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 GRAVES' EYE DISEASE
(Thyroid-Associated Ophthalmopathy)
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The eye disease which sometimes accompanies the hyperthyroidism of Graves' disease is a related (but separate) issue for the patient.  Treating the thyroid may not improve the course of the eye disease, though having abnormal thyroid levels can make it worse. 

It's possible to have the eye disease with normal thyroid levels (euthyroid Graves' Disease), or occasionally with hypothyroidism.  For that reason, the preferred name is now Thyroid-Associated Ophthalmopathy (TAO), or Thyroid Eye Disease (TED) rather than Grave's Ophthalmopathy (eye disease).  

The cosmetic disfigurement of TAO may cause emotional distress, and some people react by withdrawing from social situations.   Strangers, associates, friends and family alike may respond differently to people with subtle or grossly disfiguring eye changes, which give negative subconscious messages (such as anger, staring, hostility, etc.).

The eye disease, even in its milder expressions, has a profound impact on the quality of life of affected individuals; who have scores for several Quality of Life measures that are lower than those of patients with diabetes mellitus, pulmonary emphysema, and heart failure, according to Gerding MN, Terwee CB, Dekker FW, Koornneef L, Prummel MF, Wiersinga WM 1997 Quality of life in patients with Graves’ ophthalmopathy is markedly decreased: Measurement by the Medical Outcomes Study Instrument. Thyroid 7:885–889.  Psychosocial function is one of the more difficult issues for people with TAO.

Protrusion of the eyeballs (proptosis) occurs when the antibodies involved in TAO act on the fat and muscle tissues in the orbits of the eye, causing them to scar and swell.  Since this leaves less space for the eyeballs, they are pushed forward, out of the orbit.  In rare cases this process  compresses the optic nerve, threatening vision. 

Some of the swollen fatty tissue behind the eyes may be pushed out into the skin around and below the eyes, causing fatty pads (bags), which is disfiguring--especially when combined with proptosis.  Lid retraction contributes to the "bug-eyed" appearance of TAO, and the eyes may not close completely, especially at night during sleep.  This causes damage to the exposed surfaces and painful inflammation the next day.

The scarred and swollen muscles behind the eye may produce double vision in some (or all) gazes (downward and to the right, for example).   Dryness of the eyeball occurs  from too much exposure of the eye, and causes burning pain, excess tearing, and sensitivity to light.  The cornea may be damaged in severe cases.  The range of vision is often reduced because of scarring and swelling of the eye muscles, resulting in reduced mobility.  Exposure of the eye may cause severe problems caused by dryness, including chemosis (swelling of the membrane covering the eye) and corneal ulcers.

Hyperthyroidism can cause an elevation of the upper eyelids that will disappear following treatment, but in some people the eyelid elevation is caused by shortening of the eyelid muscles caused by scarring and development of excess fibrous tissue (fibrosis), which often must be surgically corrected.  Fibrosis can occur even after the inflammatory phase of the disease has passed.

Not everyone with Graves' disease has obvious eye changes, though medical imaging of the eye muscles usually shows some degree of involvement.  Less than 5% have serious eye disease; so most cases never become severe enough to require treatment.  In time, some degree of improvement is likely for many people.   Smoking is a definite risk factor for having the eye disease, and for having a severe case.   TAO usually appears within 18 months of a diagnosis of Graves' disease (if it does at all), but occasionally it appears before the thyroid is abnormal, or many years after treatment.

The eye disease goes through what is usually called a "hot phase", lasting from six months to two years, during which the condition is inflammatory in nature and the changes in the eyes occur.  After this, it enters what's called the "cold phase", during which the disease is stable.  The changes may even reverse to some degree over a period of years, but seldom do the eyes go back to normal.  The symptom least likely to improve is proptosis.

Unless extremely severe or vision is threatened, the eye disease generally isn't treated while in the "hot phase", except to protect the eyes from dryness and exposure.  Frequent use of eye drops is helpful, and it may be necessary  to use ointment in the eyes at night, and perhaps to tape them closed.  Wearing sunglasses outdoors is a good idea, to protect from sunlight and wind. 

When the disease is severe in the hot phase, the first treatment attempted is generally steroid medication (such as Prednisone) to slow down the immune system, and therefore the autoimmune inflammation.  When this doesn't help, radiation treatments to the eye muscles sometimes help (although current studies on this are conflicting).  Usually the only time surgery is performed in the "hot phase" is when the optic nerve is compressed and vision is threatened.  

Once the disease is stabilized (in the "cold phase"), surgery can help improve eye function and appearance.  When proptosis is severe, orbital decompression may be done.  This involves removing some bones behind the orbits and removing swollen fatty tissue behind the eye, allowing the swollen muscles to recede partially into the sinus cavities (or brain cavity, in the case of lateral decompression), which gives the eyes room to go back in the head.   Strabismus surgery to correct any double vision is done after the decompression has completely healed and stabilized (six months or so).  Finally, surgery may be done to improve eyelid retraction, which usually involves inserting a spacer material to lengthen the eyelid muscles.  In some patients only the upper lids require this surgery, and others need both upper and lower lids corrected.

Surgery restores more normal function of the eyes and a more normal appearance, but usually doesn't restore the eyes to their pre-disease state, either functionally or cosmetically.

* The information in this web site is for educational purposes only and is not providing medical or professional advice. It should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional medical care. If you have or suspect you might have any health problems, you should consult a physician.

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