Jpruitt87June 9, 2019 at 6:35 pmPost count: 1
Hi all! I’m so glad I finally found a support forum! So I’m 1 year post surgery of having my thyroid out. My first sign was my legs got swollen, after many sleepless nights and doctors appointments leading no where I ended up in the ER with a HR of 174 and I couldn’t see. I couldn’t see, I was hot one minute cold the next. After having my thyroid taken out I felt more normal. I was put on 125 mcg of levo. I gained about 30 lbs over about 6 months. I had gotten to the point of only eating one meal a day trying to not gain weight. Diets and excessive don’t help. I went back to my endo and my TSH was elevated to an 8, when I was first diagnosed it was up to 24! He upped my dose slightly. However for the past few weeks I have had trouble sleeping and when I wake up I have double vision. Last a few mins to up to 1 hour. Looking far left and right and up hurts. My right eye has started to bulge slightly, they feel dry at times and my vision seems blurry at times. I scheduled an appointment with the ophthalmologist this coming Friday and I’m scared. I don’t want to loose my vision and I don’t want to have to have surgery on my eyes. Will this go away on it’s on or will I have to have surgery? What test should I have? How fast does it can this progress? What can I do to help? I thought after taking my thyroid out I wouldn’t have anymore problems. Is that not true? Did that not heal my Graves’ disease?
Funny note.. my fiancé last name is Graves!! Meant to be!
Thanks for any and all advice!!KimberlyOnline FacilitatorJune 11, 2019 at 8:46 amPost count: 4269
Hello and welcome – perhaps your fiance is related to Sir Robert Graves, an Irish physician who was one of the early researchers to describe the signs and symptoms of Graves’ disease!
Surgery corrects the *hyperthyroidism* due to Graves’ disease, but does not cure the underlying autoimmune issue, which is why you can still have eye issues after thyroidectomy.
Your ophthalmologist will likely run a number of simple tests to check your vision and assess how well your eye muscles are moving. He or she might also order a CT scan. This is a great overview of thyroid eye disease from University of Michigan Kellogg Eye Center
Loss of vision is very, very rare these days with Graves’. If there is compression of the optic nerve, emergency decompression surgery can save your vision. (Changes in how you see colors are an early warning sign – for example something red like a Coke can starts to look more brown.)
Hopefully, you have a followup with your doctor within a few weeks of adjusting the dose of levothyroxine. Being hyper or hypo is a risk factor for thyroid eye disease. The other thing you can do on your own is to avoid smoking and second-hand smoke.
Wishing you all the best!Liz1967June 13, 2019 at 4:39 amPost count: 305
Thyroidectomy does make it much less likely to get the eye disease, but it does happen. Having had TED and undergone multiple eye surgeries, my advice would be to find an oculoplastic surgeon who is very familiar with Graves. This ophthalmologist would be the one managing your care should the eye disease progress. This may mean travel to a larger city or a university based medical center, but experience with thyroid eye disease is vital. The most important decision you will make is your choice of ophthalmologist. This disease does its own thing and about all you can do is be patient and find the most experienced eye docs you can.
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