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Thyroid Eye Disease is an autoimmune problem, most commonly noted in patient with a history of either high or low thyroid hormones. The disease initially causes the eyes to become red, swollen, and watery. This initial part of the disease is referred to as the active and inflammatory phase of the disease. During this early phase of the disease patients may benefit from treatments that reduce inflammation such as anti-inflammatory medications or injections and in some cases referral for orbital radiation. In the later part of the disease the eyes may bulge out of the socket, the eyelids may be open too wide, or the patient may have double vision.
Frequently Asked Questions Concerning Graves Disease
Graves’s disease is a disorder that can affect both the thyroid gland and the eye socket. It is an autoimmune disorder. The immune system can attack the thyroid gland resulting in high or low thyroid hormone levels. The immune system can also attack the eye socket resulting protrusion of the eye from the eye socket, widely opened eyelids, and or double vision.
Graves’s disease can affect any age, sex, or race of people. It occurs more commonly in middle aged woman. The eye problems associated with Graves Disease are more severe in elderly male patients and in patients who smoke cigarettes. Graves Disease occurs more commonly in patients who have other autoimmune disorders like diabetes. Problems with the thyroid gland sometimes run in families. Sometimes the disease begins after a period of physical or mental stress.
The problems with the thyroid gland are typically managed by a family practice doctor, an internal medicine doctor, or by a specialist in endocrinology. In some patients the thyroid gland may be surgically removed by a surgeon. The problems with the eyes are managed by an ophthalmologist or by a specialist in ophthalmic plastic surgery. Dr. Lin Yang is board certified in ophthalmology and has a subspecialty in ophthalmic plastic surgery. He works with a team of doctors of related specialties in the management of thyroid gland problems.
The majority of patients with either high or low thyroid gland problems never require eye treatment.
As many as 25% of patients have no problems with the thyroid gland when they are diagnosed with Graves’s eye disease. This is called Euthryoid Grave’s disease. Many are surprised to learn this. However, this makes sense when you realize that Graves’s disease is not caused by abnormal thyroid hormone levels. It is caused by the immune system. The immune system may only attack the thyroid gland or it may only attack the eye socket. It will not necessarily attack both at the same time.
Grave’s Eye Disease
Graves’s disease can cause loss of vision by either damaging the cornea or damaging the optic nerve. Graves’s disease can also cause you to develop double vision. The vast majority of patients who are appropriately diagnosed and treated do not loose vision from this disorder. Those who develop double vision can typically be markedly improved with treatment.
At the onset of the disease it is very common for one eye to be effected more than the other. In some cases it may be so asymmetrical so as to only affect one eye. Graves’s disease is the most common cause of bilateral protrusion of the eyes from the eye socket and it is also the most common cause of unilateral protrusion of an eye from the socket. However, when only one eye is affected it is important to get an MRI or CT scan performed to exclude the possibility of a tumor in the eye socket.
When the immune system attacks the eye muscles in Graves Disease the muscles swell. Swollen eye muscles can cause the two eyes to point in different directions resulting in the sensation of double vision. The double vision is often worse when looking up or to the sides and better when looking down. Double vision should be evaluated promptly by an eye care professional.
Graves’s disease pushes the eyeball forward in the eye socket and also causes the eyelids to open widely. This can create a situation called lagophthalmos where the eyelids do not close completely. If the eyelids do not close normally it causes the cornea to dry out and can contribute to getting an infection or ulceration in the cornea. The initial symptoms of this are a dry sensation on the eye or a feeling of having something in the eye. If the cornea develops an infection or ulceration the eye will typically become quite red and painful. A corneal ulcer is an ophthalmic emergency and should be evaluated by an eye care professional on the day it occurs.
The optic nerve is the nerve that carries vision from the eyeball to the brain. The nerve exits the back of the eye socket at the orbital apex. The nerve is surrounded by the eye muscles at the orbital apex. If the eye muscles are swollen enough they pinch off the optic nerve and can cause loss of vision. When this occurs it is called thyroid related optic neuropathy. Thyroid related optic neuropathy is an ophthalmic emergency and it should be evaluated on the day it occurs.
