What is Cushing syndrome?

Cushing syndrome is a hormonal disorder. It’s caused when you have high levels of the hormone cortisol over a long time. Cushing syndrome is fairly rare. It most often affects adults who are 20 to 50 years old. It is sometimes called hypercortisolism. You will likely need to see a specialist in hormone-related diseases called an endocrinologist. This is so the healthcare provider can confirm your diagnosis and help you look at choices for care.

What causes Cushing syndrome?

Cushing syndrome happens when you have too much cortisol in your body. When the disorder starts with the pituitary gland, the condition is called Cushing disease. The gland makes too much adrenocorticotropic hormone (ACTH). That causes the adrenal glands to make too many corticosteroids (mainly cortisol).

Another main cause is taking steroid medicines like prednisone for a long time. These are sometimes used to treat chronic diseases such as asthma or rheumatoid arthritis. Other causes include:

• Some types of lung cancer

• Noncancerous (benign) or cancerous tumors on the adrenal glands

• An inherited endocrine disorder

Who is at risk for Cushing syndrome?

You may be more likely to get Cushing syndrome if you:

• Are overweight or obese

• Have type 2 diabetes that is not under control and have high blood pressure

What are the symptoms of Cushing syndrome?

Each person may have symptoms in a different way. These are the most common symptoms:

• Upper body obesity in the face, neck, torso, and belly

• Round face

• Increased fat around neck or a fatty hump between the shoulders 

• Thinning arms and legs

• Fragile and thin skin, including bruising with only minor injuries

• Acne on the face, neck, or shoulders

• Wide, often purple stretch marks on belly, thighs, buttocks, arms, and breasts

• Bone and muscle weakness, including bone breaks (fractures)

• Severe tiredness (fatigue)

• High blood pressure

• High blood sugar

• Irritability and anxiety or depression

• Insomnia

• Extra facial and body hair growth in people assigned female at birth

• Irregular or stopped menstrual cycles

• Reduced sex drive and fertility in people assigned male at birth

These symptoms may be caused by other health problems. Always see your healthcare provider for a diagnosis.

How is Cushing syndrome diagnosed?

Your healthcare provider will ask about your past health. You will also need a physical exam. These procedures may also help with a diagnosis:

• 24-hour urinary test. This is to measure the level of cortisol and other corticosteroid hormones.

• CT scan. This scan uses X-rays and computer technology to make images of the body.

• MRI. This scan uses radio waves and magnets to create 2-D views of an internal organ or structure.

• Dexamethasone suppression test. This test can tell if a person has a large increase in cortisol production that would need more testing. More tests would be needed to find if the extra hormones are from the pituitary gland or from a tumor elsewhere in your body.

• Other tests. These usually include a late-evening salivary cortisol level and blood cortisol level at various times of the day.

How is Cushing syndrome treated?

Treatment will depend on your symptoms, age, and general health. It will also depend on how severe the condition is.

Treatment depends on what is causing Cushing syndrome. You may need surgery to remove a tumor of the pituitary gland or of the adrenal glands. Other treatments may include:

• Radiation

• Chemotherapy

• Some hormone-inhibiting medicines

When should I call my healthcare provider?

Tell your healthcare provider if your symptoms return or get worse. Also let them know if you get new symptoms.

Key points about Cushing syndrome

• Cushing syndrome happens when the levels of cortisol in the body are too high. This can be caused by the pituitary gland making too much adrenocorticotropic hormone (ACTH). That causes the adrenal glands to make too many corticosteroids. It can also be caused by taking steroid medicines for a long time. Or it may be caused by tumors, likely in the adrenal glands, that make cortisol.

• Cushing syndrome is fairly rare. It most often affects adults who are 20 to 50 years old.

• Symptoms may include upper body obesity, round face, and thin skin.

• Treatment depends on the cause. It may include surgery, radiation, chemotherapy, or medicines.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.