Report by The Patients Association including several pages on T3 scandal

[SlowDragon]

A damning report by The Patients Association into the ongoing refusal of many CCG's to follow National Guidelines on Liothyronine

The new barrier put up making referral to endocrinologist extremely difficult for consideration of possible Liothyronine treatment

patients-association.org.uk...

See pages 13 -16

"A high proportion of people who require Liothyronine are being forced to pay for it themselves (often from overseas, without all UK regulatory protections) are suffering harm and going without treatment entirely. The testimony below outlines the consequences this can have for people's wellbeing, from the needlessly irritating to the truely serious."

Only 156 patients told The Patients Association of their experiences

There must be many, many more on here, who could do so

For example

Anyone who has been refused a referral to an endocrinologist despite ongoing ill health on Levo only.

Anyone told by their endocrinologist that they would likely benefit from T3, but told by endocrinologist they will have to buy it themselves, often without even providing a private prescription

Anyone who has had NHS T3 stopped. (Over 7,000 patients according to recent report)

Anyone forced to see an endocrinologist privately in order to get treated

Perhaps, if this fits your description, you might wish to email your experiences to The Patients Association too

lynmynott LouiseRoberts

Have you seen this report, just published today

[MissGrace]

I will email. When I still felt hideously unwell on T4 and my GP said my tests were ‘nearly in normal range so you’re okay now’ (I looked and felt like cr*p), I asked to be referred to an endo. He said he didn’t refer for hypo, only hyper. (After all, any old bugger can treat hypos can’t they? Just get those figures in range - or nearly in range - job’s a good un!)

So I had to go private - which is an option not open to everyone and that makes me feel bad. 🤸🏿‍♀️🥛

[Had-enough in reply to MissGrace]

Ditto, my GP refused to even test T3, saying it wasn’t relevant. Kept upping my Levo whilst all the I felt so unwell with each increase, death would have been a welcome relief. I finally bit the bullet and went private; my T3 was on the floor. I began taking T3 with reduced Levo and it’s taken me over two years to feel a resemblance of normality. Although l can’t remember what being well feels like. The trouble is I may be retiring next year and do worry how I will be able to afford the appointments and T3 costs. I do feel very let down by the NHS.

[SlowDragon Administrator in reply to Had-enough]

Email Dionne at Thyroid Uk for list of recommended NHS thyroid specialists

[e-mail]

Getting positive DIO2 gene test can help persuade NHS to prescribe