Finally got given a prescription by my NHS endocrinologist for liothyronine in July.
Put the prescription request in to my GP surgery at the start of this week, along with a copy of the letter from the endo confirming I'd been given it for 3 months and asking them to take over the prescribing.
Just had a call from the surgery saying T3 isn't funded locally, and that my endocrinologist needs to put in a funding request for the GPs surgery to be able to prescribe it (not sure if relevant, but my endocrinologist is Peterborough CCG and my GP is Northamptonshire CCG).
Is this really how it works? I thought I'd done the hard bit by managing to get a 3 month prescription from the hospital.
If anyone can confirm either way that would be great. And if the surgery is wrong, if anyone could point me to any links I can print and show them that would be fantastic. Many thanks.
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Fluffysheep
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Hi, if you google the name of the Ccg and liothyronine eg “northampton ccg + liothyronine” it should hopefully take you to what is often called the formulary pages for that CCG - this often lists certain medications and whether or not they are authorised by that particular CCG and whether at a primary/secondary level. Not sure if that helps you actually getting the prescription sorted though, but might give some background info.
I can't seem to find it for Northamptonshire CCG, but can find it for both Northampton and Kettering hospitals, where it is listed as RR in a red box, which means not recommended for prescribing in either primary or secondary care. This is for the tablets, which is what I've been prescribed.
Above this it list liothyronine injections (didn't even know these existed!), which have the same RR box, but also say they need CCG approval other than in critical care.
So does 'not recommended' mean exactly that, and that they can prescribe if asked to? As it doesn't mention CCG approval like the injections do.
Fascinating! My area falls into Category B.... "The issue with CCGs we have classified as Category B is that published information on their position is that liothyronine can only be prescribed in hospital and/ or in unreasonably limited circumstances, which do do not include treatment for hypothyroidism where levothyroxine is not suitable, such as the patient falling into a coma."
I wonder if you could get that message from the surgery in a letter so that you could send or show it to endo ( and keep as evidence for future). How disappointing after finally getting a prescription. Hugs
Thank you. I have no further endo appointment at the moment. The pharmacist who works at the GP surgery (she is the one that phoned me) said that they have sent an email to the endo's secretary, along with the form he needs to fill in to apparently request funding.
No idea whether this will happen or not. The pharmacist is going to keep me posted apparently, but she only works Thursdays and Fridays at our surgery and isn't in next week.
He wrote the letter the day after I'd been in clinic (although neither I nor the Dr got the letter, so the secretary re-sent to me last week and I took it into the GP surgery on Monday after they confirmed they hadn't received).
I'm assuming he did it like this because he'd given me a prescription for 3 months, plus I've been on it for around 2 years now and he knows this, so have kind of done the trial already.
I think the way he has worded the letter is actually to try and help me, but in doing so he has been very non-specific. The hospital would (supposedly) only agree a prescription of 20mcg per day. However, the dose I was taking was 37.5mcg per day. In the letter he hasn't said anything about their prescription being for only 20 mcg, but has said that my dosage of levo is 100 mcg and lio is 37.5 mcg, and that I should continue with both. He hasn't specified how I should take it (I split my lio into 2 doses).
Although I've moaned about him on here (and wrote a complaint to PALS after my first visit!!) he has actually tried to help me, even though he hasn't appeared that helpful at my appointments. I do think he actually isn't too aware of the process himself, which is turning out to be a bit of a problem.
3 years ago and I was finally prescribed liothyronine T3 by my NHS Endocrinologist. My GP cannot prescribe liothyronine T3. But does prescribe me my liquid levothyroxine. I’ve continued to collect my 3 monthly loo prescriptions from the NHS Hospital I’m with. This is the only way I can get liothyronine from the NHS as it’s hospital only prescribed. I’ve not seen my NHS Endocrinologist since prior to the pandemic. I just phone his secretary every 3 months and request a repeat prescription. I have my bloods checked 3 monthly by my GP. As long as my TSH is not suppressed I get my liothyronine prescription without question. Today I have my first NHS Endo face to face consultation since prior to the pandemic. I do hope it goes well and there’s no problem. I don’t like having to make an awkward journey to the hospital pharmacy each time but it’s my only way of collecting the liothyronine at the moment. Request a repeat prescription from your hospital endocrinologist via their secretary.
When the endocrinologist gave me the 3 month prescription back in July, he said that the hospital would only prescribe it for 3 months, and I wouldn't be able to get it from them again, it would have to be the GP.
I would be happy to travel to the hospital to pick it up if they would be willing to give it to me. In fact, I'd travel pretty much anywhere to pick it up!
I’ve just seen my NHS Endocrinologist. Main reason he is very happy with me and more than happy for a repeat prescription of liothyronine T3, he explained, is due to my TSH being in range again. And my clear display of well being.
Maybe recheck why yours won’t do a repeat for you and see if you can change their minds.
For the life of me I have no idea why the surgery was asking you to ask your endo …. Surely the shortcut (and protocol) is that the surgery should inform the endo! Direct contact NHS to NHS. If they were just phoning to inform you, that is good practice but if it’s about you doing their job? ! This is shocking and shoddy. Why am I shocked but not surprised? If ever an organisation fell into the category of “the left hand does not know what the right hand is doing” it’s the NHS!
It's all a huge mess. The joint thyroid groups have been fighting this for several years. We're now in discussions with NHS England, and HOPE we'll get there this time.. to get the national guidance re-worded to make it absolutely clear that an endo can initiate a trial then it goes to a GP with no fuss or CCG/ICB policies saying otherwise.
If you're on FB, do join us on ITT Improve Thyroid Treatment - we have several template letters to send to CCG, ICB, Endo, GP, MP, Healthwatch or whoever, stating what should be followed.
I would also like advice on how to get liothyronine dispensed. I recently had allergic reaction to Acacia powder in most brands of liothyronine. My pharmacy (Pharmacy2Go) can't get any brand that does not contain Acacia, saying that SigmaPharm is not available at all and Roma is not available through their stockists. (I need 5mcg tablets). I wondered if it could be dispensed directly from GP but have not approached them yet. Any advice welcome.
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