Total Thyroid Removal and still dealing with Double Vision

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.

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.

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.

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.

Thanks for explaining this better.  I will certainly look into it.

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.