recently diagnosed with thyroid eye disease. advise needed please

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After many years of having a droopy left eye I finally decided to go to the doctors. Doctor said I was vain but he would refer me to hospital. To cut a long story short on Friday I met the surgeon who was going to lift my left eyelid via an operation. Upon meeting me he said I have thyroid eye disease which has gone untreated in the past. Apparently the eye i thought was droopy was infact normal.. it is the right eye that has bulged so much that its abnormal. He's going to operate and remove the scar tissue and drop the eyelid so both eyes are symmetrical. He said my blood results are ok now so don't require treatment and he is unsure how ive gone through life without paying a visit to my GP as my thyroid abmomality would have lasted at least 2 yrs.

Does this mean I still have thyroid eye disease? If not can it return? Is it hereditary? Should I have regular blood tests taken? Any advise would be grateful please

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7 Replies

  • Posted

    That's exactly what happened to me when I was first diagnosed and the Graves disease has weakened my eye muscles.  Like you, I went into remission but it came back in 2012 and again a month ago.  It doesn't always return but I would advise you to be very concious of your health and if you start to feel unwell to get checked.  I'm going to have RAI as I've had enough of it. 
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    • Posted

      Thanks for replying sue, I'm very new to this so hope you dont mind if I ask what RAI is? Also when you say it came back do you mean under/overactive thyroid problems or bulging eye?

      I wish I had of asked the surgeon more questions on Friday but I didn't think at the time!

      Also Is thyroid eye disease the same as Graves disease?

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    • Posted

      As I understand it, as of 2010, the policy, in the US at least, is to avoid using RAI treatment on those with any tendancy to have Thyroid Eye Disease because it increases the chances of having the eye muscles get worse.  The thing about Graves' Disease and sometimes Hashimoto's Thyroiditis is that the autoimmune attack against thyroid proteins is the same against some of the same proteins found in the eye muscles.  It isn't actually a function of being hyperthyroid.  You could have too much thyroxine by taking an overdose of levothyroxine and it would not affect the eyes, but the autoimmune effect can happen even when the thyroid is inactivated.
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  • Posted

    If you have thyroid eye disease it's a side effect of thyroid disease. Overactive is most often caused by Graves. Rai is radio active iodine therapy that causes the thyroid to become inactive. You then take thyroxine for the rest of your life. I suggest you google it and you will find more info.
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    • Posted

      Radioactive iodine does not eliminate the antibodies that cause Graves Disease and it is known to worsen eye disease. 
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  • Posted

    There's always surgery. Having had Graves three times now I'm going to do something more invasive. The carbimazole lowered my white cells even more. The drugs to suppress have far more side effects than thyroxine.
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  • Posted

    While some people do okay after surgery and replacement with Synthroid, many more patients do not and never feel normal again.  Having a treatment like RAI or surgery is irreversible if it does not work for you.  Taking meds is reversible because you can always stop them or do other things to improve your health.  Most of the side effects from antithyroid drugs happen at high doses.  I found for me, I was able to lower my dose of methimazole when I added supplements like Vitamin D and Acetyl-L-Carnitine to my treatment.  Unfortunately most doctors do not know about this and are not interested in learning about it.  My thyroid antibodies are now within the normal range as are all my lab results.
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