What Is Cushing’s Syndrome? Symptoms, Causes, Diagnosis, and Treatment

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Cushing’s syndrome happens when your body has too much of the hormone cortisol over a long period of time. Cortisol is often known as a “stress hormone” because it’s a normal part of your body’s stress response, but it also has many other functions in your body.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b5e213d0-f39c-498a-a1b0-6f21e4776d0d People with Cushing’s syndrome often experience weight gain, a round face, increased fat around the base of the neck, muscle weakness, and fragile skin that bruises easily. The most common cause of Cushing’s syndrome is taking a glucocorticoid drug (steroid) such as prednisone, but it can also happen when your adrenal glands produce too much cortisol.e60dc2a1-f33c-4a05-9b50-8e3e8e5976294aa9ecfb-238d-4c6f-8257-49fa6a49c349 Cushing’s syndrome is rare. It’s most commonly diagnosed between ages 30 and 49, and more than two-thirds of people who get it are women, or assigned female at birth.e60dc2a1-f33c-4a05-9b50-8e3e8e597629faf165dc-00db-4a66-a21b-3b247f2266c6
Most cases of Cushing’s syndrome can be diagnosed based on your symptoms and the medications you’re taking. However, if a medication isn’t to blame, the condition can be difficult to diagnose. In that case, your doctor may order a variety of blood, urine, saliva, or imaging tests.e60dc2a1-f33c-4a05-9b50-8e3e8e597629d3c10a03-a7ee-4ac8-a592-cc4cbfd8a1c7 Treatment for Cushing’s syndrome depends on what’s causing it. If it’s caused by a steroid medication that you’re taking, your doctor may lower your dose or switch to another drug. If it’s caused by something else, treatment options may include medications, radiation, or surgery.e60dc2a1-f33c-4a05-9b50-8e3e8e597629f6a34a35-e8a4-45d4-a6a6-ed97359002df
Signs and Symptoms of Cushing’s Syndrome Symptoms The signs and symptoms of Cushing’s syndrome can be different for each person. Even with the most common symptoms, “Importantly, not all patients have all of them,” says Maria Fleseriu, MD , professor of medicine and neurological surgery at Oregon Health and Science University in Portland, who also directs the OHSU Pituitary Center. People with Cushing’s syndrome may experience the following effects:e60dc2a1-f33c-4a05-9b50-8e3e8e5976299101cb18-85c5-4f06-b480-7e2a106ed439 Weight gain Rounded face Increased fat around the base of the neck Thin arms and legs Muscle weakness Fragile skin that bruises easily Purple stretch marks on the abdomen, breasts, or hips Acne Irregular menstrual periods Extra facial and body hair Lower sex drive or erectile dysfunction Less frequent signs and symptoms may include the following, according to Dr. Fleseriu: Sleep disruption Depression or anxiety Difficulty thinking High blood pressure Diabetes Osteoporosis (weakened bones) A small number of people experience what’s known as cyclic Cushing’s syndrome, meaning that symptoms come and go as your body’s cortisol levels become elevated and then return to normal.e60dc2a1-f33c-4a05-9b50-8e3e8e59762936ad508a-1374-4d5d-987f-7a86d8910756
What Causes Cushing’s Syndrome? Causes The causes of Cushing’s syndrome can be divided into two broad categories: exogenous (outside your body) and endogenous (inside your body). Exogenous Cushing’s syndrome is caused by taking medications known as glucocorticoids (or corticosteroids ). These drugs, which include cortisone , dexamethasone , and prednisone , are used to treat a variety of health conditions including asthma , rheumatoid arthritis , and lupus .e60dc2a1-f33c-4a05-9b50-8e3e8e5976297a2d0db3-37c3-4667-a285-67feaeda7881 Any type of glucocorticoid drug, whether it’s taken as an injection, rubbed on your skin, or breathed in using an inhaler, can cause Cushing’s syndrome over time if the doses are large enough.e60dc2a1-f33c-4a05-9b50-8e3e8e5976290e41be68-5c85-48ea-8b39-789edccd54a2 Endogenous Cushing’s syndrome happens when something causes your body to make too much cortisol on its own. Normally, your pituitary gland at the base of your brain releases a hormone called adrenocorticotropic hormone (ACTH). That prompts your adrenal glands, located on top of your kidneys, to produce cortisol. A tumor on your pituitary gland can