5 months, 4 wks ago

Anyone suffering from Graves eye disease

I had a total thyrodectomy last year due to graves. Now my right eye is popping out. I went to see an opthamologist and he says can’t do anything until it becomes severe. Anyone in melbourne seeing a good opthamologist for TED?

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Replies

  • 5 months, 3 wks ago

    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.

    • 5 months, 3 wks ago

      Got an appointment for prof Justin O`DAY in melbourne. Let see what he has to see. Some doctors don`t seems to understand how TED actually effects our self confidence. Everytime I see my self I the mirror almost I can see my popped right eye and for them to just says it`s just cosmetic get over it is just bs. I hope O`day actually has some better advice for me. I heard selenium and flax seeds help with the inflammation. I started taking flax seed tabs let`s see if that does anything. Big hugs to all of you..

  • 5 months, 3 wks ago

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

  • 5 months, 3 wks ago

    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

  • 5 months, 3 wks ago

    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.

  • 5 months, 4 wks ago

    BUMP!

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

    Has anyone else got a tip?

    • 5 months, 4 wks ago

      I had no idea that thyroid problems were so common until I started having issues.

      • 5 months, 4 wks ago

        Oh yeah, SOOOOOOO common, especially in women. There are a few forumites with Hashimoto`s (not mentioning usernames), but I can`t think of anyone with Graves`. That`s not as common as Hashimoto`s.

      • 5 months, 4 wks ago

        Ya you are right. I thought I was finally getting my life back together after the thyrodectomy, but now it`s attacking my eye. Sometimes I just want to scream..

      • 5 months, 4 wks ago

        I thought a thyroidectomy would have prevented the progression? But, what do I know?

        It sounds rough, Roxy!

      • 5 months, 4 wks ago

        Apparently graves will never go away. For a few unlucky ones it just find a different organ to attack. Hope you are feeling better x

      • 5 months, 2 wks ago

        Roxy babe I didn’t scream I cried after my first appointment with the ophthalmic plastic surgeon. I sat down at a park and cried so much a lady came and asked if I was okay? I was crying because he said he wouldn’t operate till my thyroid levels were stable. I didn’t look like myself anymore.

      • 5 months, 2 wks ago

        OMG! I really hope this can be treated! – For both of you! ❤️️

      • 5 months, 3 wks ago

        Aww hugs. Family can be very hurtful at times like this. My parents are narcists and they don`t really give sh*t most of the time.

      • 5 months, 3 wks ago

        My mum was a narcissist. It scars you for life!

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