T3 Being withdrawn: So today I got the letter I... - Thyroid UK

Thyroid UK

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T3 Being withdrawn

KittyCooper profile image
17 Replies

So today I got the letter I have been dreading, after 10 months of being prescribed T3 by my GP (after a massive fight and seeing a private endo) they have decided to ‘review’ my prescription with a view to ‘changing’ me to Levothyroxine. They seem to have completely ignored the fact that I was on 150 mcg of thyroxine for 14 years feeling so ill I could barely function with a TSH of 33! To say I am upset and disappointed is an understatement! ☹️

17 Replies

Are you able to get a private prescription and get it elsewhere?

KittyCooper profile image
KittyCooper in reply to

In the past I did manage to get a private prescription from a private endo and sourced it from a German pharmacy (it’s far too expensive in the UK) but unfortunately the German pharmacy has changed ownership and now doesn’t prescribe it ☹️

in reply to KittyCooper

It’s absurd. I’ve got details of one that my endo gave me if you need it. German pharmacy online.

KittyCooper profile image
KittyCooper in reply to

Thank you, I have an appointment with my GP next week to ‘discuss’ it but we all know it’s just about money!

in reply to KittyCooper

Because someone allowed the price to go up 6000%. My argument is the cost of all the other medications, referrals, trials and benefits!

KittyCooper profile image
KittyCooper in reply to

Yes it’s absolutely ridiculous what our NHS let’s pharmaceutical companies get away with. My GP would obviously rather prescribe antidepressants 😞

in reply to KittyCooper

Coz they really do work !! My ar@e

in reply to KittyCooper

Where do you live?

KittyCooper profile image
KittyCooper in reply to

I live in Surrey, it’s even more annoying because it was the GP’s idea for me to see a private endo in the first place!

in reply to KittyCooper

Ah would have been good we were local could have met up I’m in Yorkshire

SeasideSusie profile image
SeasideSusieAdministrator in reply to KittyCooper

KittyCooper

ThyroidUK's article on where to obtain T3 with a prescription, near the end of the article

thyroiduk.org.uk/tuk/treatm...

SlowDragon profile image
SlowDragonAdministrator in reply to KittyCooper

There are other German suppliers for private prescription

thyroiduk.org.uk/tuk/treatm...

Current guidelines only allow NHS prescription of T3 if seen by NHS endocrinologist. HOWEVER guidelines also say you MUST be referred to NHS endocrinologist to over see withdrawal of T3.

england.nhs.uk/wp-content/u...

See page 19

Also

british-thyroid-association...

Get the list of recommended thyroid specialists from Thyroid UK. Some endocrinologist on there are NHS and recognise need for T3

Meanwhile get private prescription to cover the gap

And write to MP and Lord O'Shaughnessy

Marz profile image
Marz

There are 10 other posts similar to yours - are you on a PC - if so they are to the RIGHT of this page. On a phone or tablet - then scroll down and down to see the heading RELATED POSTS. There is a solution in the UK - and one of those posts may contain the information. Good Luck :-)

crimple profile image
crimple

Kitty, would you be willing to let Lyn Mynott have a copy of your letter about T3 withdrawal. See to the right of this "pinned Posts" Motion to regret House of Lords. We need as much evidence as possible for Lord Hunt. I have already sent Lyn a copy of my lettet in the fight to keep T3

TaraJR profile image
TaraJR

Please send your letter (personal details removed) to Lyn Mynott at Thyroid UK. She is collating these to give to Lord Hunt at another meeting at the Lords. Proof of what we keep saying - we are being made ill by CCGs de-prescribing of T3

endomad profile image
endomad

Fight it kitty. Mine was stopped by my ccg it took 10 months but it has been reinstated. I was given the impression that those who fight for it will get it, they know most will just accept it. It's bloomin hard work fighting the system but it can be done. My endo gave me private prescription for the 10 months that I filled in a french pharmacy.

penny profile image
penny

My GP stopped my T3 5 years’ ago but said that I could get it privately although I was not hypothyroid. My T3 at the time was 0.01!!

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