cause too much ACTH — and then cortisol — to be produced. These are responsible for most endogenous Cushing’s cases. A tumor on an adrenal gland can directly cause too much cortisol production.e60dc2a1-f33c-4a05-9b50-8e3e8e597629bb0935b9-45ae-4348-a1cf-4f64ddf503b4 “A tumor can be in the pituitary or adrenal glands, or more rarely in other organs such as the lungs or pancreas,” says Fleseriu. When a tumor that’s not on your pituitary gland produces ACTH and causes Cushing’s syndrome, it’s known as an ectopic tumor. While pituitary and adrenal tumors are usually benign, ectopic tumors may be cancerous.e60dc2a1-f33c-4a05-9b50-8e3e8e597629b7a5e7cc-2597-4eb6-a3a0-3faefface461
How Is Cushing’s Syndrome Diagnosed? Diagnosis Diagnosing Cushing’s syndrome can be a challenging process. “First, we need to exclude that the patient is taking any steroids” that could cause exogenous Cushing’s syndrome, says Fleseriu. If medications are ruled out, “Testing includes screening, then confirmatory testing as needed,” including imaging scans or other tests to locate any tumor. To screen for endogenous Cushing’s syndrome, your doctor may order one or more of the following tests to look for elevated cortisol levels:e60dc2a1-f33c-4a05-9b50-8e3e8e597629931ad563-89aa-44c4-b3bb-87d79a116077 24-Hour Urinary Cortisol Test You’ll take urine samples as directed over a 24-hour period and give them to your healthcare provider for testing. Salivary Cortisol Test This test typically involves taking a sample of your saliva between 11 p.m. and midnight, and giving this sample to your provider for testing. Dexamethasone Suppression Test This test involves taking a low dose of a steroid drug and then later measuring your body’s cortisol level. People without Cushing’s syndrome will produce less cortisol in response to the drug’s effects. Once endogenous Cushing’s syndrome is diagnosed, your doctor may order one or more of the following tests to locate the tumor that’s causing it:e60dc2a1-f33c-4a05-9b50-8e3e8e597629aa8b0b66-b20c-4429-954c-975fed2e431d Abdominal Scan You may undergo a magnetic resonance imaging (MRI) or computerized tomography (CT) scan of your abdomen to look for a tumor in your adrenal glands. Pituitary MRI An MRI scan of your brain may show a tumor on your pituitary gland. However, these tumors tend to be very small and may not be apparent. Adrenocorticotropic Hormone (ACTH) Blood Test A low level of ACTH in your blood may indicate an adrenal tumor, while a normal or high level may indicate a pituitary or ectopic tumor. Bilateral Inferior Petrosal Sinus Sampling (BIPPS) This test involves inserting a thin tube (catheter) into each of two veins that lead out of your pituitary gland, and taking blood samples to test ACTH levels. That can indicate a pituitary tumor too small to be seen on an MRI.e60dc2a1-f33c-4a05-9b50-8e3e8e597629adcd8882-9b10-425a-8c87-30b484f63ec8
Treatment for Cushing’s Syndrome Treatment If you have exogenous Cushing’s syndrome caused by taking a glucocorticoid medication, your doctor will gradually reduce your dose to the lowest level that still controls whatever condition you’re taking it to treat. They might have to switch you to a different kind of drug.e60dc2a1-f33c-4a05-9b50-8e3e8e597629c05e9bd7-38ba-428b-815b-00f8aefdf5b2 No other treatment is needed to resolve Cushing’s syndrome in this situation, but it may take you several months to recover, Fleseriu notes. If you have endogenous Cushing’s syndrome caused by a tumor, surgery to remove the tumor is recommended in most cases. “Complete resection [removal] of the tumor is the desired goal, but not always possible,” says Fleseriu, especially when it comes to pituitary tumors. “Treatment should be highly individualized.” Surgery Surgery is considered the optimal treatment for a pituitary, adrenal, or ectopic tumor causing Cushing’s syndrome, but it isn’t always a cure. With pituitary tumors, 10 percent or more of surgeries aren’t completely successful and may need to be repeated.e60dc2a1-f33c-4a05-9b50-8e3e8e5976296710f747-2a82-4455-86ac-f2d835aca85a Cushing’s syndrome eventually comes back in about one-third of people who have pituitary surgery.e60dc2a1-f33c-4a05-9b50-8e3e8e597629943a7dcb-7d96-4b1e-8c2a-2bec5c551311 If an ectopic tumor is