My 15 year old daughter was diagnosed with graves disease about 15 months ago. The endocrinologist put her on Tapezole which the hyperthyroidism responded to. Before she was diagnosed with Graves, (which took 2 months ) her whole face swelled up and her eyes bulged out. Her eyes never went back to normal. The Dr.s want to take her thyroid out, because they said there is a 2 year limit on the reversal of the eye surgery.My questions:, if the thyroid is responding to the meds, but the eyes are still bulging, is it necessary to remove the thyroid before surgery of the eyes can be done? Is there anything that can be done for bulging eyes besides surgery?
Thyroid surgery theoretically helps thyroid eye disease if the immune system markers decrease after thyroidectomy. This is not a proven method to treat the eyes, but I have seen it work in many cases. Usually we do this when the tapazole is not working and we wish to avoid I-131 as that clearly can worsen the eyes.
Would see an eye doctor specializing in thyroid eye disease to have an evaluation as to the activity score of the eye disease and the probability of reversing the inflammation with treatment (such as thyroid surgery).
I am not a doctor but I will tell you that I had my throid removed a year ago (graves disease) and I still have lid retraction. If TSI nad Trab antibodies are normal, and your daughter has still bulging eyes, then thyroid surgery cannot offer a lot. If there are these specific antibodies, then yes. Maybe surgery is a sollution.
In general, It may take three years for the eyes to go back, even if you are eythyroid.
After a year of thyroid surgery, I am a little bit better and I am waiting before I do any plastic surgery. I will wait for another year!
My Daughter did see a specialist that deals with TED, and said he rarely does surgery on anyone under 18.He did say, there was a 2 year window before the scarring would become permanent to her eyes. He said he wouldn't do the surgery until the Thyroid is 100% under control. This is why they want to take out the Thyroid. Any comments?
We are going to see the Thyroid surgeon today for a consult, I I want to make sure I have the facts right. Thanks
I have Graves Disease and TSI antibodies level of 367 (normal range 0-139) , symptoms of eyelid swelling, then bulging eyes, then double vision--over 3 month period. Today, at the 5 month marker, the offical dx is Toxic Nodular Goiter. Prior to this, I had been on Synthroid for 4 years to treat hypothyroidism. Suddenly, my thyroid resurrected, and I have tested hyperthyroid for 4 months, even though I totally stopped synthroid 2 months ago. My endocrinolgist put me on Tapazole 5 mg qd.and could not say whether my double vision would improve with treatment or not. Meanwhile, an ophthalmo-neurologist gave me a prescription for prisms in my glasses to correct the double vision, but I have not had it filled because I think the condition is very unstable, and I don't want to get the correction until it doesn't change every day, or if it will resolve with treatment. What usually happens? If it takes 3 years, I should probably get the lens correction so I can read more easily. Does the strain of the eye muscles trying hard to focus add to the problem?
I was hyperthroidism 5 yrs ago did the RAI had little swelling in my eyes then, about 6 months later I was hypo now I take Levoxyl 0.100 my levels are normal but my eyes bulge very badly my face is swelled I've gained 30 lbs Eye Dr. told me to use refresh drops every 2 hours and refresh pm at bedtime but dont see NO cahnge they keep measuring the same, What would you suggest that I try im at my wits end I want to feel and look normal again and not like a freak Thank You! I am 46 yrs old
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