Total Thyroid Removal and still dealing with Double Vision

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I was diagnosed with a hyperthyroid and Graves in Jan/13.  I was on meds and it didn't help so April/14 I had a total thyroid removal. My double vision issues began in Feb 2014 and thyroid was out 2 months later.  It has been 3 months since my thyroid was removed and 6 months total of double vision issues.  Only my left eye has the swollen and bulgy appearance which is embarrassing for me that my two eyes don't physically match.  Has anybody out their had their buggy eyes calm down after a total thyroidectomy and if so, how long after the surgery did you see a difference. Also, has anyone ever had double vision before a thyroidectomy and than after, have their vision restore to normal over time?  I have looked and looked on the web for anybody who has had their double vision clear up and just can't find anything on it.  Thanks for your time.  I pray I can lead a somewhat normal life again.

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  • Posted

    Hi Melissa,

    I have heard that Graves thyroid eye disease and Graves disease are two separate autoimmune conditions and the treatment of the thyroid problem with surgery or radiation does not treat the eye disease. Not all patients with Graves disease will get the eye problems you have. For myself, I had dry eyes, red eyes and irritated eyes which are now a lot better after treatment with antithryoid drugs. Many people with the eye problems you have see a special ocular plastic surgeon to have it corrected. If you Google the following title - Orbital Decompression for Graves Disease - Medscape Reference or Management of Graves Ophthalmopathy, you will find more information about medical and surgical treatment of Graves eyes disease. The surgical treatments are quite successful I hear at the hands of a skilled oculo plastic surgeon. Do your research and ask a lot of questions. Keep us posted and best wishes for a successful recovery.

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    • Posted

      I actually did see a reconstructive plastic surgeon and double vision surgeon in April.  The plastic surgery Dr that specializes in Graves said he wouldn't even consider surgery on my eyes for 7 months since my eyes were still changing and he knew I was having my thyroid totally removed. On a scale of 1-10 he rated my eye a 2 for physical appearance.  The double vision surgeon said my vision wasn't bad enough to warrant a surgery since the surgery is a risky thing.  He gave me a prescription for lenses with prisims. i got the glasses and lasted 3 days in them.  my vision seemed even more screwed up with those.  I told my husband I would rather be dead than have to have an awful quality of life wearing those.  I couldn't even drive in them.  My Opto prescribed regular, progressive elnses that are helping me manage.  I know surgery isn't an option so I am wondering if my eye can calm down and go back into place so my pupil can line up with my other eye and see normal again.  The specialist wouldn't say yes or no.  I ge that he didn't want to guess. I am just wondering if anybody has seen double and than had it correct itself after a thyroidectomy.
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    • Posted

      I would get another opinion just to be sure. You might try getting your Carnitine level checked. Most of us who have had Graves have carnitine deficiency. If you are deficient, you can take the Carnitine. For our Graves disease, many of us are taking Regular L-Carnitine and Acetyl-L-Carnitine in addition to our antithyroid meds. Though you had surgery for the excessive thyroid hormones, if you are carnitine deficient, replacing this might settle the inflammation down and improve your vision. If you are now euthyroid (i.e. your thyroid hormones are normal), then you would not want to take any higher than 500 mg of each. It won't hurt you and it might help. Only contraindication is if you have seizures and are on antiseizure medication.
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    • Posted

      I just read online on WebMD that taking L-carnitine might make symptoms of hypothyroidism worse. Since I take synthroid for a hypothyroid now that mine is out, I might not want to do that. It also said that there is some concern that acetyl-L-carnitine might interfere with thyroid hormone. Don’t use acetyl-L-carnitine if you have an under-active thyroid. My thyroid is now underactive so I am afraid these two options may not help.  thanks anyway for the suggestions.
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    • Posted

      Yes that's why I suggested you get your Carnitine level measured before considering taking it. People who have hyperthyroidism lose Carnitine from their muscles. Eventhough you had treatment, you may not have replaced your lost carnitine from when you were hyperthyroid. There is an article by Dr. Christopher Sinclair in the Journal Muscle Nerve 32: 357–359, 2005 entitled Muscle carnitine in Hyper and Hypothyroidism. He notes that there are carnitine abnormalities also in hypothyroid patients but not as much as in hyperthyroid patients. Getting the blood test done will let you know where your carnitine level stands. People who are euthyroid (i.e. normal thyroid) would not usually have carnitine deficiencies.
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  • Posted

    I was first diagnosed with an overactive thyroid  41years ago i had one swollen eye but no double vision. My consultant put me on carbimazole and thyroxine. They stitched the outer corner of my eye together to improve the appearance. After about a year the swelling had reduced and i had no further problems until about three years ago when i noticed i was getting double vision. I have been going to the eye clinic at my local hospital every 3 months ever since. I had an operation which they do for people with squints to get my eyes to move in cinq with each other. It seemed to work for a short time but i am still suffering from double vision  and seem to be getting worse All my thyroid levels are inside the normal range so not quite sure what options i have left   as i have no intention of having my thyroid removed  like u i am totally fed up with it all
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    • Posted

      Sorry to hear of your eye troubles, Lynn.  My endo didn't really explain to me well that when I was diagnosed with a hyperthyroid and Graves eye disease that the Graves is an autominune disorder that caused my thyroid to become hyper, therefore it was like my body wanted my thyroid outta there because it treats it like a foreign body.  My eye stecialist said that the best thing I could do for my Graves was to have my thyroid totally removed because their is a weird connection between Graves and the thyroid that doctors have never really been able to figure out.  He said my eyes may calm down once it was removed and not to do the Iodine treatment.  The iodine treatment actually aggrivates Graves.  Having my thyroid totally emoved in April was a breeze.  I feel great, have lots of energy, I know it isn't in there aggrivating my eyes anymore and I take 100 mcg of synthroid a day.  I took my usual 5 mile a day walk three days after the surgery.  As far as having your thyroid removed, don't be afraid of that procedure if it should come to that.  That was the easiest fix for me.  Now I am just trying to be patient to see if my eyes will improve and was hoping if anyone out there had the same issues, that they could shed some light on it. Since your thyroid levels are inside the normal range, it probably won't help to have yours removed.  Are you on meds to keep your levels at a normal range? because my doctor said that long term use of meds to keep your thyroid levels at a healthy range are not good. That is why we had to remove mine too.  We couldn't get the levels to the normal level and just take me off the meds.  I have good days and bad.  If people could just crawl inside my head and see what I see when my glasses are off, they would see a blurry scrambled up mess.  I honestly like when it is time to go to sleep because then my eyes are closed and it is just dark.  This can be very depressing but I try to stay positive and thankful that this isn't life threatening and their are people in this world with far bigger problems than me.  I pray to God everyday that if it is His will to heal me of this, than His will be done.  I really feel like all I have left to rely on is my faith.  You take care and I will pray for you Lynn.
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  • Posted

    Hi I know this was posted a while ago . I to have double vision and have had for a year and a half. I was curious to see how you are now as I can't find anything on line either. No one can tell me what to expect and some advice from someone else would be great. Many thanks

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