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  • klassey
    Post count: 21

    Why after all this time ( 16 months and IV steroids) are my antibodies still so high (586) Test NameTSI (THYROID STIMULATING IMMUNOGLOBULIN) should be below 140% . What am I doing wrong here ? I feel good and for the last 2 visits my eyes have not changed which is a good thing according to the DR. I agree, they are not getting worse and actually have gotten a little better. Not so light sensitive and some of the swelling is down. Double vision has decressed and only when I’m tired at night. So all good things but whats up with the immune system ? What else can I do to help suppress this without using more steroids? Still a lot of inflammation in my body, he gave me steroid eye drops to use for a few weeks to help clear up the redness and inflammation in my body.
    Does anyone have any thoughts on this? What else can I be doing to get through this stage.

    Klassey

    Liz1967
    Post count: 305

    The eye disease progresses or regresses as it will and there is not a lot you can do to change it. High TSI means you have Graves orbitopathy, the higher the number, the more severe the eye involvement. TSI goes down quicker after thyroidectomy than RAI, but I am pretty sure even when the eye disease is inactive, you still have some level of these antibodies if you have had eye involvement. The eye disease lasts anywhere from 1-3 years. Oral or IV steroids are used if your optic nerve is compromised, as is orbital radiation (I had all three over the course until burnout). There is not much you can do except wait it out, which is pretty awful. I tried selenium which is supposed to help and it really did nothing. Reserve the systemic steroids for when you are in real trouble and get by with the local eyedrops if you can. I did find loteprednol eyedrops, a really mild steroid, to be helpful for the irritation. Hopefully, as your symptoms actually seem to be improving, which does not always happen, you may be close to burnout.

    klassey
    Post count: 21

    Thanks Liz,it great to have support on this end. So after all your surgeries, do you still have dry eyes and have your eyes returned to a normal look again? My dr gave me an antiinflammatory to take for now but it makes me sick and massive headache so I stopped, I;ve done the whole iv steroid route and that has helped to keep it at bay. I guess I should just be thankful for where I’m at and be grateful that I can still function pretty normally. It sure is annoying though. LOL

    Thanks for being here !!!

    Gail

    Liz1967
    Post count: 305

    My eyes look normal except the left lid is about 1 mm lower than the right, which is within what is normal variation (there are movie stars with this much variation, like Paris Hilton or Christy Turlington for example). No redness, bulging, chemosis, puffiness or lid retraction. This is after six surgeries on each eye! I also had the lower puncta occluded to help with dryness, but I use Xiidra, the newest dry eye drop, which has been miraculous. I do not need lubricating eyedrops literally all day and I am totally comfortable. I do use eye gel, not ointment, at night and cover my eyes with either plastic wrap or a sleep mask, but I can get away without anything for a couple nights if I need to. I still have double vision to the sides and will wear a small amount of prism when expressway driving or really tired. So while things are different than they were prior to Graves, I am really grateful to have not lost vision (I had optic neuropathy), to see single and to look normal, as well as to have the whole awful dry eye thing relieved. I had really severe TED and my eyes never really improved on their own, they just stopped getting worse. So hang in there, it does eventually end and even if you should need corrective surgery, the results are usually good.

    klassey
    Post count: 21

    Thank you Liz for all your imput. It is reassuring. Dr. prescribed prism for me for driving as well . I have yet to fill the script as I’m waiting on second opinion to see if I need reconstructive surgery before muscle surgery. My left eye seems to give me the most trouble, I call it a lazy eye LOL. He thinks I can get away with no surgery if I want to, just try the prisms ! We’ll see. (no pun intented) .

    Liz1967
    Post count: 305

    Generally they will not do strabismus surgery if you require a small amount of prism because of the risk of you ending up exotropic (eyes going out rather than in). The problem with not having orbital decompression is that if the disease recurs at a later date, and this can happen years down the road, you can end up having to have decompression after your muscles and lids have been repaired and this can affect the results of those surgeries. On the other hand, orbital decompressions, especially if not done laterally through the lids, can worsen the double vision. Hard decisions. You are wise to get second opinions. Choose your docs carefully! Good luck!

    klassey
    Post count: 21

    Well I saw the second surgeon who would do the reconstructive surgery and decompression. He suggested several options but none of course without risks of worse double vision. Understood. His last comment to me because of my not knowing what to do either way was” If you were a truck driver and depended upon your driving for your livelyhood I wouldn’t touch you”. So there was my answer. Do nothing at this time and go get the prism glasses. I’m happy to report that the glasses do help with the driving. Yeah !!! Guess I will hope and pray that it never gets any worse than this and accept the way I look. Feeling blessed.

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