My GP referred me to my local NHS hospital Endocrinologist, specifically for them to see if they would find it necessary to prescribe me T3 (Liothyronine)
I have been self funding and self medicating with it for about 5 years and it has made me well (so I know I need it- so dues the gp.. hence the referral!)
I went into the appointment with the Endo at the hospital ready for a fight, but as soon as I sat down he told me it’s clear from all my blood work and paperwork over the years, that I def need it and prescribed it on the spot to take downstairs to the hospital pharmacy to dispense.
They told me they didn’t have it in stock and gave me an IOU to come back for it in a few days. That was on the 3rd May.
I called the pharmacy a week later and they told me that it has gone to an NHS board to be approved.
I told them that the consultant had approved it and that was enough, why has it gone to be approved? (Is that true?!)
In the meantime the consultant has written to my GP and told them to prescribe it from now on and I should be discharged back to them with a repeat prescription but he would see me again in November.
My in house pharmacist from my GP surgery called and said that they will not prescribe it from the surgery as it needs to be dispensed from the hospital for three months first as it is a controlled RED list drug .
Does anyone know where I stand on this please? I feel like I’m being pushed from pillar to post and no one wants to take responsibility for me!! Please help 🙏🏼
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AuntieMandy
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It's my understanding that the initial prescription is from the endo, for a "trial" of 3 or 6 months and if the endo decides the patient benefits and should continue then the GP surgery takes over prescribing at that point.
I think each CCG has their own "rulings" on T3 and whether or not it is a red list drug. Possibly SlowDragon has more information so it may be helpful if you say which CCG you come under.
My experience was that the endo agreed I needed it but had to clear it with the ‘board’. If agreed he would prescribe it until optimal and then it would be passed back to gp. I questioned the being passed back to gp but was informed that they have to prescribe if asked.
I am surprised that it wasn’t approved prior to you receiving the original prescription. I think now it’s over a couple of weeks I’d email the endo and explain that you still haven’t been able to get it filled and could they help.
Hi there, I was under the impression from reading everyone’s posts here ice the last 4 years that if the endo prescribed it, it was a done deal. I was shocked! The endos secretary has been amazing and even phoned my surgery directly, but they are still being difficult. He is on leave until next week, so I think will try to step in again then.
I am glad that the secretary is trying to assist, at least. Tbh I just asked for it when I went not thinking I’d get it. The endo then explained to me how he had to get it approved so I was prepared for the delay and thought it wouldn’t happen anyway. I had already self sourced by then as a) they never give you enough in my experience of anything and b) I refuse to add doctors and their opinions to my list of stresses anymore.
I hope you manage to get hold of your prescription. This is all just another way to try and maintain superiority. It’s so controlling. I do feel for you. It certainly can be an emotional roller coaster with the nhs. Good luck with it x.
Would it be easier for you if you changed surgeries? Some doctors if in charge think they can do as they want and ignore what an Endocrinologist advises. I think I'd complain to your local MP.
it contains a link to this new report on the T3 Prescribing Survey ... perhaps if you look up your CCG on it , you might find out what their local policy, is which may be some help in finding out what you are up against in your area:
Thank you so so much. The links are amazing and super helpful. It says that’s my CCG is NHS North Central London and won’t prescribe to new patients. How LUDICROUS! I will fight it all the way and def report on the link you kindly sent.
I’m so grateful to you for taking all the time to reply with all the links and info. It really means so much 🙏🏼
Hi. I've just googled and found this. They do not say T3 is red listed. So I am confused! North London seem to have a joint formulary. It was a consultant can give you a trial, then transfer to a GP if trial was successful.
Auntie Mandy it has to be prescribed by an NHS endo for 3 to 6 months with monitoring and blood work done by the endo at the hospital. Only after that should the GP be told that you are on a stable dose and told by the endo to continue to prescribe.As you mention health board I presume you are in Scotland. If so then after the 'trial period' the GP should follow the endo's advice to the letter and continue to prescribe. It works like this in NHS Grampian following the Scottish protocol.
Now before you all on here start moving to Scotland - it is still not easy to find an endo who understands and is willing to prescribe.
Thank you so much for taking the time to reply. I’m actually in NW London. My surgery did say that I will need to be on for 3 months before they will prescribe, but my gp knows that I’ve already been taking it for years, so why prolong the inevitable?! It’s just ridiculous. Thanks for the help. I really appreciate it 🙏🏼
Oh honestly, this is ridiculous! Join ITT_Campaign on Facebook. They are looking for patients with stories like this (anonymous) to feed back to the powers that be, showing how patients are being (not) treated.
Have a look at the guidance from the RMOC on liothyronine here:
This explains that liothyronine can be prescribed on a trial basis in Secondary care. You were on it successfully for years and at the review with an NHS Endocrinologist he has give his full support for you to remain on it. He has the final say by the way. Technically CCGs oversee budgetary decisions, but as they are not experts on you, they'd be hard pressed to deny you your T3 with the full support of an Endo, particularly as you have been on it successfully for so long.
The BTA put out a statement saying that any patient who has unequivocally benefited from liothyronine should not be taken off it without the oversight of an Endocrinologist and then to safely reduce it:
NHS England and NICE allows for the prescribing of liothyronine, so it should not be red listed. It should be amber meaning that it is only to be prescribed by a specialist in Secondary Care. As mentioned above, the Specialist would usually offer a 3 month prescription and then the GP agrees to take over the prescribing under a Shared Care arrangement where the specialist oversees the prescribing and the GP fulfils the prescription based on the Endo's advice.
