How do I get the NHS endo to prescribe T3?

[Alex_p]

Hello! I have an appointment with the NHS endo on Thursday and I want to convince him to prescribe T3. I’ve been taking levo and liothyronine since September - initially prescribed by a Romanian endo and then prescribed by the private endo I’m seeing. My blood test results look good but my TSH is low (<0.01) and I know this is the first thing he’ll say. I also tried to convince the other NHS endo I saw in October but she said that the guidelines say not to prescribe unless the FT3 was below limit and mine wasn’t. I would like to avoid needing to go to the private endo (so expenssive) and the hassle of needing to get T3 on my own, but I know the endo won’t listen to how I feel on T3. So any advice on what to tell him would be wonderful!

[Lalatoot]

Alex, I got it prescribed on the NHS by demonstrating that I was unwell and had poor conversion on levo only despite taking steps to optimise levo's effectiveness. I prepared a paper for the NHS endo who had been treating me for 5 years. I outlined how I took levo in a way to maximise its effectiveness and absorption. I stated I had gone gluten free and that I had supplemented vitamins to get them optimal. Then using my levo only blood tests showed that my TSH was under range, my FT4 60% through range but my ft3 was only 16.7% through range and I was symptomatic. My ft4 and ft3 were out of step suggesting poor conversion and my TSH suggested I did not need more levo.

As you are already taking lio this may be more difficult for you but if you have blood results from levo only that demonstrate the need for lio you could use them to show why it is necessary.

[Alex_p in reply to Lalatoot]

Thanks for replying. That’s exactly it, my blood tests from before starting T3 were showing poor conversion (noted by users of this platform and the endo back in Romania), but the NHS endo here didn’t care about that, she only cared if FT3 was below the lower limit. I keep going through strategies in my head: should I appeal to emotion (adding T3 has changed my life and I wouldn’t go back to a life without it)? Should I go in threatening that I’ll make a complaint that he doesn’t listen to how I feel? Would that even work? I have a feeling reason doesn’t go well with endos especially from my experience, they only see what they want to see.

[TaraJR]

I'd like to know which guidelines say you can't have T3 unless your level was below normal? I've never read that anywhere. It's certainly not in national guidance. I swear they make up the rules as they go along. Which area are you in?

[Alex_p in reply to TaraJR]

I’m in London and the endo is from St Thomas’ Hospital.

[TaraJR in reply to Alex_p]

Hmm. I'd heard some not complimentary things about St Thomas's and T3. Their website says T3 is not approved.

selondonjointmedicinesformu...

Their position statement is awful and hugely out of date. They are not following any of the national guidance on T3, which isn't acceptable. They keep referring to cost which is completely inappropriate as the cost has now dropped by 80%, They should be called out on all this.

If you're on Facebook, do join us on ITT Improve Thyroid Treatment. We've been fighting this awful situation for 5 years. We are all making progress, with patient groups and charities working together. We have template letters to use, and a list of all the national guidance you can quote to anyone who needs to hear it!

[Alex_p in reply to TaraJR]

Thanks, I’ll join the group. Is there any hospital that you recommend? I remember my GP suggesting this one because it was close to where I used to live. But I could speak to my GP about changing it.

[TaraJR in reply to Alex_p]

Hi. If you ask on ITT, someone may be able to help you. I can't help you myself as I'm not in London, but someone else may well do. And maybe check out the other trusts/CCGs (ICSs now) around the area. It's important to know what's what.

[serenfach]

Take a man in with you that looks like a night club bouncer...

Good luck!

[Alex_p in reply to serenfach]

Haha that might actually work, unfortunately it’s a telephone appointment. And I don’t know any muscular men

[serenfach]

I hope it went well.

[Alex_p]

I did it!! After a long discussion the doctor has agreed to advise I take T3. Now it’s up to my GP to prescribe it, but he was ok with that if the endo was ok.

[tattybogle in reply to Alex_p]

congratultions .. i think ? is your GP sure he will be actually be allowed to prescribe T3 on NHS without an NHS endo doing an official 'trial' of it first ?

the protocol in the guidelines for allowing funding of Primary Care (GP) prescriptions for T3 , is that it is INITIALLY prescribed by NHS Endo (Secondary Care) for a 3 month Trial period , and then Endo officially asks GP to take over of prescribing/ and cost of T3 on a 'Shared Care Agreement'

some people have had funding for T3 prescription refused at Primary Care level despite an NHS endo telling GP "its ok by me" due to this protocol not being followed

[Alex_p in reply to tattybogle]

Thanks for letting me know. Both the endo and my GP know that I already take liothyronine, but if it’s a protocol thing I can see how that might be an issue. I’ll see what the GP says after the letter and take it from there.