Patient Stories of Diagnosis and Treatment

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On July 29, 2026

Every year, there are approximately 25,000 people in the U.S. receiving care to manage their Thyroid Eye Disease (TED), an autoimmune condition where the immune system mistakenly attacks the muscle and fat tissue behind the eyes, leading to symptoms like proptosis (bulging eyes) and diplopia (double vision). TED can look different from person to person, making it easy for people suffering from TED to dismiss or deprioritize symptoms, even while the disease may be leading to new symptoms and impacting daily life. SheKnows spoke with Jessie and Will, two people living with TED whose experiences underscore how differently TED can present and affect patients, and highlight the importance of early attention, reaching the right specialist, and most critically, advocacy.

Jessie’s Story

^{Note: Jessie is an actual patient who was compensated for her time.}

Jessie’s TED journey started back in 2021, a year after she was diagnosed with Graves’ disease, an autoimmune thyroid condition frequently associated with TED. Jessie’s initial eye symptoms began with minor changes in vision and mild eye bulging that she noticed in the mirror. She initially wrote them off, attributing them to factors like mold in the school building where she worked, eye fatigue from screen time, or even her Graves’ disease. “It wasn’t major symptoms, just minor things,” Jessie recalls. “I was just having issues getting my eyes to focus due to double vision.” At the time, Jessie was working closely with her endocrinologist, but she didn’t know that up to 40% of patients with Graves’ disease may also develop TED.

It wasn’t long until Jessie’s symptoms began to interfere with her career as a teacher, her family life, and taking care of her children. At the time, she was teaching English and experienced pain from staring at a screen all day, and, despite wearing prism lenses prescribed by her eye doctor to help manage eye misalignment and double vision, as well as blue light glasses, it “became so challenging just to do my job.” Jessie would often need to pause her teaching to close her eyes for a few seconds.

But Jessie felt like the worst impact was the effect her TED symptoms began having on her family life. “We’re very active as a family,” she says. “Always on the go. But at that point, I had to lay down and tell the kids ‘no,’ or tell them ‘mom needs a break.’ I wasn’t feeling like myself…I couldn’t cook dinner because I had to lay down after dealing with eye pain all day. There was a lot of mom guilt.”

Jessie’s turning point came after a night that should have been fun—she drove herself and two friends to a concert three hours away. But even after pulling over and resting her eyes, Jessie realized her double vision was still interfering with her ability to see clearly enough to continue driving safely.

This impact on her daily activities became the reason she decided to share her eye symptoms with her thyroid specialist, and Jessie started the conversation at her next appointment. The doctor’s response was immediate. She informed Jessie about the link between Graves’ disease and TED, which requires its own treatment plan.

Jessie’s doctor referred her to a TED Specialist—who instantly took notice of Jessie’s bulging eye and put her on a path toward a formal TED diagnosis. Jessie originally resisted the diagnosis, noting that she’d come across TED in her research but believed her symptoms were “too mild” to be that. However, she soon realized that the impact on her daily life was significant enough to take action.

Will’s Story

^{Note: Will is an actual patient who was compensated for his time.}

Will’s initial symptoms began around 2022, and included swelling around one eye that was so minimal he “almost disregarded it.”But disregarding the symptoms wasn’t easy to continue when the swelling became more noticeable, particularly to Will’s wife and others. Will’s wake-up moment came when someone he’d met for the first time at a party pointed out the swelling. Will shared, “I was also running a restaurant so I was on social media all the time promoting, and a lot of people would make comments that affected my confidence.”

At first, an eye specialist wasn’t able to identify what was causing his symptoms. Will’s eye bulging was subtle and primarily presented by swelling of the tissues around his eyes, so his symptoms were not initially recognized as TED. Because Will was a younger patient, and lab testing indicated that he didn’t have any thyroid dysfunction, like Graves’ disease, his symptoms were dismissed as temporary—which delayed his diagnosis and treatment. His experience reiterates the importance of connecting with a specialist who has experience diagnosing a rare condition like TED.

