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How Thyroid Conditions Can Lead to Rare Eye Disorder

A rare vision disorder known as thyroid eye disease (TED) has been increasingly linked to Graves’ disease, a condition that leads to hyperthyroidism. 

Graves’ disease is an autoimmune condition occurring when the body’s immune cells produce too much thyroid hormone. This hormone is responsible for critical bodily functions, including growth and metabolism. About 1 out of every 100 Americans has Graves’ disease, which affects women much more than men.

closeup of an endocrinologist scanning a woman's thyroid

Eye complications affect about one-third of Graves’ patients, usually within six months of onset. Nearly all (90 percent) of TED patients have an overactive thyroid, and the immune cells that attack the thyroid gland also damage body fat and muscle tissue around the eyes, causing pain, swelling, and other symptoms. TED is a serious, often excruciating condition that can severely decrease the quality of life and result in complete blindness.

A new prescription medication for thyroid eye disease, called Tepezza, was released in 2020 by Irish pharmaceutical company Horizon Therapeutics and, as the first to gain FDA approval, was widely hailed as a breakthrough treatment.

Not long after, an unexpected side effect swiftly derailed patients’ road to recovery. Many began experiencing hearing issues ranging in severity from mild, temporary tinnitus to permanent hearing loss. Patients began filing Tepezza lawsuits against Horizon Therapeutics as a result.

An Overview of Thyroid Eye Disease

Thyroid eye disease presents in the inflammatory/active and stable phases. The active phase lasts four months to three years and requires regular monitoring by an ophthalmologist to ensure treatment efficacy and the best chance at sight preservation.

Signs and symptoms of thyroid eye disease include:

  • Dry, watery, itchy, puffy, and/or red eyes
  • Irritation from a “gritty” feeling
  • Proptosis, or bulging eyes
  • Eyelid swelling
  • Double vision
  • Increased tearing and light sensitivity
  • Difficulty closing eyes, leading to corneal ulcers 
  • Pain behind the eye and with eye movement

Risk factors for TED beyond genetics and family history can include cigarette smoking, age, stress, uncontrolled diabetes or thyroid disease, and using radioactive iodine as a Graves’ disease treatment. Smoking, both first and secondhand, increases TED’s progression while decreasing its response to treatment. 

Existing thyroid disease must be addressed before treatment for TED can begin. There are numerous treatment options for thyroid eye disease, including over-the-counter medications, prescription drugs, surgery, and lifestyle changes. 

  1. Over-the-counter options include eye drops aimed at lubrication without reducing redness, supplements of the thyroid health mineral selenium, and aloe vera juice, which has shown promise as an anti-inflammatory.
  2. The most effective lifestyle change against TED is quitting smoking. Other helpful measures are wearing sunglasses, glasses with prisms, and eye patches to reduce double vision and light sensitivity, using cold compresses, elevating the head when lying down, taping your eyelids closed when asleep, and maintaining healthy thyroid hormone levels.
  3. Prescription drugs such as prednisone and other steroids with radiation to treat inflammation have been a traditional option for decades. 
  4. Various surgical procedures can be beneficial, including on the eyelids to protect the cornea, eye muscles to reduce double vision, and eye sockets to reduce bulging. 

Patients living with thyroid eye disease struggle with daily activities and emotional well-being, as the symptoms can reduce self-confidence, comfort in social situations, and the ability to manage personal relationships.

“ … to have your appearance dramatically change overnight is a huge blow to the ego and something I was not prepared for,” TED patient Annie Larsson told Stat News in 2023 while discussing how the disease impacted her energy levels and relationships with her husband and daughter.

“I was 38 at the time [of TED diagnoses], and I have always looked pretty young,” she continued. “And it aged me overnight. It was hard to look in the mirror sometimes and see a person you’ve never seen.”

Tepezza and Hearing Loss

Before Tepezza could be approved by the FDA, it had to be tested during clinical trials sponsored by Horizon Therapeutics. Those trials reported hearing problems in 10 percent of participants and assured that such issues would be reversed as soon as the drug was stopped. Problems included eustachian tube dysfunction, deafness, hearing patients’ own voices in their ears (autophony), and sensitivity to normal sound (hyperacusis). 

The relatively low presence of hearing problems in the trials gave physicians hope that Tepezza would be a huge improvement over traditional TED therapies despite its high cost of $200,000 per six-month course (only partially covered by most health insurers). 

However, a 2023 study by the Endocrine Society found that Tepezza’s risk of hearing problems was much higher than initially reported.

Researchers at the Stanford University School of Medicine found that up to 65 percent of participants who had undergone at least four Tepezza infusions – half the full treatment – experienced hearing problems, and many of their symptoms persisted or worsened after stopping the drug.

The most common symptoms reported were autophony, ringing in the ears (tinnitus), subjective hearing loss, and a sense of the ears being plugged.

Tepezza blocks the insulin-like growth factor IGF-1R receptor, which reduces muscle and tissue swelling. But this receptor is also vital to protecting and maintaining hearing.

Several studies have strengthened the link between the drug and temporary to permanent hearing loss, including one in 2022 by the American Journal of Ophthalmology, in which 81.5 percent of participants developed new hearing problems soon after beginning Tepezza infusions.

Patients who took Tepezza and experienced subsequent hearing problems began filing lawsuits against Horizon in August 2022, claiming that the drugmakers failed to test Tepezza sufficiently before release and warning doctors and patients against the risks of permanent tinnitus and/or hearing loss.

So many patients filed against Horizon that the lawsuits were consolidated into multidistrict litigation (MDL) a month later in the Northern District of Illinois. Horizon maintains that company officials did nothing wrong, but the lawsuits are ongoing.

Tepezza users who develop hearing complications should contact an experienced Tepezza attorney, who can determine possible legal options that may result in financial compensation for their injuries.