Patients with Graves eye disease or Thyroid eye disease in Denver, Colorado often ask me many questions about their disease on diagnosis. These are the most common questions that are asked to me by patients and can be helpful to read for any patient that is diagnosed with Graves eye disease.
What did I do to get this?
One of the most important questions that patients with Graves disease in Denver ask me is what they did to get Graves disease. Graves disease is a disease of the immune system. The same way that some people get autoimmune diseases such as rheumatoid arthritis, multiple sclerosis, or lupus some patients develop graves disease. We know that there may be something in the genes that may increase the risk for development of the disease. The only environmental factor that plays a role in graves disease is smoking, Smokers are at a higher risk for developing graves disease because smoking inherently messes with the immune system. Graves is not caused by vaccines, diseases, trauma or any other cause. You cannot “catch” graves disease from someone else.
2. Is there a cure for Graves disease?
There is no cure currently for Graves disease. We manage the disease over the time period which it is active and it tends to burn out on its own. The length of time the disease lasts is 1 year in nonsmokers and 3 years in smokers. This is yet another reason why smoking is a bad idea with Graves disease.
3. Is there anything I can eat to improve Graves disease?
If you are a smoker the most important thing is to stop. It makes Graves disease worse and increases the risk of going blind. If you are exposed to secondhand smoke it is best if you avoid it. Graves disease symptoms can be improved through supportive measures. Sleeping with your head elevated (head of the bed on concrete blocks) will reduce puffiness and swelling.
4. Does exercise help or hurt graves?
Exercise is helpful for Graves. It is helpful to increase circulation and to improve psychological well being in Graves disease.
5. I don’t like the way my eyelids look. When should I have surgery to fix that?
Graves disease can affect the eyelids, eye muscles and bulging of the eyes. It is best to have eyelid surgery on your eyes for graves once things are stable. That means, your eyes are not getting worse or changing over a six month period. First patients will get eye socket surgery for bulging if needed, followed by eye muscle surgery to correct double vision as well. Finally, patients get eyelid surgery last after the eye socket or eye muscles are taken care of. Eyelid surgery at the same time as orbital decompression or eye muscle surgery is not recommended.
6. How would I know if Graves is affecting my vision?
Graves disease will affect three components of vision: clarity of vision, color vision and field of vision. “Blurring of the vision” can reflect dryness of the eye or damage to the optic nerve. An ophthalmologist can test clarity of vision and examine the cause.
Decreased color vision particularily red color is an early sign of vision loss in graves. This can be seen by the patient as red color seen as duller, orange or even gray. A good way to test decreased color vision to alternate covering one eye and seeing if a red object looks different from one eye to another. If this is the case, you should see an oculoplastic surgeon or neuro-ophthalmologist as soon as possible.
Your ophthalmologist will test your field of vision using a test called a visual field machine. This will test “problem spots” in your vision. This could also reflect a problem with the optic nerve as well.
7. My thyroid is under control why is Graves eye disease affecting me?
Graves disease is caused by an antibody in the blood. An antibody is a chemical mediator that increases or decreases the activity of certain cells in the body. This antibody can also affect the thyroid. In some patients it affects just the thyroid. In some patients the antibody messes with both the eyes and the thyroid. In some patients it affects just the eyes. Rarely, some patients have the antibody but the patients have no symptoms of the thyroid or eye. Controlling your thyroid is good to reduce eye symptoms but Graves eye disease is not caused by the thyroid being too high or low.
8. Is there anything I shouldn’t do if I have Graves disease?
Yes. If you have graves eye disease, you should never smoke. It will make things a lot worse and increases the risks of blinding you. Other than that, you can do everything you did before you had graves. It is important to try to live as normal a life as possible after diagnosis of Graves eye disease.
9. What are my chances of going blind from Graves disease?
The chances of having optic nerve problems from Graves disease is under 5 percent. In those patients less than25 percent develop permanent vision loss. The vast majority of Graves eye disease patients do not go blind.
10. If I am diagnosed with Graves disease, who should I be seeing?
There are several doctors you may be seing for Graves disease:
1. Endocrinologist – An endocrinologist is a doctor who treats hormone issues in the body. In Graves disease, these doctors will check for thyroid problems and control them. Graves eye disease patients have the best outcomes with well controlled thyroid function if it is high or low.
2. Primary Care Doctor – Your primary care doctor will be helpful for coordinating your care with the other doctors. Any patient with a medical issue needs a good quarterback. Your primary care doctor can be critical in this role.
3. Ophthalmologist/Optometrist – Your ophthalmologist or optometrist can check your vision and look for vision loss. They can test your vision with visual fields and imaging of the optic nerve. If your eye doctor is not comfortable treating Graves eye disease, you should see a specialist such as an oculoplastic surgeon or neuro-ophthalmologist.
4. Oculoplastic Surgeon – Your oculoplastic surgeon is the surgeon who will perform your eye socket, eyelid surgery if needed.
5. Pediatric/Strabismus surgeon – This is the surgeon who performs double vision surgery on the eye muscles. They also can be helpful to prescribe prisms.
6. Neuro-Ophthalmologist - This eye doctor is a specialist in optic nerve damage. In some cases they be recruited to help diagnoses, manage and treat a problem with the optic nerve. In other cases, they may be asked to evaluate patients who their ophthalmologist/optometrist believes may have Graves eye disease.
7. Psychologist/Psychiatrist – These doctors can be helpful to aid patients dealing with the psychological and/or emotional issues from developing graves eye disease. This can be critical for mental well being during the disease course.
These are the most common questions patients ask me in my office in Denver for Graves eye disease. As an oculoplastic surgeon and neuro-ophthalmologist, I am uniquely trained to manage and treat Graves disease. It is critical to be with the right doctor who can manage and treat you.