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  • Annie996
    Post count: 1

    I am having TED symptoms for the 3rd time I had a complete thyroidectomy about 5 years ago I had decompression surgery on my left eye in 1992 and it is bulging again I was just wondering if anyone else has had TED 3 times

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – Hopefully, you’ll get some responses here, but you might also check our our Facebook group @GDATF or onegravesvoice.com.

    My understanding is that it’s rare for TED to recur, but it can happen, particularly with exposure to smoking/second-hand smoke and also with stress.

    If the doctor who did your original surgery is still practicing, hopefully, you can get back in – as it would be helpful to get an evaluation done.

    Liz1967
    Post count: 305

    Reactivation has been found to be not as uncommon as previously thought. I have a friend who is on her fourth recurrence and I have had it flare up at least once after lid surgery, after which all other reconstructive surgeries were “covered” with prednisone courses. Fortunately my flares were easily treated and mild, but others have not been so lucky requiring repeat surgeries. They have infusions of a drug called Tepezza but it is pricey. See an oculoplastic surgeon to monitor your course and treat if needed before damage is done. Of note, I had total thyroidectomy, steroid infusions, radiation to my orbits, bilateral orbital decompressions and still had a TED flare.

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