Cushings Syndrome

Overview

Cushing's syndrome (also called hypercortisolism) is when your body has too much of a hormone called cortisol for a long time. Cortisol is a hormone — a chemical messenger — that helps control blood pressure, blood sugar, the immune system, and how your body uses food. Too much cortisol can affect almost every part of the body. Only a doctor can find out whether you have Cushing's syndrome.

Cushing's syndrome is rare. Many people have some of its symptoms, but most do not have Cushing's syndrome.

It can affect people of any age. It is most often found in adults aged about 20 to 50, and it is more common in women than in men. It can also affect children and older adults.

Symptoms

Common symptoms

• Weight gain, especially around the belly, upper back, and face
• A round face, sometimes called a moon face
• Thin arms and legs compared with the rest of the body
• Easy bruising and thin skin
• Purple or pink stretch marks, often on the belly, thighs, or breasts
• Muscle weakness, especially in the arms and legs
• Feeling very tired or weak
• High blood pressure
• High blood sugar or diabetes
• Mood changes, anxiety, or depression
• Acne or extra facial hair
• Irregular periods or lower sex drive
• Poor healing of cuts and more infections

Symptoms in children

• Poor growth or slower growth than expected
• Weight gain, especially in the face and middle of the body
• A round face
• Delayed puberty
• High blood pressure or high blood sugar
• Feeling very tired or weak

Symptoms in older adults

• Muscle weakness and trouble with daily tasks
• Thin skin and easy bruising
• High blood pressure or high blood sugar
• Broken bones, especially in the spine or ribs
• Low mood, confusion, or memory problems
• Feeling very tired

Causes

Main causes

• Taking steroid medicines for a long time is the most common cause. These medicines are used for many conditions, such as asthma, arthritis, and inflammatory diseases.
• A tumour in the pituitary gland, a small gland at the base of the brain, can make too much of a hormone called ACTH. ACTH tells the adrenal glands to make cortisol.
• A tumour in an adrenal gland, one of two small glands above the kidneys, can make too much cortisol.
• A tumour elsewhere in the body can make ACTH and cause the adrenal glands to make too much cortisol.
• Rarely, inherited problems with the adrenal glands can cause Cushing's syndrome.

Risk factors

• Long-term use of steroid medicines, especially by mouth or by injection
• Having certain tumours in the pituitary gland, adrenal glands, or elsewhere in the body
• Some rare inherited conditions that affect the adrenal glands
• Being a woman aged about 20 to 50 is linked with a higher chance, but Cushing's syndrome can affect anyone

When to see a doctor

See a doctor urgently if:

• You have very high blood pressure, chest pain, or shortness of breath.
• You have a sudden severe headache with confusion, fainting, or vision changes.
• You have signs of infection with fever and feel very unwell.
• You have swelling, pain, or redness in one leg.
• You have thoughts of harming yourself.
• You have severe weakness, vomiting, or confusion after pituitary or adrenal surgery.

Book a routine appointment if:

• You have several symptoms together, such as weight gain around the belly, a round face, thin skin, easy bruising, and muscle weakness.
• You notice purple stretch marks, especially with high blood pressure or high blood sugar.
• Your child is growing slowly or has weight gain, a round face, and high blood pressure.
• You take long-term steroid medicines and have new symptoms.
• You have symptoms that worry you, even if they seem mild.

Diagnosis

A doctor will ask about your symptoms, your health history, and any medicines you take, including steroid medicines. They will do a physical exam and may order tests to measure cortisol and related hormones. Because Cushing's syndrome is rare and its symptoms can overlap with other conditions, diagnosis can take time. You may be referred to an endocrinologist — a doctor who treats hormone problems.

Tests that may be done

• A review of your symptoms and all medicines, especially steroid medicines
• A physical exam, including blood pressure and body changes
• Blood and urine tests to measure cortisol and related hormones
• A late-night saliva test to check cortisol levels
• A steroid suppression test, where you take a steroid tablet and then have blood or urine tests
• Imaging scans, such as CT or MRI, of the pituitary or adrenal glands if tests suggest Cushing's syndrome
• Other tests to find where extra cortisol or ACTH is coming from

What to expect at your appointment

You may need several visits and repeat tests. Results can take days or weeks. Finding the cause can take time, and your care team will explain each step. Try not to worry if tests are repeated — this is normal when checking for a rare hormone problem.

Treatment

Treatment depends on the cause. The goal is to bring cortisol levels back to normal and manage symptoms such as high blood pressure, high blood sugar, and bone thinning. Your care team will make a plan for you. Never stop or change steroid medicines on your own, because that can be dangerous.

Self-care at home

• Take all medicines exactly as your care team tells you.
• Do not stop steroid medicines suddenly — ask your doctor first.
• Keep a simple diary of symptoms, blood pressure, and blood sugar if you check them at home.
• Go to all appointments and tests, even if you feel well.
• Get rest and gentle activity, and ask for help when you feel tired.
• Ask your care team about counselling or support groups.

Medical treatments

If a steroid medicine is causing Cushing's syndrome, your doctor may slowly reduce it or change it to another treatment. This must be done carefully. If a tumour is the cause, surgery may be offered. Other treatments can include radiation therapy and medicines that lower cortisol or block its effects. You may also need treatment for high blood pressure, high blood sugar, or bone thinning. Your care team will explain the benefits and risks of each option.

When is surgery considered?

Surgery is often the main treatment when a pituitary or adrenal tumour is found. The type of surgery and timing depend on the tumour, your general health, and test results. Sometimes surgery is not possible, and other treatments are used instead. After surgery, you may need hormone replacement and close follow-up.

Living with this condition

Living with Cushing's syndrome can be hard, both physically and emotionally. Symptoms may change your body, energy, mood, and daily routine. Treatment can improve many symptoms, but recovery often takes time. Take things one step at a time and lean on your care team for practical advice.

Lifestyle tips

• Keep regular sleep and rest times.
• Ask your care team before starting new exercise or diet plans.
• Avoid infections where you can, and wash your hands often.
• If you smoke, ask for help to stop.
• Keep alcohol within low-risk limits or avoid it if your doctor advises.
• Plan your day with short rests if fatigue is a problem.

Diet and exercise

A balanced diet and gentle activity can help protect your muscles and bones and support your mood. Your care team may suggest a plan that fits your blood pressure, blood sugar, and bone health. Do not start a strict diet or hard exercise program without checking with your doctor first.

Mental health and emotional wellbeing

Cushing's syndrome can cause anxiety, depression, irritability, and mood swings. These are caused by the hormone imbalance, not by weakness or a lack of effort. Tell your care team how you feel — support is available. If you feel overwhelmed or have thoughts of harming yourself, contact your local crisis support service or emergency services right away.

Prevention

Cushing's syndrome cannot always be prevented. If it is caused by steroid medicines, doctors can reduce the risk by using the lowest effective amount for the shortest needed time and checking you regularly. Never stop steroid medicines on your own.

Vaccines

There is no vaccine for Cushing's syndrome.

Screening programmes

There is no routine screening for Cushing's syndrome. If you take long-term steroid medicines or have a known pituitary or adrenal problem, your doctor should monitor you.

Complications

If left untreated

• High blood pressure and heart problems
• High blood sugar and diabetes
• Weak bones and broken bones
• More infections
• Blood clots
• Muscle weakness and loss of strength
• Depression, anxiety, and memory problems
• Irregular periods and fertility problems

Long-term outlook

Most people improve with treatment, but recovery can take months. Some effects on bones, mood, and energy may need extra care. With follow-up and support, many people are able to return to a more normal life. Your care team will help you through each step.

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