Read answers to some common questions that people living with acromegaly have asked.
Please note that the patient testimonials shown on this page reflect only one person’s opinions about their own care. Each person’s case is unique and all treatments have side effects. These will vary depending on the treatment you receive and how your body reacts to it. Ask your doctor about side effects when considering a given treatment.
Acromegaly is a hormonal or endocrine disorder that is characterised by enlarged physical features such as a protruding brow, enlarged lips, an exaggerated jawline, and larger than normal hands and feet.
Acromegaly is caused by a benign tumour in the pituitary gland, which is a small pea-like structure at the base of the brain.
The presence of the tumour in the pituitary gland leads to the over production of growth hormone in the body which leads to physical symptoms such as heavy or prominent facial features, hand and feet.
Acromegaly is not the same as gigantism. These are separate conditions. Acromegaly occurs in adults and gigantism occurs in children.
Acromegaly is rare condition.
About 1,000 people in Australia are estimated to have acromegaly.
Acromegaly usually occurs in adults from the age of 30 to 50 years.
It is unlikely that other family members will have acromegaly or that it will be passed on to your children.
The symptoms of acromegaly vary from person to person but may include heavy or prominent facial features, enlarged hands (e.g. rings not fitting) and enlarged feet (e.g. shoes not fitting), among many others. Such symptoms may appear gradually and thus be difficult to spot.
Acromegaly can affect eyesight. However, problems with vision caused by the benign pituitary tumour pressing on the optic nerve can often be resolved by surgery to remove the tumour.
An endocrinologist usually confirms a diagnosis of acromegaly. If you think you could have acromegaly symptoms, please go to your usual doctor who should refer you to an endocrinologist.
The diagnosis of acromegaly is often delayed as the symptoms develop gradually. It is not uncommon for people to remain undiagnosed for several years.
Acromegaly itself cannot be prevented but it can be treated very effectively.
Acromegaly is associated with several other health issues, such as diabetes and heart problems, the long-term effects of which may be prevented if recognised and appropriately managed.
Acromegaly treatments include surgery, medications and radiotherapy.
No surgery is without risks and sometimes other parts of the pituitary gland may be damaged leading to reduced production of certain hormones and the need to take hormone replacement therapy.
Pain relieving and other medications will be given to you to ease temporary symptom after surgery. You may also feel tired after the surgery.
All medications have side effects, although not everybody will experience them or to the same degree and the side effects experienced will depend on the specific medicine you are prescribed.
Always read the patient information leaflet that is provided with your specific medicine and talk to healthcare professional to learn about what to expect so that you can be prepared.
Side effects of radiotherapy may include decreased production of other hormones produced by the pituitary gland meaning that hormone replacement therapy is needed.
There could also be vision defects, temporary hair loss and some tiredness.
In general, successful treatment of acromegaly and keeping hormones within their normal ranges will normalise life expectancy.
The long-term outlook for someone with acromegaly will depend on the individual’s circumstances, how they have been treated and their overall health besides having acromegaly.
Acromegaly can cause complications such as diabetes and heart problems that can shorten your life expectancy if left untreated.
If comorbid conditions do occur there are also treatments to reduce the risks associated with having them.
Once the initial phase of treatment is over and your condition has stabilised there should be no health reason why you cannot go on holiday or take that business or study trip.
Learn about acromegaly including what causes this slowly evolving condition, and the early symptoms and signs
Information about the emotional, physical and social challenges of living with acromegaly
Find an acromegaly patient support group in your country to find out about local activities and events that you may be able to attend