Request for advice about requesting NHS prescription for T3

[Zazbag]

Hello everyone,

I've finally had enough and am determined to get T3 prescribed on the NHS instead of self-medicating. I am based in London and have an NHS endocrinologist from the Thyroid UK T3-friendly list (Prof Parag Singhal) who is based at Weston General Hospital. I recently registered with a London GP.

I called the endocrine clinic at the hospital earlier to get the contact email address and let them know I intend to make a formal written request for liothyronine.

Anyone who has successfully been prescribed T3 on the NHS, please can you share how you managed to make it happen and any advice for what I should include in my letter?

I have thought of the following basic structure:

- Difficulties of my life before T3 (levothyroxine only)

- Life since T3 (gave me my life back)

- Research on validity of using T3

- What was discussed during endocrine appointments (I was told by Prof Singhal a couple of years ago that I need to be on levo only for a minimum period (something like 6 months) before I am eligible for a trial of T3 and even then need to wait 12 months for a board to approve my request which they probably won't, which seems ludicrous since being on levo only will worsen my health)

- Changes to pricing (less reason to refuse prescription, apparently it's only £42 pm for 28 tablets)

- Clinical need (endo has agreed I have a clinical need)

- RMOS prescribing rules (cite the prescribing rules that state it should be prescribed where there is a clinical need)

- NICE guidelines (need to research whether any apply)

- Current situation with self-medication and being unable to adjust dose due to price considerations (I struggle with making small dose adjustments because I only buy 50mcg tablets since these are the most cost-effective, I shouldn't have to dose based on cost)

- Will contact MP and solicitor if request is not taken seriously (not sure if making threats wise or appropriate but I've heard people say they were successful after contacting their MP and also that there was a legal case in Surrey that changed the prescribing there so that T3 became available again)

Many thanks in advance!

[tattybogle]

hate to be a damp squib Zaz , but i don't think the NHS even have a pathway marked , "considering requests for T3 made in well referenced, logical letters from patients"

i think they only have a pathway marked "if you are referred to an NHS endo, and IF the Endo agrees to trial of combination therapy ~ after first making sure all local conditions/ criteria are met , and all other causes for remaining symptoms have first been ruled out, then you can try it " ( but only if the local area's formulary say's it can be prescribed for this purpose to new patients )

Weston seem to say it can, be prescribed by Endo, assuming i've got the right Weston , and assuming there isn't some more small print i've missed saying 'do not prescribe for new patients' : remedy.bnssg.icb.nhs.uk/for...

i suspect however brilliant a letter you write , the response would be 'we are following locally agreed policy' and they would say the same to anyone else who asked ,, eg MP / lawyers.

(Endo being in Weston and GP in London could add another layer of complication at some point eg if london area won't agree to take over prescribing after endo has done a trial and deemed it successful )

endo info from 2 yrs ago may not be up to date now , some areas have reviewed formulary policies since then ,, and there has just been a new consensus statement published.

So you first need to find out 'where the goalposts are' for the area your endo is working in. (and probably the goalposts for the london GP area) .

All the formularies i've seen , and the consensus statement make it very clear that a patient already using T3 sourced privately . (even with very good effect on symptoms) , is not a valid reason for NHS Endo to agree to continue prescribing it, or even to offer a trial of it , if they don't agree it's needed , or if the local conditions haven't been met first .

[Zazbag in reply to tattybogle]

Just to quickly add – my NHS endo agrees I have a clinical need.

[tattybogle in reply to Zazbag]

..So where's the block ?.. is he not able, or willing to offer an NHS trial ?

[Zazbag in reply to tattybogle]

He just fobs me off when I asked and gives me vague responses that I think are just designed to discourage me from bothering.

What he has told me is that I need to be off T3 for a minimum period first, then I am eligible to apply to a board, who usually take 12 months to decide, and often their answer is no.

It doesn't seem like a very fair or logical approach and since he has only said this verbally, I want to know what the documented procedures actually are and whether I need to go to my MP or a solicitor to make progress happen.

[tattybogle in reply to Zazbag]

TaraJR is probably the best person to ask ... she is involved with ITT group ( face book? , not sure) ..... they have some detailed up to date knowledge of what policies for T3 trials are in the different areas, and they have some template letters already prepared for certain circumstances .

[JAmanda]

I’m afraid to say I didn’t have a great deal of difficulty at kingston nhs - but for me my hypothyroid aunt died of an impacted bowel as always undermedicated so I said t4 only made me unbearably constipated.. Also my general tip - it’s painfully recognising inherent sexism - is to bang on about how your health is impacting your husband and your relationship ! Ach forget I said that. Other than that docs like to keep you at work so saying how it’s affecting your ability to work might help. Plus if you’ve felt better in t3 that’s good evidence that your symptoms are helped more by that than t4 - and remind them of course the aim of any treatment is to alleviate symptoms (not teach a point in a range ).