12 Signs of Cushing Syndrome and What to Do if You Think You Have the Condition
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Experts share signs and symptoms of Cushing syndrome, the condition with which Amy Schumer was recently diagnosed.
The actress said it was brought on by having high doses of steroid injections.
Here, find signs, symptoms, treatment options, and more.
Amy Schumer has been vocal about her annoyance at public commentary on her appearance. But the Life of Beth star said in a new interview that people openly talking about her puffy face helped her to get a diagnosis for a condition she didn’t know she had. Now, the 42-year-old has a diagnosis she’s sharing publicly: She has Cushing syndrome. But what is the condition; and what are its signs and symptoms beyond Schumer’s?
Schumer shared in the News Not Noise newsletter late last week, that she has exogenous Cushing syndrome that was brought on by getting steroid injections in high doses. (Exogenous means it was caused by factors outside the body.)
“I feel reborn,” Schumer said. “There are a few types of Cushing. Some that can be fatal, require brain surgery or removal of adrenal glands. While I was doing press on camera for my Hulu show, I was also in MRI machines four hours at a time, having my veins shut down from the amount of blood drawn and thinking I may not be around to see my son grow up.”
Meet the experts: Daniel F. Kelly, M.D., is a board-certified neurosurgeon and director of the Pacific Brain Tumor and Pituitary Disorders Centers at Providence Saint John’s Health Center in Santa Monica, CA; Luma Ghalib, M.D., is an endocrinologist at The Ohio State University Wexner Medical Center; Christoph Buettner, M.D., Ph.D., is chief of the division of endocrinology at Rutgers Robert Wood Johnson Medical School; Lawrence Kirschner, M.D., Ph.D., is an endocrinologist at The Ohio State University Wexner Medical Center.
Schumer said that she learned that she has a type of Cushing syndrome “that will just work itself out” and that she’s healthy overall, calling that “the greatest news imaginable.”
Schumer said that it was a “crazy couple of weeks for me and my family,” pointing out that she also had to listen to internet commentary about her appearance while she was going through testing. “But thank God for that. Because that’s how I realized something was wrong,” she said.
Cushing syndrome, also called Cushing’s syndrome, isn’t a well-known condition and it’s understandable to have questions about what it is and what causes it. Here’s the deal.
What is Cushing syndrome?
Cushing syndrome is a condition that occurs when your body makes too much of the hormone cortisol over a long period, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
Cortisol helps your body respond to stress—which is probably what it’s best known for. But the NIDDK points out that it also helps maintain blood pressure, regulate blood sugar, reduce inflammation, and turn the food you eat into energy.
Cortisol is made by the adrenal glands, which are two small glands that sit on top of your kidneys. Cushing syndrome is considered a rare condition, the NIDDK says.
“It is much more common in women than men and, while it can develop at any age, it tends to manifest between ages 25 to 55 years,” says Daniel F. Kelly, M.D., a board-certified neurosurgeon and director of the Pacific Brain Tumor and Pituitary Disorders Centers at Providence Saint John’s Health Center in Santa Monica, CA.
What causes Cushing syndrome?
Cushing syndrome can be endogenous—meaning, it happens from within your body—or exogenous, which means it’s caused by outside sources like side effects from certain medications, the Cleveland Clinic notes.
The most common cause of Cushing syndrome is long-term, high-dose use of glucocorticoids, medications used to treat other medical conditions like asthma, rheumatoid arthritis, and lupus, the NIDDK states. “Because steroid drugs are very commonly prescribed, Cushing syndrome is more often due to steroid drugs prescribed or abused—from doping—than due to endogenous overproduction,” says Christoph Buettner, M.D., Ph.D., chief of the division of endocrinology at Rutgers Robert Wood Johnson Medical School.
But, endogenous Cushing syndrome can happen from several types of tumors that cause the body to make too much cortisol.
With tumors, “two-thirds of the cases, the tumor is in the pituitary and one-third is in the adrenal gland,” says Luma Ghalib, M.D., an endocrinologist at The Ohio State University Wexner Medical Center. “It very rarely can hide in other parts of the body.”
Cushing syndrome symptoms
Not everyone has the same symptoms with Cushing syndrome, but the Cleveland Clinic says they may include:
Rapid weight gain in the face, abdomen, back of the neck, and chest
A red, round face
Poor wound healing
High blood pressure
Excessive hair growth on the face, neck, chest, abdomen, breasts, and thighs, or balding
Purple stretch marks over the abdomen
Easy bruising on the arms and legs
General weakness and fatigue
Blurry vision and dizziness
Weak muscles and thinner arms and legs
Libido changes and erectile dysfunction
Stunted growth in children
How do doctors diagnose Cushing syndrome?
Cushing syndrome can be tricky to diagnose since symptoms like weight gain and fatigue can be caused by a range of conditions. “Clinching a diagnosis of Cushing’s disease can be quite challenging,” Dr. Kelly says. “In fact, some endocrinologists consider it one of the toughest diseases to diagnose in all of medicine.”
However, if your doctor suspects you have Cushing syndrome, they may check for elevated cortisol via a combination of urine, saliva, and blood tests to make the diagnosis, the NIDDK says.
But, that doesn’t always mean a Cushing diagnosis, so it’s important to confer with your doctor. Once you’ve been diagnosed, your doctor will usually do additional tests to try to figure out why you have the condition. “It is a treatable condition,” Dr. Ghalib says. “Thinking about it and doing the core testing is a key.”
Cushing syndrome treatments
Treatment for Cushing syndrome depends on what’s causing it in the first place. In the case of glucocorticoids, doctors may gradually reduce your dosage to the lowest dose that will control the condition you’re taking the medication for or look for an alternative medication altogether, the NIDDK says.
However, if your Cushing syndrome is caused by a tumor—on your pituitary gland or adrenal gland—it’s usually removed by surgery. However, if the tumor is cancerous, chemotherapy may be needed, the NIDDK says. If it can’t be removed by surgery, radiation therapy may help.
Most people with Cushing syndrome are cured with treatment, according to the National Institute of Child Health and Human Development (NICHD).
If Cushing syndrome is properly treated, it may go away within two to 18 months, per the Cleveland Clinic.
When to see a doctor
If you develop symptoms of Cushing syndrome, it’s time to contact your doctor. They can give you a physical exam, as well as order testing if needed. “For anyone that is receiving steroids—pills, injections, steroid nasal spray—and is experiencing symptoms, it is worth discussing with your doctor if there might be non-steroid-based alternatives,” says Lawrence Kirschner, M.D., Ph.D., an endocrinologist at The Ohio State University Wexner Medical Center.
If you feel like your concerns are being brushed off, Dr. Kelly recommends continuing to try to get answers. “Given the complexities of diagnosis and treatment of Cushing’s disease, it is critical that patients persist in getting to experienced clinicians in the management of this disorder,” he says.
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