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Three years ago, Jesse was living her very best life. An avid hiker, travel enthusiast and professional photographer, she was never short on energy, always up for her next challenge. Then, one morning, she woke up with a swollen face, lips and eyes.
"At first, I shrugged it off as an allergic reaction, but my primary doctor didn't seem to know what was going on," said Jesse. "I decided to mention the symptoms to my OB-GYN. She noticed that my thyroid was enlarged and suggested I speak to an endocrinologist."
What happened next frightened Jesse. She began to rapidly lose weight, experience hair loss, and suffer anxiety and a racing heartbeat. When the endocrinologist finally reviewed her bloodwork, Jesse was not only diagnosed with Graves' disease, but immediately sent to the emergency room due to her high heart rate and severe symptoms. A few hours later, Jesse was discharged, left to navigate this new, confusing and overwhelming diagnosis.
Understanding Graves' disease
Graves' is a common autoimmune disease. In people with autoimmune disease, the body's immune system mistakenly attacks itself.1,2 Certain autoimmune disorders, like Graves', are caused by harmful immunoglobulin G (IgG) autoantibodies - they are often unpredictable, and can prove challenging to control.1,3,4 In Graves' disease, harmful IgG autoantibodies attack the thyroid and cause it to make more hormones than the body needs. The resulting condition is known as hyperthyroidism.1
"Graves' disease needs to be closely managed, because when it's left uncontrolled it can lead to serious health complications," said Mark Lupo, MD, founder and medical director of the Thyroid & Endocrine Center of Florida. "Because the thyroid affects multiple body systems, symptoms that people experience are often very wide-ranging. They can include rapid weight loss, anxiety, tremor, shortness of breath, difficulty concentrating, racing heart, among others."1,5
People with Graves' may also show complications of the disease beyond the thyroid. One of the most common is thyroid eye disease where the harmful IgG autoantibodies impact the muscles and tissues around the eyes causing inflammation, pain and bulging eyes.6,7
A challenging condition to manage
For Jesse, the challenges in managing Graves' disease didn't end after her hospital visit. She continued to experience significant fluctuations in her thyroid hormone levels - often ranging from exceedingly high to dangerously low. Over the next 1.5 years, Jesse and her endocrinologist worked closely to manage her anti-thyroid medications, but her thyroid levels never seemed to even out.
"I just never felt well. I would go from feeling extreme fatigue to hyper-anxiety. I had constant swelling in my legs, and my eyes were always inflamed," said Jesse. "The worst part though was that I started pulling away from all the people and things I loved. It was a depressing time."
According to Dr. Lupo, Jesse's experience is not an uncommon one. "In my practice, we see about one-third of people who aren't optimally treated. These people often fluctuate between hypo- and hyperthyroidism, or can't tolerate medication due to side effects," said Lupo. "The challenge is that current treatments don't actually address the underlying autoimmune disease driver - the harmful IgG autoantibodies."3
Left with few other options, and desperate to feel better, Jesse proceeded with thyroid surgery. While the surgery corrected the symptoms of her hyperthyroidism, she's now left dealing with lifelong thyroid hormone replacement therapy, chronic low calcium levels and extreme fatigue.
Hope for the future
While Jesse's life has changed dramatically since her diagnosis, she shares her story to bring awareness and encouragement to others living with Graves' disease.
"I think it's important for people with Graves' to be proactive," said Jesse. "My advice - reach out to others in the autoimmune disease community, and speak up about your ongoing symptoms. If you aren't feeling right, it's important to talk to your doctor about all of your options."
Today, clinical research is actively advancing to identify treatment options that address the root cause of Graves' disease. Immunovant, a clinical-stage immunology company, is pursuing a patient-focused development approach with a goal to develop additional treatment options in autoimmune disease, including Graves' disease. To learn more, visit https://www.immunovant.com/our-science/pipeline-and-therapeutic-areas.
References:
- Antonelli A., Fallahi P., Elia G., et al. Graves' disease: Clinical Manifestations, immune pathogenesis and therapy. Best Prac Res Clin Endocrinol Metabol. 2020; 34:101388.
- National Library of Medicine. Autoimmune diseases. Available at: https://medlineplus.gov/autoimmunediseases.html Accessed May 2025.
- Kahaly, G., Bartalena, L. et al. 2018 European Thyroid Association Guideline for the Management of Graves' Hyperthyroidism. European Thyroid Journal. 2018; 7:167-186.
- Bartelena L, et al. Front Endocrinol. 2020 Nov 30:11:615993[1]
- Chaker L., Cooper DS., Walsh JP., et al. Hyperthyroidism. Lancet. 2024; 403:768-780.
- Davies, T.F., Andersen, S., Latif, R. et al. Graves' disease. Nat Rev Dis Primers. 2020 Jul 2;6(1):52.
- National Organization for Rare Diseases. Thyroid Eye Disease. Available at: https://rarediseases.org/rare-diseases/thyroid-eye-disease/ Accessed May 2025.
