Common Grave's Eye Disease Symptoms: Eye Ache, Eye Pain, Gritty Eyes, Dry Eyes, Eyelid Retraction, Eye Proptosis/Bulging, Eye Stare, Double Vision, Eyelid Movement, Eye Twitching

By far one of the biggest areas of interest based on pages read on this blog has to do with common eye symptoms of Grave's Disease, or Grave's Ophthalmopathy (GO).  So I thought I'd write a special post dedicated to those symptoms I'm familiar with along with a brief explanation.

Note:  In my case, I experienced every symptom on the list below with the exception of double vision and eye stare. So please feel free to post comments/questions if you need more information.

Eye Ache:  Can be a dull ache (as in my case) or sharp pain in the eye socket area. 

Eye Pain:  Can be the pain behind your eye in the socket, or it can be a painful eye surface caused by excessive dryness caused by eye protrusion and eyelid retraction. 

Gritty Eyes:  It feels like someone threw sand in your eyes.  That's right--a gritty or sandy sensation.  It feels like there is foreign material in your eyes and the sensation just won't go away.  At least it didn't for me for a long while.

Dry Eyes:  When your eyes protrude, a greater portion of the eye's surface area is exposed.  It can be even worse when your upper or lower eyelid retracts as well.  Both cause the eye to become dry.  I had to use eye drops throughout the day, and a heavier gel at night, to keep my eyes moist.  Otherwise you risk damaging the cornea of your eye.  In addition, I had to tape my right eye closed at night to protect it.  I also wore an eye patch (the kind you get from the airlines for overnight travel) to protect my eye.

Eyelid Retraction: It can happen to either the upper or lower eyelid, or both.  They retract or pull back (open wider) and it actually appears that your eyelid itself has shrunk when you look in the mirror.  This also gives the appearance that your eyes look bigger.  In my case, it was much more prominent in my right eye.  It stayed like this for almost two years before resolving on its own.

Eye Proptosis/Bulging:  Your eyes move outward.  Your endocrinologist and eye specialist will use a device called a hertel exophthalmometer which measures how far your eyes protrude forward.  It's important for your doctor to take these measurements and for you to keep a record of these eye measurements over time.  Your eyes may also move outward for some time, move back inward, and outward again, etc.  In addition, the left and right eyes may move at different rates.  The protrusion is caused by swelling behind your eye where your eye muscles are located which pushes the eye itself forward.  Remember, your eye is in a bony socket.  There is no other place for your eye to move but outward.  And that's what it does.

Eye proptosis can start before, during or after your diagnosis with Grave's Disease.  In my case it started in the summer at a time when I had no idea there was anything wrong with me, about five or six months before I was diagnosed with Grave's Disease. 

In my case, my eyes resolved on their own and returned, or receded, to their normal  position.  My upper eyelid retraction also corrected on its own as well.  Others may need corrective surgery when spontaneous resolution of eye protrusion does not occur. 

Most doctors do not perform corrective surgery, known as orbital decompression, within a 30 month span, which according to my eye specialist is the average "active phase" of Grave's Ophthalmopathy.  Otherwise, they risk over-correcting the problem which may resolve on its own.  On the other hand, surgery may not be avoidable if your vision is impaired.  Follow your eye specialist's advice and don't hesitate to ask a lot of questions. 

Finally, the treatment for the underlying Grave's Disease does not affect your eye protrusion.  The eyes run their own separate course.  This was the toughest part for me.  Not knowing for a couple of years whether or not my eyes would ever return to normal.  This is when you have to call on your reserves of patience because you're going to need it.  And of course, you have to do your very best to function normally throughout the day when you know people are just looking at you, and you know exactly what they're thinking.  Patience, patience, patience....but I won't kid you, eye bulging is so hard to come to grips with.  Many who e mail me, especially mothers writing to me about their young children being teased, are often desperate, if not despondent.  We are, after all, human people.  With real feelings, real emotions.

Eye Stare:  When your eyes protrude, and there is swelling behind the eye, it can cause the muscles that control eye movement to not function properly.  This can cause your eye(s) to appear as if you are staring.

Double Vision:  Caused by a disturbance of the optic nerve behind the eye, especially if you have severe proptosis or swelling.  You doctor or eye specialist will always ask you whether or not you have double vision.  I did not so I can't speak to any personal experience but I receive numerous e mails from readers who have and they have posted comments all throughout this blog that may be helpful to you.

Eyelid Movement or Motility:  In my case, my right eyelid went up and down faster than my left eyelid.  In other words, if I opened my eyes slowly, my left eyelid would "lag" my right eyelid.  In one of my photos posted on this blog, I show a picture of me with my left lid closed and my right lid fully open.  And it required zero effort to hold the left lid down.  No squinting.  Just to give you an idea how severe the right eyelid retraction was.  I can still do it today, but my right eyelid opens only about halfway with no effort.  This was the very FIRST symptom that happened to my eyes.  I didn't think anything of it whatsoever.  Be watchful of this one.  It was a sign of worse things to come for me. 

Eye Twitching:  We've all had cases where you get an eyelid twitch.  I had them all the time for awhile. 

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It is well documented that smoking can increase problems associated with Grave's Ophthalmopathy.  Also, you should carefully research potential effects of RAI treatment if you have G.O. as there have been many instances where RAI treatment worsened the eye symptoms in Grave's patients.  I encourage you to visit Elaine Moore's web site (which you can find in the reference left-hand column of this blog)  She is also a well known author on the topic (you can find her books on my site too).