Cushings syndrome awareness

Overview

Cushing’s 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 it normally helps control blood pressure, blood sugar, and how your body uses food. But too much can cause problems.

No, Cushing’s syndrome is considered rare. Most cases are caused by long-term use of steroid medications, which is more common than tumors that produce too much cortisol.

Cushing’s syndrome can affect people of any age, but it is most often diagnosed in adults between 20 and 50 years old. Women are about three times more likely to develop it than men. It can also affect children, especially if they take high-dose steroids for conditions like asthma or arthritis.

Symptoms

Common symptoms

• Weight gain, especially around the face (moon face), upper back (buffalo hump), and abdomen
• Thin, fragile skin that bruises easily
• Purple or pink stretch marks on the belly, thighs, or breasts
• Slow healing of cuts, scrapes, or infections
• Severe tiredness and muscle weakness
• High blood pressure
• High blood sugar or diabetes
• Mood changes like irritability, depression, or anxiety
• Brittle bones (osteoporosis) and increased risk of fractures
• Irregular periods in women and lowered libido in men

Symptoms in children

• Slowed growth (shorter height than expected)
• Weight gain, especially around the face and belly
• Delayed puberty

Symptoms in older adults

• More frequent falls and fractures due to weak bones
• Increased confusion or memory problems
• Worsening of high blood pressure and diabetes

Causes

Main causes

• Taking high-dose steroid medications (like prednisone, dexamethasone, or hydrocortisone) for a long time — this is called exogenous (from outside the body) Cushing’s syndrome.
• A non-cancerous tumor on the pituitary gland (called Cushing’s disease) that signals the adrenal glands to make too much cortisol.
• A tumor on one or both adrenal glands (adrenal adenoma or carcinoma) that produces excess cortisol.
• Rarely, tumors elsewhere in the body (like the lungs) that produce a hormone called ACTH, which tells the adrenal glands to make cortisol (ectopic Cushing’s syndrome).

Risk factors

• Long-term use of corticosteroid medications for conditions like asthma, rheumatoid arthritis, lupus, or after organ transplant
• Having a pituitary or adrenal tumor (most are benign)
• Being female and between 20 and 50 years old
• Certain genetic conditions (very rare)

When to see a doctor

See a doctor urgently if:

• If you have symptoms like sudden severe pain, chest discomfort, or confusion — call your local emergency number.
• If you are on steroids and develop a high fever or feel very ill — seek urgent medical care.

Book a routine appointment if:

• If you have gradually developed symptoms like weight gain, easy bruising, or muscle weakness that worry you — make an appointment with your GP.
• If you take steroid medications and notice changes in your body shape or mood.

Diagnosis

Diagnosis usually starts with a review of your symptoms and medications, followed by blood, urine, or saliva tests to measure cortisol levels. If tests show high cortisol, your doctor will look for the cause, often with imaging scans.

Tests that may be done

• 24-hour urine free cortisol test — you collect all your urine over one day to measure cortisol levels.
• Late-night salivary cortisol test — a small sample of saliva taken at night, when cortisol should normally be low.
• Dexamethasone suppression test — you take a low dose of a steroid pill (dexamethasone) and then have a blood test to see if your body correctly lowers cortisol.
• Blood tests for ACTH — to help find if the problem is in the pituitary, adrenal glands, or elsewhere.
• Imaging scans, such as an MRI of the pituitary or a CT scan of the adrenal glands.

What to expect at your appointment

You may need to visit a specialist called an endocrinologist. The tests are not painful, but some require careful timing (like collecting urine or not eating before a test). Results can take a few days to a few weeks. Sometimes repeat tests are needed to confirm the diagnosis.

Treatment

Treatment for Cushing’s syndrome depends on the cause. The goal is to bring cortisol levels back to normal and improve symptoms. This may involve adjusting medications, having surgery, or using other treatments to control cortisol production.

Self-care at home

• Take all medications exactly as prescribed — do not stop steroids suddenly.
• Monitor your blood pressure and blood sugar if advised by your doctor.
• Eat a balanced diet with plenty of fruits, vegetables, and lean protein to support healing.
• Get gentle, regular exercise as approved by your healthcare team.
• Practice stress management techniques like deep breathing, meditation, or talking to a counselor.

Medical treatments

If Cushing’s syndrome is caused by steroid medications, your doctor may slowly reduce your dose or switch to a different type of steroid. If a tumor is the cause, surgery to remove the tumor is often the first choice. When surgery is not possible or effective, your doctor may consider radiation therapy (for pituitary tumors) or medications that block the production or action of cortisol. These treatments are tailored to each person and require close monitoring by a specialist.

When is surgery considered?

Surgery is often the main treatment for tumors that cause Cushing’s syndrome. For example, a pituitary tumor may be removed through the nose (transsphenoidal surgery). An adrenal tumor may be removed with keyhole or open surgery. Your medical team will discuss the risks and benefits with you.

Living with this condition

Living with Cushing’s syndrome can be challenging, but many people improve with treatment. It is important to follow your care plan, keep all appointments, and tell your doctor about any new or worsening symptoms. Recovery can be slow, so be patient with yourself.

Lifestyle tips

• Get plenty of rest and set a regular sleep schedule.
• Avoid heavy lifting or activities that could cause falls if you have weak bones.
• Wear sunscreen and protective clothing to protect thin skin from sun damage.
• Stay up to date with vaccinations (like the flu shot) to reduce infection risk.

Diet and exercise

A healthy diet can help manage weight gain and blood sugar. Focus on whole grains, lean proteins, fruits, vegetables, and low-fat dairy. Limit sugary snacks and drinks. Gentle exercise, like walking, swimming, or yoga, can improve strength and mood. Always check with your doctor before starting a new exercise routine, especially if you have bone weakness.

Mental health and emotional wellbeing

Cushing’s syndrome can take a toll on your mental health. Many people experience depression, anxiety, irritability, or brain fog. It is not your fault — the high cortisol directly affects your mood and thinking. Speak to your doctor about counseling, support groups, or treatments that can help. If you ever feel like hurting yourself, call your local crisis helpline or emergency number immediately.

Prevention

Cushing’s syndrome caused by a tumor cannot be prevented. However, the most common form caused by steroid medications can be reduced by using the lowest effective dose for the shortest time. If you need long-term steroids, regular check-ups can help catch problems early.

Complications

If left untreated

• Type 2 diabetes or worsening of existing diabetes
• High blood pressure, which can damage the heart and kidneys
• Osteoporosis (weak bones) leading to fractures, especially of the spine and hips
• Serious infections due to a weakened immune system
• Blood clots in the legs or lungs
• Heart disease or stroke
• Severe depression or cognitive decline

Long-term outlook

With the right treatment, the outlook for Cushing’s syndrome is good. Most people see improvement in symptoms within months, although full recovery can take a year or more. Some long-term effects, like bone loss, may need ongoing care. Early diagnosis and treatment greatly reduce the risk of complications and improve quality of life.

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