Liothyronine on NHS

[EmmaJM]

So I’ve been paying for a private prescription for about 6 months now and finding a huge difference now I’ve added liothyronine into my daily meds.

How easy is it to get this on an NHS prescription now?

[Hidden]

Still pretty difficult by all accounts. Depends on your CCG too. Some, like Devon, blacklisted it and won't prescribe it under any circumstances.

[TaraJR in reply to Hidden]

Devon will actually prescribe T3, but they only a maximum dose of 10mcg daily. I don't think they would have such a policy with insulin - another vital medication

[Hidden in reply to TaraJR]

Ah, my mistake.

Yes, I've often thought this; a friend was asked by her GP to reduce her levo because 'you need to be on as small a dose as possible'.

They'd never say that to a diabetic. You need what you need. Not 'well, don't go on medication yet because it will be for life' 🙄

[SeasideSusie Remembering]

I think it is unlikely that your GP will take over prescribing. An NHS prescription for T3 needs to be initiated by an NHS endo. Is your private endo also NHS?Does your GP know you are taking T3 and know how well you are doing on it?

If yes, maybe you can get a referral to your endo on the NHS and he can initiate an NHS prescription which your GP can hopefully take over at some point.

Of course, this all depends on whether your CCG allows prescriptions for T3.

[Redlester in reply to SeasideSusie]

Sorry for hijacking this thread SeasideSusie, and apologies to EmmaJM, but I have a similar issue which I was about to post on but is pertinent to this thread. I had an appointment with my NHS endo a couple of weeks ago. By the time I saw him I had seen someone privately who had prescribed T4 and T3 in combination; i had a dreadful reaction to the T4 and he advised me to drop it and stick with T3 only which caused great improvement for me. When I saw NHS endo for first time since onset of pandemic I told him what had happened and he said he was prepared to take over that treatment. He wrote a letter to my GP saying he was happy to support this ongoing treatment and recommending the appropriate dosage. I have no prescription from the Endo as he seems to think that GP will prescribe it. Can my GP refuse to prescribe T3 if the NHS endo is recommending it?

[SeasideSusie Remembering in reply to Redlester]

Can my GP refuse to prescribe T3 if the NHS endo is recommending it?

I honestly don't know. After intial trial of T3 on NHS prescribed by endo, if endo agrees the patient benefits and should stay on T3 then the GP should take over prescribing, but as the cost is then borne by the GP's surgery I suppose they might not want to pay for it.

[Redlester in reply to SeasideSusie]

If GP refuses to bear the cost can Endo prescribe directly to me from the hospital pharmacy if I go back to him and tell him GP won't prescribe it? Surely a patient cannot be left in limbo situation where NHS Endo says patient should continue on T3 only treatment but the patient cannot get anyone on the NHS to actually prescribe it.

[SeasideSusie Remembering in reply to Redlester]

Your NHS endo may provide the prescription, I can't say with any certainty I'm afraid.

[Redlester in reply to SeasideSusie]

It looks like I am going to have to try GP - I expect them to turn me down and then am going to have to approach endo. I would like to be on firmer ground and more sure of my position before approaching GP though.

[SeasideSusie Remembering in reply to Redlester]

You can check out if your CCG allows prescriptions of T3, and you can check whether your surgery issues any prescriptions for T3. I don't have the links to check this but if SlowDragon is around she may be able to provide the links.

[Redlester in reply to SeasideSusie]

That would be great if SlowDragon could provide the links as I wouldn't have a clue how to do that.

[SlowDragon Administrator in reply to Redlester]

Liothyronine prescription numbers For England only

openprescribing.net/analyse...

You can search by CCG area too

Eg Sheffield CCG

openprescribing.net/analyse...

Some CCG areas worse that others

[Redlester in reply to SlowDragon]

Thanks SlowDragon.

I am in Northern Ireland - is it different for NI or do these apply here?

[Hennerton]

Where are you in the U.K.? Some CCGs will give it but many won ‘t. I am in Oxfordshire and currently get it on prescription but for how long? We never know.

[SlowDragon Administrator in reply to Hennerton]

I am also in Oxfordshire and get on NHS

Initially my GP said “you can’t take that it will kill you”

A few days later (after endo intervened) I got prescription on NHS

GP flabbergasted at my improvement and just waves me through annual reviews

[EmmaJM]

Im in Lincolnshire and the CCG will fund it after a trial with a private endocrinologist. He also works as an NHS endo. My GP is aware that I am taking it and really pleased with my progress. I obviously need to ask my private endo to ask my GP to start prescribing it

[TaraJR in reply to EmmaJM]

You sound as if you're likely to be successful. If you're on Facebook, you may like to join ITT Improve Thyroid Treatment, who have template letters for patients to use, which contain all the national guidance that drs and CCGs should follow as best practice.

[Sandra600]

I live in Suffolk and get T3 through the NHS

[McPammy]

I live in Cheshire and get T3 through the NHS. My GP is really pleased with my positive response. I have to get it via my NHS endocrinologist and collect it from the hospital pharmacy. It was a real battle to get it on the NHS. It was agreed after a successful 3 month private trial. I hope it continues for life.

[EmmaJM in reply to McPammy]

Thank you!! That’s what I’m hoping with having had it on private as a trial for 6 months and a huge improvement in my symptoms. I shall ask my endo if he can do it

[Hidden in reply to McPammy]

Can I ask how that came about? Did your private Endo just ask your GP to take over the prescription?

[McPammy in reply to Hidden]

I was eventually prescribed T3 through my NHS endocrinologist. He wouldn’t at first. My GP told me that the Endo got reprimanded snd next thing I had a T3 prescription off him!

[McPammy in reply to Hidden]

The NHS Endo still refused the T3 even though my recovery was remarkable. My GP told me that my private only Endocrinologist intervened. Next thing I knew I had a T3 prescription off the NHS Endo! I was in a bit of shock by good shock.

[Hidden in reply to McPammy]

That's interesting to hear. My endo is NHS and private but I see him privately.

I'm always interested to hear how NHS prescriptions come about!

[McPammy in reply to Hidden]

Problem with an Endocrinologist that works for NHS and private mostly follow NHS rules on Liothyronine. My endocrinologist is private only no NHS involvement.

[dizzy864]

I ve had it on prescription for many years. I live in Lincolnshire. I just wondered if the recent court case and fining of Pharma will make a difference. It must surely drop considerably in price. Hopefully health authorities will once again recognise the need for it in many patients Let’s hope so!!

[SlowDragon Administrator in reply to dizzy864]

Price has reduced from £268 to £101 per 28 tablets 20mcg tablets

Also looks like more brand licenses may be issued for 5mcg tablets as that’s currently expensive at £90 per 28 tablets as currently only single license

[dizzy864 in reply to SlowDragon]

That must be great news for so many people and so many thyroid sufferers in the future