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FAQs: About Acromegaly

Frequently asked questions about acromegaly

From diagnosis of acromegaly to treatment, your experience and your questions about acromegaly may change over time. Here you will find answers to frequently asked questions about acromegaly and IGF-I levels.

What is acromegaly?

Acromegaly is a rare disease caused by a benign (non-cancerous) tumor of the pituitary gland. Only 60 out of 1 million people have acromegaly. When a person has too much growth hormone (GH), they have swelling and growth of some soft tissue and organs.

What symptoms can acromegaly cause?

The signs and symptoms of acromegaly show up in many ways. Some of these may include:

  • Joint pain (for example, in knees or hips)
  • