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  • Anonymous
      Post count: 93172

      Hello Nina,

      Welcome to our bulletin board. We understand your concerns. Many of us here have had the eye issues as well. You may wish to ask for a second eye surgeon consult. While our eyes are in the hot phase we often need topical steroids and sometimes even oral steroids. It may be worth asking your doctor why he is reluctant to treat the symptoms.

      I understand your husband has issues as well, but you cannot help him until you help yourself. Try to find an endocrinologist not an internist. It depends where you live in the country what eye help is available. A plastics eye surgeon, may be able to provide you some temporary relief.

      It’s hard to tell with hot phases how long they last they can go from six months to over year or longer. And yes or levels to have an effect on how our eyes feel and how they affect the hot phase. That is why recommended that you get a endocrinologist and not an interest.

      We are here to answer your questions, and are only a click away. So when you need help stop by and ask a question or just vent.

      Jake George,
      National Graves’ Disease Foundation
      Co-Author: “Graves’ Disease In Our Own Words”

        Post count: 93172

        Hi Nina,

        I’m so sorry to hear that you are dealing with severe TED symptoms ~ it’s no fun at all, and I realize it can be scary too.

        First, thyroid levels can play a small part in one eye symptom, but thyroid levels do not affect TED at all. This is likely why the eye doctor does not seem interested in the status of your thyroid levels. When we are hyperthyroid, sometimes the muscles in our eyelids can be in constant spasm, which can cause a bit of an odd look and some discomfort, but other than that, the eye disease takes off on its own individual course and treating the thyroid will not do anything to change it.

        The “hot phase,” defined as a period when your eyes are changing frequently (the muscles swelling and receding), can last for a while, but there are things you can do to alleviate the discomfort. Usually a doctor will say the hot phase could last anywhere from one to two years, but please don’t let that send you into a panic (difficult to ask, I realize!).

        There are so many elements to the eye disease that it’s difficult to give quick, concise advice. I’ll try to address a few things here and then I’m sure others will fill in the blanks that I’ve missed.

        First, you need to express to your eye doctor how uncomfortable you are driving and even functioning. Oral steroids can keep the swelling down, which can help you keep functioning. They do carry their own risks, but if you have so much trouble, it may be time to consider taking them. Directed radiation is another option that has provided relief to some patients. Surgical options are not recommended until you have entered the “cold” phase, since they can trigger more swelling and effectively negate the benefit of the surgery.

        Still, in the meantime, and without steroids or directed radiation, you can do some things to relieve the symptoms.

        You want to keep your eyes moist at all times, which means using artificial tears. These are the drops that come in “single use” tubes ~ NOT “get the red out” drops. They can be rather expensive but they will save your comfort, guaranteed. They can also save your sight, since dry eyes can end up with corneal scratches, which are not treatable. Also, to keep the sunlight from irritating your eyes, you should invest in wraparound sunglasses. Sure, they aren’t your typical sunglasses, but the comfort they provide is certainly worth it. It is critical to keep *every* possible irritant at a minimum right now. You’ll want to be careful about breezes (auto air conditioner, for instance), light (even flourescent lights), and working too long looking at one thing (computers, reading).

        You may find that raising the head of your bed can provide some relief. I don’t have many eye symptoms, but they’re better when I sleep on my own bed, which has the head raised about 4″. It helps gravity to keep the fluid from collecting in the eye muscles, and doesn’t strain your back like multiple pillows can do.

        For pain you may be experiencing, we always recommend ziploc bags of frozen peas ~ ziploc bags so you can quickly identify the bags you use for your eyes (and don’t cook them for dinner), and frozen peas because they conform better to the contours of your eyes than most ice packs.

        I need to go now, so I hope more suggestions come in for you. We had a talk at one of our conferences about the eye disease, and it’s difficult for most people primarily because of the change in appearance ~ the symptoms themselves are inconvenient, but they found that patients had more issues surrounding the look of their face. Believe me, we are all behind you, we understand, and you CAN get through this. Invest in some good, middle-of-the-road sunglasses (some you can wear indoors) and you can minimize the visible change in your appearance. I think it can work wonders, just to feel as if you present your “former” face to the world.

        Now, as for balancing your needs with your husband’s, hopefully he will see that it’s his turn to start giving back to you now. Perhaps you can have a very frank talk with him about your fears. It’s better to talk it out than to keep trying to “be everything.” You may find that he’s far more understanding than you suspect.

        I hope this helps!

        NGDF Assistant Online Facilitator

          Post count: 93172

          There are some sunglasses (relatively inexpensive ones) that protect the eyes all around. They have frames that fit against the forehead, and they have wide sides that also block light coming in. They have provided me with a lot of relief from the light sensitivity over the years. They can also fit over your other glasses (if you wear glasses) — they are a type prescribed for elderly patients with cattaracts (sp?) and are available in most drug stores and eyeglass places.

          And one other suggestion for you to consider. I ache for you having such a health issue at the same time that your husband has his own, very real health problems as well. It might be a very good idea for you to try talking with a counselor. You need to be able to express y our frustrations and confusions to someone, and I can well understand why you are perhaps not able to use your husband these days as a sounding board. But having someone to talk with, someone trained to help you balance yourself can be extremely helpful.

          I do know how hard these days are for you. I had moderate eye disease, and it was very frustrating at times. And terrifying as well. I hope you see improvement starting soon.

          Bobbi — NGDF Online Facilitator

            Post count: 93172

            Dear Bobbe, Ski, and all the other wonderful fellow patients,
            Thank you all for being there. I always feel better when I read the postings. I have Graves eye disease as well as some general symptoms of this disease. I saw my Endo a few seeks ago — he seemed to be shocked at the appearance of my eyes. My TSH had dropped from 0.71 to 0.04 and my T4 had risen to 1.9. My Tapazole has been increased to 10mg q day from 5. My eye MD is an oculoplastic surgeon, but he doesn’t seem to want to discuss my thyroid levels. My visual acutiy has dramatically decreased and my eyes are so senstive to light — even with sun glasses — that I’m fearful re driving. I don’t know how much longer I’ll be able to keep my job. The eye MD is reluctant to prescribe topical or oral steroids. I’m trying hard to be supportive of my husband, who had a prostatectomy last year and has his own emotional issues. I just don’t feel I’m able to meet all his needs at this time. The tables has turned. Being a nurse, I felt that I was always able to care for his health needs —- such as reminding him to take his asthma meds, etc. , but now I’m the one that seems to need extra TLC now. I’m trying very hard not to complaim. etc. bit it’s difficult to be upbeat. I don’t feel I have an internist that I can talk to, as the one I had for over 20 years retired shortly before my illness was diagnosed. Can someone tell me how long their acute eye phase lasted? I know there’s no definite answer, but a general idea would help. Thanks much for listening.

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