Can the health board block the trial of T3 medication?

[Syd35]

Been given the runaround this week and am thoroughly fed up. After private endo and GP agreeing to a trial of T3, I have been told the health board have blocked it, apparently no new patients are being issued with T3. Is this true I thought that idea had been canned?

[SlowDragon Administrator]

If an NHS endocrinologist says you have clinical need you are entitled to 3 month trial. However it can still be extremely difficult or impossible depending on local CCG policy.

If you see an NHS endocrinologist privately or a private endocrinologist then NHS is not obliged to prescribe at all

Your endocrinologist can give you private prescription. This enables purchase online from Germany or France at around £25-£30 for 100 tablets 20mcg

If you find you do well on it then you can pursue getting NHS to prescribe, but many find it impossible at moment, largely due to cost issue

[jennylynch1 in reply to SlowDragon]

hi slow dragon, im having similar issues, got gp eventually to write a private perscription for 25mg daily for 4 months but she said I will have to go back to the endocronologist to get it again as the gp surgury will not monitor it as havent perscribed it. Ive bought it from toll pharmacy but trying to find it cheaper elsewhere. Please can you tell me tge contact details to get it from.abroad plesse? Going to send an email to my local MP about it. Its ridiculous. Thanks

[SlowDragon Administrator in reply to jennylynch1]

You have to be prescribed by NHS endocrinologist? Does your endo agree you need it? Are they NHS or private?

If NHS, they should provide via NHS prescription. Initially first three months under care of endo and being prescribed by endo. At end of three months care and prescription responsibility is passed to GP to oversee and monitor

If Private endo then they can write private prescription.

German T3 is Thybon Henning 20mcg - pm me if you want to know more

Sanofi is 25mcg - I think you can order via local pharmacy if they are helpful

[jennylynch1 in reply to SlowDragon]

I went to see him thru private medical insurance Axa, and he agreed to put me on t3. It has helped alot as has his advice to take high dose Vit D3. But he is also a NHS doctor too. But Axa will no longer support monitoring of condition so cannot see him under private. Could pay but don't want to as already paying for t3. Going to write a letter to my GP as why they will.not prescribe t3 as advised by endocrinologist, as surgery pharmacy said they do provide prescriptions of 20mg t3 for some patients.

sanofi is what I am taking, so I'll ask a few local pharmacies can they get it as currently paying £50 per 28 tablets is too expensive. Thanks for your help

[SlowDragon Administrator in reply to jennylynch1]

Here's some old links, might have some useful info

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Private prescription £1 a tablet

healthunlocked.com/thyroidu...

Recent questions in parliament

theyworkforyou.com/wrans/?i...

Also see Improve Thyroid Treatment campaign on Facebook for lots of helpful info and letter templates

[jennylynch1 in reply to SlowDragon]

that's great info thanks.

[RedApple Administrator]

Syd35, Assuming you're in England, there is some relevant info on the main TUK website thyroiduk.org/tuk/newspage.... You need to fight for the trial that your endo and GP have agreed to. Don't take no for an answer.

If you don't have the strength to fight for your right to the medication trial, then at least consider helping the T3 Campaign by contacting your MP. More info here thyroiduk.org/tuk/T3-Campai...

[Syd35 in reply to RedApple]

Thanks RedApple actually in Scotland not sure if the rules differ here?

[SlowDragon Administrator in reply to Syd35]

you might find this helpful then

scottishparliament.tv/meeti...

Take case up with your Scottish MP

[RedApple Administrator in reply to Syd35]

I'm not sure either Syd35. I know you have the same issues there as the rest of the UK, but not sure how you can overcome the situation. lorrainecleaver is someone who might be able to point you in the right direction. You could try messaging her healthunlocked.com/user/lor...