20 Questions About Thyroid Eye Disease
Before and After Photos
UW Health oculoplastic surgeon Dr. Mark Lucarelli answers 20 questions about thyroid eye disease:
1. I'm confused by the terminology. What is the difference between thyroid eye disease and Graves' orbitopathy?
Thyroid eye disease, Graves' orbitopathy, and Graves' ophthalmopathy all refer to the same disease process.
2. What are some reliable online resources for patients with thyroid eye disease?
The Graves' Disease and Thyroid Foundation (formerly National Graves Disease Foundation) maintains a useful website at www.gdatf.org. Additionally, the International Thyroid Eye Disease Study Group (ITEDS) maintains a website at www.thyroideyedisease.org with excellent content provided by physician experts. Another site that is useful for many patients with dry eyes is www.dryeyezone.com.
3. My endocrinologist said that my blood work now shows normal thyroid levels. Why am I still having problems with my eyes?
In thyroid eye disease, the eye findings often do not closely mirror the patient's endocrine status. Although the immune process affects both the eyes and the thyroid, the two processes are often out of sync with each other.
4. If a patient's endocrine status is often not well correlated with the progress of his or her thyroid eye disease, are careful monitoring and control of thyroid blood levels important?
Patients with active or recent thyroid eye disease should be under the care of an internist or endocrinologist. Proper maintenance of thyroid function is associated with fewer complications from thyroid eye disease.
5. I'm having problems with thyroid eye disease (Graves' orbitopathy). Why do all the doctors keep asking me about smoking?
Smoking is strongly associated with more severe problems in thyroid eye disease. Patients who smoke have more eye complications from Graves' disease than those who are non-smokers. Heavy smokers typically have a worse course than patients who smoke minimally. Smoking is one of the most important risk factors for severe thyroid eye disease that a patient can modify. Every patient with thyroid eye disease should make a very strong effort to stop smoking. Resources are usually available through health plans, primary care physicians, internists and other providers. Learn more: Smoking Cessation Resources
6. What are the most common findings of thyroid eye disease?
There are many different manifestations of thyroid eye disease. The most common finding is eyelid retraction (excessively wide eyelid opening). Eyelid retraction occurs when fibrosis (scarring) inside the upper lid or lower lid causes one or both lids to open too widely. Another common finding in thyroid eye disease is proptosis. Proptosis (exophthalmos) is a medical term for the eyes bulging outward. Other findings in thyroid eye disease include inflammation or congestion of the tissues around the eyes, strabismus (misalignment of the eyes), and occasionally optic neuropathy (decreased vision from compression of the optic nerve).
7. What causes the eyes to bulge in thyroid eye disease?
The bulging of the eyes in thyroid eye disease is usually the result of an increase in the size of the muscles that move the eye or in the amount of fat behind the eye - or both. Initially the swelling is part of an inflammatory process, and later scar tissue is deposited in the eye socket. The bulging may improve somewhat over time, but does not usually go away completely.
8. How long does the inflammatory phase of thyroid eye disease last for most patients?
It is hard to predict in any given patient how long the "active" phase will last. In most patients the inflammatory phase of thyroid eye disease lasts anywhere from six to 24 months.
9. Do many patients go blind from thyroid eye disease?
Fortunately, it is quite rare for patients to go blind from thyroid eye disease. On the other hand, many patients with thyroid eye disease do have serious difficulty with their vision owing to dryness, irritation, and exposure of the eyes. Double vision that can be very disabling, is common from enlargement and scarring of the muscles that move the eyes.
10. How do I find an experienced surgeon to help me with thyroid eye disease?
Most ophthalmologists and endocrinologists can usually help patients in finding an oculoplastic surgeon with experience in treating patients with thyroid eye disease. ITEDS (www.thyroideyedisease.org) and the Graves' Disease and Thyroid Foundation (www.gdatf.org) can be valuable resources for locating surgeons with a special interest in thyroid eye disease. In the United States, most surgeons who are members of the American Society of Ophthalmic Plastic and Reconstructive Surgeons (ASOPRS) (www.ASOPRS.org) will have extensive training and experience in the care of patients with thyroid eye disease.
