Managing Cushing's Syndrome: Your Complete Patient Guide

Overview

Cushing's Syndrome is a rare endocrine disorder that occurs when your body is exposed to too much of the stress hormone cortisol for an extended period. Cortisol helps regulate blood pressure, blood sugar, and immune function, but excess levels cause a range of uncomfortable and potentially serious health symptoms. The condition affects about 10 to 15 people per million each year, and is more common in women than men, typically diagnosed between the ages of 20 and 50.

Signs & Symptoms

Symptoms of Cushing's Syndrome develop gradually over months or years, so many people do not notice them right away, or mistake them for signs of aging or weight gain. Common symptoms include:

• Rapid weight gain, especially in the trunk, face (often called 'moon face'), and upper back (sometimes called 'buffalo hump')
• Thin, fragile skin that bruises easily, and purple or pink stretch marks (striae) on the abdomen, thighs, or arms
• Muscle weakness, especially in the arms and legs
• High blood pressure (hypertension) and high blood sugar (hyperglycemia)
• Mood changes, including anxiety, depression, or irritability
• Irregular or absent menstrual periods in women, and reduced libido in all genders
• Fatigue, difficulty sleeping, and increased thirst and urination

Causes & Risk Factors

Cushing's Syndrome has two main categories of causes, based on where excess cortisol comes from. ACTH-dependent causes include excess adrenocorticotropic hormone (ACTH, a hormone that triggers cortisol production) from a benign pituitary tumor (called Cushing's disease, the most common cause) or from a tumor elsewhere in the body (ectopic ACTH syndrome). ACTH-independent causes include a benign or malignant tumor in the adrenal gland itself, which produces too much cortisol, or long-term use of high-dose oral or injected corticosteroid medications (such as prednisone) used to treat conditions like asthma, rheumatoid arthritis, or lupus. Risk factors for Cushing's include long-term use of high-dose corticosteroids, a personal or family history of pituitary or adrenal tumors, and rare genetic syndromes like multiple endocrine neoplasia type 1 (MEN1).

Diagnosis

Diagnosing Cushing's can be challenging because its symptoms overlap with many other common conditions, like metabolic syndrome or depression. Your doctor will first confirm high cortisol levels with one or more of the following tests, then use imaging to find the underlying cause:

Treatment & Management

Treatment for Cushing's Syndrome depends entirely on the underlying cause, and is most effective when started early to prevent long-term complications like diabetes, heart disease, and osteoporosis. If Cushing's is caused by long-term steroid use, your doctor will slowly taper your dose to allow your adrenal glands to recover. For tumor-related Cushing's, first-line treatment is surgery to remove the tumor, often followed by radiation or medication if needed. Medications that block cortisol production may also be used when surgery is not an option.

Living With It

Cushing's Syndrome requires long-term follow-up care, even after successful treatment, to monitor for symptom recurrence and manage complications. Working with a care team that includes an endocrinologist, primary care provider, dietitian, and mental health professional can help you manage your condition and improve your quality of life.

• Attend all scheduled follow-up appointments to monitor cortisol levels and check for complications like high blood pressure, diabetes, and bone loss
• Eat a balanced diet low in sodium and added sugars, and rich in calcium and vitamin D to support bone health
• Engage in gentle, regular physical activity as tolerated, such as walking, swimming, or yoga, to build muscle strength and reduce fatigue
• Practice stress management techniques like deep breathing, meditation, or journaling to support mental health
• Connect with a Cushing's support group to connect with others who understand your experience and reduce feelings of isolation