CQC seeking views: treatment of invisible conditions

[TaraJR]

Care Quality Commission are seeking views on care given to people with invisible conditions.. I'm thinking a lot of people may like to send their views or experiences...?

cqc.org.uk/content/invisibl...

[shaws Administrator]

I think they may have a deluge, from the way some remain undiagnosed or even diagnosed but undermedicated.

[TaraJR in reply to shaws]

Yes, it could cause a deluge! But at least it's be another way to make our views known, as it's very hard to get anyone to listen at the moment.

[Learner1]

I live in the US, and gave been following this forum with interest.

From what I can make out, there's a vast problem with getting T3, liothryonine, in the UK. Seems like there's one approved official supplier and they chose to jack the price up to an astronomical level, similar to the Mylan EpiPen scandal in the US. (T3 is a cheap generic in the US and every other country.)

Naturally, your government wants to rein in healthcare costs and paying such a stupidly high amount for T3 is unpalatable.

So, rather than shop around with one of the many other companies making generic T3, they've increasingly made it mire difficult Doyle all of you to get it, by supply shortages, refusing to test for free T3 and reverse T3, which are the mist useful numbers to figure out if T4 is converting properly and if you need T3. and refusing to prescribe T3.

This is a travesty, with large numbers of you suffering needlessly. Rather than spending all your efforts fighting in the trenches with your doctors, you should be fighting at a national level to get an adequate, cheap supply of T3.

I've been on cheap generic T3 for over 4 years and it's made a major difference in my life, and my free T3 and free T4 numbers are far more useful in tweaking my dose than my TSH, which is useless

Good luck to all of you - you have a worthwhile and meaningful battle to fight. And there's ample medical research to support you that your government is studiously ignoring.