Will accepted the outcome of that visit with the eye specialist, feeling almost relieved that he’d done the right thing by getting his symptoms checked and being told it was okay. “It’s something I wanted to hear,” Will told SheKnows. “And I just went on with my life.”

After a period when his symptoms seemed to come and go, Will’s eye symptoms worsened. The swelling of the tissue around his eyes increased and his confidence continued to be affected. He also started to experience double vision, which made driving difficult and started to impact his daily routines. He began wearing non-prescription glasses in an effort to create a visual distraction so the swelling in his eyes was less noticeable.

As Will’s symptoms worsened, Will’s wife pushed for more answers. She took the initiative to seek advice from friends in healthcare, identifying ophthalmologists with expertise and pushing firmly for specialist care. Her persistence directly led to a TED diagnosis and, ultimately, a recommended treatment. “My wife is my champion and willing to go the extra mile,” Will shared.

The TED Specialist Will met with immediately recognized Will’s symptoms as TED. He informed him that, despite its name, TED does not affect the thyroid, but instead the muscle and fat behind the eyes; and it can occur in people even when thyroid function is normal. His formal diagnosis was approximately three years after eye symptoms began.

TED Can Show Up Differently For Everyone

While Jessie and Will’s stories appear different on the surface, they are similar in a number of key ways. Both of their journeys began with smaller signs and symptoms that were easy to dismiss despite the way they affected their daily lives over time. And both of them had to advocate for themselves, while searching for the right specialist.

For Jessie, her experience showed the importance of acting quickly when something feels off. “Don’t wait,” she says. “Think about your own body, how you feel and what you know about your norm, and use that as a jumping off point for advocacy.” Her advice underlines how important it is for those experiencing even one core sign or symptom of TED, like eye bulging or double vision, to talk to their doctor. “It can get worse over time,” Jessie adds, “so that advocacy is the most important thing you can do.”

Will’s experience offers an example of how people living with TED may have periods of stability before symptoms progress, relapse, or worsen. He volunteered similar advice, adding that it’s important to “be a champion of your own health. You can’t be satisfied with simple answers because it’s what you want to hear.”

Paying attention to symptoms, seeking timely attention, and taking action if you’re noticing new or worsening symptoms or a greater impact on daily activities is crucial to addressing TED symptoms.

Finding Treatment

Both Jessie and Will decided to move forward with TEPEZZA^® (teprotumumab-trbw), an infusion medicine and the first FDA-approved treatment for adults with TED, regardless of disease activity or how long it’s been since you were diagnosed.

IMPORTANT SAFETY INFORMATION:

What is the most important information I should know about TEPEZZA?

Infusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.

See additional IMPORTANT SAFETY INFORMATION below.

Like many people starting a new medicine, Will had questions about how TEPEZZA works. He was initially hesitant because he thought it was a treatment for thyroid disorder, but his doctor clarified that TEPEZZA targets a root cause of TED and was designed to block the body’s response to this autoimmune condition that can cause symptoms.^* Will was also initially concerned about receiving an infused treatment, but was able to make the infusions work well with his schedule. This reframing, along with his treatment experience, increased Will’s comfort with his treatment plan.

^*The exact nature of how TED develops and progresses is not entirely understood, therefore, precisely how TEPEZZA works is not fully established.

After TEPEZZA, both Jessie and Will saw improvements that mattered to them.

In a clinical study of patients who had TED for 9 months or less, more than 8 out of 10 people who took TEPEZZA saw reduced eye bulging by at least 2 mm, compared to 1 out of 10 who took placebo. Similar clinical studies showed that nearly 7 out of 10 people who took TEPEZZA saw improvements in double vision, compared to 3 out of 10 who took placebo.