If you have concerns with your vision for any reason you should be evaluated by an eye care professional. At The Center for Facial Appearances we also recommend that patients with Graves Disease self assess their vision on a daily basis with your spectacles on. This is done by performing two simple tests on a daily basis. First of all cover the left eye and read a paragraph from the newspaper. Repeat the test with the right eye covered. If you note a change in your ability to read the fine text in the newspaper with one or both eyes then call your eye care professional. Also put a red magnet on your refrigerator. Alternately occlude the two eyes and note the color of red. If the magnet begins to look less red in one or both eyes then call your eye care professional.
In some cases the diagnosis is straight forward. For instance, in a patient with a history of abnormal thyroid hormone levels who begin to develop bulging eyes and double vision the diagnosis is fairly easy. In some cases the eye problems will cause the doctor to suspect Graves Disease and a blood test to evaluate the thyroid hormone levels will be ordered. Some patients suspected of having Graves Eye Disease will be found to have normal thyroid hormone levels. In these cases a special test called the anti-TSH receptor antibody test may help in making the diagnosis. It is sometimes useful to obtain a CT scan or MRI scan of the eye socket. If the scan demonstrates enlargement of the eye muscles this is supportive of the diagnosis. If you have had blood test done to evaluate your condition please bring the results to you consultation at The Center for Facial Appearances. If you have had MRI or CT scans done of the orbit please bring the images (the actual film or CD disk) with you to your consultation. Bringing the report prepared by the radiologist is not adequate.
Type I Graves disease is when patients develop bulging forward of the eyes from excess fat in the eye socket but without swelling of the eye muscles. Type II Graves disease is when the eyes bulge forward because of swollen eye muscles. Patients with Type II Graves disease are more likely to have troubles with double vision because of the abnormally large eye muscles.
Staging Graves Disease
The first stage of Graves disease is called the either the ascending stage or the active inflammatory stage of the disease. During the first stage of the disease the symptoms of the disease such as protrusion of the eyes and double vision may get worse. In this stage of the disease use of anti-inflammatory medications may reduce symptoms. The second stage of the disease is the descending stage. In this stage of the disease symptoms tend to partially improve but typically do not improve to normal. The last stage of the disease is the stable stage. About 90% of patients do not have significant changes in their Graves Disease eye symptoms for the rest of their life once they enter the stable stage of the disease. 10% of patients can have what is called reactivation of disease where they enter a 2nd active and inflammatory stage of the disease after achieving the stable stage. Smoking cigarettes can be one thing that triggers reactivation of the disease.
The proper treatment for Graves Disease depends on the stage of disease. Patients in the active and inflammatory stage of the disease may require treatment with anti-inflammatory medications. Most surgeons try to avoid performing surgery during the active and inflammatory stage of the disease. Patients need to be monitored for loss of vision during the active inflammatory stage of the disease because this is when optic neuropathy or trouble closing the eyelids can put a patient at risk for loss of vision. Some patients with Graves disease may need surgery to correct problems caused by Graves disease. Surgery is typically performed during the stable stage of the disease.
Sometimes this can be determined by history. So if your eyes bulged forward many years ago and have not changed in the last year you are probably in the stable stage of the disease. If your eyes were normal 2 months ago and you have noted them becoming more open and bulging forward then you are probably in the active stage of the disease. Red, swollen, and tearing eyes are symptoms associated wit the active inflammatory stage of the disease. Sometimes looking at old photographs can be useful in determining when your eyes changed or for how long they have been stable. Measurements of the eyelids, eye movements, and protrusion of the eye are made when you see your eye doctor. If these measurements are getting worse you are in the active inflammatory stage of the disease. If these measurements are stable for 3-6 months you are in the stable stage of the disease.
Treatment of Graves Disease: Ascending or active inflammatory stage
Use of an artificial tear containing 0.5% carboxymethylcellulose such as Refresh Plus every two hours during the day combined with the use of a lubricating ointment such as Refresh PM just before going to bed at night can reduce symptoms substantially. If your eyes still feel dry with this treatment discuss it with your doctor.
2. What role does prednisone or steroid pills play during the active and inflammatory stage of the disease?
Taking oral steroids reduces symptoms in most patients in the active inflammatory stage of the disease. However, it requires fairly high doses of steroid given for a prolonged period of time. There are many side effects of being on high doses of steroids for a prolonged period of time including: weight gain, high blood pressure, development of diabetes, trouble sleeping, and psychological disturbances.
