Graves Disease - Eyes
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Could anyone who has experienced protruding eyes with Graves Disease tell whether of not their eyes have returned to normal?
After two thyroid storms 10 mos. ago, I was diagnosed with Graves Disease 8 mos. ago. and prescribed Methimazole 10 mg. and Propranolol. That same month, one of my eyes began orotruding/eyelids retracting. I had upper and lower eyelid surgeries 2 mos. ago, which improved my appearance but my eyes are still asymmetrical. 😢
Since my diagnosis, I have been doing everything in my power to try and get it under control: Riding bike 15 mi./day, cutting out gluten and dairy from my diet, taking all meds, and reducing stress. However, my Graves Disease has remained out of control since the first thyroid storm. Blood levels are "approaching" normal range but I have not yet attained them. My hair has been falling out by the handsful for 10 mos. as well. Besides my eyes, my Graves Disease is accompanied by a blistering rash on my face which occurs nearly every other week: Prednisone and Benadryl knock it out pretty effectively. Many mornings I wake up drenched in sweat. Some days I lose hope that this disease will go into remission.
My surgeon brought up orbital decompression but the thought of that terrifies me, and I have no confidence that the symmetry of my eyes will be restored. I've put off further surgery for 6 mos. to see if my eyes further change.
Is there any chance that my eye will stop protruding? Thank you for your input.
0 likes, 10 replies
linda187 Clancy44
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Clancy44 linda187
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In addition to the Methimazole, Propranolol and Cetirizine, I've been taking the supplements Selenium and Acetyl L-Carnitine. It takes so long to detect what effect, if any, these are having. I try to read all I can but am unsure of what vitamins, minerals and amino acids I should take, and in what quantity? Do you know of anything published that might provide guidance on that? Thank you for your assistance.
tatiana12 Clancy44
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I am also on Selenium (100mcg a day - can go up to 200 - one /two Brazil nuts a day ) and vit D (2000 mg a day, except in the summer months )
linda187 Clancy44
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tatiana12 linda187
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I will comment with links I must find when I have some time, sadly this is not the right moment in my life with major changes occurring and little if no time left to scroll through the extensive literature I have read on the subjectof L Carnitine.
I tend to be cautious with any supplements , and that includes Vit D , where dosage suggested has varied with each different endo or GP I consulted. It appears to be beneficial in protecting against cardiovascular diseases , so I stick to an average dosage, when I forget to take my daily one, I will add some to the next day s. VIt D dosage also has to be adapted to the area of the world where you live, in Northern countries the dosage can be double in comparison to say Spain or a Mediterranean country.
the same app'ies to the season of the year, in the summer months we all tend to build up enough Vit D if exposed to sunlight over 30 mins a day.
Steroids are usually given for eye bulging only during the inflammatory stages of the disease. However once Graves disease has " settled " - in my case I have perfectly normal values since a couple of years- steroids have no impact anymore. And the consequences of thyroid storm that may have caused eye bulging can only be corrected through surgery at that point.
tatiana12 Clancy44
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Hope you find an answer to your problem soon.
Clancy44 tatiana12
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The surgery was to correct eyelid retraction: the upper was to loosen the lavatory and Mueller's muscle and left a scar across my eyelid, while a spacer material was inserted into the lower lid. It is an improvement over the retracted eyelids and eliminated the constant pain, so I am grateful for that that. But that eye continues to bulge; it just isn't as noticeable. And my eyes are asymmetrical. I wish I knew whether or not that eye will EVER stop bulging. My surgeon thinks that it will not and that, in fact, the other eye may begin to bulge and/or the retracted eyelids may retract again. I know the eye on which surgery was performed will have to be revised but I'm putting off additional surgery for 6 mos. at least, until then, I have to look less attractive. 😔
Clancy44
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tatiana12 Clancy44
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thank you
tatiana12 Clancy44
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