Thyroid eye disease

The optician has recently told my ive got thyroid eye disease. To be honest I had no idea that was possible post-thyroidectomy and thought it was just when eyes bulged.

What I have is majorly dry eyes, they're very dry and bloodshot now. They've given me drops and a heated eye mask to use and massage eyes twice a day. But eyes still very dry and irritated and don't see any noticeable improvement yet. Anyone else found any solutions??

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  • rosiet84 you need to be referred to a specialist opthalmologist to have your eyes assessed properly. The optician should have done that really. Make an appointment with your GP and ask for an urgent referral. Urgent only that the sooner you get seen the better outcome you will get from your eyes.

    As a rule, GP's and endocrinologists do not understand the eye disease so you have to be fairly strong with them to see a specialist.

    Around a quarter of people with Graves' suffer some form eye disease but the severity ranges greatly and only a small percentage of those are severe enough to warrant any action.

    I have the disease and having my thyroid removed made the problem worse even though I was told to have my thyroid removed to prevent any further problems.

    I presented with dry red eyes, no bulge and they left more than a year before I did eventually get to see someone by then they did bulge.

    Keep you eyes lubricated as much as possible, I use hyo-forte 2% solution, your GP can give you a script for that but they'll moan that it's expensive. Stay away as much as you can from dry heat and keep rooms especially bedrooms well ventilated perhaps with a window open and wear an eye mask at night. The big no no is cigarette smoke whether from yourself if you smoke or second hand smoke. All cleaning material like bleach cleaners will also cause further irritation.

    I supplement with selenium it has been suggested in prior studies to improve symptoms of TED.

    You will need to keep you TSH as low as possible, your opthalmologist will suggest this but sometimes very difficult to get the endocrinologist or the GP to work with this but it is essential to keep antibodies low.

    This is a facebook page call thyroid eye disease facebook.com/groups/3129984... I find it helpful to ask as many questions as need. Beware though that there are some extreme cases on there and that might not be what you want to see.

    btf-thyroid.org/information...

    As I said at the top of the reply, getting your eye assessed properly as soon as possible is the key. It may well be like most you have a mild case and that's what you want to hear but if they need any treatment the sooner the better.

    I wish you well

  • Thanks that's really helpful. I've phoned back the optician for more help given your advice (if they can refer that'd be better as I've had to see gp so much lately!!) but will contact gp if not.

    I'm never around smoke luckily but will look into selenium - any particular amount/strength?

    I couldn't handle scary cases at mo so I'll avoid the Facebook group for now! I've had a right nightmare with thyroid levels past year so expect that's triggered things but getting tested again in a few weeks so I'll try to make sure tsh low - is there a recommended range? I was being suppressed for papillary cancer but new endo says not necessary so may be a fight as mentioned...

  • lifestyle-labs.com/products... This a good brand but there are plenty of cheaper alternatives.

    My TSH is 0.03.

    Happy to help with any concerns.

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