17743 Acromegaly

Overview

Acromegaly is a rare condition in which the body produces too much growth hormone. It is usually caused by a non-cancerous tumour in the pituitary gland, a small gland at the base of the brain. Too much growth hormone causes the bones and tissues of the body to grow larger than normal over time.

No. Acromegaly is rare. It is estimated to affect roughly between 1 and 2 in every 100,000 people at any one time. Because it develops gradually, it may take years for someone to be diagnosed.

Acromegaly can affect anyone, but it is usually diagnosed in adults between the ages of 30 and 50. Men and women are affected in roughly equal numbers. In children and teenagers, too much growth hormone before the bones stop growing can cause a related condition called gigantism, where the child grows unusually tall.

Symptoms

Common symptoms

• Enlarged hands and feet, such as needing bigger rings, gloves, or shoes
• Facial changes, such as a larger nose, lips, tongue, or jaw
• Coarser, thicker facial features
• Joint pain and aches
• Headaches
• Heavy sweating, especially at night
• Feeling tired and lacking energy
• Widened gaps between teeth
• Deepening of the voice
• Skin changes, such as thick, oily, or skin tags
• Sleep problems, including snoring or pauses in breathing during sleep

Symptoms in children

• In children and teenagers, excess growth hormone causes unusually rapid growth in height, a condition sometimes called gigantism.
• The child may grow very tall very quickly compared with friends of the same age.
• Bones and features may also grow in a way that looks disproportionate or unusual.

Symptoms in older adults

• In older adults, the changes may be very gradual and can be mistaken for normal ageing.
• Joint pain, tiredness, high blood pressure, and diabetes may be the most noticeable problems.
• Because symptoms develop slowly, acromegaly can be overlooked in older adults unless other clues are present.

Causes

Main causes

• In almost all cases, acromegaly is caused by a non-cancerous tumour (adenoma) in the pituitary gland. This tumour produces excess growth hormone.
• In rare cases, tumours elsewhere in the body, such as in the pancreas or lungs, can produce growth hormone-releasing hormone and lead to acromegaly.
• A very small number of cases are linked to inherited genetic syndromes that increase the risk of pituitary tumours.

Risk factors

• Most people diagnosed with acromegaly have no known risk factors.
• Rare inherited conditions, such as certain familial syndromes, can increase the risk but account for only a small minority of cases.

When to see a doctor

See a doctor urgently if:

• If you develop sudden severe headache, vision loss, double vision, or confusion, call your local emergency number without delay.
• If you experience new weakness, numbness, or difficulty speaking, seek urgent medical help.

Book a routine appointment if:

• Make an appointment with your GP if you notice gradual changes in the size of your hands or feet, changes in your facial features, persistent headaches, joint pain, unusual sweating, or persistent tiredness.
• If you are snoring heavily or waking up gasping for air, mention this to your doctor.
• If you have concerns about a possible health condition, ask your GP for advice.

Diagnosis

A doctor will start by asking about your symptoms and family history, and by examining you. They may look for changes in your face, hands, and feet. If acromegaly is suspected, you will usually be referred to a specialist called an endocrinologist, who is a doctor that specialises in hormone conditions.

Tests that may be done

• Blood tests to measure levels of growth hormone and a hormone called IGF-1
• An oral glucose tolerance test, which checks how well the body controls growth hormone after you drink a sugary solution
• An MRI scan of the pituitary gland to look for a tumour
• A visual field test to check for any effects on your eyesight

What to expect at your appointment

The process of diagnosing acromegaly can take a little time because the condition develops slowly and symptoms overlap with other common health issues. Blood tests and imaging scans are usually arranged as an outpatient. If the diagnosis is confirmed, a specialist team will explain your treatment options and work with you to create a plan.

Treatment

Treatment for acromegaly usually aims to lower growth hormone levels to normal, shrink or control any pituitary tumour, and relieve symptoms. The right treatment depends on the size and location of the tumour, your overall health, and your preferences. A team approach is common, involving endocrinologists, neurosurgeons, and sometimes radiation specialists.

Self-care at home

• Attend all follow-up appointments so your hormone levels and symptoms can be monitored.
• If you wear rings or shoes that have become tight, consider having them adjusted to avoid discomfort.
• Look after your joints with gentle movement and daily activities that are comfortable for you.
• Prioritise good sleep and rest, especially if you feel tired.
• Ask for practical help from family or friends when tasks become difficult.

Medical treatments

Medications can help lower growth hormone production or reduce the effects of growth hormone in the body. These are not the same as a cure, but they can help control the condition. They are often used when surgery is not fully successful, or as preparation before or during other treatments. Medication choices are made by your specialist based on your individual situation.

When is surgery considered?

For many people with acromegaly, surgery to remove the pituitary tumour is the first treatment choice. This is usually done through the nose using a special technique, so no visible scar is made. The aim is to remove the whole tumour and bring hormone levels back to normal. The success of surgery depends on the size and position of the tumour.

Living with this condition

Living with acromegaly often means regular check-ups, ongoing monitoring of hormone levels, and managing symptoms. Some daily tasks may need adjusting — for example, wider shoes, memory aids for tiredness, or using a fan to manage sweating. Over time, many people find their symptoms improve with treatment.

Lifestyle tips

• Keep active in a way that feels comfortable for your joints, such as walking, swimming, or gentle stretching.
• Take time to rest when you need it and do not try to push through severe fatigue.
• Stay connected with supportive friends, family, or support groups.
• Drink plenty of fluids and avoid excessive alcohol, especially if you have blood pressure or heart issues.

Diet and exercise

A balanced diet rich in vegetables, fruit, whole grains, and lean protein can help support overall health. Limit foods high in added sugar and processed fats, as they can affect blood sugar and heart health. Exercise that is gentle on the joints, such as swimming or cycling, can help maintain strength and mobility without putting too much stress on the body.

Mental health and emotional wellbeing

Living with a rare condition can be emotionally challenging. You may feel anxious, low, or frustrated about changes in your appearance or health. It is completely understandable to feel this way. Talking to a doctor, a counsellor, or a mental health professional can be very helpful. If you are in need of immediate crisis support, contact a mental health crisis service in your area.

Prevention

There is no known way to prevent acromegaly. It is not caused by lifestyle choices, and no diet, supplement, or exercise plan has been shown to reduce the risk. Early detection and treatment can prevent complications and improve quality of life.

Vaccines

There is no vaccine to prevent acromegaly. However, staying up to date with recommended vaccines for general health is always a good idea.

Screening programmes

Routine screening for acromegaly is not recommended for the general population. If you have a family history of a rare genetic syndrome linked to pituitary tumours, your specialist may recommend regular monitoring, but this is only in specific circumstances.

Complications

If left untreated

• High blood pressure and an increased risk of heart problems
• Type 2 diabetes due to the effects of excess growth hormone
• Osteoarthritis and joint damage
• Sleep apnoea, leading to poor sleep and daytime tiredness
• Vision problems caused by pressure on the optic nerves
• Increased size of organs, such as the heart, which can reduce function

Long-term outlook

With proper treatment, the outlook for acromegaly is generally good. Most people are able to bring their hormone levels under control, which can stop further growth changes and reduce symptoms. Treatment might take time and often requires ongoing care, but many people go on to live active, fulfilling lives. Your healthcare team will support you at every stage.

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