Admins - hope this is allowed ? ITT Improve Thyroid Treatment has a short survey to use nationally with other thyroid charities/ groups trying to end the postcode lottery. It will remain anonymous, only referencing the CCG, date, what was said about why you could not access T3, and who told you.
Please include the date/ which CCG you're in (or area you are in if unsure of CCG)/ what you were told/ who said it to you (no doctors' names, only role)
In the past 12 months or so have you been told any of these things?...
You're being de-prescribed T3
You cannot be prescribed T3 despite endo saying you need it
You've been told you should go private to get T3
You've been told it's not CCG policy to prescribe
You've been advised to go abroad to get your T3.
Thank you so much for your help!
Written by
TaraJR
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I asked endo to go on T3 last year (I think late spring/early summer but would have to confirm exact dates.)
Was advised by endo initially they would ‘support’ me with blood tests etc but I would have to buy my own off the internet.
I found a lovely local pharmacy who would source various T3/NDT options. Returned to endo to ask for a prescription to be told ‘NHS endos aren’t allowed to write private prescriptions and anyway I (the endo) don’t agree with T3 so you have to source your own’. When I asked how I was told; ‘ just Google it and get it from abroad or ask one of those forums or you might be able to persuade a private endo’.
Needless to say I asked for recommendations (private message) on here, sourced a private endo and haven’t looked back….
I think that covers:
Can’t prescribe, won’t prescribe, against CCG policy, go abroad and go private….
It would be interesting to see what you find out re different prescription patterns.
Thank you so much for your information, but I'm sorry to read how you've had to deal with this national mess. I've shared (anonymous) details from this quick straw poll with the group who're working with members of the House of Lords, NHSE and DHSC. We really hope that showing this is still going on will make them find a proper solution quickly. I'll update when we hear better news.
I live in Greater Manchester and was told by my gp that they could not persribe T3.Had a health check with the pharmacist and he was very helpful. He said they can persribe it, you have to see an endo and they give you a three month trial and if it works well you can stay on it.
He has wrote to my gp to see an endo, just waiting for and appointment. I've had confirmation that the gp has requested the appointment. Fingers crossed now.
Anyone having problems with gp try seeing your pharmacist.
Last year I saw Dr B the Speciality Lead of Endocrine and Diabetes at Royal Cornwall Hospital, Kernow CCG.
Dr B heads and runs the Thyroid and Metabolic Disease service.
He prescribes T3 to his private patients.
I was an NHS referral
1. He stated that it was impossible to prescribe T3 due to cost.
2. Testing FT3 is not done as it’s a waste of time due to the short life of T3.
3. No real need to consider testing more than TSH ever unless a pituitary disease has previously been diagnosed. In this case T4 will be tested.
4. MMH results are not to be trusted as they are “paid for”
5. As long as TSH is in range then a patient is either not in need of
Levothyroxine or they are .
4. We do not need fT3 in our bodies at all and fT4 is of little importance.
I showed him some MMH results which were the reason my GP referred me TSH in range both fT4 and fT3 well below reference range. He pointed out that only meant MMH were unreliable and results could not be trusted . Apart from my not need any fT3 and little fT4.
MMH results are not to be trusted as they are “paid for”
MMH is run by the NHS. Why would they be less reliable than an NHS endo or GP? It makes no sense to me, and it sounds like your endo was clutching at straws.
pretty sure MMH are done at Exeter NHS lab .. the same lab that does Exeter GP 's thyroid blood tests ... Not 100% certain , but i think so .
LOL ..... if they are 'not to be trusted' , can we tell all the Exeter patients to tell their GP's to go take a running jump when they want to adjust dose based on TSH ?
Bizarrely he sent other tests for me to the same lab. I was so tempted to tell him. However opted to maintain a dignified silence and ignore him. I did initially tell him it was Exeter however it’s the fact I paid makes it dodgy humanbean and tattybogle .
Recently de-prescribed T3 after 10+ years. Newish ( I think) GP didn't understand blood test results, wouldn't listen to my explanation, consulted local endo. Endo said I should be on T4 only, based on national and local policies and guidelines, didn't recommend continuing on T3, wouldn't see me in person to discuss. GP flatly denied it was due to cost. (Strong whiff of BS at this point). Offered Levo, I declined, back to buying T3 myself. Yes, I know I should fight this, but I can't, I don't have the strength or inclination, due to another major health condition.
Tara, it's a London Trust. I don't want to 'out myself' by saying which one.
Thanks for the offer of template letters, not being rude but don't need help with writing letters. As I said before, I have another far more major health issue which takes precedence.
I have a letter from my GP which refers to "national and [name of my local NHS Trust] Policies & Guidelines". I thought the national bit was a big fat lie and you've just confirmed I'm right! However, since I've switched back to the T3 that I buy myself, I am convinced it's better for me, so maybe they've done me a favour.
She said she wasn't allowed to test for T3 and that she couldn't even test for T4 anymore except for children. She said I couldn't be referred to an endocrinologist unless my TSH result was wildly out of range.
She said the NHS 'has decided T3 doesn't work' and so the only way I would get it would be to go private.
She said there are many things she can no longer do because of NHS rationalisations and that after her many years of working this makes her job very frustrating. She wasn't unsympathetic and at least she didn't make me feel like I was crazy for asking for T3 - unlike other doctors I have spoken to in the practice.
I saw Dr D at Truro hospital. I wasn’t even going for T3. I asked whether she thought it was worth me doing the D103 gene test privately to see if I’m converting. She said what gene test? Like she didn’t know, and said it wasn’t recommended by Thyroid UK, when it is. She then said converting what? What do you mean? I explained T4 to T3 conversion. It was like I was speaking to a child. She appeared to have no clue or was playing dumb.
She said “is that what you’ve come for today then, to try and get T3?!” I said no actually, but am fairly sure I’d have been refused it if I’d have dared to ask. I didn’t dare ask her. Spoken to in such a way that I closed the door and broke down.
She was on Thyroid UKs list of Endos but apparently isn’t anymore!
October 2021. Northamptonshire. Endo asked GPs to prescribe T3 which they did for one month but then cancelled my prescription because of the cost. I actually did speak to the GPs surgery and they said this medication is too expensive and we do not want it on our budget.
Hi, tattybogle has just flagged this up to me.I have been refused T3 by GP ( Merseyside area) every 6 months for the almost 3 years despite the Endocrinologist asking them to prescribe it.
Endo originally asked me to obtain my own T3 on the internet as he couldn't prescribe based on cost grounds. I have been doing this for almost 3 years now and he has monitored me.
I am well, stable and can lead a normal life on a very small amount of T3 (12.5mcg) daily.
But I cannot get through the bureaucracy of the NHS to actually get it prescribed.
Have you given them all the national guidance on T3? It all says you can be prescribed T3 if symptoms persist on T4.If you're on Facebook, join ITT Improve Thyroid Treatment. We have template letters to send to Drs, CCG, MP, Healthwatch etc detailing all the national guidance on T3, that should be followed as best practice.
Many thanks! I'll reply to that. What an unholy mess it all is. But there are very hopeful signs that things will change.. lots being done by patient groups. And their major new report being published imminently should make a difference.
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