Background: I initiated T3 in September 2020 through a private GP, then I was referred to an NHS endo who agrees I have a clinical need for it, but told me plainly he cannot prescribe it unless my GP agrees to take over the prescribing. But my GP couldn't, because it's a red drug. So it kept going around in circles. I have self-medicated the entire time I've taken T3 because of this.
Since I heard a few months ago from a post on here that T3 is no longer classed as a red drug on the formulary, I sat down to write a letter to my NHS endo formally requesting liothyronine on the NHS. However, he is based at Weston General Hospital and their formulary (BNSSG ICB) still lists T3 as a red drug: remedy.bnssg.icb.nhs.uk/for...
I actually live in London although my GP is based in Bristol and my endo is in Weston. I'm afraid to deregister from my Bristol GP as they are the only GP surgery who sort of listen to what I say even though they're limited in what they can actually do.
I want to get liothyronine prescribed on the NHS, and the fact that some formularies have it as an amber drug now makes me think it's possible.
Can anyone give any advice on what options I might have? Many thanks in advance!
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Zazbag
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Well living in London and a GP in Bristol is probably going to be an issue for a start
Your GP is suppressed to be local to your main place of residence
If an NHS endocrinologist says you have clinical need for T3 they should prescribe initial 3-6 months via hospital pharmacy BEFORE writing to your GP to formally request they take over care and cost of prescription
You can search prescription numbers here
Both by ICB area……and also by GP practice
Perhaps look at London GP practices near you …..see if any prescribe
In the graph below I can see that a surgery very close to me in London seems to prescribe T3. I remember visiting them recently to request to try them out as a temporary patient, but they said they're not accepting temporary patients. If I register as a patient with them, seeing that they do prescribe T3, what would my next steps be regarding obtaining the prescription I need from my endo? He has said a lot of contradictory and confusing things:
"You have a clinical need and I'm willing to prescribe but only if your GP agrees to take over prescribing"
(Then GP said they would be happy to prescribe but they can't since it's a red drug, so this went nowhere fast).
"To have a trial of T3, you need to be off T3 completely on T4 only for a minimum period of (I think) 3 or 6 months (don't remember exactly how long)"
(So I have to make myself ill again – how much sense does that make?)
"The board can take 12 months to review your request and even after that they answer is probably 'no' and you have to be off of T3 that entire time also"
Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to consider switching to levothyroxine monotherapy where clinically appropriate. In some cases a retrospective review of the basis for the original diagnosis of hypothyroidism may be necessary. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a GP with consultant NHS endocrinologist support. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.
The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the GP
but , if that formulary in your link is the one for the region your NHS endo is in ?
.... then he IS allowed to prescribe it (for combination therapy ~Levo +T3, not monotherapy ~T3 only ) if he deems it appropriate .
It says Red = Secondary Care drug..( presumably meaning can only be prescribed by Secondary Care/ Endo .. at least initially ,and then cost potentially taken over by 'shared care agreement' following successful NHS trial if GP is wiling )
."Liothyronine
Hypothyroid coma / rapid response desired
Approved for maintenance therapy in combination with levothyroxine for patients with severe thyroid deficiency, including patients with thyroid cancer, in compliant T-4-treated patients who have persistent complaints despite reference range serum TSH, provided they have received adequate chronic disease support and associated autoimmune diseases have been ruled out
At the meeting that took place on 6th September, the following decisions were agreed:
Approved
Liothyronine (TLS Red)
Agreed to be added as Red for dual therapy with levothyroxine only, when a more detailed patient pathway is proved." .....(i can find no mention of a restriction to 'existing patients only' when i used the search facility)
So i think you need to get him to clarify exactly why he's saying he cant initiate your T3 prescription .
Ps usually 'black' means 'absolute NO' ,.... in the area i posted about recently ( Lancashire) , it was Black (well grey ~under review) for 'new' patients .... and has been revised to Amber ..ie. secondary care (Endo ) initiated. You may need to find the definitions of the colour codes for the area you are interested in to be sure as i suppose they may not all use the same colours for the same thing.
Thank you so much, this is really helpful to know. I had gotten very confused by all the contradictory things he told me. He made it sound like I need to apply for funding which takes 12 months and is often rejected...?
oh .. not so sure i'm right anymore .. here are the colour codes for that areas formulary..., it seems RED means 'prescribing has to stay with secondary care' (which i assume means Endo)
yes .. my area links to that document too ...but i think it's only put there to show what evidence / recommendations they used to form their decision ,... the colour coding is their decision .
yes .. i think so ....., but even then, it is still dependant on getting their endo to agree to give a trial.. (and then to agree it was 'successful', before requesting shared care agreement with GP ) .
Even 'amber' doesn't mean they 'have to' prescribe a T3 trial .. it means 'they can if they want ,but they don't have to if they don' think a trial is warranted '
Well that's what amber means in the area i was keeping an eye on anyway ..as you can tell i don't actually know an awful lot about what's going on in any other areas .
