Thyroid eye disease (also known as Graves’ Disease) is an autoimmune inflammatory disorder of uncertain cause that affects the tissues of the eye socket (i.e. eyelids, muscles and other soft tissues surrounding the eyes). Patients with this disorder often have a thyroid abnormality, which may manifest either before, during or after the eye related signs and symptoms. However, a small percentage of patients may have eyelid and eye socket manifestations of the disorder without developing a thyroid abnormality.
Thyroid eye disease can develop and affect patients in different ways. The disease can begin suddenly and progress rapidly over days to weeks or start slowly and progress gradually over a long period of time. The majority of patients have mild inflammation, the most common signs and symptoms of which are retraction of the upper and/or lower eyelids and bulging of the eyes (also known as proptosis). In cases of moderate inflammation, patients may also have varying degrees of double vision and eyelid swelling as well as visible redness of the lids and eyes. A small percentage of patients with thyroid eye disease develop severe inflammation, which can result in compression of the optic nerve and permanent vision loss. In most cases, the inflammatory process is self-limited and runs a course lasting 6 months to a few years before “burning out”. After the inflammatory phase of the disease ends, scarring of eyelid and orbital tissues may result in the persistence of eyelid retraction, bulging eyes and double vision.
Learn more about Thyroid Eye Disease at ThyroidEyes.com (this site is hosted by a pharmaceutical company but has reliable information about the disease).
Evaluation and Management
It is important to be evaluated by an ophthalmologist to assess the eye-related manifestations of the disease as well as by an endocrinologist to manage thyroid problems. Patients with mild eye disease are usually seen regularly to monitor progression of the disease and manage eye-related symptoms. Patients with moderate to severe eye disease may require medical or surgical intervention to reduce inflammation or improve vision. Once the inflammatory phase of the disease has ended, patients with eyelid abnormalities, double-vision or bulging eyes may be eligible for surgical correction to improve their function and appearance. Cigarette smoking has been associated with development of worsening thyroid eye disease, therefore stopping smoking is always recommended for these patients.
New Treatments Upcoming & Support Groups
A new therapy for Thyroid Eye Disease has been developed (teprotumumab) which claims to target the underlying autoimmune causes. This treatment has shown promising results in FDA trials and will hopefully be available early in 2020.
Follow this link to access multiple websites with Thyroid Eye Disease support groups and education.