Cushing syndrome occurs due to abnormally high levels of cortisol, which is commonly related to steroid use. Symptoms include weight gain, thinning skin, fluid retention, and stretch marks, among others.

Researchers estimate that up to 15 million people in the United States have Cushing syndrome, or hypercortisolism. It’s more common in adults ages 20 to 50 years, though children may also experience the condition.

Cushing syndrome can happen for a variety of reasons.

In most cases, getting treatment can help you manage your cortisol levels.

Language matters

In this article, we use the terms “male” and “female” to refer to someone’s sex as determined by their chromosomes.

Sex and gender are acknowledged to exist on a spectrum both historically and by modern scientific consensus.

Learn more about sex and gender.

A drawing of some of the common symptoms of Cushing syndromeShare on Pinterest
Illustration by Yaja’ Mulcare

Cushing syndrome may cause a wide range of symptoms, including:

Some symptoms may also be more specific to certain groups of people, such as children and people assigned male or female at birth.

Cushing syndrome in children

Children can have Cushing syndrome, although they develop it less frequently than adults. According to a 2018 review, about 1 in 10 new cases of Cushing syndrome each year occur in children.

In addition to the symptoms above, children with Cushing syndrome may also have obesity and a slower rate of growth.

Cushing syndrome in females

Cushing syndrome is more prevalent in females than in males. According to the National Institutes of Health, three times as many females develop Cushing syndrome compared with males.

Females with Cushing syndrome may develop extra facial and body hair, which most often occurs on the:

  • face and neck
  • chest
  • abdomen
  • thighs

Additionally, females with Cushing syndrome may experience irregular menstruation. In some cases, menstruation is absent altogether. Untreated Cushing syndrome in females may lead to difficulties becoming pregnant.

Cushing syndrome in males

People assigned male at birth who have Cushing syndrome can also experience additional symptoms, including:

Cushing syndrome can occur when you have high levels of the hormone cortisol in your body for a long period. Cortisol is produced by your adrenal glands.

Cortisol helps with a number of your body’s functions, including:

Your body may produce high levels of cortisol for a variety of reasons, including high stress levels or having a mental health condition like alcohol use disorder or depression.

However, experts note that Cushing syndrome is caused by long term stress related to corticosteroid use or tumors in the body.

Corticosteroids

The most common cause of Cushing syndrome is the use of corticosteroid medications, such as prednisone, in high doses for a long period.

Healthcare professionals can prescribe corticosteroids to treat a wide range of inflammatory diseases, such as lupus, asthma, eczema, and inflammatory bowel disease, among others.

High doses of corticosteroids in the form of injections are more likely to cause Cushing syndrome. Lower dose steroids in the form of inhalants and creams usually aren’t enough to cause the condition.

The one caveat is prolonged topical steroid use in children, which is connected to Cushing syndrome.

Tumors

Several kinds of tumors can also lead to a higher production of cortisol. Some of these include:

  • Pituitary gland tumors: When you have pituitary gland tumors, the pituitary gland releases too much adrenocorticotropic hormone (ACTH), which stimulates cortisol production in the adrenal glands. This is called Cushing disease.
  • Ectopic tumors: These are tumors outside of the pituitary that produce ACTH. Ectopic tumors usually occur in the lung, pancreas, thyroid, or thymus gland.
  • Adrenal gland abnormality or tumor: An adrenal abnormality or tumor can lead to irregular patterns of cortisol production, which can cause Cushing syndrome.
  • Familial Cushing syndrome: Although Cushing syndrome isn’t typically inherited, it’s possible to have an inherited tendency to develop tumors of the endocrine glands.

Cushing syndrome vs. Cushing disease

Cushing disease is when Cushing syndrome is caused by the pituitary gland overproducing ACTH, which in turn stimulates cortisol production.

As with Cushing syndrome, Cushing disease affects more females than males.

The main risk factor for developing Cushing syndrome is taking high dose corticosteroids over a long period of time. If your doctor has prescribed corticosteroids to treat a health condition, ask them about the dosage and how long you’ll be taking them.

Other risk factors for developing Cushing syndrome may include:

  • genetics
  • being over 20 years old
  • being assigned female at birth
  • living with pituitary or adrenal tumors
  • having diabetes, high blood pressure, peptic ulcers, electrolyte disorders, or mental health conditions

Cushing syndrome can be particularly difficult to diagnose. This is because many of the symptoms, like weight gain or fatigue, can have other causes. Additionally, Cushing syndrome itself may have many different causes.

