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Thyroid Eye Disease
Hopefully I will have a little luck from someone that has either "been there" or know someone who has. Everything I've dug up on the internet about Graves Disease seems to only deal with the Thyroid issues and I don't have Thyroid issues...yet..I do know they say that could be next on the horizon for me, but until then I'd like to know information about just the eye issues since that is all I've had other than the "lovely" side effects of the prednisone etc. It will be 2yrs in January since this episode began, I've had low dose radiation to reduce the inflammation and plenty of prednisone. I had a few weeks of single vision back in October and that's it. I've had the bulging eyes, lid lag, both eye's have take turns looking in every direction,and chemosis. I'm on my 2nd Neuro Ophthalmologist at a teaching hospital.Basically I'm told to wait till it "burns itself out" and everything is just maintenance till then. According to this doctor my case is far from textbook..which makes me feel even more alone. Does this ring a bell with anyone? Thanks for listening! Deb 8o)
Your symptoms sound familiar. I had nearly all of them, except no double vision. The doctor who is telling you to wait it out is telling you what I heard - the surgeons don't like to operate until the disease has stabilized, for fear that something will change and the step will need to be redone.
My surgeon waited for 6 months after changes to my eyes had stopped. The first step was orbital decompression surgery for both eyes and correction of lower lid lag. Usually, the second step is to correct any double vision, I was lucky enough not to have that particular problem. The third step is to correct the lid retraction in the upper lids. I had the first surgery in March, the eyelid surgery in November.
I can't say what a relief it is to be "normal" again - at least, what I think is normal, after 3 years of problems, I'm not sure I remember what normal was, exactly! I had eye symptoms long before I was diagnosed hyperthyroid/Graves - several months.
Good luck to you. I wish you the best in your search for answers.
My surgeon waited for 6 months after changes to my eyes had stopped. The first step was orbital decompression surgery for both eyes and correction of lower lid lag. Usually, the second step is to correct any double vision, I was lucky enough not to have that particular problem. The third step is to correct the lid retraction in the upper lids. I had the first surgery in March, the eyelid surgery in November.
I can't say what a relief it is to be "normal" again - at least, what I think is normal, after 3 years of problems, I'm not sure I remember what normal was, exactly! I had eye symptoms long before I was diagnosed hyperthyroid/Graves - several months.
Good luck to you. I wish you the best in your search for answers.
I also had the bulging eyes, pressure, dry, looked like they were popping out of my head. I went to my optholmogist and he said to use drops it was dry eyes. He didn't mention the TED and I didn't either. Since then I have been using the eye drops and and ointment at night. I have been drinking a lot of water and it seems not I don't need the drops or ointment and the light isn't bothering them either. I had to wear sunglasses even in a well lit store. I don't know if this will help you or not but its worth a try. praying for your eyes. Linda
You probably know most of this already, but in case not, I'll go a little into it. And please excuse me if I repeat myself.
Yes, doctors will take the wait and see approach, until it "burns itself out" called the hot phase. When it has "burnt out" it is called the cold phase and that is when doctors consider treatment.
TED is caused by a different antibody than Graves' antibody, although a lot seem to think that the two different antibodies are closely related as to being cousins. However, Graves' antibody attacks the thyroid, TED antibody attacks the eyes. The condition is seen in people with no other evidence of thyroid dysfunction, and occasionally in patients who have Hashimoto's Disease. Approximately 10% of people who have this eye disorder never develop hyperthyroidism. So, one can have TED and not have Graves’ and one can have Graves’ and not have TED. Also,some people develop TED when they take animal-based extracts such as Armour, because the immune system react to foreign proteins found in glandular extracts. Synthetic meds. doesn't cause this problem.
TED can come only once or visit us many times over our life. We can have multiple flair ups through our lives. Each time we have a hot phase we need to deal with what damage it is doing during that phase. I have read where people have had four hot phases, so far, and needed corrective surgery after each bout of inflammation.
People who have not had thyroid disease previously must be examined on a regular basis in case they develop thyroid disease. however, treating the thyroid may not improve the course of the eye disease, but having abnormal thyroid levels can make it worse. It's possible to have the eye disease with normal thyroid levels or occasionally with hypothyroidism.
A person does not have to have a thyroid condition to have TED. The treatment is the same for TED regardless of what caused the eye condition.
Hope this makes sense and a help to you.
Happy New Year and Best Wishes for 2008.
Yes, doctors will take the wait and see approach, until it "burns itself out" called the hot phase. When it has "burnt out" it is called the cold phase and that is when doctors consider treatment.
TED is caused by a different antibody than Graves' antibody, although a lot seem to think that the two different antibodies are closely related as to being cousins. However, Graves' antibody attacks the thyroid, TED antibody attacks the eyes. The condition is seen in people with no other evidence of thyroid dysfunction, and occasionally in patients who have Hashimoto's Disease. Approximately 10% of people who have this eye disorder never develop hyperthyroidism. So, one can have TED and not have Graves’ and one can have Graves’ and not have TED. Also,some people develop TED when they take animal-based extracts such as Armour, because the immune system react to foreign proteins found in glandular extracts. Synthetic meds. doesn't cause this problem.
TED can come only once or visit us many times over our life. We can have multiple flair ups through our lives. Each time we have a hot phase we need to deal with what damage it is doing during that phase. I have read where people have had four hot phases, so far, and needed corrective surgery after each bout of inflammation.
People who have not had thyroid disease previously must be examined on a regular basis in case they develop thyroid disease. however, treating the thyroid may not improve the course of the eye disease, but having abnormal thyroid levels can make it worse. It's possible to have the eye disease with normal thyroid levels or occasionally with hypothyroidism.
A person does not have to have a thyroid condition to have TED. The treatment is the same for TED regardless of what caused the eye condition.
Hope this makes sense and a help to you.
Happy New Year and Best Wishes for 2008.
Who told you it had nothing to do with the thyroid? Graves's is caused by hyperthyroidism. I hope GravesLady will respond to you. She can tell you all about it. Meanwhile, you should be seeing an endocrinologist and dealing with the thyroid issues. What radiation therapy have you gone through and what is it targeting? I believe you should be getting all the information you can to discuss with the doctor just what it is he is treating, or am I misunderstanding your post? You could be in for a multitude of problems if you are not getting the right treatment. Good luck.
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