Cushing syndrome awareness

Overview

Cushing syndrome is a condition where your body has too much of a hormone called cortisol for a long time. Cortisol is sometimes called the 'stress hormone' and helps control blood pressure, blood sugar, and how your body handles stress. When there's too much, it can cause problems.

No, Cushing syndrome is rare. It affects about 10 to 15 people in every million each year.

It can affect anyone, but it is more common in women, especially between ages 20 and 50. It can also occur in children and older adults.

Symptoms

Common symptoms

• Weight gain in the face (round, red 'moon face'), neck, and belly, with thinner arms and legs.
• A fatty hump between the shoulders (buffalo hump).
• Purple or red stretch marks on the skin, especially on the belly, thighs, and breasts.
• Thin skin that bruises easily.
• Slow healing of cuts and scrapes.
• High blood pressure.
• High blood sugar or diabetes.
• Weak bones (osteoporosis) and fractures.
• Mood changes like feeling anxious, depressed, or irritable.
• In women, irregular periods and extra hair on the face and body.

Symptoms in children

• Slowed growth in height while gaining weight.
• Delayed puberty.

Symptoms in older adults

• Increased risk of falls and broken bones due to weaker bones.
• High blood pressure that is harder to control.
• More noticeable muscle weakness and fatigue.

Causes

Main causes

• Taking glucocorticoid medicines (often called steroids) in high doses or for a long time – this is the most common cause.
• A tumor in the pituitary gland (a small gland at the base of the brain) that makes too much of a hormone called ACTH, which triggers cortisol release.
• A tumor in the adrenal glands (small glands on top of the kidneys) that makes too much cortisol.
• Rarely, a tumor elsewhere in the body (like the lungs) that produces ACTH.

Risk factors

• Long-term use of steroid medicines for conditions like asthma, arthritis, or autoimmune diseases.
• Having a family history of tumors in the endocrine glands (like multiple endocrine neoplasia type 1).
• Being female and between 20 and 50 years old.

When to see a doctor

See a doctor urgently if:

• If you have any emergency symptoms listed above – call your local emergency number immediately.

Book a routine appointment if:

• If you notice gradual weight gain in your face and belly, new stretch marks, or easy bruising that you cannot explain.
• If you have high blood pressure or diabetes that is getting harder to control.
• If you take steroid medicines and develop new symptoms like weakness or mood changes.

Diagnosis

Your doctor will ask about your symptoms, medicines, and health history. They will do a physical exam and order tests to measure cortisol levels in your body.

Tests that may be done

• 24-hour urine test: You collect all your urine for a day to measure cortisol.
• Late-night saliva test: A small sample of saliva is taken at bedtime to check cortisol (should be low by then).
• Dexamethasone suppression test: You take a low-dose steroid pill and then have blood drawn to see if cortisol levels drop normally.
• Blood tests to measure ACTH and other hormones.
• Imaging tests like CT or MRI scans to look for tumors in the pituitary or adrenal glands.

What to expect at your appointment

Diagnosis may take a few weeks because the results of some tests need to be confirmed. Your doctor may refer you to a specialist called an endocrinologist – a doctor who treats hormone problems. You may need to have some tests repeated to be sure.

Treatment

Treatment depends on the cause of the Cushing syndrome. The goal is to bring cortisol levels back to normal, relieve symptoms, and treat any underlying cause.

Self-care at home

• If you take steroid medicines, do not stop them suddenly – work with your doctor to slowly reduce the dose if safe.
• Eat a balanced diet to help control weight and blood sugar.
• Get light, low-impact exercise like walking to help muscle strength and mood.
• Monitor your blood pressure and blood sugar at home as recommended.

Medical treatments

Your doctor may prescribe medicines that block the effect of cortisol or lower its production. Other treatments include radiation therapy to shrink a pituitary tumor. The type of medicine or treatment will be chosen based on your specific situation and should be discussed with your specialist.

When is surgery considered?

If a tumor (in the pituitary, adrenal, or elsewhere) is causing Cushing syndrome, surgery to remove it is often the first treatment. For example, transsphenoidal surgery for a pituitary tumor. Surgery usually leads to a complete cure if the whole tumor is removed.

Living with this condition

Living with Cushing syndrome can be challenging, but most people feel better after treatment. You may need to take medicines, check your blood pressure and blood sugar, and see your doctor regularly. It is important to follow your treatment plan and keep all appointments.

Lifestyle tips

• Get plenty of rest – your body needs time to heal.
• Stay active with gentle exercises like walking, swimming, or yoga, but avoid heavy lifting until your muscles get stronger.
• Manage stress with relaxation techniques like deep breathing or meditation.
• Avoid smoking and limit alcohol – both can affect cortisol and bone health.

Diet and exercise

A healthy diet helps control weight and blood sugar. Eat plenty of fruits, vegetables, lean protein, and whole grains. Limited amounts of sugary drinks and refined carbohydrates. For exercise, start slowly and increase gradually. Talk to your doctor before starting a new exercise program, especially if you have weak bones.

Mental health and emotional wellbeing

Cushing syndrome can cause depression, anxiety, irritability, and problems with memory or concentration. These feelings are a part of the condition, not a weakness. Talk to your doctor about seeing a counsellor or therapist. Antidepressant medicines may also help as part of your overall treatment.

Prevention

In most cases, Cushing syndrome cannot be prevented because it is caused by tumors or necessary steroid medications. However, if you take steroids, your doctor can help you use the lowest effective dose for the shortest time to reduce the risk. Never stop steroid medicines on your own.

Screening programmes

Routine screening for Cushing syndrome in the general population is not recommended. If you have symptoms or risk factors, talk to your doctor.

Complications

If left untreated

• Type 2 diabetes or worsening blood sugar control.
• High blood pressure that increases the risk of heart attack or stroke.
• Weak bones (osteoporosis) leading to fractures, especially in the spine and ribs.
• Frequent infections because the immune system is weakened.
• Severe depression or anxiety that affects daily life.
• Muscle wasting and weakness.

Long-term outlook

With early diagnosis and proper treatment, most people with Cushing syndrome recover well. Symptoms often go away over months to years, and many can return to a normal life. Even if the cause is a tumor, surgery or other treatments have excellent success rates. There is real hope for improvement.

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