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MedHelp Member's Question

graves disease, took the radioactive iodine pill, now have double vision

by feeling alone, Apr 22, 2007 12:00AM
I have Graves Disease, I am now experiencing double vision and I am out of work at my new job.

I can't drive, see right.  

I am doing muscle excersises right now. I may get steriods which I am really afraid of.

If someone who experienced this or who can give me advice.

All I do right now is cry.

Please help
Member Comments (10)

by tm514, Apr 22, 2007 12:00AM
To: feeling alone
I am sorry you are having so much trouble with your eyes.  I, too, have Graves Disease, and the eye problems that sometimes comes along with the thyroid problems.  

Unfortunately, until your thyroid levels are under control, there isn't much in the way of permanent repairs that many doctors will do for your eyes.   Most like to have thyroid levels controlled and the eye disease in a state where no changes have occurred for several months before they will consider surgery to correct.  Hopefully, you are seeing a good opthamologist who treats many cases of Graves Eye Disease every year.  Most teaching hospitals will have one on staff.  Has your doctor suggestion prisms?  I understand they help mitigate the double vision in many cases.  

My doctor skipped past the exercises and steroids and opted for surgery after he followed me for six months.  I opted for thyroidectomy a year ago to treat my Graves, and had an easy time with the surgery and getting my levels adjusted correctly, unlike many who have gone down that road.  I didn't do RAI.

I had bilateral orbital decompression six weeks ago, and have seen some improvement already.  In another 3 months, I will go back to the doctor to consider the upper lid repairs necessary to finish the job - after that, hopefully my eyes will close all the way at night and they terrible dryness will go away.  I only have double vision when I look up, so it isn't life altering like yours.  I do find this disease reminds me constantly that patience is going to be necessary to get through it.  

I understand about the crying all the time - that was me two years ago.  I know now that some of it was related to whacked out thyroid levels and the anti-thyroid medications I was taking.  Life is much better now.   Hang in there.  Find another eye doctor if you aren't comfortable with the one you have now.  Good Luck.
  

by ChitChatNIne, Apr 23, 2007 12:00AM
To: FeelingAlone
I just wanted to say we are here for you; I don't have personal exp. with what you are dealing with right now but post anytime .. we are here.  

Cheryl

by feeling alone, Apr 24, 2007 12:00AM
Thank you both so much.  I am supoose to have a excellant eye dr for Graves disease.   The eye dr. doesn.t want me to prisms right now I guess.  He said my eyes will be changing.  I have to back on Friday. He might have me start steriods. Which I am really scared of.

I was so clueless about the eyes.  I was diagnosed with Graves Disease 6 years ago.  Thought I was crazy with what was going on with me.  Was very lucky.  I was put on Tapizol and was down to 5 mg. My eyes were treated for dryness, and they got better.

I have a new Endroconlogist and she suggested the RAI pill and I didn't want to do that, cause that scared me also.  But she said that Tapizal was not meant to be on forever.  So in November I took that pill, and my numbers are still not there.  I am still hyper and I guess over medicated.  So they just lowered the dosage now to 125.  I lost my job end of January, and just started another one at the end of Febuary.  My sight started getting funny when I was driving.  Then now its everything I look at.

I am really scared..  Its hard when you talk to your friends or your family cause they really don't understand.

I don't know to say okay to the steriods or what I have been reading on the surgery.  I don't even understand decompression (I think thats the word)

If anyone can help me out there I would be so grateful.

Thanks,

feeling alone

by tm514, Apr 24, 2007 12:00AM
To: feeling alone
The steroids are supposed to help shrink the affected tissue behind the eyes, but I can't say from experience if it works or not.

To give you a general idea of what is happening, your thyroid/Graves disease is caused by antibodies attacking you thyroid causing it to over-produce thyroid hormones - hyperthyrodism.  Those antibodies have "cousins" that attack the muscles behind the eyes in some people, and cause fat to be deposited in the muscles.  The fat in the muscles is what causes the eyes to protrued out of the sockets in many cases, and I believe is what causes the double vision because your eyes don't line up correctly.

Orbital decompression surgery usually does 2 things - removes fat from the muscles and removes part of the bony orbit around the eye so the tissue has some place to fall back into.  Surprisingly, while this sounds like it is very painful, I found it to be not bad at all - just a couple of headaches, driving the next day, back to work after the weekend off.  Sometimes this surgery causes double vision, sometimes not.  If double vision occurs, there is a second surgery to re-align the muscles.  They will not normally fix double vision until after the orbital decompression surgery.  There is a third phase of the surgery to correct any eye lid defects (Graves eye disease patients usually have upper eye lids that are pulled back, so the eyelids don't close all the way).  

Hang in there.  If you are working for a good company, they should understand why you are out of work.  Hopefully your friends and family are supportive, even if they are clueless.  At least, you can come here to find support - all they people on this forum seem to be fantastic!  

by feeling alone, Apr 24, 2007 12:00AM
To: tm514
Hi,

Thank you.

Can you tell me what is the surgery about.

I have the double vision now so will the surgery help me at this point?

I wonder if I should ask to have the surgery or take the steroids?

I wonder how long I will be out of work.  I just started this job in February and how long will they hold my job.  There is so much there to learn and the screens are small and I am on it all day.

Money hasn't come in yet.

Thanks again everyone.

by tm514, Apr 24, 2007 12:00AM
To: feeling alone
The common thinking on orbital decompression surgery is to do it after the eyes have stabilized - meaning, the eyes haven't changed for at least six months.  I don't remember how recently you began having the double vision, so you might have to wait a while for surgery.  At this point, you may have no choice but to see if the steriods help.  Also, your thyroid levels need to be stable and in the normal range.

My surgery