Focusing on Thyroid Eye Disease (TED) in People Living with Graves’ Disease

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By: Mark Lupo, MD, Thyroid & Endocrine Center of Florida 

As we approach Graves’ Disease Awareness Month in July, it is an important time to recognize the increased risk people living with thyroid conditions like Graves’ disease have for developing a related, but distinct autoimmune disease called Thyroid Eye Disease (TED).   

TED is a complex disease that presents differently in each patient. It causes the muscle and fat tissue behind one or both eyes to become inflamed and swollen. Classic symptoms include proptosis, diplopia and orbital pain, redness and swelling. Symptoms may be persistent or change in severity over time. It is well established that autoantibodies against the TSH receptor drive Graves’ hyperthyroidism. With TED there may be additional antibodies directed against the insulin-like growth factor type 1 receptor (IGF-1R) which is overexpressed on the orbital fibroblast in TED. 

Living with TED can be both physically and emotionally challenging for people as their everyday lives are affected, from being unable to drive with double vision or sleeping with their eyes open. Some patients are unable to work due to visual changes or pain behind the eye. Patients often experience anxiety and depression due to their altered appearance with TED. In addition to adversely affecting the lives of patients psychologically and socially, the long-term impact can include serious vision impairment, facial disfigurement, and in severe cases even blindness, so it’s important to diagnose and treat TED early. 

Endocrinologists play a key role in managing the thyroid manifestations of patients with TED and can be pivotal in recognizing the signs and symptoms of TED. Because treating the thyroid does not always treat or improve the clinical manifestations of TED, I have found it beneficial to co-manage the disease with an oculoplastic surgeon or neuro-ophthalmologist. Any new eye symptoms in my patients with autoimmune thyroid disease, especially Graves disease, warrants referral to an ophthalmologist familiar with TED. For example, many patients attribute ocular symptoms such as redness or foreign body sensation to allergies or dry eyes – but these symptoms could represent TED, and evaluation is recommended. I have a low threshold for sending patients for a comprehensive eye exam.  

Treatment options for people living with TED have long-included topical eye drops or gels, orbital radiation to target inflammation, or steroids to provide symptom relief  options that have addressed the symptoms of TED, but not the underlying cause. In 2020, the U.S. Food and Drug Administration approved an infusion medicine for TED. Surgeries like orbital decompression and eyelid repositioning are an option once inflammation subsides and the disease becomes more stable, but the infusion medicine may help prevent the need for surgery. 

Not all signs of TED may be visible, so it’s important to ask your patients about eye symptoms specifically during their visits, as well as how symptoms affect their quality of life. From there, deploying a supportive, multidisciplinary care team can help people get the comprehensive care they need.

Support provided in part by Horizon Therapeutics

Mark Lupo, MD, Thyroid & Endocrine Center of Florida