On this page, you'll find answers to frequently asked questions about acromegaly. Please keep in mind that these answers are not a substitute for consultation with your healthcare team. Please ask your doctor, pharmacist, or nurse any questions you may have.
Definitions and causes of acromegaly/general topicsQ.
What is acromegaly?A.
Acromegaly is a chronic condition characterised by signs such as enlargement of the hands, feet, and facial features. Over time, this may lead to serious medical problems such as diabetes and heart disease. Uncontrolled acromegaly can even lead to premature death.Q.
What causes acromegaly?A.
Acromegaly is caused by excess production of growth hormones. These include growth hormone (GH) and insulin-like growth factor-1 (IGF-1). In most cases, this results from a small, noncancerous tumour on the pituitary gland.Q.
What is the pituitary?A.
The pituitary is a small gland (about the size of a pea) located at the base of the brain, behind the eyes. It is sometimes referred to as a "master gland" because it secretes hormones that control the function of many other parts of the endocrine system.Q.
How common is acromegaly?A.
Acromegaly is rare. About 60 out of every million people have acromegaly.Q.
What is gigantism?A.
Gigantism is the name used for acromegaly when it occurs in children. Because they have excess growth hormone, these children grow much taller much more quickly than their peers.Q.
What are the GH and IGF-1 levels to confirm a diagnosis of acromegaly?A.
After an oral glucose tolerance test (OGTT), GH levels should be <1 ng/mL. Without an OGTT, an average level of <2.5 ng/mL from multiple random samples is considered normal. IGF-1 levels depend on your age and gender, and the reference numbers may vary slightly depending on which laboratory provides the results.
Signs and symptoms of acromegalyQ.
How do I know if I have acromegaly?A.
Because it develops so gradually, acromegaly can be difficult to detect. In most cases it is not diagnosed until the symptoms are relatively advanced. Ask your doctor if your symptoms are related to acromegaly.Q.
What are the symptoms of acromegaly?A.
There are many potential signs and symptoms of acromegaly, with the most common being a gradual enlargement of the hands, feet, or facial features that occurs over several years. You may notice that a ring no longer fits your finger, or that you need a larger shoe size. There are also internal changes that can affect general health and well-being.
Complications from acromegalyQ.
What are the complications of acromegaly?A.
The symptoms of acromegaly can affect both physical appearance and general health. Health complications include hypertension, sleep apnea, goiter, and visual field defects.Q.
Is acromegaly a fatal disease?A.
By itself, acromegaly is not usually fatal. However, the complications of acromegaly (such as hypertension, diabetes, and heart disease) can eventually be fatal. Fortunately, managing the condition can help.
How is acromegaly diagnosed?A.
Acromegaly is not easy to diagnose, and is often missed by general practitioners. Although some of the signs of acromegaly are very distinctive, they can be subtle. The diagnosis can be confirmed by blood tests, magnetic resonance imaging (MRI) scan, or computerized tomography (CT) scan to look for a pituitary tumour.
What treatments are available for acromegaly?A.
For the majority of cases in which acromegaly is caused by a pituitary tumour, the treatment options include surgical removal of the tumour, medical therapy, and radiation therapy.Q.
Will I need surgery?A.
For many patients with acromegaly, surgery is the treatment of choice. Unlike other kinds of brain surgery, the procedure does not require opening the skull. Instead, in a procedure called a transsphenoidal hypophysectomy, the pituitary tumour is removed via an incision made through the nasal cavity.Q.
Does surgery lead to biochemical control?A.
Most patients who undergo surgery will go into remission, with return of hormone levels to normal. However, there is a risk of recurrence. Research shows that remission with surgery is based on multiple factors, including whether the patient presents with a macroadenoma or a microadenoma. Patients with a microadenoma have about an 85% chance of remission with surgery, whereas for those with a macroadenoma the chances of remission are lower—about 30%.Q.
Why is managing acromegaly important?A.
It's important to manage acromegaly because, over time, acromegaly not only changes the way you look, it can also cause serious health complications such as hypertension, sleep apnea, goiter, and visual field defects. If left uncontrolled, acromegaly can lead to reduced life expectancy.Q.
How can I take an active role in helping to manage acromegaly?A.
The first step toward helping to manage acromegaly is to make and keep regular appointments with your doctor. By building a good relationship with your entire healthcare team, you can develop a treatment plan for yourself.Q.
Where can I go for more information?A.
There are many resources available to find out more about acromegaly. For a listing of Web sites where you can find more information about the disease, as well as patient support groups, click here.Q.
What should I ask my doctor about my condition?A.
Asking questions is a great way to take an active role in managing your acromegaly disease, as this can help you maintain open communication with your doctor. It's a good idea to write down your questions before doctor appointments, so you can be sure you've asked them all. For a list of questions you may wish to ask, click here.