Acromegaly

Too much growth hormone in an adult. Diagnosed on average a decade late, because the changes are slow enough for nobody to notice.

What it is

Excess growth hormone in an adult, almost always from a benign tumour of the pituitary gland.

In adults the long bones have fused, so instead of height it produces enlargement of the hands, feet, jaw and facial features, and growth of soft tissue throughout the body.

**It is diagnosed late, typically seven to ten years after it starts**, and the reason is instructive: the changes are gradual, and the people who see the person daily do not notice. It is often spotted by somebody who has not seen them for years, by a dentist noticing the bite changing, or by an optician noticing visual field loss.

Comparing old photographs is genuinely one of the more useful diagnostic tools available.

Untreated it causes serious harm: high blood pressure, type 2 diabetes, heart muscle disease, sleep apnoea, carpal tunnel syndrome, severe osteoarthritis, bowel polyps and a raised risk of bowel cancer, and it shortens life.

Treatment is usually pituitary surgery, sometimes with medication or radiotherapy, and outcomes are good when it is caught before too much cardiovascular damage.

The pituitary tumour can also press on the optic nerves, causing loss of the outer visual fields, which people often do not notice until they walk into things.

Signs you might notice

Rings that no longer fit, and shoes that need to be a larger size.

Enlarging hands and feet.

Coarsening facial features, a more prominent jaw and brow, and teeth becoming more spaced.

Deepening voice, snoring and sleep apnoea.

Headaches, and loss of the outer edges of vision.

Tingling in the hands, from carpal tunnel syndrome.

Joint pain, excessive sweating, oily skin, skin tags.

Tiredness, low libido, irregular periods.

Compare photographs five and ten years apart. It is often the clearest evidence available.

Urgent: sudden severe headache with visual loss and vomiting, which may be bleeding into the pituitary and is an emergency.

How it can affect day-to-day life

The delay to diagnosis leaves people with damage that treatment cannot reverse: enlarged features, established arthritis, and cardiovascular disease. Anger about that is common and legitimate.

Appearance changes are permanent and affect identity, and psychological support is rarely offered.

Even after successful treatment, joint pain, fatigue and sleep apnoea often persist and need managing in their own right.

Pituitary surgery can affect other pituitary hormones, so lifelong hormone replacement is sometimes needed, including steroid replacement, which brings the sick day rules and the emergency card. See Addison's disease.

Bowel cancer surveillance with colonoscopy is recommended, and is sometimes not arranged.

Lifelong follow-up with an endocrinologist is standard, because recurrence happens years later.

Supporting someone well

Compare old photographs. It is what makes an invisible gradual change visible.

Ask for IGF-1 blood testing; it is the screening test and asking for it by name usually gets it.

Ask for visual field testing if there are headaches or any suspicion of visual change.

Ask for referral to a specialist pituitary centre rather than general endocrinology.

Ask about screening for sleep apnoea, diabetes, blood pressure and heart function at diagnosis.

Ask about bowel cancer surveillance.

If pituitary hormones are affected after surgery, get a steroid emergency card and learn the sick day rules.

Ask for psychological support for the appearance changes.

Keep lifelong follow-up; recurrence is possible years later.

Where to get help

A GP practice for IGF-1 testing and referral; a specialist pituitary centre for treatment.

999 for sudden severe headache with visual loss and vomiting.

Pituitary Foundation run a helpline and are the specialist charity.