thyroid eye disease and graves

January 5, 2006

Hi all

I am a new member - just logged on and wondering if anyone has any

advice for me? In Feb. 2004 I had radioiodine treatment due to

Graves Disease. About 3 weeks after treatment of my thyroid, I

experienced severe swelling around my eyes - thought I had taken a

severe allergic reaction. After many doctor's visits (was out of

town skiing when first occurred), I was finally diagnosed with

graves eye disease. Had never heard of it till then - was never

told that I could develop this - believe it is associated to the

radioiodine treatment as it occurred just after my treatment - had

no symptoms of an eye disease prior to the radioiodine. The

swelling has never actually gone away (although it lessened the

summer of 2004) then worsened, and has stayed about the same since -

almost two years now. The endo and eye specialist that I saw really

had no suggestions for me - said would run its course (about 3 yrs),

use tear drops, raise head when sleeping, ice eyes for swelling.

Neither dr could give me anything that really worked to stop

continual swelling appearance, and I have been told that the

swelling will never go away even once the condition has subsided.

It has actually changed my appearance - so much swelling especially

above - up to my eyebrows, and from the sides - the eyelids really

protrude. I have suffered with this eye condition (swelling around

top and bottom, extreme dryness, problems focusing, sore/at times

painful eyes) for almost 2 years now. I use a tremendous amount of

tear drops - throughout day and night - keep them in business (ha!),

as they are very expensive - with the amt that I use. Other than my

eye condition, I have not felt really sick with my thyroid

condition, although my TSH level has jumped from hypo to hyper about

four times - I am now on .075mg of levothyroxine. I have tried to

read as much as I can about this eye disease - but have not been

able to come up with anything that will stop the swelling, help with

tear production, etc. Would anyone on this site have any knowledge

of this eye condition that might help me? I am not that familiar

with the site, but I wonder also if there are archives of postings

about thyroid eye disease - not sure how to bring that up yet. Any

help would be appreciated - thanks for your help in this matter.

Barb

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