Acromegaly explained: symptoms, diagnosis and treatment

What acromegaly is

The pituitary is a pea-sized gland at the base of the brain that controls many of the body's hormones, including growth hormone. In acromegaly, a usually non-cancerous tumour of the pituitary makes too much growth hormone. In children and teenagers, before the bones have finished growing, an excess causes unusual height, called gigantism. In adults, whose long bones can no longer lengthen, the excess instead causes bones and soft tissues to thicken and enlarge, and internal organs to grow. Growth hormone works partly through another chemical made by the liver, and it is the sustained, years-long overproduction that drives the slow physical changes. Because the tumour grows slowly and the changes creep up gradually, many people have had acromegaly for years before it is recognised.

The symptoms it causes

The changes of acromegaly are gradual and easy to overlook day to day. Common features include enlarging hands and feet — rings become tight and shoe size increases — and coarsening of the face, with a more prominent brow and jaw, larger nose and lips, and gaps opening between the teeth. People may notice thicker, oilier skin, excessive sweating, deepening of the voice, headaches, joint aches, and tiredness. Tingling in the hands from trapped nerves, snoring or interrupted breathing at night, and changes in periods or sexual function can occur. Over time, untreated acromegaly raises the risk of high blood pressure, diabetes, heart problems and bowel growths, which is part of why diagnosing and treating it matters. Comparing old and recent photographs often makes the slow change strikingly clear.

How it is diagnosed

Because growth hormone levels naturally rise and fall through the day, a single measurement is not enough. Diagnosis usually relies on a blood test for the liver chemical that reflects average growth hormone activity, which stays more steady, together with a test that checks whether growth hormone falls normally after a sugary drink — in acromegaly it fails to switch off as it should. If these point to acromegaly, an MRI scan of the pituitary looks for the tumour and shows its size and position. Because a pituitary tumour can press on nearby structures, an eye test may check the field of vision, and other pituitary hormones are measured to see whether they are affected. Building this picture confirms the diagnosis and guides the best treatment for the individual.

How it is treated

The main aim of treatment is to bring growth hormone levels back to normal, relieve symptoms and, where possible, remove or shrink the tumour. For most people the first treatment is an operation to remove the pituitary tumour, usually carried out through the nose by specialist surgeons, which can cure or greatly improve the condition. If surgery does not fully control the hormone levels, or is not suitable, medicines can be used to lower growth hormone or block its effects, and a form of targeted radiotherapy may be used to control tumour growth over time. Treatment is tailored to each person and often combines approaches. Alongside this, the associated problems — such as high blood pressure, diabetes, sleep-related breathing problems and joint disease — are managed, and regular monitoring checks that hormone levels stay controlled.

Living with acromegaly

Acromegaly is a long-term condition that needs ongoing specialist care, usually led by hormone specialists working with pituitary surgeons and other teams. Even after successful treatment, regular blood tests and scans are used to make sure hormone levels remain controlled and the tumour does not regrow, and to keep an eye on related conditions such as heart and bowel health. Some of the physical changes may lessen with treatment, though bony changes tend to remain, and support with joint problems, sleep and general wellbeing is important. Because other pituitary hormones can be affected by the tumour or its treatment, some people need hormone replacement and should carry information about this for emergencies. With modern treatment and good follow-up, many people with acromegaly live full lives, and early diagnosis improves the outlook.