Thyroid Eye Disease (download this page for printing - PDF File)
Thyroid eye disease is an autoimmune condition where your body makes hormones and proteins that cause swelling and scarring of the muscles and tissues around the eye balls.
This condition may occur before, during or after thyroid gland abnormalities. Sometimes in thyroid eye disease the thyroid hormone levels are in the normal range. Sometimes the eye disease presents many years after a bout of thyroid hormone imbalance. The immune system connects the eyes and the thyroid gland. The immune system can attack the eye muscles and the thyroid gland causing the gland to malfunction. Usually the gland overproduces thyroid hormone that in turn can lead to tremors, shakes, weight loss, rapid heart beat or palpitations, nervousness, and sensitivity to heat. Less commonly the thyroid gland produces low levels of hormones causing fatigue, constipation, weight gain, dry skin and hair or even swelling in the body. Antibodies to the thyroid gland can be looked for in a simple blood test.
Thyroid eye disease can result in bulging of the eyes (proptosis), retraction of the lids, double vision, decreased vision, “bags” under the eyes, puffy upper lids as well as red & sore eyes.
Thyroid eye disease has an ACTIVE phase and an INACTIVE phase. The active phase typically last from 6 months to 2 years after the onset of symptoms. During this stage the eyes and surrounding tissues may be actively changing. The eyes may progressively bulge, double vision may occur and get worse or improve and the vision may decrease in one or both eyes. It is important to get regular check-ups to test your vision and color vision during this phase. We usually recommend at least every 3 months. Also if you notice any change in your vision, you must call your ophthalmologist and make an urgent appointment. Sometimes swelling behind the eye can push on the optic nerve (vision nerve) and damage it. Vision loss may be reversible with TIMELY treatment with medication, radiation treatment or surgery
Patients with thyroid eye disease can have any of the following symptoms:
- Eye pain and strain
- Tight or pulling sensation when looking up, down or side
- Double vision that varies with direction of gaze
- Red, tearing irritated eyes
- Bulging of one or both eyes
- Uneven eyelids
- Bags around the eyes / “tired appearance”
- Loss of vision in one or both eyes (THIS IS AN EMERGENCY)
The active phase will often resolve after 2 years. During the active phase regular eye exams are essential. However, the tissue changes that occurred during the active phase are usually permanent. During the active phase the eyes can be treated with lubricants, prism glasses and sometimes oral prednisone and /or radiation. Sometimes surgery is required to reverse vision loss or protect the eye’s surface in the case of severe disease. Once the active phase has “burned out”, the rehabilitation process begins. Several surgeries can be done to restore some function and cosmesis. Orbital surgery involves setting the eyes back in the orbits by debulking orbital tissue and removing some orbital bones. Strabismus surgery can help with double vision and ocular misalignment. Eyelid surgery can increase the comfort of the eyes and improve the appearance of puffy and uneven eyelids.
Thyroid eye disease and smoking:
Smoking can worsen thyroid eye disease and lead to permanent vision loss. It is important to inform your ophthalmologist if you smoke. Smoking cessation programs and support organizations may be helpful. These can be accessed through the Calgary Health Region.
Frequently asked questions (adapted from Queen’s university website…)
The doctors tell me they fixed my thyroid problem and that it is now normal. Why are my eyes acting up?
In Graves' disease the thyroid gland is stimulated by the immune system to secrete too much thyroid hormone. Treatment is aimed at regulating this excess hormone. Regulation does not prevent the underlying autoimmune process from targeting the tissues around the eyes and causing them to swell and become inflamed and scarred. Although regulated thyroid hormones are good for the eyes in general, dysthyroid orbitopathy can worsen with radioactive iodine treatment.
The steroids made my eyes much more comfortable. Can't I just continue taking them?
Steroid therapy may be effective in halting the inflammatory phase of thyroid orbitopathy and partially shrinking the muscle swelling. This can sometimes treat pressure on the optic nerve and restore vision. Steroid side effects are very common and increase with longer durations of treatment. Sometimes radiation therapy or surgery needs to be an alternative to long term steroid use. If you are TAKING STEROIDS / PREDNISONE, DO NOT stop the medication all of a sudden as this can make you quite ill. If you physician feels you are ready to come off the medication, this must be done slowly in a stepwise fashion to prevent illness.
Why can't you fix my eyelids now?
Usually eyelids are the final touch of the surgical rehabilitation of TRO. To avoid extra surgeries and excess scar tissue, the eyelids are address after surgery for the orbit and eye muscles as both of these procedures can affect the eyelid position. Sometimes minor eyelid procedures to help the eye close properly are done sooner to preserve the health of the eye’s surface (especially here in Calgary where the air is SO dry)
Can you put my eyes back where they were?
We can reduce the bulging of your eyes by doing orbital decompressive surgery. This is major surgery and involves removing soft tissue and bone from the orbit. It often requires an overnight stay in hospital and can be quite sore. We usually reserve this type of surgery for patients who are at high risk for permanent vision loss due to pressure buildup in the orbit. There are side effects including bruising, double vision, permanent facial numbness, uneven appearance and even blindness as well as reactions to the general anesthetic. Sometimes eyelid surgery which is much less invasive can really reduce the bulging appearance without actually moving the eyes back.