Each ICB has its own colour scheme. Sometimes to 'ban' a drug they call it red, or black, or whatever colour they fancy. And of course why not spend more money in every area of the country going through T3 policies for months on end, when all national guidance says T3 should be prescribed of you need it. I'm getting mighty tired of all this unholy mess.
indeed , the deeper you dig , the more of a clusterf**k you uncover.
What happened about that most recent house of Lords question ? ,i haven't checked .... let me guess...... was it ' the sound of a can being kicked down the road' ?
The last HoL debate? Lord Hunt brings T3 up as often as he can! We heard that NHSE is doing a refresh of its T3 guidance. Patient groups are involved, but it is hard... ...
Now of course there is yet another new health minister in the Lords just when we were getting something with the previous one Lord Kamall.
Me too Tara! Btw I had call with endo from Weston and after 3 yrs of fighting he has agreed to take me on under his Endocrinology Team in Weston. I was in shock as was expecting the usual dribble about suppressed TSH and my non-existent T4 (0.5) when he was asking how long Id been hypothyroid for (which I thought he would have known?!) and other silly questions like do I feel tired on T3?! I was in such a shock and the phone line wasnt good that I didnt even get to ask if it was a trial or what?! I have an appt there on 21st just hoping it doesnt get cancelled re strike.
Considering it is banned in Somerset for new patients Im not sure what is going on and wont believe it until I get the script. I certainly cant keep travelling to Weston every couple of months and dr surgery a no no, so I am not getting too excited as I see further trouble ahead?! I know our lovely Carole has sent a complaint to the Ombudsman so may be he got wind?!
just sticking this here in case it's useful... (post by TaraJR re. document listing 'who's doing what they should .. and who's not playing ball '....... have you asked TaraJR for any pointers re your problem .. might be worth while ? can't remember if it's ITT or another T3 pressure group she's involved with.
Yes that's me, for my sins. I help to run ITT Improve Thyroid Treatment (on Facebook), and we have a template letter people can use which details ALL national guidance, plus statements made by various government folk on T3.
If you're in Norfolk, I help to run Thyroid Support Group Norfolk too. Though we did win the fight here, and T3 is back on the formulary with a simple patient pathway
Bloody Good Work you've done , and very effective . must have taken over your life .. i imagine you've pretty much 'had enough' right about now .
I'm really fond of North Norfolk ~ Brancaster / Holkham /Wells / Cley / Blakeney etc ....we were taken there every year as kids because it was the closest place my Dad could find that was still relatively 'empty' in the school holidays) .
Glad it's still empty .. mind you it would take a lot of people to fill it up .. just how far DO you have to walk into the sea at Holkham in order to be in up to your neck ? LOL must be half way to Dogger Bank .....
Just adding my 2 pence here. I was told by my GP they could not prescribe T3 so was sent to Hospital Endo. They prescribed but constantly tried to reduce dose based on low TSH which had been low for 20 years. I went through 4 consultants. One was the head and prescribed properly on symptoms and blood results, however he was forced to leave and it was the following 3 that became the problem. I refused to follow their demands and went to a private Endo who agreed with the dose the first Endo had put me on. Then the hospital asked for a “higher opinion” from a London Hospital and he too agreed with the dose.
He also agreed to treat me providing I got funding from local CCG now ICB for the T3. I then went to my MP to ask him to help me ask them for the funding. He wrote to them and shared my data with the local hospital head pharmacist without my permission. So I took out a formal complaint against the CCG and the Pharmacist who was advising the CCG not to prescribe T3. My complaint was upheld and almost immediately I got the funding and my GP agreed to prescribe the T3 so I don’t have to go back to the local hospital. My care is overseen by the London Consultant.
So 1. Join a London GP.
2. Ask them to prescribe and if they won’t find out the reason why. If it’s they are not allowed due to cost then ask to be referred to local Hospital Endo.
3. Once prescribed from Hospital, apply to local ICB for funding and if they reject you go to your MP for help.
4. Once you have funding return to GP and set up prescribing.
It is so very complicated and (to be honest) frustrating that NHS patients have to navigate all this - can you not simply continue to self fund the t3 through private prescription? Is t3 expensive? I might be in the same situation in the coming weeks myself.
I called the GP surgery near me who are prescribing T3 for 1 patient (as shown on the Open Prescribing graph) to ask about their willingness to prescribe T3 before registering. The receptionist told me to email my query. I wanted to ask you guys – would it be a mistake to ask about this before registering? I'm wondering if it would make them reluctant to accept me as a patient...? I'm assuming prescribing T3 will cost them a lot under a shared care agreement so I don't expect them to be cooperative... thanks in advance!
The person getting T3 might have a very different medical background.
And I think doctors like to start out with patients asking for help - rather than telling them how to help.
Cost of, say, a single liothyronine capsule each day is not out of line with many other medicines. But if someone remembers £250 or more, as it was, they might react without checking.
Be in the position of having cost details on a piece of paper in a face to face with the GP. If they are wrong, you can explain why and what current prices are.
Thanks, this is really helpful. I guess I have to just take the plunge and register. I've just had such bad experiences with London GPs gaslighting me that I'm scared it'll be the same all over again.
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i don't actually know an awful lot about what's going on in any other areas . 
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