Internet trolls partly aided doctors in diagnosing Amy Schumer with Cushing syndrome, but patients can go years without a diagnosis.

Schumer opened up about her February 2024 diagnosis on the “Call Her Daddy” podcast Wednesday, crediting online criticism about her swollen face – a telltale sign of the hormonal disorder.

Cushing syndrome is an uncommon condition when the body has too much cortisol, said Dr. Divya Yogi-Morren, medical director of the pituitary center at the Cleveland Clinic. Cortisol, known as the “stress hormone,” influences how the body handles stress and plays a vital in keeping the body healthy.

“It helps us wake up in the morning, keeps our energy steady throughout the day and dips in the evening so that we can sleep,” she said.

Cushing syndrome can be difficult to diagnose because providers don’t immediately think of the condition when a patient comes into the office reporting fatigue and weight gain. It’s also often confused with polycystic ovary syndrome, or PCOS, or metabolic syndrome, Yogi-Morren said.

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“For some people, it can take years to figure out what’s going on,” she said. “The average diagnostic delay in Cushing’s syndrome is approximately two to three years.”

Patients who take cortisol medication, sometimes to treat asthma and arthritis, are also at increased risk of developing Cushing syndrome. Schumer said her diagnosis was the result of steroid injections from her breast reduction and Cesarean section after her first child.

Cushing syndrome is rare, affecting up to 70 out of a million people each year.

About 70% of people with Cushing syndrome are women or people assigned female at birth, according to the Cleveland Clinic. People between 25 and 50 are most likely to be affected by the condition.

Common symptoms include a red, round face; easy bruising and poor wound healing; high blood pressure; excessive hair growth in the face, neck, chest, abdomen, breast or thighs; purple stretch marks over the abdomen; a fat pad between shoulders; general weakness or tiredness; blurry vision and dizziness; weakened muscles; thinner arms and legs; and libido changes.

Cushing syndrome can be difficult to diagnose because providers don’t immediately think of the condition when a patient comes into the office reporting fatigue and weight gain.  

Without treatment, the Cleveland Clinic said high cortisol levels could lead to other health problems such as infections, blood clots, depression, heart attack, weight gain, memory problems, difficulty concentrating, high blood pressure or high cholesterol.

To determine if a patient has Cushing syndrome, doctors conduct tests to find out if the body is making too much cortisol, Yogi-Morren said. They can also check for another hormone called ACTH, which is made by the pituitary gland when the body is stressed. Once doctors have a confirmed diagnosis, the next step is determining the cause.

Most cases are caused by either a medication or tumor. If a patient is taking medication that could lead to Cushing syndrome, the doctor will lower the dosage or prescribe a non-glucocorticoid medication, which can reduce inflammation without steroids.

If a patient isn’t on medication, the doctor will order scans to see if there might be a tumor causing Cushing syndrome. Tumors in the adrenal gland account for up to 20% of Cushing syndrome cases, Yogi-Morren said.

Adrianna Rodriguez can be reached at [email protected].