Anyone suffering from Graves eye disease

Me. I could have written your original post. You have to wait for your levels to stabilise before they will do the surgery. I waited around three years after total thyroidectomy before having eye surgery. Sorry to tell you the TED comes back. I am bitterly disappointed as no one told me that it could come back. I only had lower eyelid surgery. My GP said a few weeks ago, you could just go and get surgery again. Ah no. It’s the same antibodies that attack the thyroid that attack the soft tissue around the eye. As it is an autoimmune disease it can flair up again. I thought surgery was a permanent fix but no. Maybe you might get different advice? This is just my experience.

Thanks ladies, joined a group and managed to get a few names x

Roxybabe, I’m sorry to hear that you have Graves’ Disease. I have Hashimoto’s thyroiditis plus some other debilitating conditions. I belong to several Facebook groups for these conditions, and people often ask for recommendations for doctors and other medical specialists. I suggest that you search Facebook for an Australian Graves’ Disease group and ask for recommendations for an ophthalmologist. You will also be able to get some support from people that have a similar condition and hopefully not feel so alone.

EDIT: I found one Australian support group for you, but there could be others:

https://www.facebook.com/groups/gravessupportaustralia

Hi Roxy, I have Blepharitus which is inflammation a chronic condition which my eye specialist couldn’t help either. . From what I know Graves is an autoimmune condition and if you had a thyroid problem , I am assuming a thyroid surgeon looked after you and he/she should be know a a specialist who looks after that area too. Ask if an Endocronologist or Immune specialist can help you . Also your own GP should know .Hope you find the right doctor.

BUMP!

I’ve got the opposite problem, Hashimoto’s disease. Plus, I’m in Sydney.

Has anyone else got a tip?