Acromegaly

Overview

Acromegaly is a rare hormonal condition that usually develops in adulthood. It happens when the body makes too much growth hormone, most often because of a benign (non-cancerous) growth in the pituitary gland. This extra hormone causes the bones, soft tissues, and organs to grow larger than normal. Because this usually occurs after the bones have finished growing, it becomes noticeable through changes that happen slowly over many years.

No, acromegaly is rare. Around 3 to 4 people per million are diagnosed each year. Diagnosis is often delayed because the changes develop slowly and can be mistaken for normal ageing.

Acromegaly can affect anyone, but it is most commonly diagnosed in adults between the ages of 30 and 60. It affects men and women roughly equally. A similar condition in children is called gigantism, because extra growth hormone before the bones finish growing causes unusually tall stature.

Symptoms

Common symptoms

• Enlarged hands and feet — for example, your ring or shoe size gradually increases.
• Coarse facial features — a more prominent brow, nose, lips, tongue, or jaw.
• Excessive sweating and strong body odour.
• Headaches.
• Fatigue and muscle weakness.
• Sleep apnea (pauses in breathing while sleeping).
• Joint pain and limited movement.
• Thick, oily skin, skin tags, and deepening voice.

Causes

Main causes

• A benign (non-cancerous) tumour of the pituitary gland, called a pituitary adenoma, that produces extra growth hormone.
• In rare cases, tumours located elsewhere in the body, such as in the lungs or pancreas, produce growth hormone-releasing hormone and cause acromegaly.

Risk factors

• Acromegaly is not usually linked to any specific lifestyle factor. Very rarely, it can be associated with inherited genetic syndromes such as multiple endocrine neoplasia type 1 (MEN1) or familial acromegaly. If you have a family history of these conditions, you may be at slightly higher risk.

When to see a doctor

See a doctor urgently if:

• Sudden visual changes, especially double vision or loss of side vision.
• A sudden, very severe headache, especially if you feel unwell.

Book a routine appointment if:

• If you notice that your hands, feet, jaw, or facial features are gradually growing larger over months or years.
• If you develop persistent headaches, excessive sweating, joint pain, or severe fatigue without another explanation.

Diagnosis

Your doctor will ask about your symptoms and do a physical examination. If acromegaly is suspected, they will arrange blood tests to check your hormone levels. The diagnosis is confirmed when growth hormone levels remain high even after drinking a sugar solution, which normally suppresses growth hormone. An MRI scan of the brain will then look for a pituitary tumour.

Tests that may be done

• Blood test for insulin-like growth factor-1 (IGF-1), which is an indirect marker of growth hormone levels.
• Oral glucose tolerance test, which checks whether growth hormone levels are suppressed after drinking a sugary drink.
• MRI of the pituitary gland, a detailed scan to look for a tumour.

What to expect at your appointment

You will likely be referred to an endocrinologist, a doctor who specialises in hormonal conditions. The diagnosis may take a few weeks because tests are done gradually. You do not need to change your routine before these tests, but your doctor will guide you through each step.

Treatment

Treatment for acromegaly depends on the size of the tumour, your symptoms, and your overall health. The main goals are to reduce growth hormone to normal levels, control symptoms, and manage any effects on other parts of the body. Usually, a combination of approaches is used, and you will be monitored by a specialist team.

Self-care at home

• Keep a record of symptoms, such as changes in ring size, shoe size, or headache frequency, to share with your doctor.
• Manage other health issues like high blood pressure, diabetes, or sleep apnea, because acromegaly can make them worse.
• Attend all scheduled appointments and blood tests, even if you feel well.

Medical treatments

Medical treatments may include medications that lower growth hormone levels, either by blocking the release of growth hormone or by blocking its effects in the body. These medications are usually given as regular injections or occasionally as tablets. They are used when surgery is not possible, if surgery does not cure the condition, or while waiting for surgery. A specialist will decide on the most suitable type of medication for you. Radiotherapy, using high-energy rays to shrink the tumour, may also be used if medications do not work or as an additional treatment.

When is surgery considered?

Surgery is the first-line treatment in most cases, particularly when the tumour is small and fully removable. The surgeon goes through the nose and removes the pituitary tumour. This procedure is called transsphenoidal surgery. It is not suitable for everyone, and you will discuss the risks and benefits with your specialist team.

Living with this condition

Acromegaly is a long-term condition that requires regular follow-up, even after treatment. Many people need long-term monitoring of hormone levels and imaging scans. It is important to keep up with these appointments so that any recurrence or complications are found early.

Lifestyle tips

• Try to keep a healthy weight, as acromegaly often increases the risk of diabetes and high blood pressure.
• Be physically active most days, but adjust activities if joint pain is a problem.
• If you have sleep apnea, use your chosen treatment consistently to improve sleep quality.
• Stop smoking — it lowers your risk of heart and lung complications.

Diet and exercise

A balanced diet low in refined sugars and salt can help manage blood pressure and diabetes. Regular, moderate exercise helps maintain joint mobility, heart health, and mood. Consider low-impact activities like swimming or cycling if you have joint pain.

Mental health and emotional wellbeing

Living with acromegaly can be stressful because of changes in your appearance and long-term health worries. It is normal to feel anxious or low at times. Talking to a counsellor or joining a support group can help. If you have thoughts of harming yourself, contact your local mental health crisis team or emergency number immediately.

Prevention

Acromegaly cannot be prevented, because it is caused by an abnormal growth of cells in the pituitary gland that produce growth hormone. However, the risk of complications can be significantly reduced through early detection and careful treatment.

Screening programmes

There is no routine screening for acromegaly in the general population. If you have a known family syndrome that raises your risk, your specialist may recommend periodic blood tests and scans.

Complications

If left untreated

• High blood pressure and heart disease.
• Type 2 diabetes.
• Sleep apnea.
• Colon polyps and an increased risk of colorectal cancer.
• Arthritis and carpal tunnel syndrome.
• Vision problems due to pressure on the optic nerves.
• Thickening of the heart muscle (cardiomyopathy).

Long-term outlook

With current treatments, most people with acromegaly can expect a good quality of life. Prompt treatment can stop the condition from progressing and often partially reverses symptoms such as headaches, sweating, and facial swelling. Long-term monitoring helps prevent complications. Many people live normal, full lives with acromegaly.

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