3. Will radiating my thyroid gland improve my eye symptoms during the active inflammatory stage of the disease?
Radiation of the thyroid gland will reduce your thyroid hormone levels but it has also been associated with worsening eye disease. We feel it is important that the doctor managing your thyroid hormone levels be in communication with the doctor managing your eye disease so a decision can be made on the best treatment. In some patients the thyroid hormone levels can be reduced with anti-thyroid medications such as methimazole (Tapazole) or propythiuracil (PTU). These drugs do not cause worsening of the eye symptoms. In some patients the thyroid hormone levels cannot be controlled with these medications and radiation of the thyroid gland during the active and inflammatory stage of the disease may be unavoidable. In these cases it may be helpful to use steroids before and after the thyroid gland radiation. Another option for controlling the thyroid hormone levels is surgical removal of the thyroid gland. This should be discussed with your team of physicians.
4. Will radiating my eye sockets help my eye symptoms during the active inflammatory stage of the disease?
It is clear that radiation is not beneficial once your eyes are in the stable stage of the disease. Despite a number of studies there is disagreement among experts if radiation is useful during the active inflammatory stage of the disease.
5. What role do orbital injections of steroid play during the active inflammatory stage of the disease?
Patients who are in the active inflammatory stage of the disease that are not threatened with loss of vision are often treated with injections of orbital steroids. Orbital steroid injections are particularly useful in patients with pain in the eye socket caused by Graves’s disease. Orbital steroid injections are useful when tapering patients off of systemic steroids. Orbital steroid injections do not cause systemic side effects such as weight gain, hypertension and diabetes. However, there are potential complications to be considered when giving injections of medicine adjacent to the globe.
6. What role do intravenous steroid injections or pulsed dose intravenous steroid injections play in the management of the active inflammatory stage of the disease?
Patients that have severe or vision threatening disease are often treated with once weekly infusions of steroids. We have found these injections to be as effective in treating severe inflammation as oral steroids but to have fewer systemic side effects than oral steroids. Patients go to an IV infusion center once weekly for four or more weeks. It is important that blood tests are ordered to monitor for complications of the weekly steroid injections.
Treatment of Graves Disease: Stable stage
There is no pill or intravenous infusion that is known to be helpful to patients during the stable stage of the disease. Many patients will have dry irritated eyes and will benefit from treatment with artificial tears and eye lubricating ointment as described above. Surgery is the primary mode of treatment for patients with Graves’s disease during the stable stage of the disease.
The majority of patient with Graves Eye disease will not develop problems severe enough to require surgical correction.
Patients with eyes that protrude from the eye socket may be helped with orbital decompression surgery. Patients with double vision may be helped with surgery on the eye muscles which is termed strabismus surgery. Patients with widely open eyes or excess fat deposited in the eyelids can have this corrected with surgery. A consultation with an ophthalmic plastic surgery expert can further inform you if you may benefit from surgery.
4. If a patient has protruding eyes, widely open eyes, and double vision can all of these problems be addressed with a single surgery?
Graves’s disease often requires more than one stage of surgery. In the first stage of surgery orbital decompression surgery is performed to place the eyes back into the eye socket and to reduce the retraction of the eyelids. Some patients will require an additional stage of surgery to correct double vision and some another stage of surgery to remove fat deposited in the eyelids.
In the past orbital decompression surgery was reserved for patients at risk of permanently loosing vision. Emergency orbital decompression surgery for patients who are loosing vision during the active inflammatory stage of the disease can be performed. However, the majority of orbital decompressions are performed on an elective basis for patients with pain behind the eyes, dry irritated eyes, and for patients who have been disfigured by bulging of the eyes. This should be discussed with a qualified surgeon.
If your eyes are dry and irritated and you have white showing between the colored part of your eye and the upper or lower eyelid then you are likely a candidate for surgery. This should be discussed with a qualified surgeon.
If you have double vision when looking straight ahead or down or if you have to take a chin up posture to see single you are likely a candidate for surgery. This should be discussed with a qualified surgeon.
Yes. All medical and surgical procedures have risk associated with them. During a formal consultation we can evaluate and then discuss the risk benefits and alternatives of treatment so that an informed decision can be made.
Each insurance company has its own policy. In general your insurance company will pay for procedures that improve your vision, make your eyes less dry and irritated, and reduce pain behind the eyes. Procedures performed where the only goal is to improve appearance are typically not covered.