11. I have been suffering from significant bulging of my eyes for the last 8 months. I am eager to get on with reconstructive surgery. What is the hold up?!
Patients with relatively severe thyroid eye disease are often highly motivated to move forward with surgery at the earliest opportunity. Most surgeon experts in thyroid eye disease recommend that a period of stability (often 6 months) be reached prior to reconstructive surgery. Under some situations surgery is performed in the active phase. Most surgeons, however, feel the surgery can be planned more accurately if the patient has reached a stable plateau.
12. What is orbital decompression?
Orbital decompression is a surgery that is performed for patients with thyroid eye disease designed to increase the space for the orbital fat, muscles, and eyeball in the eye socket. This is usually done by removing bone or fat, or both, from the eye socket.
13. How is orbital decompression performed?
There are many different accepted approaches in orbital decompression surgery. Surgeons experienced in orbital decompression can usually place the skin incisions in a way that minimizes scars for most patients. Through these incisions, bone of fat is removed to create more space for the eye.
14. I heard that I might need strabismus surgery after an orbital decompression. What does that mean?
Sometimes after orbital decompression the eyes are in worse alignment. This can cause a patient to have significant problems with double vision. The risk of this happening is different for different types of thyroid eye disease and for different types of decompression. Fortunately, strabismus surgeons are able to prescribe prisms (in glasses) and to perform surgery on the eye muscles to improve the alignment of the eyes and reduce patients' problems with double vision.
15. What is eyelid retraction surgery?
In eyelid retraction surgery the goal is to bring the upper or lower eyelid into a more normal position. For patients with eyelid retraction this means lowering the upper lid or raising the lower lid. During retraction surgery, scar tissue in the eyelids is usually addressed. Sometimes one or more of the muscles in the affected eyelid is modified. Occasionally, a material such as hard palate (from the roof of the mouth) or some other type of graft is used to help lengthen the retracted eyelid.
16. I am an avid reader. Could you recommend a detailed book about thyroid eye disease for patients?
Yes, "Thyroid Eye Disease - Understanding Graves' Ophthalmopathy" by Elaine Moore is a book that many patients have found useful.
17. What causes thyroid eye disease?
Many of the exact details of the cause of thyroid eye disease are not entirely clear. In general, it can be said that an autoimmune process targets the tissue behind the eye. Research has shown that the TSH receptor (also found on the thyroid gland) is an important target in this process. An autoimmune process starts an inflammatory cascade in the tissues around the eye. In some patients this inflammation is mild and results in few consequences. In other patients, however, the inflammation is more severe and prolonged, and resulting in significant deposition of fatty tissue and scar tissue behind the eye. This fatty tissue and scar tissue generally does not resolve on its own.
18. How do I meet other patients who have gone through some of the problems I'm having?
The Graves' Disease and Thyroid Foundation (formerly National Graves Disease Foundation) (www.gdatf.org) is a great resource for patients with thyroid eye disease. Many cities have active GDATF support groups.
19. What are some of the advances that you've seen in the treatment of thyroid eye disease?
In the more than 15 years that I've been treating patients with thyroid eye disease there have been many notable improvements. Physicians have learned how to lower the risk of worsening eye findings after radioactive iodine with the temporary use of prednisone. Additionally, steroids given by vein (sometimes once weekly) have been found to be effective in the active, inflammatory phase. There have been many exciting advances in orbital decompression surgery since the late 1990s. Additionally, in the last decade there has also been significant improvement in surgery for eyelid retraction.
20. What are some of the main advances in orbital decompression?
Surgeons who perform orbital decompression frequently can now readily customize the surgery for a given patient. Some patients require decompression of only one orbital wall. Many do well with two wall decompressions, and some require three wall decompressions. Additionally, orbital decompression can be done with or without fat removal. One of the major advances in orbital decompression surgery has been in the aesthetic result of this reconstructive surgery. With advanced orbital decompression techniques, this complex surgery can be accomplished using very small skin incisions or incisions that avoid the skin altogether.