NHS T3 funding better now?: I’ve been getting my... - Thyroid UK

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NHS T3 funding better now?

Frances0008 profile image
13 Replies

I’ve been getting my T3 through the NHS for the past few months now after years of having to get it on the black market. My NHS Endo seems to understand how to read results properly and was very curious to hear my journey and the struggle I’d had getting diagnosed and getting on T3. Have other people also found the NHS to be a lot more receptive recently? Is the issue with getting T3 over now? I’m in Calderdale region.

Thank you.

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Frances0008
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13 Replies
TiggerMe profile image
TiggerMeAmbassador

I, too have just managed to get T3 via the NHS, you would hope if more and more present with the need for T3 (even better the long term black marketeers) they are going to have to change their thinking and realize it isn't a 'made up girlie thing' 🤷‍♀️🙏

Delgor profile image
Delgor in reply toTiggerMe

Morning Eeeyore,

Just out of interest did your endo test you after you had eaten and taken your medication (ie 2-5 hours after)? If so, do you know what the result of your T3 was. Many thanks!

Please disregard as I'm putting up a separate post😁

Frances0008 profile image
Frances0008 in reply toDelgor

no. And that’s not the right way to do it. It must be exactly 12 hours after your last dose of T3. It’s very sensitive and I’ve found not being accurate with the timing has really messed with my results in the past. You’ll be very underdosed if that’s the way you test.

Delgor profile image
Delgor in reply toFrances0008

Thank you for replying Frances and yes I agree with you about being undermedicated if an endo tests after having food and meds but the reality is that this is happening. I'm not sure where leaving 12 hours exactly after taking T3 comes from as I was under the impression that it was 8-12 hours. I think I had better put up a separate post or I fear this one will be hijacked. Congratulations by the way on getting your T3 through the NHS😁

TiggerMe profile image
TiggerMeAmbassador in reply toDelgor

Hi, blood test 7.30am Monday, I'll let you know... I'll keep an eye out for your new post

Endo suggested timing is 2-4 hours after T3 😶

Delgor profile image
Delgor in reply toTiggerMe

Thanks Eeyore - much appreciated😁

SlowDragon profile image
SlowDragonAdministrator

Price NHS paying has dropped considerably now there’s more than one licensed brand

4-5 years ago NHS was paying £268 per 28 tablets 20mcg T3

Current prices paid here

healthunlocked.com/thyroidu...

Price continues to drop month on month

And increasing numbers of patients are getting prescribed

60,500 prescriptions per year in England in last year

Typically that’s 6 prescriptions per person per year

openprescribing.net/analyse...

Number prescribed is steadily increasing month on month

Some CCG areas remain worse than others

thyroiduk.org/the-2022-t3-p...

thyroiduk.org/wp-content/up...

Frances0008 profile image
Frances0008 in reply toSlowDragon

I’m having to get mine monthly, so 12 prescriptions a year.

Great that the number is increasing and I’m very thankful I’m now living somewhere it’s possible to get it. I’m not sure I’ll ever feel totally secure and safe getting it through NHS tho.

tattybogle profile image
tattybogle

No the T3 issue is not over yet ,, but its improving . and the price to the NHS has come down following the CMA investigation /fine. for price gouging.

Access is better in some CCG/ ICB regions than others ... not all of them are complying fully with the guidelines. some still have a complete 'no' to any 'new' patients, some are so restrictive as to make it virtually impossible when the local endo's don't like the idea of it , My region (Lancs and South Cumbria) reviewed their prescribing codes for T3 last summer and now do allow 'new' patients to have a trial of T3 if an NHs Endo say's it appropriate ... see the following links for more info on the different situations around the country :

thyroidtrust.org/t3-news-an...

(T3/Liothyronine access , News and resources ~ The Thyroid Trust)

thyroidtrust.org/uploads/3/... t3_prescribing_survey_final.pdf

healthunlocked.cot3-news-an...

knitwitty profile image
knitwitty

Liverpool CCG are still refusing to prescribe to new patients or even give a 3 month "trial" to patients , to fulfil GP's requirement for prescribing going forward. I was told at my Endo telephone appointment in December that new guidelines are being prepared by the BTA , so I really hope it's not a certain illustrious Professor writing them as he thought that the majority of people taking Levothyroxine did not need it and that there was absolutely no "proven "benefit to taking T3 . ( He spoke in a Thyroid Trust zoom presentation about 18 months ago).

Delighted to hear that these are some more enlightened CCG's out there , and that more people are fortunately finally getting what they need. :)

tattybogle profile image
tattybogle in reply toknitwitty

with him being the current president of the BTA . "new guidelines being prepared by the BTA' sounds a bit ominous ....

knitwitty profile image
knitwitty in reply totattybogle

My thoughts exactly !

arTistapple profile image
arTistapple in reply totattybogle

A bit? I would say a lot!

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