Thyroid Eye Disease- link to recent webinar from TEDct

[Buddy195]

This is a VIDEO LINK of a recent TEDct Webinar (July 2024) discussing:

Thyroid Eye Disease Treatment and Clinical Trials

Latest Advances in Thyroid Eye Disease Care

youtu.be/TwSVwLl-2UI(Not working as expected?)

[RedApple Administrator]

Thanks for posting this Buddy195

[Fruitandnutcase]

Thanks for posting the link Buddy195 I completely forgot I was wanting to watch that.

The thing that struck me most was that treatment for TED has to happen quickly and you need to be seen at a specialised clinic. I was fortunate that on Colin Dayan’s scale it only affected my reading, my TV watching and my hobbies and it sorted itself out but I worry about the state of the NHS and the chances of people a) being seen quickly and b) being seen by an expert in the field of TED

I think it would indicate that the eyes should be properly monitored right from the initial diagnosis, in my case, of Graves Disease.

[Buddy195 Administrator in reply to Fruitandnutcase]

I fully agree that prompt treatment and seeing a TED specialist ophthalmologist are both key. I am always grateful to TEDct for helping me locate a specialist in my area and providing ongoing support.

[SmallBlueThing in reply to Fruitandnutcase]

Thankfully, I have a new GP and got a referral at my first appointment. Diplopia was noticeable five years ago, and restricted eye movements three or more years before that. I think I have thyroid-associated orbitopathy, and get a diagnosis in a few weeks' time, after three appointments, blood test for myasthenia but not TRabs(#), a CT scan and supply of a temporary Fresnel prism. There's been quite a rapid deterioration in my sight over the past few months. Previous GP and a trainee offloaded onto opticians but Specsavers and Vision Express were clueless.

Wishing courage and hope to all those who have it worse than me.

# I'm hypothyroid with high anti-TPO antibodies. I asked my previous GP for a test of TRabs but was told GPs couldn't request. I think I was hypothyroid as a child until the sudden passing of my father, when I had an instantaneous (undiagnosed) hyper flare. I've had several other flares, most recently due to COVID-19. Can high TPOs and TRabs coexist?

[pennyannie]

If my understanding is correct - in the summing up No 4 - the TSH - R blockade seems to make a lot of sense as this appears to target the ( b---ers ) for the thyroid as well as the eyes - so rather like a BOGOF :

Let us hope all these treatment options are affordable and available on the NHS for the next generation.

Thanks Buddy :

[Buddy195 Administrator in reply to pennyannie]

🙏 I really hope that the newly developed treatments are available asap on the NHS.