Me again! I just want to ask a question about why my GP surgery aren’t giving me T3 on the NHS.
I saw a consultant endocrinologist privately as my husband had BUPA with his job. He retired at the end of March and we lost our cover so I had to pay for my final consultation when I was prescribed T3. After three months in T3 my GP said we’ll give it to you on the NHS now and we can ask your consultants advice if we need it. I was so happy it was put in my repeat prescriptions - what a relief. Two weeks later the practice pharmacist phoned me to say my GP shouldn’t have told me this and sorry but you can’t have T3 on the NHS. I asked why and she said she thought it was because I had a private prescription and maybe they can refer me to the same endo on the NHS but it will take months.
My question is, he is an NHS consultant but has a private practice in a private hospital. Just because I saw him privately he’s not a quack dr but a practising NHS consultant so why use this stupid excuse not to let me have T3 on the NHS? The NHS also use this private hospital which makes it even more unacceptable.
The pharmacist who gave me the bad news said ask if he can maybe give you an NHS prescription but this isn’t a guarantee that we can provide it on the NHS. What kind of farce is the NHS putting us through to get a medication which we genuinely need, prescribed but an NHS consultant but horror of horrors in his private practice. I’m so sick of this problem and will have to pay for another 3 months of T3 in a week. Any comments would be greatly appreciated, I have read the August 2023 report stating T3 from private clinics won’t be paid for but what if he’s also an NHS consultant?
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Essexlil
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There is a protocol, not often adhered to, that if a patient is ‘recommended’ or has an initial prescription via a private appointment, then subsequent prescriptions should be through the same route - not through NHS
Surprised that the pharmacist has picked up on this though - and not the GP. The T3 would come from the Practice Budget.
The fact that he’s an NHS consultant whom you saw privately is not relevant I’m afraid
So I’ve got to see him over again on NHS mad really wasting his time when I’ve already seen him but may be the only way! Just very unreasonable like most things nowadays!
The irony is that you may have to wait a long time to see him as NHS consultant.
To be honest, this protocol isn’t very often followed. I saw Endo privately and my GP prescribed the T3 without a murmur.
Have you discussed this with your GP? It sounds as though the pharmacist is being a bit pedantic. After all she’s there to dispense prescriptions, not comment on them 😉
Hope you get sorted.
Edit
Oh. I’ve only just noticed that this was the Practice Pharmacist. This will have been picked up because of cost of T3. Part of their remit is to keep drug budget healthy. That said, they usually only intervene when there’s a cheaper alternative and, of course, there isn’t. I really think you need to discuss this with your GP. The Practice (Clinical) Pharmacists work with GPs. They’re not supposed to override them. It’s also possible that the CP isn’t fully aware of the current NICE guidelines regarding prescribing T3. It’s probably something they don’t come across often
There are two issues here she could be referring to.
Please make an appt to talk this over with your GP and let us know how you get on.
When I saw an ent consultant privately he suggested follow up treatment and there and then popped me onto his NHS list at the local hospital.Maybe the consultant would be willing to do this for you so you don't need to wait to see them again.
Yes I’m going to ask on Monday. I can’t believe what we’re being put through to get our medication but maybe he’ll be able to help. Thank you for 6pm reply.
Nope. My one didn't. I was seen 3 weeks after my initial private appointment by his NHS colleague who was on duty in my local hospital for the follow up.
If truth be told it made me feel a bit of a queue jumper because in the end I didn't have to do the long wait just for the initial NHS appt and I ended up with NHS treatment so much quicker.
I don’t know. All I can tell you is when my surgery first new it had been prescribed the pharmacist there said “how novel,” and told me they don’t prescribe it. I will try to attach a screenshot from the paper I was referred to.
Hi , that's not an absolute exclusion of any T3 prescribing for wales Waystar.. it's pretty much the same limitation as is in place all over the country.
ie: T3 not to be routinely prescribed ,may be initiated by NHS endo under certain circumstances.. (significant residual hypothyroid symptoms , other potential causes ruled out first ) ... then 3 mth trial is possible ... realistically it's always dependent on getting referred to an NHS endo who is even prepared to use T3 .. some are, some definitely aren't .. every NHS endo in uk is limited by more or less the same wording as that document. it doesn't prevent T3 prescribing IF an endo wants to.
One of my local GPs made a stupid comment to me and I told him he was wrong. It's ridiculous. Thank goodness we have a website and we can ask and get a response to our query.
