hi everyone happy new year. I wondered if anyone gets T3 on the NHS after exhausting every other Avenue first and then you consultant out you on t3 and then instructed you GP to follow. I am full thyroidectomy, also no working parathyroid. I finally feel amazing my consultant instructed my GP to continue but GP said sorry not allowed too. When I pointed out that my consultant said the CCG in my area does in fact prescribe and because he has trialled t4 all does and doesn’t work makes T4 to high with no t3 increase etc. anyone I had to email the document over to him cos he didn’t know what it said 🙈 he said he will look into it abs get back to me. He said other patients have asked for it and consultants have said no. I said well I’m not asking for it I need it after you instructed to continue, because i have low t3 otherwise and so am unwell. Lol he said I’m not an expert but my understanding is t4 converts to t3 and I said yes but I have no thyroid and my doesn’t, I have been under care for 8 months of a consultant testing ans trying all ways to make me better. Anyone I wanted to know if anyone has it’s prescribed on the NHS and if so what was you issues as to why they had too and if possible what area are you in so I can maybe compare CCG reports. My consulate said they are just being hard work and not following policy properly and are just saying NO. So I am currently having to pay for the t3 when I should not be. My bloods prove I need t3 as regardless of the levo dose t3 never changed and t4 was just too high.
Thanks everyone
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Thyroid36
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If your NHS endocrinologist says you have clinical need of T3 you should be prescribed
The initial 3-6 months trial via endocrinologist and hospital pharmacy. Then endocrinologist writes to GP to formally request they take over care and cost of prescription
I have looked at this openprescribing thing before but I had no idea that it could take me right into my own surgery’s prescribing history. Extremely enlightening. My surgery is in an area highlighted in another report as “fully” following the rules. However here it shows, as with all surgeries in the area, with the exception of ‘outliers’ (I have no idea what they are) there are NO prescriptions for T3! How can they be fully following the prescribing criteria but NO PRESCRIPTIONS AT ALL for T3?
Go to the page SlowDragon has highlighted. Work your way down the page, to where you can put in your GP practice name. If it’s a common name you might need a bit of trial and error if you don’t have their code number.
ah I have said all this to him as well, but he has zero knowledge what so ever he it’s adamant no one is allowed t3 anymore regardless lol. He seems to think no one is allowed to prescribe anymore 🙈 lol I was like well that’s not what the CCG report says honestly how is it I know more 😂🙈 thanks so much for all you advice you have helped me so much.
Thyroid 36, yes I get my t3 from my GP who also monitors me with 6 monthly blood tests. They were directed to do this by an NHS endo following a lengthy trial monitored by the endo team at NHS Grampian.
There is no point sending evidence to prove that Kent and medway do prescribe T3 to some patients ... The point is they cannot prescribe it to you unless you go via the authorised NHS route to get it.
There is only one authorise route which allows an NHS prescription of T3 . and that is:
~to see an endocrinologist on an NHS referral ( not privately ) and for them to do an initial NHS FUNDED prescription of T3 for the trial period ,
and if trial is successful , THEN they can request the GP to continue prescribing on NHS.
Paying an NHS Endocrinologist privately for a private prescription of T3 and then asking the GP to continue that prescription on the NHS is not the authorised route ... it is not allowed by any CCG anywhere ......and this is why they cannot take over the cost of your private prescription.
proving they do prescribe it to other people who have gone via the approved route will not help with your problem , you problem is that you need an NHS endo to prescribe is ON THE NHS ,for an NHS TRAIL.... BEFORE the Doctor can be asked to continue
Ah yes I know but my GP practice won’t budge on anything they are head strong no one is ever allowed t3 anymore. Fortunately I have private health care because I was left for 8yrs un medicated when my thyroid was removed June last year the surgeon was absolutely flabbergasted at the state of it how mangled and huge it was and couldn’t believe how I had just been left with Hashimotos and thyroiditus I had no choice but to go private because I could no longer swallow properly over the awlful symptoms. But a least now my surgery will know that you are allowed to prescribe it and will then be willing to refer me rather than it being a sterne all patients with or without a thyroid are now only allowed t4. So frustrating when I have months and months worth of trial data bloods showing that I need t3 it’s not a case of me just saying I don’t feel right I would like t3. My consultant would only give it if I needed it he said. Super stressful if I’ve not got issues with thyroid it’s parathyroid issues . GP’s are hard work every month I have an issue with my prescription as well! 😫😫😫. But hopefully now they will do the first steps 😊
is there any chance they could refer you to him since he does NHS work too ?
then perhaps the trial part could be just 'an academic exercise' of box ticking rather than actually having to do it all again .
IMPORTANT ......you still need to get hold of , and read very carefully , Kent Medway area's actual regional prescribing policy , to see if they do actually allow NEW NHS prescriptions .
Some areas are still being complete T**ts and (despite RMOC guidelines) are only allowing EXISTING NHS prescriptions to continue , and not allowing any NEW ones to start .
yeah I think that is a great idea and my endocrinologist would be more than happy with that too. Fingers crossed. You my GP didn’t even know I had my thyroid removed and when I had my bloods done was like oh levels are fine lol I had to ring them and say Urm hello no they are not ok I have no thyroid lol then were like omg so sorry, as your cases is quite complicated please can you contact you consultant and ask him how he wants to adjust your medicine. So it suited them them 😫 thanks so much for you bell fingers crossed I can get referred without any more issues.
Here’s the up to date Medway policy on liothyronine
They do allow T3 on shared care pathway
So seeing your endocrinologist on NHS…..should get you prescription via GP after 3 months trial via NHS endocrinologist prescribing via hospital pharmacy
I've found the shared care agreement for Medway, between endo and GP. It's rather OTT, making out T3 is a wonder drug to be treated with massive care, but it mentions care transferring to a GP in only 4 weeks!! We all know 4 weeks isn't long enough to be sure you're stable on a certain dose, but hey, we weren't asked to write the guidance! In another place they mention 3 months.
Oh wow really thank you so much as crazy as that is that will benefit me thankgoodness. Why is it not same for the whole of England and depends where you live. Thanks so much for this info it’s great! Thanks so much! 🙏☺️
You're welcome! The consortium of thyroid patient organisations has been fighting hard for years to get consistency and ease of access. We keep moving nearer, and then... And repeat! But we're still fighting hard.
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