Forum Replies Created

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • De
    Participant
    Post count: 9
    in reply to: In a rush? #1169587

    To Rushed: Getting to the right doctors is essential in treating and coping with TED. I go to the University of Minnesota thyroid eye disease doctors and also my Endo doctor is there. Very pleased

    De
    Participant
    Post count: 9
    in reply to: Pondering TT #1182398

    My Endo at mayo said rai was the way to go so that is what I did. My mother and brother both received rai treatment without complications so I went for it. I am now dealing with severe TED and am so miserable. Had orbital decompression surgery twice since January and am now on 12 weeks of solu medrol IV infusion (once weekly). They said more surgery but I’m putting it off for the time being. Hate steroid side effects , round face, headaches, weight gain, you name it I have it. Finally off oral prednisone, big triumphant for me. Shirley has been a great source of information and has helped me tremendously.
    If I had elected thyroidectomy vs RAI would I have avoided TED. I find a graves patient needs to educate themselves , I wish I hadn’t been so ignorant about Thyroid disease.
    Hey Shirley it’s 70 degrees today, heat wave in Minneapolis. Still snow on the ground. Bet you miss it. HA

    De
    Participant
    Post count: 9
    in reply to: a bit of history #1182355

    To snelsen, you always make such sense about graves. I enjoy your posts and your reassurance. I am continuing with more treatment for my optic neuropathy, look forward to the day when things are somewhat normal, doubt I will ever be 100%. Thank you!

    De
    Participant
    Post count: 9

    I would also like to know why so many ophthalmologist don’t think of TED when patients present themselves with obvious symptoms of this condition. After I was finally diagnosed in January, 2014 with TED I was told by three ophthalmologist that this should have been caught by the other three ophthalmologist. Very frustrating.

    De
    Participant
    Post count: 9

    Thanks Shirley
    The swelling and progression was so rapid they feared my vision was in jeopardy . Yes, the doctors said this should have been easy to diagnose, my ophthalmologist plastic surgeon said he can diagnose someone in a grocery store. The U of M doctors just shook their heads. I passed the ishihara color test and two days later flunked it and ct scan showed so much swelling that I really didn’t have much choice. I hate the prednisone and hope I am able to get off it soon, the side effects are awful.
    You definitely know what I am going through and I look forward to your posts.
    DE

    De
    Participant
    Post count: 9

    khinsch
    Khinskch
    Hi,
    Are you referring to the mayo clinic in Minnesota ?
    I am a patient there and return annually to see my Endo doctor. When I was there last summer I was having eye symptoms and was referred to ophthalmology department. I was told my symptoms were not thyroid related and diagnosed with bilateral cataracts. Cataract Surgery done June, 2013 and September,2013. October, 2013 started with eyes tearing, eyelids swelling, distorted vision on upward and sideways gaze. Put on steroid eye drops and again when I asked if this could be my thyroid I was told NO. Not satisfied with this doctor I went to a new doctor, same thing except changed eye drops to lotomax($150.00 per 5cc). Symptoms continuing but getting worse with fuzzy vision, tearing etc so we flew to Minneapolis on January 1, 2014 and I was seen at the thyroid eye clinic and put on high dose of prednisone and scheduled for emergency decompression surgery on January 24, because of optic nerve involvement. Needed more extensive decompression surgery on both eyes on February 7. It has been a very rough road but I feel if I had not been at the right place at the right time I would have lost my vision in my left eye. I am still not out of the woods and tapering off prednisone . You need to find the right doctors. At the thyroid rye clinic there is a team of doctors working together. I am switching to the University of Minnesota from mayo to an Endo doctor who specializes in graves. My Endo at mayo is into diabetes more than thyroid . It is still hard for me to believe that everything I have been through in the last few months is because of a little gland called the thyroid .

    De
    Participant
    Post count: 9

    Thank you for the follow-up Kimberly.

    De
    Participant
    Post count: 9

    Thank you for the follow-up Kimberly.

    De
    Participant
    Post count: 9

    This is my first ever post to any kind of forum. I feel I need to give some history of my condition so here it goes.
    Diagnosed with graves August, 2011. Rai done September,2011. Started Levothyroxine, took a few months to get correct dose . Did fine until May, 2013. I complained to my Endo about my vision not being as good as I would like. Referred me to ophthalmologist,was told my vision was not related to graves or thyroid. Said I had bilateral cataracts and had cataract surgery done in July and other eye in September of 2013. Well since last fall I have had nothing but eye problems. Went to a general ophthalmologist in October and he diagnosed me with iritis and dry eyes and put me back on steroid eye drops. I asked him if this had anything to do with my graves or thyroid and he said NO. I was not improving so made appointment to be seen by another ophthalmologist. He changed my prescription to lotomax and I was rechecked again in four weeks. Both MD’s blew me off regarding that my vision problems were caused by my thyroid condition. Symptoms progressed so I contacted University of Minnesota (my cataract surgeon) and a ophthalmologist tech spoke with me and said she wanted to get my records and call me back. She called and said she had checked with my MD and a couple residents. Said my symptoms were probably thyroid related. Flew to Minneapolis diagnosed with TED and had tests done, Ct scan, color test, and visual fields showed optic nerve involvement and put on a high dose of prednisone and had urgent orbital decompression surgery in January and more extensive decompression done 11 days ago. Still not out of the woods , vision very fuzzy, worse in left eye, cheek, nose, upper lip/teeth numbness, facial swelling and constant headaches. Are these normal post-op symptoms? I have many questions but don’t know if anyone will read this post or not. Its been a tough few months but I can see I am not alone.

Viewing 9 posts - 1 through 9 (of 9 total)