Common Questions
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.
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What is acromegaly?Acromegaly is a chronic condition characterized by signs such as enlargement of the hands, feet, and facial features. Untreated, it may lead over time to serious medical problems such as diabetes and heart disease, and even premature death. |
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What causes acromegaly?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. |
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What is 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. |
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How common is acromegaly?Acromegaly is rare. In the U.S., about 40-60 out of every million people have acromegaly. It can occur at any age, but most commonly affects adults between the ages of 40-45 years. |
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How do I know if I have acromegaly?Because it develops so gradually, acromegaly can be difficult to detect. In most cases it is not diagnosed until the symptoms are relatively advanced. |
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What are the symptoms of 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. |
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What can happen if I don't get treatment for acromegaly?Over time, acromegaly can lead to serious health problems such as hypertension, diabetes, and heart disease. That's why it's important to visit your doctor if you think you may have it, and maintain your therapy if you've been diagnosed. |
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What is gigantism?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. |
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Is acromegaly a fatal disease?By itself, acromegaly is not usually fatal. However, the complications of acromegaly (such as hypertension, diabetes, and heart disease) can eventually be fatal. Fortunately, successful treatment can help. |
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How is acromegaly diagnosed?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 CT or MRI scan to look for a pituitary tumor. |
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What treatments are available for acromegaly?For the majority of cases in which acromegaly is caused by a pituitary tumor, the treatment options include surgical removal of the tumor, drug therapy, and radiation therapy. |
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Will I need surgery?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. |
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Is surgery a cure?Most patients who undergo surgery will go into remission, with return of hormone levels to normal. However, there is a risk of recurrence. Acromegaly treatment guidelines for healthcare professionals can be found at the website of the American Association of Clinical Endocrinologists (AACE). |
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What are the goals of treatment?The main goal of treatment, whether surgical or medical, is to prevent or reverse the serious complications that can shorten your life expectancy. Another important goal is to relieve the signs and symptoms of acromegaly. These goals may be addressed by surgery to reduce the tumor mass, and by surgical or medical control of GH and IGF-1 levels. |
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What are normal GH and IGF-1 levels?After an OGTT, GH levels should be less than 1 ng/mL. 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. |
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What should I ask my doctor about my condition?Asking questions is a great way to stay in control of acromegaly, and build an 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. |
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Why is control important?It's important to get and stay in control of 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 sooner you get in control, the better your chances of preventing and even reversing the symptoms. |
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How can I take control of acromegaly?The first step in taking control of acromegaly is to make and keep regular appointments with your doctor. By building a good relationship with your entire health care team, you can stay on top of symptoms, find the best treatment, and ensure that your treatment is working. |
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Where can I go for more information?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. |
