T3 NHS Scripts providers is there anyone out there? X

[Zoco1973]

I’ve been under private to try to get to the bottom of my thyroid issues…prescribed T3 by consultant who does private and NHS in West Sussex. My GP has to prescribe however they are saying no…is there anything I can do? It’s expensive and a life long condition/medication to function it’s a necessary to have not just a vitamin to “pop” for 3 months then finished with it. Thanks for listening it’s so frustrating and stressful with the condition let alone fighting for tablet to make you feel normal! Xxxx

[GlowCoach Administrator]

Welcome to the group.

To be prescribed T3 on the NHS you need to be initially prescribed by an NHS Endo who supervises your care and then hands you over to your GP. Your GP may still not be happy prescribing T3 sometimes.

What brand and strength of T3 have you been prescribed?

Thybon Henning costs 60-70p per 20mcg tablet which isnt expensive.

[Zoco1973 in reply to GlowCoach]

hi there thank you for your response…I have had an Endo Consultant who does the private and NHS in the area. T3 which I have been getting works out at 1.20 a tablet. I went private as I’m lucky enough to have this as a work benefit, if I had gone NHS I wouldn’t have even got T3…so stressful. Doctors only need to prescribe the care comes under the Endo consultant.

[GlowCoach Administrator in reply to Zoco1973]

Can you get referred to this same consultant via the NHS? Then your GP may eventually be able to prescribe.

Exactly what brand and size T3 have you been prescribed?

You could ask the Endo to prescribe Thybon Henning 20mcgs T3, then you can cut to size. Would be cheaper for you.

[tattybogle in reply to Zoco1973]

NHS GP's cannot prescribe Liothyronine (T3) on the say so of a private endo / nor can they continue T3 prescriptions commenced in the private sector .

(not unless the GP is willing to issue a private prescription that is, which would be at their own risk and you'd have to pay for it , same as from private endo )

they are simply not allowed to even if they wanted to .

to see specifically what is allowed in your area do a search for your ICB area's name and 'formulary ' ....... then put 'liothyronine' in the search box . eg in my area has this ..

'Do Not Prescribe' under 'liothyronine therapy commenced in the private sector' lancashireandsouthcumbriafo...

GP's are only allowed to prescribe Liothyronine on NHS is if was started by an NHS endo as part of an NHS trial ( while working in their NHS capacity , not as private)

why is your private endo not prescribing it ? he must/ should know GP is not allowed to continue without going via official NHS trial route first.

[Zoco1973 in reply to tattybogle]

thank you so much for responding….should I ask the Endo to prescribe? It’s all so confusing!

[SlowDragon Administrator in reply to Zoco1973]

Sounds like you haven’t yet started on T3?

You saw endocrinologist privately?

What dose does endo want you to start on

Yes endocrinologist needs to prescribe privately if you saw him privately

If you saw him on NHS he should give you NHS prescription via hospital pharmacy for initial 3-6 months trial

[Lottyplum in reply to Zoco1973]

I have a private Endo+get my T3 on prescription via said Endo from Roseway Labs. Thybon Henning £60 for 200x20mcg which I cut into 4 with pill cutter.

[Zoco1973 in reply to Lottyplum]

Hi there thank you so much for reaching out…xx

[Lottyplum in reply to Zoco1973]

Just got my new prescription for Roseway Labs-price is still £60.

[Carna in reply to tattybogle]

I can get T3 from NHS after going to see private Endo and getting a private prescription initially. She wrote to my GP and asked the NHS to fund my treatment. I got a NHS endo zoom appointment after a few months who asked me how I felt on T3. After a while they agreed to fund it but won’t prescribe my preferred Thybon.

[Zoco1973 in reply to Carna]

Hi! Thank you so very much for responding there’s hope yet! X

[Zoco1973]

hi there thank you for responding…so the Endo is private but is also the Endo consultant at the local NHS hospital so I would be under him on the NHS. I have started I’m on 20 mg a day. So I’ve been trialling since November but that was whilst I’m on private however I can’t afford the scripts going forward…x

[SlowDragon Administrator in reply to Zoco1973]

So you need to transfer to see him on NHS and then he has to write to your GP to take over ongoing prescriptions and cost of T3

Your endocrinologist may need to make an individual funding request on your behalf

It can take time to sort out

Are you in England or Wales, Scotland or NI?

Which brand of 20mcg T3 are you currently taking on private prescription

[SlowDragon Administrator in reply to Zoco1973]

you need to click on “reply “ button otherwise other poster doesn’t get alerted

I just happened to revisit page

[HandS]

Sorry to put the cat among the pigeons …….

But - what happens in one area does not apply across the UK and prescribing of T3 by a GP is governed by who funds them.

I have an NHS Endo who prescribes my T3 - my GP refused to take it on (they are not allowed to prescribe T3 by the local ICB). I therefore get 3 monthly repeat prescriptions from my NHS Endo.

In the first instance, I would ask the Endo you are seeing privately for advice/options for moving ongoing care to NHS. Often a consultant’s secretary can be very helpful too in knowing what is possible in an area.

Hope you get it sorted successfully.

[Zoco1973 in reply to HandS]

Thank you so much for responding…it’s all really luck of the draw isn’t it…it’s so confusing and stressful. It doesn’t need to be this hard surely! I’ll get you updated thank you once again xx

[HandS in reply to Zoco1973]

Yes, it really is the luck of the draw, which makes an already stressful situation much harder than it needs to be. I seem to be extremely fortunate with my NHS Endo - and dread him ever leaving! I really hope you can navigate access to NHS T3.

Look forward to hearing how you get on 🫰

[Zoco1973 in reply to HandS]

thank you so much even though I wouldn’t wish this on anyone it’s somewhat reassuring that others experience the same and makes me realise how much people are being failed x

[Topes009]

Just to add in my experience, I’m in the Bath area. I see an nhs endo who agreed to trial T3, (it took me years to get one who would) GP won’t take over prescription so endo gives me 6 month scripts.

[Zoco1973 in reply to Topes009]

Hi! Thank you for replying…is the private script? X

[Topes009 in reply to Zoco1973]

No, it’s nhs. He’s a nhs endo at the RUH in Bath.

[Zoco1973 in reply to Topes009]

thank you for confirming lovely xx

[Topes009 in reply to Zoco1973]

No problem. Good luck, hope you get what you need. X

[Daisywhoopsa]

I’m in West Sussex and 3/4 yrs ago saw a private endo who is also an NHS consultant in my area - maybe same one. He privately prescribed T3 which I initially got from a private pharmacy. Once on a stable (haha) dose after about 6 months he wrote to my GP asking him to continue my prescription via NHS on the ‘shared care’ basis which I believe applied in this area. Since then I’ve very fortunately had no issue getting T3 via GP. As an aside I had asked to be referred to an endo via NHS and been refused 3 times as not necessary (work that one out). About 18 months ago I asked again and have been referred - still waiting for that appointment! Feel free to message me if you want to compare notes.

[TaraJR]

The latest documents I can find on Sussex ICB formulary for T3... (hope they open)

int.sussex.ics.nhs.uk/wp-co...

and

int.sussex.ics.nhs.uk/wp-co...

[Zoco1973]

Hi there thank you for reaching out! You’re an absolute gem xx