Cushing's syndrome

Also called Hypercortisolism

Too much steroid hormone. Far more often caused by the steroids we prescribe than by anything the body does on its own.

What it is

The result of prolonged exposure to too much cortisol.

By a wide margin the commonest cause is treatment: long-term steroid tablets, and sometimes high-dose inhaled, injected or topical steroids, given for asthma, COPD, rheumatoid arthritis, inflammatory bowel disease, polymyalgia rheumatica or giant cell arteritis. That is called iatrogenic Cushing's, and anybody on long-term steroids should be watched for it.

Less commonly the body makes too much itself, usually from a small benign pituitary tumour, sometimes from the adrenal gland or a tumour elsewhere. That form is rare, is often diagnosed years late because the features develop slowly, and is treatable, usually with surgery.

Untreated it causes type 2 diabetes, high blood pressure, osteoporosis with fractures, muscle wasting, infection and serious mood disturbance, and it shortens life.

The critical safety point for anybody on long-term steroids is the opposite problem: the body stops making its own cortisol, so stopping suddenly, or not increasing the dose during illness, can cause a life-threatening adrenal crisis. See Addison's disease.

Signs you might notice

Weight gain concentrated on the trunk, face and the back of the neck, with thin arms and legs.

A rounded, flushed face.

Purple or red stretch marks, wider than ordinary ones, on the abdomen, thighs and arms.

Skin that bruises very easily and heals slowly.

Muscle weakness, particularly getting up from a chair or climbing stairs.

Mood change: irritability, anxiety, depression, sometimes psychosis.

New or worsening diabetes, high blood pressure, and fractures from minor injury.

In women, excess facial and body hair, and irregular periods.

Urgent, for anyone on steroids who becomes unwell, vomits or cannot take tablets: dizziness, severe weakness, vomiting, confusion or collapse can be adrenal crisis. This needs 999 and injected hydrocortisone.

How it can affect day-to-day life

Appearance changes are distressing and are commonly minimised by clinicians focused on the condition being treated. They are real, they affect identity and relationships, and most reverse slowly once the cause is dealt with.

Recovery after treatment is slow, and people often feel worse for months as cortisol levels fall. Being warned about that in advance matters.

For steroid-induced Cushing's, the answer is rarely simply stopping: the underlying condition still needs treating. The right questions are whether the dose can be reduced, whether a steroid-sparing drug is possible, and whether bone, blood sugar and stomach protection are in place.

Everybody on long-term steroids should carry a steroid emergency card and know the sick day rules. Both are frequently missing.

Supporting someone well

For anybody on long-term steroids: ask about the lowest effective dose, a steroid-sparing alternative, bone protection, blood pressure and glucose monitoring.

Get a steroid emergency card and an NHS steroid alert, and learn the sick day rules: double the dose in fever or illness, and seek help urgently for vomiting.

Never stop long-term steroids suddenly.

For suspected spontaneous Cushing's, ask for endocrinology referral and expect several tests; a single cortisol level does not diagnose it.

Ask for photographs over time, which often show the change more clearly than memory.

Take the mood changes seriously and get them treated.

After treatment, expect a slow recovery and ask for support during it.

Where to get help

A GP practice, and endocrinology for suspected spontaneous Cushing's.

999 for suspected adrenal crisis in anyone on steroids.

Pituitary Foundation run a helpline and are the specialist charity.