Acromegaly awareness

Overview

Acromegaly is a rare condition where your body makes too much growth hormone, usually from a small, non-cancerous tumor in the pituitary gland (a gland at the base of your brain). This extra hormone causes bones and tissues to grow larger over time, especially in the hands, feet, and face.

No, acromegaly is rare. It affects about 3 to 14 people in every 100,000. It is not common, but being aware of the signs can help with early diagnosis.

Acromegaly most often affects adults between the ages of 30 and 50. It can affect both men and women. In children, too much growth hormone before bones stop growing causes a different condition called gigantism.

Symptoms

Common symptoms

• Enlarged hands and feet – you may notice rings, gloves, or shoes no longer fit.
• Coarsening of facial features – such as a larger nose, lips, tongue, or jaw.
• Thick or oily skin, and skin tags.
• Excessive sweating and body odor.
• Joint pain and stiffness.
• Tiredness and weakness.
• Deep, husky voice due to enlarged vocal cords.
• Numbness or tingling in hands (carpal tunnel syndrome).
• Snoring or sleep apnea (pauses in breathing during sleep).
• Vision problems or headaches (if the tumor presses on nearby nerves).

Symptoms in children

• In children, excess growth hormone before growth plates close leads to gigantism – very rapid growth and extreme height.
• Symptoms also include larger hands and feet, delayed puberty, and joint problems.

Symptoms in older adults

• In older adults, symptoms may be less obvious and mistaken for normal aging, such as joint pain or facial changes.
• Other signs include high blood pressure, diabetes, or heart problems that develop more quickly.

Causes

Main causes

• The most common cause is a benign (non-cancerous) tumor called a pituitary adenoma. This tumor makes extra growth hormone.
• Rarely, other tumours elsewhere in the body (like in the pancreas or lungs) can also produce growth hormone or a related substance.

Risk factors

• Most cases of acromegaly occur by chance and have no known risk factors.
• There is no strong link to lifestyle or diet.

When to see a doctor

See a doctor urgently if:

• If you have sudden severe headache, vision changes, or weakness – call your local emergency number immediately.
• If you notice new carpal tunnel symptoms or sleep apnoea that is getting worse.

Book a routine appointment if:

• Make an appointment if you think your hands, feet, or facial features are changing in size or shape.
• Also see your doctor if you have persistent joint pain, excessive sweating, or tiredness without a clear cause.

Diagnosis

Your doctor will start by asking about your symptoms and doing a physical exam. They will check for typical changes in your hands, feet, and face. Then blood tests are used to measure your growth hormone and another hormone called IGF-1 (insulin-like growth factor 1), which is a marker of long-term growth hormone levels.

Tests that may be done

• Blood test for IGF-1 levels – a high level suggests acromegaly.
• Oral glucose tolerance test – you drink a sugary liquid and then have blood taken to see if growth hormone levels drop normally.
• MRI (magnetic resonance imaging) scan of your pituitary gland to look for a tumour.
• Sometimes a CT scan or other imaging if an MRI is not possible.

What to expect at your appointment

These tests are done in a hospital or clinic. The blood tests are simple and quick. The glucose tolerance test takes about 2 hours. An MRI is painless but you lie still in a noisy machine. Your doctor will explain everything and make sure you are comfortable.

Treatment

Treatment for acromegaly aims to reduce growth hormone levels to normal, shrink or remove the pituitary tumour, and relieve symptoms. The right treatment depends on your age, overall health, and the size and location of the tumour. A team of specialists – including an endocrinologist (hormone doctor) and a neurosurgeon – will plan your care.

Self-care at home

• Get regular follow-up appointments with your healthcare team to monitor hormone levels and symptoms.
• Manage related conditions like high blood pressure or diabetes with diet and lifestyle changes.
• Wear comfortable shoes and use hand creams if skin is dry or thick.
• If you have joint pain, gentle exercise like swimming or walking can help.

Medical treatments

Treatment usually starts with surgery to remove the pituitary tumour. If surgery is not possible or does not fully control the condition, medication can lower growth hormone levels. These medicines include drugs that block growth hormone or reduce its production. Radiation therapy may be used if other treatments do not work. Your doctor will discuss the best options for you. (No specific drug names or doses are given here – always follow your doctor's advice.)

When is surgery considered?

Surgery to remove the pituitary tumour is often the first treatment. It works best for smaller, well-defined tumours. After surgery, most people’s growth hormone levels drop to normal. Sometimes additional treatment is needed if any tumour remains.

Living with this condition

Living with acromegaly means being aware of your body and staying in touch with your healthcare team. You may need to adjust to changes in your appearance, but many people feel much better after treatment. Regular check-ups help keep hormones under control and catch any problems early.

Lifestyle tips

• Follow up with your endocrinologist as recommended – usually every 6 to 12 months.
• Get enough sleep and treat sleep apnoea if you have it.
• Manage stress with relaxation techniques or hobbies.
• Keep a list of your symptoms to share with your doctor.

Diet and exercise

A balanced diet rich in fruits, vegetables, whole grains, and lean protein supports overall health. If you have high blood pressure or diabetes, your doctor may suggest a heart-healthy diet low in salt and added sugars. Exercise such as walking, swimming, or gentle stretching can help with joint pain and keep your heart healthy. Always talk to your doctor before starting a new exercise routine.

Mental health and emotional wellbeing

Acromegaly can affect how you feel about your body and self-esteem. Facial and body changes may cause embarrassment or anxiety. It is normal to feel worried or down. Talking to a mental health professional or joining a support group can help. You are not alone – many people with acromegaly lead full, happy lives.

Prevention

There is no known way to prevent acromegaly because it is usually caused by a spontaneous tumour that is not linked to lifestyle. Early diagnosis and treatment can prevent complications and help you feel better.

Complications

If left untreated

• Heart disease, including high blood pressure, enlarged heart, and irregular heartbeat.
• Type 2 diabetes.
• Arthritis and joint damage from thickened cartilage.
• Sleep apnoea that affects breathing during sleep.
• Vision loss or blindness if the tumour presses on the optic nerves.
• Increased risk of colon polyps and colon cancer.

Long-term outlook

With early diagnosis and proper treatment, most people with acromegaly can bring their hormone levels under control and live a normal life. Symptoms may improve or even reverse. Ongoing follow-up is important, but the outlook is generally good. Many people continue to work, enjoy hobbies, and spend time with loved ones.

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