Eye problems in Graves' disease
Exophthalmos and Graves' Disease
Exophthalmos is a long and difficult word to pronounce that simply refers to the bulging eyes that some patients with Graves’ Disease develop. From a medical standpoint it is quite a bit more complicated than that, of course. Not everyone with Graves’ disease and hyperthyroidism develop this eye problem but a significant percentage of patients do. Usually both eyes are affected but sometimes only one or one eye is affected more than the other. Symptoms vary from patient to patient, and include such things as a feeling of dryness or scratchiness of the eye, excessive tear formation, sensitivity to light , and even double vision.
The muscles around the eye may be impacted by this problem as well, causing impaired movement of the eye. Most commonly the diagnosis of Graves’ eye disease is made at the same time as the diagnosis, but this is not always true.
Sometimes the eye problems start as late as a year or two after diagnosis of Graves’ hyperthyroidism. There are even cases of
Exophthalmos presenting in people who are not hyperthyroid but become hyperthyroid later. I have never seen this, probably because I see patients that need a thyroidectomy so there would be no point sending me a patient with eye problems. They would first see an ophthalmologist.
And I should point out that not all ophthalmologists are expert or experienced in the eye difficulties of Graves’ Disease, so if you live in a smaller town, you may need to do a little traveling to a bigger city to find an eye doctor who knows how to manage this problem. It is sort of a subspecialty area of ophthalmology. And it is worth seeing an expert, you don’t want to fool around with your vision, and while it is most unlikely in most cases, there are folks who have been blinded by this disease.
Graves’ eye disease is a complex immunologic problem that involves the soft tissue and muscles around the eye and even the fat behind the eyeball. From my readings, I don’t think we fully understand the disease and the treatment in serious cases is usually some sort of surgical procedure to release the increase in pressure that is pushing out the eye. Radiation therapy is also used, but I am not an expert in this field and I would ask you to review Ophthalmology websites for more specific and accurate descriptions of the various treatment options. Fortunately most patients won’t get to the point of needing any major treatment.
I think the most important thing I can tell you in my brief discussion here is that there is controversy concerning whether Graves’ Disease patients with exophthalmos should be treated with radioactive iodine or not. Many experts feel that treating a Graves’ hyperthyroid patient with exophthalmos with radioactive iodine runs the risk of making the patient’s eye disease much worse. I have seen this phenomenon. I believe, and this is only opinion based on treating thyroid patients for about 36 years, that the only treatment option for Graves’ Disease that gives the patient a chance of improvement in his or her eye difficulties is total thyroidectomy. Not partial or subtotal thyroidectomy but total thyroidectomy. I believe that by physically removing ALL thyroid tissue we may be removing the main antigen that is part of the antibody-antigen process that causes the eye difficulties in the first place. I cannot prove this in a laboratory; I am only sharing what I’ve seen in person in my office. The first case that brought this to my attention was decades ago when I did a total thyroidectomy on an 18 year old girl in about January or so. She had a bulging eye and was worried about her graduation picture that would be taken in May or early June. She wrote me to say that her picture turned out great. I never forgot that. Does this mean that every patient with Graves’ eye disease will improve after total thyroidectomy….NO. But at least there is the opportunity for improvement. On the other hand I‘ve seen patients treated with radioactive Iodine that had worsening of their eye disease. Recently I saw a young lady who noticed an increase in her eye symptoms after simply getting a small dose of radioactive iodine for a diagnostic scan. I think something was released by the thyroid tissue that increased the antibody/antigen autoimmune disease around the eye. Can I prove it? No, but I’ve seen this on many occasions. And finally, with regard to Radioactive iodine treatment of Graves’ disease where they try to kill most or the entire gland with radiation. When that is finished you have what I perceive as a burnt up, radiation exposed bunch of tissue just sitting there in the neck. Now what? We know that low dose radiation exposure has an impact on the future development of thyroid cancers. Are these patients now at more risk to develop a cancer in this burnt tissue? I don’t know, but if my daughter had Graves’ disease with exophthalmos, I would operate on her for that disease, and I do mean I would operate on her, no one else.
I am attaching a few photos of Graves’ Occulopathy for your interest. The most severe of these three went on to surgery around the eye to release the pressure and maintain his vision. The others responded well to total thyroidectomy and had no major ophthalmalogic treatment.
