Pointdujour and associates argue that the term Graves orbitopathy (GO) “leads to confusion and misdiagnoses among many medical specialists.” We agree that there are several reasons why the term Graves orbitopathy is not ideal for describing this orbital pathologic condition. GO is the most common extrathyroidal manifestation of Graves disease, and therefore, most patients with GO have associated hyperthyroidism. Experts agree that the prevalence of GO in Graves disease depends on the sensitivity of the testing methodology. Although clinically overt GO is present in 30% of Graves disease patients, extraocular muscle involvement is observed in 91% of these patients when assessed by CT. When patients with euthyroid orbitopathy are evaluated extensively, they often are found to have morphologic changes in the thyroid, positive thyroid stimulating hormone (TSH)-receptor autoantibodies, or a positive family history of thyroid disease. In total, 89% of these patients have some type of thyroid abnormality. It also should be noted that GO may occur before, simultaneously, or after the onset of Graves disease. Therefore, patients with euthyroid orbitopathy may demonstrate thyroid dysfunction during the course of GO. Because GO is commonly associated with Graves disease, it also occurs in patients with Hashimoto thyroiditis or in patients without thyroid dysfunction. For example, of the 310 GO patients seen at our multidisciplinary orbital center, 13 had autoimmune thyroiditis, and 7 did not have any thyroid disease at the time of data acquisition. The signs and symptoms of orbitopathy as well as the relationship between orbitopathy and the thyroid differ in every patient, and this is likely one reason why both clinicians and scientists have investigated GO for decades.

Pointdujour and associates proposed the terms thyroid-associated orbitopathy , thyroid eye disease , or thyroid orbitopathy . These terms are widely accepted and have been used in the literature for many years. Because of this, these terms should be considered for use. However, as previously mentioned, there is a small number of patients with isolated orbital signs and symptoms without any associated thyroid disease. This so-called ophthalmic Graves disease occurs in 5% to 10% of patients. Therefore, one should consider a term that does not include Graves or thyroid , such as autoimmune orbitopathy .

Finally, we hope that this exchange will launch a discussion to assist in the development of terminology that is specifically defined and generally accepted.