Thyroid eye disease

[fannyfan]

I've got Graves' disease very newly diagnosed. I feel very shit about it if I'm honest. Went for an eye test today and she's referred me to ophthalmology because my eyes are starting to affected by my Graves' disease

I had noticed a really weird thing where I have less lid space on which to put eye shadow but it didn't feel real like maybe I was making it up? But no! It's real, my eyes are literally popping out of my head.

I asked her how long it might be before I see a dr. She said it depended on the wait list, so I rang the appointments people and the waiting list is 14 months long. I've done some research and if you don't have early intervention my eyes will continue to literally push out of my face, and I'll have to have surgery to remove some bone around my eye sockets to fit them back into my face better.

I can't do this. It's awful and so painful. I'm not whinging about the nhs because I work for it and it's hideous at the moment but when it's actually you that's been affected it's so hard. I need my thyroid definitively treated but it's not possible to do the radioactive iodine because of my fucking eyes as it might get worse, so I'm on the list to have it removed but that's not til July next year.

Has anyone had this? Did it stop getting worse?

I was diagnosed with TED ten years ago but it hasn’t progressed at all. I wouldn’t know I had it. I think the prognosis you’ve described is very extreme.

Have you been on thyroidUK?

https://healthunlocked.com/thyroiduk/posts

https://healthunlocked.com/thyroiduk/posts

And this support group have a helpline:

https://tedct.org.uk/support-advice/helpline/

@Thomasjam thank you.

@SparklingLime no they are really bad. The left one is so far forward my eye lids can't close over it properly. It's so painful

I’m sorry, @fannyfan, I didn’t realise that you were in pain now. That’s awful. Definitely post your situation on the thyroid uk forum. There are lots of ‘expert patients’ on there. There are sections for Graves and for TED.

I know you shouldn’t have to, but is there any chance you could afford an initial consultation with a specialist ophthalmologist privately? That can get you in the system faster.

And definitely talk to TEDct.

Try not to worry to much, if you have an overactive thyroid it may possibly just be the pressure from being overactive when I got admitted to hospital because of my thyroid both eyes were bulging like heck the staff were amazed that I could sleep, got the tests done by the eye hospital to find I did not have thyroid eye disease which really shocked me and when I spoke to the Endo about it he said it was the pressure because I was so overactive when I got started on meds and my levels went down so did the bulging.