This mirrors what I had been told by my GP: 1) Liothyronine is amber list 2) it needs a shared care agreement for a GP to prescribe it and 3) You need to be stable for 3 months before a GP can prescribe it.... I've not got that far, I'm still under the Endo's care. I am not aware of it having gone to the NHS board in my case. Once my endo agreed to prescribe it I had it in my had within a few weeks.
The trouble is - each CCG and Health Board makes up its own rules on T3, despite there being national guidance out there to follow. In my opinion many of them try everything they can so that it is NOT prescribed, as they still think it's an extortionate price. It's now over 75% less than it was at its height. £258 down to £63.Still too much, but it shouldn't be classed as a high cost drug now.
I thought that what would happen to me soon. I could have flown to the moon when the Endo put the prescription into my hand I was so gassed. Didn’t realise it would be such an utter nightmare. Thanks for the info though. It’s really help and very much appreciated.
Hi SD, thanks so much for your reply. My CCG is NHS North Central London I think. (London borough of Barnet NW London)
I’ve never been prescribed it through the hospital before. It’s always been sought out and funded by myself over the last 5 years. (Even though the gp knows I am on it!)
Thank you for all the advice, help and tone you give us all. It’s SO appreciated x🙏🏼
So sorry you are going through this. I had to go through the same wretched process when they changed the regulations on meds with liothyronine in them . So yes your nhs endo does need to prescribe it for 3-6 months. He needs to sort the hospital pharmacy out. I also self funded but had to move GP surgery to one willing to prescribe even though that practise said they could see it was the best meds for me their policy was not to prescribe it! I'm on Armour, ndt. This is a bit different as Armour being prescribed even if endo recommends is done on a "named patient basis" ...the GP does not have to agree to this and sadly can refuse. However it sounds like your practise will prescribe but only after your endo has prescribed it for the first few months. So hang in there you have not lost yet. I agree its all wrong. You have already done the hard work of finding the right thyroid meds for you so its a walk in the park for them......but you now have to be quietly firmly persistant.
I think you will have to wait for the endo to come back from his hol. In all likelihood he will prescribe it for 3 months required and then write to your GP again.
In the meantime it might be worth nosing around to see if there are any GP Surgeries around you who are ndt friendly (if thats what you take). I negotiated with the practise manager before switching surgeries. Get that lined up ready for the endo end of direct involvement. Just incase your current GP surgery still refuse.
Its all wrong and stupid I know....but financially worth it if you can pull it off.
Mmmm ...Given that all the national guidance allows for a subset of patients to be prescribed Liothyronine, I'd be taking my GP surgery to task big time if they refused. Oh wait! Mine did initially refuse. Some excuse about not having a shared care arrangement. After being challenged about it they have one now! GP surgeries have to follow national guidance and importantly not harm their patients!
Nooo- partly my fault as I didnt realise until afterwards that it is Liothyronine she is seeking not ndt. Very mean of the GP Surgery as it is under the endocrinologist guidance. They do seem to like creating more & more hoops to jump through....
Hmm ... mine prescribed levothyroxine because tests showed my TSH was below zero. Now she wants to know what my pregabalin dose is at the moment. I am no longer under her care and it seems she has reduced my prescription to 2 a day. My new GP prescribed one a day for two days, then increase by one every other day and keep doing this until I reach a certain point. After a delay in renewing that prescription I started from scratch again and am not up to what I was before. Will have to find out when my annual review is. She is also asking whether I am stable. I don't think she has even considered why I am taking it. These interfering, ignorant people are certainly not following the first rule of being a doctor - do no harm.
Thank you so much. That’s all really really great advice. I really appreciate it so much. I will def look into it if I can’t get anywhere. Thanks for taking the time to rely. It’s so appreciated 🙏🏼
No worries........dont give up.......its the long haul you are trying to achieve. Is it ndt you are on? Because if its liothyronine the synthectic T3 you shouldn't face the same issue.
You’re so right! But it is disheartening. I’m on T3 - Liothyronine. I’m not even asking for the unlicensed one without the fillers!! Thanks so much for the support.
It might be worth mentioning to your GP surgery that the cost has come down, and talk to GP in the first instance then to their pharmacist to organise a repeat prescriptions and number of months for the repeat prescription. Try the original GP that has referred you to see the Endo as they have referred you in the first place with the knowledge that endo needs to approve it and instruct them about it. That GP might be more understanding of your situation and agreed to start prescribing without the wait.
My endo wrote to my GP surgery suggesting a trial of 3 months and to continue if ok on it, advising they (endo) would review me in few months time. I was prescribed by my GP surgery from the start.
"GPs should only take on prescribing of liothyronine where the treatment is recommended by a consultant NHS Endocrinologist, after a successful trial has been carried out. "
They is helpful. Thank you so much. I have been on T3 successfully for 5 years myself, so I think that should be enough of a trial for my surgery to take responsibility. 😉The link was great and I’m so grateful for the help
I get Epoietin that has to come from the hospital. They send it to the surgery; the surgery puts it in their fridge and they ring me to collect it. You need to ring the hospital department and tell them the trouble you are having and hopefully, they will sort it out.
I'm so sorry to hear this. Just hang on until you can talk to the endo. Can you ring him or his secretary?
Next step is maybe contacting PALS, copying to Head of CCG and MP, with all the national guidance that should be being followed. ITT can give you that.
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