Symptoms

Acromegaly can cause a wide range of symptoms, which tend to develop very slowly over time.

Early symptoms include:

• swollen hands and feet – you may notice a change in your ring or shoe size
• tiredness and difficulty sleeping, and sometimes sleep apnoea
• gradual changes in your facial features, such as your brow, lower jaw and nose getting larger, or your teeth becoming more widely spaced 
• numbness and weakness in your hands, caused by a compressed nerve (carpal tunnel syndrome)

• abnormal periods (in women) and erection problems (in men)

Symptoms often become more noticeable as you get older.

Diagnosis

Acromegaly can usually be successfully treated, but early diagnosis and treatment are important to prevent the symptoms from getting worse and reduce the chance of complications. Many people with acromegaly do not know they have the condition because the onset of symptoms is usually slow. However, if your doctor suspects you have acromegaly, they can test you for it. Acromegaly is most often diagnosed in middle-aged adults, but the symptoms may appear at any age.

Blood tests can determine if you have too much GH, but these are not always accurate because GH levels fluctuate throughout the day. Instead, your doctor may order a glucose tolerance test. This test requires you to drink 75 to 100 grams of glucose and then have your GH levels tested. If your body is secreting normal levels of GH, excess glucose will cause your body to suppress your GH levels. People who have acromegaly will still show high GH levels.

Doctors may also test for a protein called insulin-like growth factor 1 (IGF-1). Levels of IGF-1 can show if there is an abnormal growth in the body. IGF-1 testing can also be used to monitor the progress of other hormone treatments. X-rays and MRI scans may be ordered to check for excess bone growth if your doctor suspects you have acromegaly. Your doctor will also perform a physical exam, and they may order a sonogram to check the size of internal organs.

After you are diagnosed with acromegaly, your doctor can use MRI and CT scans to help them find the pituitary tumour and determine its size. If they do not find a tumour on the pituitary gland, your doctor will look for tumours in the chest, abdomen, or pelvis that may be causing excess GH production.

Causes

Growth Hormone (GH) is part of a group of hormones that regulate the growth and development of the body. People with Acromegaly have too much GH. It accelerates bone growth and organ enlargement. Because of this growth stimulation, the bones and organs of people with acromegaly are much larger than other people’s bones and organs.

GH is made in the brain’s pituitary gland. According to the National Institutes of Health (NIH), more than 95 per cent of people with acromegaly have a benign tumour affecting their pituitary. This tumour is called an adenoma. Adenomas are common. They affect about 17 per cent of people. In most people, these tumours do not cause excess GH, but when they do can result in acromegaly.

The type of treatment offered for acromegaly depends on the symptoms you have. Usually, the goal is to:

• reduce growth hormone production to normal levels
• relieve the pressure a tumour may be putting on surrounding tissues
• treat any hormone deficiencies
• improve your symptoms

Most people with acromegaly will have a pituitary tumour that needs to be surgically removed. Medication or radiotherapy may sometimes be needed after, or instead of, surgery.

Surgery

Surgery is effective in most people and can completely cure acromegaly. But sometimes the tumour is too large to be removed entirely, and you may need another operation or further treatment with medication or radiotherapy.

Under general anaesthetic, the surgeon will make a small cut inside your nose or behind your upper lip to access the pituitary gland.

A long, thin, flexible tube with a light and video camera at one end, called an endoscope, is fed into the opening so your doctor can see the tumour. Surgical instruments are passed through the same opening and used to remove the tumour. Removing the tumour should instantly lower your levels of growth hormone and relieve pressure on the surrounding tissue. Often, facial features start to return to normal and swelling improves within a few days.

With surgery, there is the risk of:

• causing damage to healthy parts of your pituitary gland
• leakage of the fluid that surrounds and protects your brain
• meningitis – although this is rare

Your surgeon will discuss these risks with you and answer any questions you have.

Medication

If your levels of growth hormone are still higher than normal after surgery, or surgery was not possible, you may be prescribed medication.

Three different types of medicine are used:

• A monthly injection of either octreotide, lanreotide or pasireotide: This slows down the release of growth hormone and can sometimes also shrink tumours.
• A daily pegvisomant injection: This blocks the effects of growth hormone and can significantly improve symptoms.
• Bromocriptine or cabergoline tablets: These can stop Growth Hormone from being produced, but they only work in a small proportion of people.

Each of these medications has different advantages and disadvantages. Speak to your doctor about the options available to you, and the benefits and risks of each.

Radiotherapy

If surgery is not possible, not all of the tumour could be removed or medication has not worked, then you may be offered radiotherapy.

This can eventually reduce your growth hormone levels, but it may not have a noticeable effect for several years and you may need to take medication in the meantime.

The outlook for people with acromegaly is usually positive if the condition is discovered in the early stages. Surgery to remove pituitary tumors is usually successful. Treatment may also help keep acromegaly from having long-term effects.

Coping with the symptoms and treatments of acromegaly can be challenging. Many people find it helpful to join support groups. Check online to find local support groups near you.