Cushing's Disease

What is Cushing's Disease?

Cushing's disease is a rare condition where your body produces too much cortisol. Cortisol is a hormone that helps control stress, blood pressure, and metabolism. When levels stay too high for too long, it can affect many parts of your body.

This disease happens when a small tumor grows in your pituitary gland. The pituitary is a pea-sized gland at the base of your brain. The tumor makes too much ACTH, a hormone that signals your adrenal glands to produce cortisol. Your adrenal glands sit on top of your kidneys and respond by releasing excess cortisol into your bloodstream.

Cushing's disease is different from Cushing's syndrome. The disease specifically refers to pituitary tumors causing high cortisol. The syndrome is a broader term that includes any cause of excess cortisol. About 10 to 15 people per million develop Cushing's disease each year. It affects women more often than men, usually between ages 20 and 50.

Symptoms

  • Weight gain, especially around the face, upper back, and abdomen
  • A rounded, red face often called moon face
  • Purple or pink stretch marks on the skin
  • Thinning skin that bruises easily
  • Slow healing of cuts and infections
  • Muscle weakness, especially in the hips and shoulders
  • High blood pressure
  • High blood sugar or diabetes
  • Mood changes including anxiety, depression, or irritability
  • Irregular periods in women or decreased sex drive in men
  • Excess facial and body hair in women
  • Weak bones that may fracture easily

Symptoms develop slowly over months or years. Many people dismiss early signs as normal weight gain or stress. This delay often means the disease goes undiagnosed for several years before treatment begins.

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Causes and risk factors

Cushing's disease is caused by a benign tumor in the pituitary gland. These tumors are called pituitary adenomas and are almost never cancerous. The tumor produces too much ACTH, which tells your adrenal glands to make excess cortisol. Scientists do not fully understand why these tumors develop, and most cases occur randomly without a clear family history.

Certain factors may increase your risk. Women are three times more likely to develop the condition than men. Most cases appear between ages 20 and 50. Taking corticosteroid medications like prednisone for conditions such as asthma or arthritis can cause similar symptoms, but this is not Cushing's disease. Long-term steroid use leads to Cushing's syndrome instead. Rarely, genetic conditions may increase the risk of pituitary tumors.

How it's diagnosed

Doctors diagnose Cushing's disease through multiple steps. First, they test for high cortisol levels using saliva, urine, or blood samples. Common tests include 24-hour urine cortisol collection and late-night salivary cortisol tests. Blood tests measure ACTH levels to determine if the pituitary is producing too much of this hormone. Rite Aid offers ACTH plasma testing as an add-on to help detect abnormal hormone levels at Quest Diagnostics locations nationwide.

If initial tests suggest Cushing's disease, imaging studies follow. MRI scans of the pituitary gland can identify tumors, though some are too small to see clearly. A petrosal sinus sampling test may be needed in complex cases. This involves taking blood samples directly from veins near the pituitary to confirm the tumor location. The diagnostic process can take several months because doctors must distinguish Cushing's disease from other causes of high cortisol.

Treatment options

  • Surgery to remove the pituitary tumor is the first choice for most patients
  • Transsphenoidal surgery enters through the nose and has a success rate of 70 to 90 percent
  • Medications that block cortisol production may be used if surgery cannot remove the entire tumor
  • Radiation therapy can shrink remaining tumor tissue after surgery
  • Medications like ketoconazole, metyrapone, or mifepristone help lower cortisol levels
  • In severe cases, removing both adrenal glands may be necessary
  • After treatment, hormone replacement therapy may be needed temporarily or permanently
  • Regular follow-up blood tests monitor cortisol and ACTH levels
  • Eating a balanced diet with limited salt and sugar supports recovery
  • Weight-bearing exercise helps rebuild bone strength and muscle mass
  • Managing blood pressure and blood sugar becomes essential for long-term health

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Frequently asked questions

Cushing's disease is a specific type of Cushing's syndrome. The disease happens only when a pituitary tumor causes excess cortisol production. Cushing's syndrome is a broader term that includes any cause of too much cortisol, including adrenal tumors, lung tumors, or long-term steroid medication use. All cases of Cushing's disease are Cushing's syndrome, but not all Cushing's syndrome is Cushing's disease.

Diagnosis requires multiple tests over several weeks or months. Doctors measure cortisol levels through 24-hour urine collection, late-night saliva tests, or blood draws. Blood tests check ACTH levels to see if the pituitary is making too much of this hormone. MRI scans look for pituitary tumors. In complex cases, petrosal sinus sampling takes blood directly from veins near the pituitary to confirm the tumor location.

Yes, most people can be cured with surgery. Transsphenoidal surgery removes the pituitary tumor through the nose and has success rates of 70 to 90 percent. Some patients need additional treatment with medications or radiation if the tumor returns or cannot be fully removed. After successful treatment, symptoms gradually improve over several months to years. Regular monitoring ensures cortisol levels stay in a healthy range.

Early signs include gradual weight gain, especially in the face and upper body. You might notice your face becoming rounder and redder. Skin changes like purple stretch marks, easy bruising, and slow healing appear early on. Many people also experience muscle weakness, fatigue, and mood changes like depression or anxiety. These symptoms develop slowly, so they are often mistaken for normal aging or stress.

Most cases of Cushing's disease occur randomly and are not inherited. The pituitary tumors that cause this condition usually develop without a clear genetic cause. Rarely, certain genetic syndromes like multiple endocrine neoplasia type 1 can increase the risk of pituitary tumors. If you have a family history of endocrine tumors, talk to your doctor about your risk and screening options.

Recovery takes time and varies by person. Physical symptoms like weight gain and muscle weakness improve gradually over 6 to 12 months after successful treatment. Some changes, like bone loss and skin thinning, may take longer to reverse. Many patients need temporary hormone replacement therapy after surgery while their pituitary gland recovers. Regular follow-up visits and blood tests monitor your progress and adjust treatment as needed.

Lifestyle changes support medical treatment but cannot cure the disease on their own. Eating a diet low in salt and sugar helps control blood pressure and blood sugar. Weight-bearing exercises and resistance training rebuild bone and muscle strength. Getting enough sleep and managing stress support overall health. These changes work best alongside surgery or medication to address the root cause of excess cortisol.

Untreated Cushing's disease causes serious health problems over time. High cortisol levels increase the risk of diabetes, high blood pressure, and heart disease. Weak bones lead to fractures, especially in the spine and ribs. The immune system becomes less effective, making infections more common and harder to treat. Mental health issues like depression and cognitive problems may worsen. Early diagnosis and treatment prevent these complications and improve quality of life.

ACTH plasma tests measure the hormone that signals cortisol production. High ACTH levels suggest a pituitary tumor is driving excess cortisol. Doctors also test cortisol directly through blood, saliva, or urine samples. Multiple tests at different times of day help confirm the diagnosis. Rite Aid offers ACTH testing as an add-on to monitor hormone levels and support the diagnostic process.

No, the pituitary tumors that cause Cushing's disease are almost always benign, meaning they are not cancerous. These tumors are called adenomas and do not spread to other parts of the body. However, they still cause serious health problems by producing too much ACTH. Surgery or other treatments can remove or shrink these benign tumors and restore normal hormone levels.