Answering Common Patient Questions About Cushing Syndrome

Cushing syndrome has made headlines recently after a celebrity was diagnosed with this relatively rare condition. Patients with Cushing syndrome have too much of the adrenal hormone called cortisol, which can cause changes in physical appearance and life-threatening medical conditions. Given the recent coverage of the telltale symptoms of Cushing syndrome and its effects on the body, patients may be curious about the condition and steps to take if they may be at risk.

Here are answers to some of the most pressing patient questions around Cushing syndrome.

1. What causes Cushing syndrome?

Adrenal glands release hormones that help control blood pressure, heart rate, balance of water and salt, response to stress, and more. Cushing syndrome occurs when these glands release too much of the hormone cortisol, or you are taking a hormone like cortisol.

This typically has one of two causes:

• a tumor in the adrenal glands or cancer in another part of the body
• taking a corticosteroid medicine for a long time

Corticosteroids (often just referred to as steroids) are prescribed for serious medical conditions, including inflammatory, allergic, and autoimmune disorders.

It’s important to note that Cushing syndrome is different from Cushing disease. Cushing disease refers specifically to Cushing syndrome with a specific cause -- overstimulation of the adrenal glands because of a pituitary tumor.

Sometimes, patients believe that because cortisol is a stress hormone, their Cushing disease is caused by stress in life. That’s not true. There’s no evidence that any particular lifestyle causes Cushing syndrome.

 

2. What are the symptoms of Cushing syndrome?

Cortisol is an essential hormone in the body. Having too much can cause many changes, including increases in blood sugar and cholesterol. Corticosteroids also alter the amount and distribution of body fat.

. Other symptoms of Cushing syndrome include:

• Large round face (called a “moon face”)
• Large amounts of belly fat and fat at the top of your back (called a "buffalo hump")
• Thin skin that bruises easily and heals slowly
• Purple streaks that look like stretch marks on your chest and belly
• Getting tired easily
• Sometimes, extra face and body hair
• In females, sometimes hair loss from their head

Over time, high corticosteroid levels raise the blood pressure (hypertension), weaken bones (osteoporosis), and diminish resistance to infections. The risk of developing kidney stones, diabetes, and blood clots in veins is increased, and psychological disorders and symptoms, including depression and hallucinations, may occur.

Cushing syndrome can be life-threatening. Very high cortisol will lower your potassium level, which can cause heart problems. Very high levels of cortisol will suppress the immune system, and patients with Cushing syndrome can suddenly become overwhelmed by an infection they would have otherwise fought off easily.

3. What can I expect at a doctor’s appointment for Cushing syndrome?

For patients not taking high levels of steroids, Cushing syndrome is rare, and many symptoms can have other causes. At the same time, the physical changes can be a good indicator of Cushing syndrome. 

Often, patients notice the changes in physical appearance, prompting a visit to the doctor. If you’re experiencing these symptoms, it’s a good idea to see your primary care doctor right away. Bring some photos of yourself from a few years ago so doctors can see how your body may have changed. Doctors will also ask about anything that could increase steroid levels, such as using creams with steroids or inhaled steroids, as well as recreational drug use.

If a doctor suspects high levels of cortisol, there are a few methods they can use to further diagnose the issue and determine if the patient has Cushing syndrome. This may include measuring cortisol levels in saliva, urine, and/or blood, medication to temporarily suppress cortisol levels, or imaging tests.

Once a patient is diagnosed with Cushing syndrome, it’s important to see a specialist for further guidance and treatment. Treatment will depend on whether the problem is in the adrenal glands, the pituitary gland, or elsewhere. For those taking steroids, doctors may recommend a change in medication. Other treatments may include a diet high in protein and potassium, medications that decrease cortisol levels or block the effects of cortisol, or surgery or radiation therapy.

People who have both their adrenal glands removed as treatment for Cushing disease that did not resolve with surgery and/or radiation to the pituitary may develop Nelson syndrome., where the pituitary tumor enlarges and they become pigmented.

4. Is it safe to take steroids?

Steroids can be a game-changing treatment for many patients, but they do have a risk of side effects. They need to be taken as prescribed. Doctors never stop the use of corticosteroids abruptly if people have been taking them for more than 2 or 3 weeks. Instead, doctors gradually reduce (taper) the dose over weeks and sometimes months.

Patients should know that no matter the cause, Cushing syndrome is treatable. For more on Cushing syndrome, visit the Manuals page or the Quick Facts on the topic.