed that there are a high number of posts from people on higher doses of T4 with only a teeny tiny amount of T3 added, and they say in their posts that they are taking T3 but don’t mention any T4 and expect you to be psychic and assume that everyone who takes T3 is taking it with T4… argh!!! Sorry rant over (sheepish face!) So I think it’s great that you have posted and I really hope you manage to get hold of some more T3 from somewhere.
I have been thinking about getting my T3 from somewhere other than the NHS so I will be interested to see what others say in their replies to you. I looked into Roseway labs the other day and it seems that if you can provide them with just one prescription from a doctor for T3 they will be able to do you repeat prescriptions going forward without having to go back to your doc and get another one. So perhaps you could ask whoever prescribes your NHS T3 to do you just one last prescription so you could send it to Roseway. x
Interesting I use Roseway for my 1st lot didn't realise I could get without prescription maybe useful, I've only been on T3 for 6-7 weeks so still early days
I suspect that the remaining endos who do prescribe it are also beginning to feel that pressure by ICBs / hospital mgmt to not prescribe it. We really do need to start gearing up for a court case to challenge this. I’m happy to help do this but need help given my other life limiting diagnoses and scatty brain.
There has been mention of privately sourcing replacement on this post. Hopefully it won’t be necessary for you to self source a supply but if/when at that stage please carefully read & follow the advice in this warning post.
healthunlocked.com/thyroidu...
Thanks
Charlotte6789 I'm very sorry to hear this. South East London policy is going against all national guidance on T3, and they should be called out on it. And you should keep your NHS T3. Their formulary does not contain the latest national guidance so it is out of date.
selondonjointmedicinesformu...
Are you on Facebook? If so, please join ITT Improve Thyroid Treatment group - we have a template letter you can send to anyone/everyone you need to. It includes details and links to all national guidance and parliamentary statements on T3.
facebook.com/groups/ITTCamp...
Hi Tara,
Thank you for you reply.
You said that their formulary does not contain the latest national guidance so it is out of date.
I am wondering if you can tell me if this refers to the NICE guidelines or something else (sorry this is all new to me)
I have an appointment booked with the doctor to discuss this and so would like to know exactly what I need to say. i.e it would be great if I could show the exact specific evidence of how the nation guidance has changed and they are following an older version.
I joined the group and found this guidance,
facebook.com/groups/ITTCamp...
but in the comments it says that there is a more recent guidance but I can't find it. :S
Thank you,
Charlotte
I'll private message you on here...
Charlotte6789 did you see my private message? And have you found the up to date template letter?
London event to make your views known in person to NHS England - Sept 5th
N.I.C.E to stop the use of Lyiothronine (T3 ) prescribing
ENDO ASKING MY GP TO CONSIDER TAKING OVER PRESCRIBING OF LIOTHYRONINE
Timing of my T3 Liothyronine before my blood test in 2 days
Proud of my little pink line showing T3 prescribed by NHS 😁
