On this page, you'll find links to answers for common questions about acromegaly. Please keep in mind that these answers are not a substitute for consultation with your health care team. Please ask your doctor, pharmacist, or nurse any questions you may have.
- What is acromegaly?
- What causes acromegaly?
- What is the pituitary gland?
- How common is acromegaly?
- How do I know if I have acromegaly?
- What are the symptoms of acromegaly?
- What is gigantism?
- Is acromegaly a fatal disease?
- How is acromegaly diagnosed?
- What treatments are available for acromegaly?
- Will I need surgery?
- Is surgery a cure?
- What are normal GH and IGF-1 levels?
- What should I ask my doctor about my condition?
- Why is managing acromegaly important?
- How can I take an active role in helping to manage acromegaly?
- Where can I go for more information?
Acromegaly is a chronic condition characterized 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, and even premature death.
Acromegaly is caused by excess production of certain growth hormones. These include growth hormone (GH) and insulin-like growth factor-1 (IGF-1). In most cases, this results from a small, noncancerous tumor on the pituitary gland.
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.
Acromegaly is rare. It's not known exactly how many people in the United States have it. Worldwide, itís believed that 60 out of every million people are affected by acromegaly. Yet, recent studies suggest the numbers might be as high as 115 to 295 out of every million people.
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.
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.
Gigantism is the name sometimes 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.
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.
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, as well as a computerized tomography (CT) or magnetic resonance imaging (MRI) scan to look for a pituitary tumor.
For the majority of cases in which acromegaly is caused by a pituitary tumor, the treatment options include surgical removal of the tumor, medical therapy, and radiation therapy.
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 tumor is removed via an incision made through the nasal cavity.
Most patients who undergo surgery will go into remission, with return of hormone levels to normal. However, there is a risk of recurrence.
In the past, the standard was that after an oral glucose tolerance test (OGTT), GH levels should be less than 1 ng/mL. However, the 2011 AACE (American Association of Clinical Endocrinologists) guidelines now suggest that serum GH nadir after glucose administration be lowered to 0.4 ng/mL to increase the sensitivity of testing. Without an OGTT, an average level of <2.5 ng/mL from multiple random samples is considered normal. Normal IGF-1 levels depend on your age and gender, and the reference numbers may vary slightly depending on which laboratory provides the results.
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 health care providers. It's a good idea to write down your questions before doctor visits, so you can be sure you've asked them all. For a list of questions you may wish to ask, click here.
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.
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 health care team, you can develop a treatment plan for you.
There are many resources available to you to find out more about acromegaly. For a listing of websites where you can find more information about the disease, as well as patient support groups, click here.