My gp told me to go private with a Dr who does NHS as well and they would honer the script and give me t3 dosnt sound like that will happen after reading this .I saw an NHS Dr who wanted to see my results on levo only before adding t3 that was February I did what he asked t4 was going high t3 low but no did I get it not a chance they just cut my levo down. So I've just added t3 back in it's so bloody unfair isn't they just don't want to prescribe it
Hi, yes as the August 2023 guidelines state it must be prescribed by an NHS Consultant Endocrinologist surely when he’s at the private hospital (where the NHS send loads of NHS patients) he’s still qualified in their eyes to prescribe the T3 he’s still the same consultant with his private hat on. It’s proved by other GP surgeries agreeing to prescribe on that basis. I think my GP was right and the Practice Pharmacist was being very unhelpful to a sick patient and the nerve of calling a GP wrong and over ruling her
It'd so wrong we have to fight just to be well or pay stupid amounts of garrentee how long we can sorce our own t3 this has been an ongoing battle for years and it never seems to change
That’s my worry, tsh bottom of range, t4 at top but t3 low but in range , and their solution will be to just decrease my dose. The saying Can’t argue with Stupid comes to mind but these are supposed to be professionals.
So again - CCG overruling hospital? Are you allowed to take a prescription across a county line?
I ask this because sometimes when my children are ill I have taken them to see a GP in another county. And routinely shop around pharmacies to get a good price when I have a private prescription. But don’t know how the system works re: CCGs cutting drugs to cut costs.
Hi, I’m not sure maybe I can take my private prescription anywhere but I’m still having a go at asking endo to give me an NHS prescription - I’m phoning this morning.
I've just had this. Practice will do TT3 but not FT3. I waited 15m for an endocrinologist appointment and even the consultant wd only do TT3, which came back practically the bottom of normal range. He did raise my T4 dosage but I am getting a private test done, if only for my own sanity. I'm not an endocrinologist (can't say I had a lot of faith in the last guy tbh) but I'm only looking to cross things off.
It is down to money on a NHS prescription I am afraid to say. All of us with thyroid issues, get free prescriptions, but the greedy pharmaceutical companies charge the NHS over £9 per tablet for T3, instead of a few pence like the T4. Sadly they put money before quality of life.
I was given mine on a private prescription, similar to yours. I had it for several years, before my GP told me I would have to get consent by a NHS endo. The appointment did not go well, I walked out after being told that the medication did not work and the money could be spent on a more worthy cause! So I reported her, she denied it, but thankfully I am still on the medication, albeit a lower dose.
The consultants will tell you it doesn't work and it will affect the heart, all BS of course. I could go on about the stories I have heard.
The last I was told it was £9.22 a tablet for the Lithyronine, so I can only go on the information I was told at the time. Whether that is changed I don't know. But it is still very difficult to get regardless.
Yes I think your right and because they don’t bargain properly and sort out what they pay, knowing T3’s a few euros a box in Greece, we’re the ones left to suffer
Really so glad to hear it. Brain fog / neurological effects of thyroid problems are so hard to explain because how do you describe fog to someone who thinks you might be making it up. But once it’s gone, the light comes back in and life starts again.
Yes, I can vouch for that. It is false economy, but sadly for us they put money over quality of life. I was told by my private endo at the time, that a Dr was writing private prescriptions for people without thyroid issues so they could lose weight and it had caused them health issues, a bit like the diabetic drug that is all over the news now. He got struck off because of it and hence why it is difficult to get, for those who really need it. Nothing surprises me. I have no faith in the NHS anymore. Whether the story is true I don't know, but it would not shock me if it were true.
Hi, I’ve lost faith in our whole country too not just NHS everything’s in crisis! My endos secretary really couldn’t care less that I’ll run out of T3 before he’s back off holiday and apparently there’s nobody who can help! He’s back on Monday and she said hopefully he’ll be in a position to decide in Tuesday but he may need to see you - oh well that would be another week without T3 - would they do that to a diabetic who needs insulin!
That is typical of some secretaries, but then they are not medically trained! I had a similar argument about diabetics before and since my troubles started, I have become diabetic in the last few years, in and out of remission. I was born without a thyroid gland, so it is a bit like being a type 1 diabetic, as I make no thyroid hormones like a type 1 doesn't make insulin. Whatever the condition, we should be treated with respect and concern, they do not walk in our shoes. But then I have always said, if I got a penny every time the word "thyroid" was mentioned, I would be a rich woman! GP's in particular are not good with thyroid issues. For the first 32 years of my life I had no problems with any of the conditions associated with thyroid issues, except a tummy, which they used to call "pot belly" when I was a child, took my pills no problem, no weight problems either. The only way, I could get rid of the belly was by surgery, which won't happen. Then when I got to 32, I unfortunately also had a new GP, who knew nothing and my life changed forever. Still battling now and have gained a lot of weight that is hard to lose, even on a low carb regime. Now diabetic too, although I am heading towards remission. Just feel for everyone that is new to this and long term problems - The people who are supposed to support us, don't walk in our shoes and haven't got a clue, except what is in an outdated text book and so called research that has nothing to do with our condition!
