Price of T3

[Rambling9]

Hi - My GP tells me he cannot subscribe T3 even if recommended to by a private endo as London SW health authority doesn't allow it. My only option (apart from moving house!) is to get a private consultation and trial. I intend to do this as I need to know if I can feel better or not

He cautioned me re cost and sustainability of choosing to buy T3 long term - hence my question above.

For those who get private subscriptions - roughly how much do you pay?

Apologies if it's asking for oft repeated information - I've tried a quick search and can't find the answer

Thx

[SlowDragon Administrator]

NHS GP can only prescribe if an NHS endocrinologist says you have clinical need

You could request GP refer you to an NHS endocrinologist of your choice

However it’s often at least a years wait for referral

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

list includes some that are NHS and private

Could see privately initially then transfer to NHS

Private consultation is £250 Approx initial appointment

Cheaper on follow up

T3 on private prescription much cheaper than NHS pays

Thybon Henning 20mcg tablets are Approx £60-£80 per 100 tablets

Initial dose is 5mcg per day …..usually SLOWLY increased to 2, 3 or 4 x 5mcg per day

Cutting 20mcg into 1/4’s

[Rambling9 in reply to SlowDragon]

That's interesting - my GP is saying that because our health authority doesn't prescribe it then even if recommended by an endo who is both private and NHS he still can't prescribe it for me

[SlowDragon Administrator in reply to Rambling9]

which ICB area

over 63,000 prescriptions on NHS in England in last year. Typically 6 prescriptions per person per year

Searchable by ICB area

openprescribing.net/analyse...

You would have to be given trial initially prescribed by NHS endocrinologist via hospital pharmacy for first 3-6 months

Assuming trial goes well, endocrinologist then formally requests GP take over care and cost of prescription. With annual review back with endo

Very few NHS endocrinologists are thyroid specialists and very few thyroid specialist endocrinologists are pro T3

However as price has dropped, more people are being prescribed

Price NHS pays currently £40 per 28 tablets of 20mcg ….. down from £268 at its most expensive

[helvella Administrator Thyroid UK in reply to Rambling9]

The endo might work for NHS and privately but, if you saw the endo privately, his NHS hat doesn't apply.

[Rambling9 in reply to helvella]

Thanks Helvella - presumably if my GP referred me then it would be okay but I'd have a long wait?!

[helvella Administrator Thyroid UK in reply to Rambling9]

To be clear:

If your GP referred you to an NHS endo, and that endo said to prescribe T3, then it might be OK.

Even then, we have seen all too many members having difficulty in actually getting a prescription issued. Or getting referred to another endo to be de-prescribed T3.

Suggest you have a read through some posts over the past months by jimh111.

healthunlocked.com/user/jim...

[Rambling9 in reply to helvella]

Got it! Thank you

[helvella Administrator Thyroid UK in reply to Rambling9]

And you might find this information of interest and useful for reference:

Current NHS Drug Tariff Liothyronine Prices

Link to a blog post of Monthly NHS Drug Tariff prices for Liothyronine products from January 2023 onwards.

Also includes link to information for Northern Ireland and Scotland. (Wales is based on England.)

helvella.blogspot.com/p/cur...

Last updated 27th October 2023

[Amazon07]

I had this same problem 10-11 years ago! My GP was prescribing me Thybone and then she said the prices went up and it’s cost the NHS £3-400 per month to give me my medication. I opted to buy online and have been taken Tiromel ever since. Xx

[mfinn]

Rambling9 I live in the London SW Health Authority area and I've been prescribed T3 for several years so. Your GP is wrong.

[tattybogle in reply to mfinn]

have just looked up the Formulary for SW London ICB ...looks like it's only available to existing patients in that area : so you can have it mfinn, but not any new patients.

( assuming this is their current position and hasn't been updated, i only did a quick search) : swljointmedicinesformulary....

"To be prescribed ONLY for existing patients "

So ( tentatively) looks like Rambling9's GP is correct ,there does not seem to a current possibility of NHS prescription in that ICB, not even via GP referral to NHS endo .

[helvella Administrator Thyroid UK in reply to tattybogle]

That document refers to the 2017 NHS "Items which should not routinely be prescribed in primary care: policy guidance" document - six years old and out of date.

That document also does NOT indicate liothyronine as a high cost medicine.

Definitely looks worth arguing but that might take a lot of time and effort.

[mfinn in reply to tattybogle]

I could scream at the T3 situation. There was a slight improvement before Prof Pearce became head of the British Thyroid Association but he's so hateful towards T3 taking hypos that he (deliberately I think) put the situation almost back to square one. I wish when people want T3 they would keep fighting and shouting for it. Even when they're buying it privately and doing well on it, if they still made a noise the medics might realise just how many people are buying it privately and have a need for it. Right now nobody has any idea of the real number of people taking T3. The idea of looking after yourself is lovely, until you're old and scraping by on a pension.

[shaws Administrator in reply to mfinn]

I am now prescribed T3 (liothyronine)alone.

When first diagnosed (I had to diagnose myself after GP stated a TSH of 100 was o.k).

I was given T4 (levothyroxine) and it was awful for me as I then developed awful palpitations (mainly during night) and I was linked to the local hospital for their cardiologist to figure out why this was occurring but he couldn't reason why.

After some time I was prescribed T3 and this was perfect and still is as I feel I have 'normal' health - a calm body and no awful symptoms.

[mfinn in reply to shaws]

Like you Shaws, T3 is perfect for me. I can't understand the sadism of some medics when they refuse to recognise the relief T3 can provide. The professors spouting ignorant nonsense, on the one hand describing it as a dangerous drug on the other calling it a placebo! I'm glad you were able take back your health from them.

[Regenallotment]

Roseway labs private prescription is £75 for 3 months supply. My last phone consultation was £30. A member said this week that the phone consult has gone up to £50. Still very good value for the quality of advice and level of care.

[Rambling9 in reply to Regenallotment]

Hi Regenallotment - does that mean that if I get a trial of T3 with a private endo I can get a prescription from Roseway labs or only when I've finished with the endo and stable?

[Rambling9]

Thanks everyone for your replies and the subsequent discussion!

I started out thinking that if I went to an endo who is both private and NHS and subsequently stabilized on T3 then they could write to my GP with their NHS hat on (even though I'd paid privately) and then my GP would take on the prescription - clearly that's wrong and unless something shifts re T3 on the NHS then I'm taking on the commitment of buying T3 indefinitely!

I'm going ahead anyway as if it's my thyroid which is the root cause of my symptoms then it can hopefully be sorted - at the moment there's no joined up thinking!