Disease Information

Understanding Acromegaly

This page gives basic information you need to begin understanding acromegaly, including:

• What Is Acromegaly?
• The Symptoms of Acromegaly
• Acromegaly Pictures
• Taking Control of Acromegaly
• Controlling the 'Critical 4'
• Monitoring Your Treatment

What Is Acromegaly?

Acromegaly is a rare disease that affects about 40-60 out of every million people in the U.S. It is caused by the uncontrolled hypersecretion of growth hormone (GH) in the pituitary, a tiny gland — about the size of a pea — located behind the eyes, just below the brain. The pituitary gland produces several different hormones that control normal growth, metabolism, and reproductive activity.

In most cases of acromegaly, excessive production of growth hormone, usually caused by a small, noncancerous pituitary tumor, causes symptoms such as enlargement of the hands, feet, or facial features. While acromegaly itself is usually not fatal, the complications (such as cardiomegaly or diabetes) can be life threatening. That's why it's important to get and stay in control of the condition as soon as it has been diagnosed.

The Symptoms of Acromegaly

Because the signs and symptoms of acromegaly develop slowly, most people are not diagnosed until their 30s or 40s, and diagnosis is often delayed. According to available data, most people diagnosed with acromegaly do not receive the diagnosis until nearly 10 years after the disease process has begun.

Besides changes in appearance, acromegaly produces changes in the way the body works that can have serious health implications, which may include:

• Arthralgia (75%)
• Amenorrhea in women (72%)
• Hyperhidrosis (64%)
• Sleep apnea (60%)
• Headaches (55%)
• Paresthesia or carpal tunnel syndrome (40%)
• Impotence in men (36%)
• Hypertension (28%)
• Goiter (21%)
• Visual field defects (19%)
• Thyroid disorders

Acromegaly Pictures

Taking Control of Acromegaly

Acromegaly is not always easy to recognize. Perhaps you first noticed that your hands or feet were swollen or had actually grown in size. Or maybe you were bothered by sweating, headaches, or increasingly oily skin. Every case is slightly different. To take control of your condition, one thing you need to know about acromegaly is that it is a complex condition. While many symptoms seem to affect the way you look, acromegaly can also cause more subtle changes inside your body, some of which can have serious health consequences if not recognized and treated appropriately.

Fortunately, there are several ways to successfully control acromegaly — including transsphenoidal surgery, medical therapy, and radiation therapy (radiotherapy). While surgery is considered first-line therapy for most patients, it is not indicated for everyone, and its effectiveness as a cure depends on factors such as the size of the pituitary tumor, invasiveness of the tumor, and the skill of the surgeon. Patients with a microadenoma have a 50-90% chance of cure with surgery, whereas for those with macroadenoma, the chances fall to less than 50%.

You and your health care provider will determine the treatment plan that will work best for you. When you take control, you and your family can be optimistic about the future. Patients who follow their acromegaly treatment plan can maintain or even improve their health over the long term.

Controlling the Critical 4

When treating acromegaly, your doctor is most concerned with preserving your overall health and helping you control your debilitating disease. To keep you healthy, successful treatment of acromegaly means controlling the 'Critical 4':

1. Control of hypersecretion at the site of the tumor where hormone overproduction starts
2. Control of GH*
3. Control of IGF-1*
4. Control of symptoms

The most effective way of controlling hormone hypersecretion is surgery to remove the pituitary tumor. However, surgery is not right for everyone with acromegaly; for these patients, alternate treatments, such as medical therapy, are available.

Regardless of which treatment you receive, a key to living a healthy life with acromegaly is to maintain control of the 'Critical 4.' It's not only the outward symptoms of acromegaly that matter; it's what's going on inside your body. That is why it is important to visit your doctor regularly. On these visits, your doctor will monitor your symptoms and give you blood tests to ensure that your GH and IGF-1 levels remain within the normal range. By monitoring your GH and IGF-1 levels, you can help ensure that the disease process is not progressing.

Monitoring Your Treatment

At each visit to your doctor's office, your health care professional will monitor your situation to help ensure that your treatment is successful.

Several tests are useful in monitoring acromegaly. The most important are laboratory tests that measure the levels of GH and IGF-1 in the blood. There are different ways to measure these levels accurately. Because everyone's pituitary releases GH in short spurts throughout the day and night, a single measurement of GH provides only limited information. You may, therefore, have a series of GH blood tests. Or, you may have blood taken for GH levels after a night without food and an early morning drink of an extremely sweet solution. This is called an oral glucose tolerance test (OGTT). IGF-1 levels can be taken at any time; since IGF-1 is released more evenly than GH, levels remain higher longer. Levels of GH and IGF-1 are often measured in ng/mL, which stands for nanograms per milliliter. Please note that reference numbers can be slightly different depending on the laboratory your health care professional uses. But all are accurate methods of monitoring the progress of your treatment.

Learn about Sandostatin LAR® Depot and acromegaly