Hi, no I’m afraid not he’s on holiday until next week, when I’ll have completely run out of T3 so even if I get a private prescription I’ve then got to wait until pharmacy get it in for me
I was being prescribed t3 by nhs endo and nhs decided to put it on too expensive list so I had to source it elsewhere. I still see nhs endo, who monitors my results, has never suggested being able to prescribe it again?
He won't either unfortunately, merely down to cost. I think I was only allowed to stay on half the dose, as I made an official complaint about the conduct of the Endo I saw. Since then, I have been told that particular and hospital will not see patients as T3 referrals. I have thought about sourcing it myself, but no way could I afford it and shouldn't have to for a chronic condition. I hope your luck will change.
I have encountered the same problem and I also have to pay for my prescription and T3. I am trying to arrange an appointment with my GP (That will take some time!) and I will ask them to pay for my T3 as it is very expensive, it takes a large chunk of my pension. I'll check back once I've had my appointment and let you know how I get on. xx
Hi Angela, thank you I’d be very interested to hear how you get on. My GP put it in my repeat prescription but the practice pharmacist overruled her and took it off. 🤬I’m in Essex but a family member in Suffolk saw the same private consultant at the same hospital as me and her GP has given it to her on NHS for about 18 months now - so very unfair
I’d make a big fuss. I am on t3 but when it went so expensive a few years back I had to halve my dose and now have to see an nhs endocrinologist every year! You can’t recover from an under active thyroid so this just wastes an appointment someone else may need. I’ve been on it for nearly 20 years. My body can’t convert t4 into t3 without it so I will just die if I don’t have it
As we have the hardest medical diagnosis in the world to be diagnosed with a thyroid problem, it just gets crazy when they then try and not actually medicate you. It put such a strain on my heart when my t4 was just put up and up and such a relief when my doctor (not the specialist) realised I couldn’t convert without t3. So go back to the doctors and make a fuss. They can’t refuse medication to keep you alive.
Hi, thank you mumstw, I’m speaking to my GP tomorrow, she added it to my repeat prescription after my blood test on 7th Sept (T3 had increased to 5 from 3.9 in just 9 weeks on T3). The practice pharmacist overruled her and told me I can’t have it. They’ve now put me in the position where I can’t even get my private prescription and pay a fortune as I’ve just found out today my endo is on holiday until next week so my body is going to be messed up because I’ll run out of T3 before then
Hi, seen this guidance some time ago hope it’s relevant to you.
“in line with BTA guidance, endocrinologist providing NHS services may recommend T3, liothyronine for individual patients after a careful trial of at least three months”.
When first diagnosed as hypothyroid I was given levothyroxine (T4) but it caused awful palpitations.
Due to severe palpitations on T4 the Cardiologist at the local hospital had to record them during the night to try to find out was causing palpitations.
After several overnight recordings I was then prescribed T3 and am still taking it today. I take one dose early a.m. and wait an hour before I eat. I have no symptoms and feel health is 'normal'.
I follow the advice of Dr John Lowe who was also an Adviser to Thyroiduk before his death due to an accident. He was also a scientist. He took liothyronine (T3) himself.
If there's a change in the fillers/binders in the tablet that could affect me negatively.
I hope you are successful in getting or trialing what might resolve your symptoms.
The cost of T3 etc has been reduced in UK so, hopefully it will be easier to get a prescription.
It is national guidance that T3 has to be initiated by an NHS endo and then prescribing can be transferred to the GP. Shockingly, some areas are still refusing to follow national guidance though.
If it's any help I watched a BTA/BTF training webinar for GPs this week (I'm not a dr! But patients were allowed to watch)
The 2 speakers were endos Prof Simon Pearce and Dr Nicola Zammit - both involved in writing the recent BTA/SfE T3 consensus statement.
The main speakers Dr Nicola Zammit and Prof Pearce said if a patient is well on T3 after being prescribed it by a private endo, then it makes no sense to remove it, as 'first do no harm'.
Though they did say TSH shouldn't really be suppressed.
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