TEPEZZA’s impact on symptoms of inflammation was also studied among people in that same trial population who experienced eye pain, redness, and swelling as part of their TED. Of those patients, 2 out of 3 people who completed treatment with TEPEZZA had little to no eye pain including pain behind the eye and when moving the eye, redness of the eye and eyelid, or swelling of the eye and eyelid.^†

^†In combined results from two studies, TED patients’ levels of inflammation were recorded using their Clinical Activity Score (CAS), which is a tool that doctors use to assess their patients’ TED symptoms. It evaluates for the presence of 7 symptoms in the eyes and surrounding area: pain that happens for no apparent reason; pain due to looking at something for too long; eyelid swelling; eyelid redness; redness of the eye itself; swelling of the eye, and inflammation in the inner corner of the eye. The higher the CAS number (from 0 to 7), the more serious the impact of TED is seen to be.
In patients with a CAS of at least 4 at the start of treatment, by the end of treatment 62% (52 of 84) of those treated with TEPEZZA had a CAS of 0 or 1 (seen as inactive disease state) compared to 22% (18 of 87) of those who were treated with placebo.
Each of the 7 symptoms is counted equally toward a single overall score, even though that may not reflect their impact to the individual patient. For example, if a patient has eye redness and eye pain, but is only really bothered by the eye pain, each symptom still adds to the overall score by 1.

IMPORTANT SAFETY INFORMATION (cont’d):

Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA: high blood pressure, difficulty breathing, fast heartbeat, headache, redness of the face/feeling hot, or muscle pain.

TEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, even if you don’t have a diagnosis of IBD before starting TEPEZZA treatment.

Tell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there’s little or no stool to pass.

See additional IMPORTANT SAFETY INFORMATION below.

Jessie and Will have gotten back to doing the things that are most important to them. “We’re back to business,” Jessie shared. “I don’t have to tell [my kids] ‘no’ when they ask to go to the park. It’s nice to be able to do what I was doing and do what I enjoy.”

“It’s definitely helped with confidence doing my job,” Will said, noting that improvements in his eye symptoms, including swelling, made it easier to manage his day-to-day responsibilities. “I feel more confident in driving…especially when driving my kids around. There’s a level of comfort knowing we figured it out because it was a confusing process and we feel like things are manageable again.”

One of the possible side effects of using TEPEZZA is hearing impairment, which in some cases may be severe and permanent. But “hearing impairment” doesn’t always mean hearing loss—hearing may sound muffled, unclear, distorted, or different in certain sound ranges. In clinical studies with people who had TED for 9 months or less, hearing impairment occurred in 10% of patients, with 88% of cases resolved during the study or follow-up period. That was Jessie’s experience as well.

For Jessie, “it was basically like someone had blown a bubble over my head,” she said, noting that it wasn’t that she experienced total hearing loss, but that sounds were “just a little dim.” Fortunately, Jessie experienced no lasting hearing damage.

Even Moderate TED Deserves Attention

Because TED is a complex condition that can worsen over time, Jessie and Will’s experiences show how important it can be to connect with doctors who understand the disease and can help people recognize and manage symptoms.

“One of the challenges with Thyroid Eye Disease is that it doesn’t look the same for everyone. Symptoms can be subtle and easy to dismiss, yet even moderate TED can affect how people see, feel, and function each day,” says Jeff Todd, president and CEO of Prevent Blindness, a national patient advocacy organization dedicated to vision and eye health. “It’s important to encourage anyone noticing changes in their eyes or vision to seek care early, because timely diagnosis and connection to a specialist may make a meaningful difference in your eye health.”

“Answers are out there,” Will noted. “You just have to speak up and connect with the right doctor to find them.”

IMPORTANT SAFETY INFORMATION (cont’d)

TEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.

TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.

Before receiving TEPEZZA, tell your doctor if you:

Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).

Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.

Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.

Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.

Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What are the possible side effects of TEPEZZA?

The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin, ear discomfort, weight loss, nail problems, and changes in menstruation.

This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.

Please see Full Prescribing Information or visit TEPEZZA.com for more information.

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