Patients with autoimmune thyroid disease can also experience an autoimmune attack on the connective tissue cells surrounding the eyes; this condition is known – among other names – as thyroid eye disease (TED).
- Thyroid eye disease (TED) goes by many names: Graves’ opthalmopathy, Graves’ orbitopathy, thyroid associated opthalmopathy, or thyroid orbitopathy. All of these refer to the same condition.
- Although thyroid dysfunction and TED are usually diagnosed at around the same time, TED can occur before thyroid dysfunction develops - or many years after.
- The initial phase of TED is known as the “active”, “hot”, or “inflammatory” phase. This phase, which can last for 1-2 years, involves continued worsening (or improvement) of symptoms. The disease then reaches an “inactive” or “stable” phase.
- Medical intervention is most effective during the active phase.
- Surgical intervention is usually reserved for the inactive phase, unless the patient is experiencing sight-threatening compression of the optic nerve; in this case, emergency surgery will be performed immediately to preserve vision.
- See below for in-depth information on signs, symptoms, treatment options, and daily coping strategies.
Signs and Symptoms of TED
“Signs” are markers of disease that your doctor can directly observe upon examination. “Symptoms” are subjective issues experienced by the patient that must be reported to the doctor. Each case of TED is unique, and not all patients will present with the same signs and symptoms, but following is a partial listing:
- Change in how colors are perceived (notify your doctor immediately of this issue, as emergency surgery might be needed to prevent vision loss)
- Bulging eyes
- Double Vision
- Gritty sensation in the eyes
- Pain and/or ache
- Swelling (often in the upper eyelids, eyebrow area, below the eyes, or directly on the front surface of the eye)
- “Flare” (the upper point of the eye curve appears more towards the ear, rather than centered)
- Light Sensitivity
- Difficulty moving the eyes
Treatment Options (Click Medical or Surgical Below)
In some cases, steroid therapy will be recommended during the active phase of TED. Although this does not provide a permanent cure, steroid therapy can provide temporary relief from significant swelling. The risks of steroid therapy should be balanced against potential risks. Radiotherapy or botulinium toxin injections can also be used in some cases to help with double vision.
TEPEZZA (TM) was approved by the U.S. Food and Drug Administration in January 2020 for treatment of thyroid eye disease. The medication is delivered via eight infusions, spread three weeks apart. Research into another medication, rituximab, has yielded mixed results (3,4). Trials of IMVT-1401 are currently in a pause, due to early findings of elevated cholesterol. For information on ongoing clinical trials, please visit www.clinicaltrials.gov.
Once TED has reached the inactive phase, surgical options are available to restore both eye appearance and function. Specific surgeries are performed to address different issues. If multiple surgeries are required, these procedures are performed in stages, with time in between to allow for healing. Orbital decompression surgery involves the removal of bone or fat to reduce eye bulging. Strabismus surgery is performed to correct double vision. Blepharoplastic surgery is used to remove fat deposits and to correct eyelid position. These surgeries can be performed as outpatient procedures or with an overnight stay in the hospital, depending on your surgeon’s preference and whether one or both eyes are being treated.
What Can I Do Now?
Waiting for the disease to reach the inactive phase can be a lengthy and frustrating process. The following are some simple steps that you can take now to provide comfort and to influence the course of the disease. (Click the + sign to see more.)
(1) U.S. Food and Drug Administration. 21 January 2020. Retrieved from https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-thyroid-eye-disease
(2) Immunovant announces voluntary pause in clinical dosing of IMVT-1401. 2 February 2021. Retrieved from https://investors.immunovant.com/news-releases/news-release-details/immunovant-announces-voluntary-pause-clinical-dosing-imvt-1401
(3) Stan MN, Garrity JA, Carranza Leon BG, Prabin T, Bradley EA, Bahn RS. Randomized controlled trial of rituximab in patients with Graves' orbitopathy. J Clin Endocrinol Metab. 2015 Feb;100(2):432-41. doi: 10.1210/jc.2014-2572. Epub 2014 Oct 24.
(4) Salvi M, Vannucchi G, Currò N, et al. Efficacy of B-cell targeted therapy with rituximab in patients with active moderate to severe Graves' orbitopathy: a randomized controlled study. J Clin Endocrinol Metab. 2015;100(2):422–431. doi:10.1210/jc.2014-3014
(5) 2016 American Thyroid Association Guidelines for Diagnosis and Management of Hyperthyroidism and Other Causes of Thyrotoxicosis. Douglas S. Ross, Henry B. Burch, David S. Cooper, M. Carol Greenlee, Peter Laurberg, Ana Luiza Maia, Scott A. Rivkees, Mary Samuels, Julie Ann Sosa, Marius N. Stan, and Martin A. Walter. Thyroid 2016 26:10, 1343-1421.
(6) Selenium and the Course of Mild Graves' Orbitopathy. Claudio Marcocci, M.D., George J. Kahaly, M.D., Gerasimos E. Krassas, M.D., Luigi Bartalena, M.D., Mark Prummel, M.D., Matthias Stahl, M.D., Maria Antonietta Altea, M.D., Marco Nardi, M.D., Susanne Pitz, M.D., Kostas Boboridis, M.D., Paolo Sivelli, M.D., George von Arx, M.D., et al., for the European Group on Graves' Orbitopathy. May 19, 2011.
N Engl J Med 2011; 364:1920-1931. DOI: 10.1056/NEJMoa1012985.