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  • David Chia, M.D. FACS

The way it used to be... in thyroid eye disease

Thyroid eye disease (sometimes referred to as TED or Graves' eye disease) is a type of autoimmune disease that occurs in certain patients, not all patients, with autoimmune thyroid disease where the body's immune cells attack thyroid cells but also the tissues around the eye (the orbit). Scientists currently believe this is because the orbital tissues contain proteins that are similar to those in the thyroid gland.

Thyroid eye disease causes inflammation of the orbital tissues and can cause a number of different symptoms such as:

  • Red eyes

  • Itchy eyes

  • Dry eyes

  • Watery eyes

  • Bulging eyes

  • Double vision

Dr. Kimberly Cockerham, M.D. on

During my residency training at the University of Maryland in the early 2000s, I had several patients with severe thyroid eye disease that are tragic and unforgettable. In particular, I had one patient who had severe proptosis [eye bulging] where one eye was blinded by his disease. The orbital swelling was so severe that even with the use of high dose systemic steroids that the optic nerve had been essentially choked to death on one side and he was at risk of losing the other eye also. I assisted my oculoplastics attending for his orbital decompression surgery to save the vison in his remaining eye. Despite a successful operation that saved the vision in the one remaining eye, he still had difficulty closing his eyelids and needed to put ointment on at night to prevent the eyes from drying out. He remained on high dose steroids for many months that caused him to exhibit uncharacteristic violent, angry outbursts towards his concerned and caring family.

Some of the other severe thyroid eye disease patients in the past could require not only this kind of orbital decompression surgery, but subsequent double vision (strabismus surgery) and then eyelid surgery for the inability to close the eyelids (lagophhalmos surgery). Each of these surgeries are major surgeries usually requiring general anesthesia and the risks that go along with this. Surgical rehabilitation from thyroid eye disease can be a long, arduous process for the patient and their families that often takes more than a year.

Things have changed a lot since the FDA approved teprotumumab (Tepezza), an IGF-1R blocking antibody, in January 2020. Dr. Richard Lindstrom's December 10, 2023 Perspective article provides a poignant perspective on the recent development and use of the breakthrough pharmcologic therapy Tepezza. "The impact of Tepezza on the quality of life of TED patients is another modern-day miracle of the innovation cycle." The cost of the treatment is high currently "about $400,000 ... requiring eight intravenous injections over 24 weeks." However, in the past, for our moderate to severe patients, no amount of time, money or surgery could get these patients back to their baseline. The cost to patients will depend on combination of factors including insurance coverage and company-supported access program. Amgen recently purchased Horizon Therapeutics PLC, the maker of Tepezza in October 2023, for $27.8 billion. Costs will continue to evolve as our understanding of the disease improves and even newer therapies emerge. Currently, the goal of most eye care professionals is to identify TED patients at an early stage, "allowing effective treatment before vision-threatening or psychological side effects occur."

Articles references in this blog post:


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