Viewing 8 posts - 1 through 8 (of 8 total)
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  • Ski
    Participant
    April 14, 2009 at 2:58 pm
    Post count: 1569
    #1072007

    Unfortunately, Thyroid Eye Disease (TED) can come on any time ~ it’s a separate, but related autoimmune condition. If that’s what is beginning to happen for you, you should be seeing an ophthalmologist for it (not an optician), and preferably one that has some experience with TED patients. It’s rare enough that not every ophthalmologist has experience with it. The fact that your sinuses have been a problem is telling. In recent research, it seems to indicate that people with chronic sinus problems are more likely to get visible symptoms of TED.

    As far as your symptoms of heat intolerance, etc. ~ it’s impossible for us to say whether that’s hyperthyroidism or menopause. You may want to check in with your endocrinologist and make sure your thyroid hormone levels are good, and if they are, check in with your ob/gyn to see if they can determine your status as to menopause.

    Please let us know what you find out, and I hope you find some relief from ALL of it, soon! <img decoding=” title=”Wink” />

    Jake_George
    Participant
    April 14, 2009 at 3:51 pm
    Post count: 120
    #1072008

    At one of our conferences, we had an eye doctor speak to us. He said that there is the possibility of an eye problem at any time in our lives after diagnosis of Graves’ disease. It is by far more commone at the onset or during the first few years.

    That is why it is important to keep diligent on keeping tabs with ourselves and know when things go from normal to wonky. I agree with Ski, get to your endo for a check up and blood tests to see if it is Graves’ or age related issues.

    We are only a click away.

    susan+
    Participant
    April 14, 2009 at 5:50 pm
    Post count: 3
    #1019495

    13 years later and now eye problems?????

    I went through a hellish years after the diognosis of Graves disease. Two years of medication to block the thyriod then radiaton to kill off part of my thyroid. Then years of trying to keep my TSH level with synthriod. For the last couple of years my TSH has been pretty steady.
    Now my eyes are bothering me. Red eys, swollen eye balls, swollen eye lids and an ache around me eye sockets. Also I have have my sinis bothering me over the last couple of years. Related? The red eyes came on right after I got rid of an sinus infection with anitbiotics.

    My thyroid problems started at the same time I went through menopause at 44 years old. Now I am 57. Since this all happened I have been dealing with heat intolorance and excessive sweating. Which seems to be more latley. Is this menopause or Graves?

    I have been seeing an optomitrist since my eyes have gone red and I am booked to see the eye specialist onThursday. It is very scary when you don’t know what is going on.

    Peace
    Suan

    susan+
    Participant
    April 17, 2009 at 12:54 pm
    Post count: 3
    #1072009

    I was very disappointed with my Othemoligst. He said it is very unlikely that it is graves disease. Part of the probem was my red and swollen eyes were better. Today they are red again. My eye sight is worse and my eye pressure is up. He said I don’t have to see him again unless it gets worst agian and is sending my GP a note suggesting some tests for auto immune diseases. He is whening me off of the anti inflamitory and the aritifitial tears.

    I am going to follow up with my GP who is quite thorough and compassionate. At the very least I can have my TSH tested. I am considering asking for a different Othemoligist. I would have to travel out of town for this, but it might be worth it. I asked him if he saw many graves patients and he said he had seen two already that morning.

    Thank you for listening. tIt is nice to know that there is compassionate and understanding people out there.

    frustrated and disappointed.

    azroses2322
    Participant
    April 17, 2009 at 3:57 pm
    Post count: 35
    #1072010

    Going to a different Opth.that understands Graves sounds like it would be worth it even if it meant a little travel. Your eyes are nothing to mess with or postpone. If you have one you can get to, consider it — you will at least be relieved to get answers on your condition and if it is Graves, he will be able to treat you or get you to treatment. One thing I found is that when it comes to surgery for eye correction, it is important that your primary Opth. knows where to send you — the corrections take different kinds of surgical specialites so I have 3 Opth. In the meantime, if I were you, I would still use OTC lubricants if you have dry eye problems — as my opth. told me — it sure will not hurt. If your pressure is up, it is even more urgent to see a GOOD Opth. I also have Graves related Glaucoma and have to be on drops — I have minor permanent damage to one Optic nerve from before it was found and brought under control.
    I am having my 6th eye surgery on Monday to repair my eyes and lids from the ravages of TED. I have to travel out of my insurance network and across town to get treated (office visits and surgeries) — it seems the doctors that can treat this are few and far between. I am convinced that both of my eye surgeons and my primary Opth. are the best. So for me travelling was worth it and has become a way of life.

    Ski
    Participant
    April 17, 2009 at 5:38 pm
    Post count: 1569
    #1072011

    I would echo both pieces of advice ~ go and see that second ophthalmologist, your sight is worth it. In addition, there’s no need to stop the artificial tears if you find they are helping. Without the artificial tears, you can suffer chronic dryness, which can cause corneal damage or corneal ulcers. If these conditions get bad enough, they can cause sight loss all by themselves. Just the fact that you have Graves’ thyroid disease (even though it’s under control) means that your tears are probably thinner, less helpful to your eyes, and the artificial tears can be very valuable. As long as you use the drops without preservatives, there’s no need to stop using them ~ they cause no harm and can keep you much more comfortable.

    It IS possible that what you’re experiencing right now is not TED, so keep that in mind. It sounds like the ophthalmologist was rather dismissive, which puts us off right away. The question is, If it’s not TED, then what IS it? It IS their job to find out. The tests that the ophthalmologist recommended sound as if they have to do with testing for the particular antibodies associated with TED, so definitely follow up with the GP and have those done. Just remember, if the tests do not prove up TED, go back to the ophthalmologist, point out that you are still having problems (take pictures when the symptoms are at their worst, and perhaps even keep a symptom diary just for your eyes), and ask for further evaluation to determine how you will get relief.

    susan+
    Participant
    April 17, 2009 at 11:37 pm
    Post count: 3
    #1072012

    Thanks for the advice. I will follow up. I will keep hoping that this just may not be graves. <img decoding=” title=”Razz” />

    Sjefferys
    Participant
    April 18, 2009 at 2:03 pm
    Post count: 15
    #1072013

    I’ve been very lucky, when my eyes started to bulging and the pain- I shared this with Enco Dr, he referred me to Opmt Dr dedicated to GED. I had 2nd eye decompression May 13, and what a joy the reflex tearing, itching, eye ball pressue and sinis problems are of the past.
    It’s such a blessing to look in the mirror and see the spark in my eyes. Maybe its worh a try to contact DUKE Medicine, North Carolina to see if they can refer you to Dr, specializing GED in your area. Good Luck

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