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

[feeling alone]

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

[Smilerdeb]

I have Graves and had RAI...the tearing of the eyes came a few weeks after RAI (June 2008) but it is only now on the odd occassion that my eyes water and usually it is when it is summer or when my antibodies flare up (usually under stress).
I have had my eyes checked by an Opthamologist to be told I do not have TED.
I wouldnt be having no operation until I got at least 3 opinions from Opthamologists that I have TED (thyroid eye disease) and anyone who has any sign of TED...should NOT have RAI.
As I said...the tearing of the eyes is a side effect of Graves.
It all depends on just how severe it is and if it causes other symptoms.

[gravesdisease]

Hi, how is it going. I am very glad I have come across this site and I have read many people input on this unfortunate disease. Your post was very similar to my situation.  I was diagnosed with graves disease in 2001 and took the RAI in 2003 and ever since then I have been on Synthroide and recently changed it to the generic version(Levothyroxine). My eyes did start bulging out a little and my eye lids and the surrounding area of the eye have become fatter.  I have gotten floaters in the past but they have not persisted to become bothersome. I also have had black spots in my vision and not too long ago when I used to work while attending college, I got them more often than now. I do not have a double vision although I do have a little trouble with far sight which maybe due to the fact that I have studied alot.  Recently my eyes have been itching and watering and get a burning sensation when I close my eyes which would cause it to water.  I am becoming worry about this problem. I believe this is due to the fact that my eyes dont close fully at nights as this has been confirmed by my mom.  I have seen an Opthamologist in the past who has specialized in many patients with graves disease. His name is Dr. Sawar Bose who works at the UC Irvine Medical Plaza (Gotchak) . He was said to be a good Dr. but that was different from what I perceived.  He saw me few times and he told me that patients with grave disease will go through a period of time where their eyes will suffer from these symptoms and it will gradually go back to normal but he also noted that the time frame is different from patient to patient.  He insisted that I do not need surgery and he told me that he will never nor let anyone perform surgery on me because I was not in need of one. He gave me eye drops one time and another tme he gave me some pills called Iboprohine which would prevent inflimmation but I did not take them since I did not believe he was a good Dr.  I have recently grauted college and moved back to Maryland. I am in the process of finding a doctor in the John Hopkins Hospital since someone had mention that teaching hospitals have good doctors or know of good Drs. since most of them are doing research in a specialized area. I hope that my eyes can go back to normal without a surgery but if the Deocompression surgery is without any serious side effects I will consider it only if the doctor would suggest and agree. Otherwise I would have to deal with how my eyes look. They dont look that bad but certainly not how they used too. I wish you all the best in coping with this unfortuanate disease. please email me if anyone has any questions and I am open to others talks and inputs.

[firegirlto]

I also have graves disease and have had it 12 years, i have taken RAI, and it worked fine for me. graves is a auto immune disease. and i to have graves of the eyes, i have had a retraction of the eyelid, and radiation on my eyes. and still at this time i continue to have problems with my eye sight. and alot of eye pain and dry eyes. i am now going to a new eye doctor and need to have the decompression done. I hope after this things well get back to normal with my eyes. I don't know if anyone else has high blood pressure due to there graves or not, but I do and its very hard to control, and i have taken just about every meds they make for high bp, im running out of options here and have been told this from my many doctors. does anyone else have this problem?

[Mike409]

I was diagnosed with graves disease in 2001. I took the radio-active iodine and have been taking synthroid ever since. After much effort, I finally am taking the right doseage and have had normal levels for the past 2 years. Approximately 4 years ago, my eyes began to bulge. I have constant dry eyes and recently began to see floaters. This is a very hard disease to cope with and maintain a job that can not be done without good vision. I am considering orbital decompression, but am having a hard time finding a good doctor in my area. I live in Fort Lauderdale. Does anyone know where to find a doctor that specializes in this field in my area? I have seen a few, but I don't feel like I am getting the right treatment. When I explained about my floaters, the doctor just gave me some eye drops and said that he can't do anything... Any info on a good doctor would be appreciated.

