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Old 08-30-2004, 08:45 AM   #1
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Eye disease after RAI with Graves Disease!

I am feeling rather FRUSTRATED these days. I had experienced nerve compression (most likely related to Graves) and then started having problems with my eyes. I saw my regular doctor last Wednesday and as she stated my eyes were "QUITE Impressive". She felt I probably was experiencing Graves Eye Disease as well as an allergy in my EYES only. She prescibed eye drops and an oral antihistamine and told me to see an OPTHAMOLOGIST if my eyes were not better in a couple of days. I saw about 30% improvement, but yesterday at church everyone kept asking me what was wrong with my eyes and told me they looked TERRIBLE. I am scheduled to see an OPTHAMOLOGIST tomorrow. Has anyone experienced extremely swollen eyes as a result of GRAVES or RAI? Did it clear up? Any advice would be helpful. I also went back on Antidepressants, because I was REALLY spiralling DOWNWARD Emotionally! All I have to do to feel really BAD is look in the mirror and with my Fatigue levels, Life is really rough! I go for labs this week and hopefully I will be improving although I had the RAI in early June!

Last edited by hyperone; 08-30-2004 at 08:46 AM.

 
Old 08-30-2004, 09:05 AM   #2
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Re: Eye disease after RAI with Graves Disease!

Quote:
Originally Posted by hyperone
I am feeling rather FRUSTRATED these days. I had experienced nerve compression (most likely related to Graves) and then started having problems with my eyes. I saw my regular doctor last Wednesday and as she stated my eyes were "QUITE Impressive". She felt I probably was experiencing Graves Eye Disease as well as an allergy in my EYES only. She prescibed eye drops and an oral antihistamine and told me to see an OPTHAMOLOGIST if my eyes were not better in a couple of days. I saw about 30% improvement, but yesterday at church everyone kept asking me what was wrong with my eyes and told me they looked TERRIBLE. I am scheduled to see an OPTHAMOLOGIST tomorrow. Has anyone experienced extremely swollen eyes as a result of GRAVES or RAI? Did it clear up? Any advice would be helpful. I also went back on Antidepressants, because I was REALLY spiralling DOWNWARD Emotionally! All I have to do to feel really BAD is look in the mirror and with my Fatigue levels, Life is really rough! I go for labs this week and hopefully I will be improving although I had the RAI in early June!
I have Grave Eye Disease. When I was diagnosed with graves in 2002 my eyes were bulging and my eyesight got worse. It seems like being on the PTU for so long has helped. My problem now is I have worsening vision and very dry eyes. I usually use artificial moisture eye drops. Use to I would use the nightime salve(I forgot the name of it). It seemed to really help. The only problems is that you can't see very well after you squirt the gooey stuff in that looks like melted vaseline.

I wear glasses with prisms(which was hard to get use to). The RAI didn't seem to effect my eyes any. That's about all I can tell you. Good luck!!

 
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Old 08-30-2004, 09:32 AM   #3
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Re: Eye disease after RAI with Graves Disease!

I forgot to add that I am now hypo but I might still have graves disease antibodies.

 
Old 08-30-2004, 12:31 PM   #4
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Re: Eye disease after RAI with Graves Disease!

I had Graves Eye Disease when I was diagnosed w/ a hyperactive thyroid. It is actually what made me go to the doctor. I had RAI done in November of 2002 and it was probably 2-3 months later that my eyes were remarkably improved. I was also hypo at that point too.

 
Old 08-30-2004, 04:04 PM   #5
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Re: Eye disease after RAI with Graves Disease!

It is documented in the medical literature that RAI ablation can worsen or trigger Thyroid Eye Disease (TED). Because of this, it is contraindicated for anyone with TED to have RAI. Patients that already show symptoms of eye involvement should be given a course of steroids before and after the RAI to attempt to protect the eyes.

TED is also caused by antibodies. RAI stimulates these antibodies and your body makes more of them (that is why the steroids seem to help).

The state of hypothyroidism can also worsen TED symptoms as with hypo there is usually water retention and edema (swelling).

Not all opthalmologists know/understand TED. I hope you get one that has some experience with it. It's quite common to be misdiagnosed as "allergies".

I know someone who successfully sued her Endo because he gave her RAI when she had obvious TED prior to the RAI.

I'm very sorry that you are going through this. Normal, stable thyroid levels should help a little bit....and others with TED swear by flax seed oil as a supplement.
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Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 08-31-2004, 02:29 PM   #6
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Re: Eye disease after RAI with Graves Disease!

Thanks for the info! I saw the opthamologist today. He said that GED can start before, during or after RAI. He is considering putting me on steroids, but wants to see where my thyroid numbers are this week. ( I go on Thurs.) He said there are side effects as well for the steroids. If they get any worse or if I have double vision then wants to see me immediately to consult with the endocrinologist.

Last edited by hyperone; 09-03-2004 at 08:23 PM.

 
Old 09-03-2004, 08:28 PM   #7
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Re: Eye disease after RAI with Graves Disease!

Thought I would post an update! I went for labs yesterday and was scheduled to see the ENDO next week. Today he left messages for me to call him ASAP even after hours. In 4 weeks, my TSH went from .01 to 39. I had gone hypo from hyper! He feels that this is why I started experiencing severe problems with my eyes. He called in Synthroid and says he will adjust my synthroid levels upward and give me a med plan for the next month. He says he can't promise, but believes that this should help my eyes greatly! I am so Excited that finally maybe things will IMPROVE!!!!

 
Old 09-04-2004, 10:27 AM   #8
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Re: Eye disease after RAI with Graves Disease!

My goodness when my tsh was 20.575 I felt awful. I can imagine how you feel.HANG IN THERE!!!!

 
Old 09-06-2004, 03:16 PM   #9
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Re: Eye disease after RAI with Graves Disease!

Don't mean to scare you Jaz, but another online friend who "thought" and had been told she had TED for the last 4 years just found out that her eye issues were actually a cancerous tumor behind her eye.

If you have not had a CT scan of your eyes/orbits, maybe you should request one.

TSI antibodies are positive in cases of TED...these are the antibodies that cause the eye disease as well as Graves disease. (Thyroid Stimulating Immunoglobulins) I would think that a positive TSI would/could confirm TED as well.

Best of luck to you.
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Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
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