A healthcare professional will review your medical history. They’ll ask questions about symptoms, health conditions you may have, and any medications you’re taking.

They’ll also perform a physical examination to look for signs like a bump between your shoulders, stretch marks, and bruises.

Next, they may order lab tests, including:

Cushing syndrome is an endocrine disorder, so it may be a good idea to follow up with an endocrinologist.

Diagnosing the cause of Cushing syndrome

After you receive a diagnosis of Cushing syndrome, a doctor must still determine the cause of the excess cortisol production.

Tests to help determine the cause may include:

  • Blood ACTH test: Low ACTH levels and high cortisol levels may indicate the presence of an adrenal tumor.
  • Corticotropin-releasing hormone (CRH) stimulation test: In this test, you’re given a shot of CRH. This will raise levels of ACTH and cortisol in people with pituitary tumors.
  • High dose dexamethasone suppression test: This is the same as the low dose test, except a higher dose of dexamethasone is used. If cortisol levels drop, you may have a pituitary tumor. Higher cortisol levels may indicate an adrenal tumor or ectopic tumor.
  • Petrosal sinus sampling: Blood is drawn from a vein near the pituitary and from a vein far from the pituitary. A shot of CRH is given, and if ACTH rises in the blood near the pituitary, it can indicate a pituitary tumor. Similar levels from both samples indicate an ectopic tumor.
  • Imaging studies: These may include CT and MRI scans to look for tumors on the adrenal and pituitary glands.

The overall goal of Cushing syndrome treatment is to lower the levels of cortisol in your body. Your treatment plan will depend on the underlying cause.

If your condition is caused by taking steroid medications, a doctor will recommend lowering your dose or suggest an alternative nonsteroidal treatment.

A doctor may also prescribe a medication to help manage cortisol levels. Some drugs decrease cortisol production in the adrenal glands or decrease ACTH production in the pituitary gland. Others block the effect of cortisol on your tissues.

Examples of medications may include:

  • ketoconazole (Nizoral)
  • mitotane (Lysodren)
  • metyrapone (Metopirone)
  • pasireotide (Signifor)
  • mifepristone (Korlym, Mifeprex) in those with type 2 diabetes or glucose intolerance

For pituitary, endocrine, and adrenal tumors, the first-line treatment is surgical removal.

If surgery doesn’t work or the cancer has spread, a healthcare professional may recommend other cancer treatments like radiation therapy or chemotherapy.

Some lifestyle and dietary changes may help you manage your cortisol levels and prevent complications.

Lifestyle tips for those with Cushing syndrome include:

A healthcare professional may recommend other ways to help you manage your cortisol levels.

If left untreated, Cushing syndrome can lead to a variety of potentially serious health complications, including:

How long can you have Cushing’s syndrome without knowing?

Some people may have Cushing syndrome for months or years without ever knowing it. If you experience symptoms of Cushing syndrome, speak with a doctor. Treatment could help relieve symptoms and increase your quality of life.

Why do you gain weight with Cushing’s?

The causes of weight gain in Cushing syndrome are multifactorial and related to the effects of cortisol in the body. According to a 2013 review, cortisol may cause weight gain by:

  • increasing appetite
  • altering fat distribution
  • enhancing the activity of lipoprotein lipase in visceral adipose tissue
  • promoting muscle breakdown
  • causing insulin resistance

How do you feel when your cortisol is high?

Some common symptoms of high cortisol may include stress, fatigue, headaches, unexplained weight gain, muscle weakness, bone pain, skin injuries, and easy bruising, among others.

How do I find out if I have Cushing’s disease?

If you’re experiencing symptoms of Cushing disease, speak with a general practitioner. They could assess your symptoms and perform tests to help determine the underlying cause. They could also refer you to a specialist for further testing and treatment, if needed.

Cushing syndrome involves the release of too much cortisol in the body. There are a variety of different causes of Cushing syndrome, from the long-term use of steroid medication to tumors on the adrenal glands.

The sooner you begin treatment for Cushing syndrome, the better the expected outcome. It’s important to note that your individual outlook depends on the specific cause and treatment you receive.

It may take some time for your symptoms to improve. Be sure to ask a healthcare professional for dietary guidelines, keep follow-up appointments, and increase your activity level slowly.

Support groups can help you cope with Cushing syndrome. Your local hospital or doctor can provide you with information about groups that meet in your area.