[jute]

I also have graves, 4-1/2 years ago I took Iodine Radiation Tab. It's now been 4 years I have lived with Double Vision and it's not fun. Not only do I have Double Vision I can't see things far away or close up and watching TV that's a real treat having to keep one of your eyes covered with your hand, Funny it seems to work no matter what eye I cover. O and I for got to mention one of my eyes look bigger than the other. (SEXY). Tilting my head works for a little bit, then by the time my head is ready to hit the ground and I have a pain in my neck I relize it's not working anymore. When I was young I used to say I bet I could put my make-up on in the dark, good thing I got in all that experence cause now the lights are on but I can't focus enough to see to apply it so I apply my make up by experence instead of site. I can use the curling Iron on the left side of my hair but I can't do the rightside. I could use those hard curlers if I was bald on top of my head as soon as I even attempt to raise my eyes up Seeing straight is history. And driving I just have one thing to say if your ever in California keep you double visioned eyeballs on the look out for a black 4 door Mercedes with tinted windows, you'll know it's me if I cut you off or pull out in front of you, but it's not my fault it nature taking over my body. Mybe thats why it's called Graves cause if I keep driving thats where I'll end up. To all my fellow Double Visioned Eyeballers I would say keep your chin up but as we all know that would be the last thing you would do, Look on the sunny side, that will hurt and make our eyes water. How about laugh, things could be worse. Could'nt it?????  I gotta go my head has reached the floor now and it stopped working once again. Judy & Peanut

[syro]

i too have been recently diognosed with graves disease and i went and seen a dr who told me too that i should have steriod treatment for my eyes and i can't wait if it helps i am willing to try anything to get my life back i still have to take 12 tablets of mercozole a day and blood tests every 2 weeks untill i get near normal levels so i can have radiation tab i had been sick for around 1 year and was so scared to go to doctor my leg weakness was that bad i can't climb stairs properly and i had the shakes that bad and my eyes feel like they will pop, everything is starting to slowly get better but you are right it does make you feel so lonely .

[Laurakb]

HI tm514 & feeling alone
I have got graves and I had a total thyroidectomy in August 07, since then I have noticed I have one eye that is bulging, this seems to have happended in the last couple of months.  I thought once my thyroid had gone this would all be ok. Am I right in thinking that the graves is still active and attacking my eye muscles? I have not seen any eye doctors and  have only seen my GP since the op. I am in the UK so I can't see anyone without my GP referring me.  Please both, can you tell me more about the eye thing?  I sometimes feel like I have a film of something over my eye, is that the graves too?

[kdawg1966]

Go to the web page www.optimox.com and read the iodine research articles.  If you are like me, you won't be able to stop reading these articles - they are so very informative and revealing for people with thyroid problems.  

Good luck

[tm514]

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 was done by an opthalmic plastic surgeon.  He made small incisions in the outside corner of each eye, went in above the eye under the upper lid to remove fat from the muscles, went in below the eye under the lower lid to take bone out of both eye sockets.  Most of the incisions were made inside the lower eyelid and were sutured with disolvable sutures.  I doubt I had more than 3 stitches on each side that showed and the scars aren't noticeable if you don't know they are there.  I had two impressive black eyes for a week and some swelling for a couple of weeks.  I did have a short course of prednisone (a steroid) a week after the surgery to help diminish the swelling.  As I said, I thought it would hurt a lot, but I didn't have much pain at all.  The only lasting effect is a slightly numb nose on one side - the nerves for the nose run right under the eye socket.  

I had thought I would be free of the ointment at night and the eye drops by day.  Alas, I am still using both, but have to remind myself it could be worse and to be patient.  I find it difficult at times, but at least I am healthy and am not battling some life threatening disease.  

Good luck with the job, it doesn't seem like they could not hold your job if you are out on disability, but I don't know much about disability laws, and I think they vary by state.  In the long run, if they don't hold your job, you might be better off with a different company, but that is easy for me to say and a lot harder for you to do.

[feeling alone]

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.

[feeling alone]

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

[tm514]

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!  

[ChitChatNine]

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

[tm514]

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.