cancerous, you may need other treatments like radiation and chemotherapy before or after surgery.e60dc2a1-f33c-4a05-9b50-8e3e8e59762975917fa4-5c11-48c1-9f0d-86efd2405ba6 If you have a single adrenal tumor causing your Cushing’s syndrome, you’ll probably have that adrenal gland removed along with the tumor. If both adrenal glands have to be removed, you’ll need to take replacement hormones, including cortisol, for the rest of your life.e60dc2a1-f33c-4a05-9b50-8e3e8e597629f33e82cb-966d-47fe-bc0d-be5c11b14704 Radiation Radiation therapy may be needed when a surgeon can’t completely remove a pituitary tumor, or when surgery is impossible due to the location of the tumor. The aim of radiation is to shrink the tumor, and can be given as one dose or in small doses over six weeks.e60dc2a1-f33c-4a05-9b50-8e3e8e597629335f5204-1e30-4b3a-b89c-94a5f4e5819f It may take years for your cortisol levels to get back down to normal after radiation, so typically you’ll need medication to control them for a period of time.e60dc2a1-f33c-4a05-9b50-8e3e8e59762941e61958-3cbb-4cf6-a6ed-76c508666054 Radiation treatment can also cause your pituitary gland to stop making hormones altogether, and you may need to take pituitary hormone replacement for the rest of your life, Fleseriu notes. Medications Taking medications to control your cortisol levels may be necessary after surgery or radiation, or if those therapies aren’t an option for you. Drugs may also be given short-term before surgery if your Cushing’s symptoms are severe. The following medications may be used to help reduce cortisol production or control its effects in your body:e60dc2a1-f33c-4a05-9b50-8e3e8e597629c084713d-ae10-4103-a68a-1e1a1cb13851 ketoconazole levoketoconazole (Recorlev) metyrapone (Metopirone) mifepristone (Korlym) mitotane (Lysodren) osilodrostat (Isturisa) pasireotide (Signifor) After surgery to remove a pituitary tumor that causes Cushing’s syndrome, your body typically won’t make enough cortisol for six months to a year, or sometimes even longer.e60dc2a1-f33c-4a05-9b50-8e3e8e597629e3248d2a-3f20-4cf7-ad20-688082a39f96 During this period, you’ll need to take a cortisol replacement medication by mouth, such as hydrocortisone.e60dc2a1-f33c-4a05-9b50-8e3e8e5976291e9e2e03-0a97-4ad8-a419-22806377200e Lifestyle Measures and Follow-Up Care Making lifestyle changes isn’t an alternative to effective medical or surgical treatment for Cushing’s syndrome. But once your condition is treated, “A healthy diet and exercise, as tolerated, would be beneficial,” says Fleseriu, since these can improve your overall health and rebuild muscle that may have been lost due to the condition. Swimming, she says, may be a particularly beneficial low-impact exercise. It’s also important, Fleseriu says, to make sure you get screening and care for any psychological issues, like depression, anxiety, or other mood disorders that can go along with Cushing’s syndrome. You may also need specialized care if you have lasting cognitive difficulties, although Fleseriu notes that both psychological and cognitive problems tend to improve over time with effective treatment. You and your doctor should watch for and treat any other health issues you may have related to Cushing’s syndrome, from high blood pressure to blood clots and osteoporosis .
Questions to Ask Your Doctor Could one of my medications be causing Cushing’s syndrome?What tests do I need to find the cause of my symptoms?What treatment do you recommend? Do I need surgery?Do I need to see a specialist?Is there anything else I can do to improve my symptoms?What are the chances Cushing’s disease will come back after treatment?How soon can I expect to feel better?Will the condition or the treatment cause long-term effects? Am I at risk of other illnesses?How often do I need to follow up with you?Who should I talk to about emotional effects of the disease and treatment?Where do you recommend I get more information?
Resources We Trust National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Cushing’s Syndrome Endocrine Society: Cushing’s Syndrome and Cushing Disease Mayo Clinic: Cushing Syndrome Cleveland Clinic: Cushing Syndrome Cushing’s Support and Research Foundation: Homepage

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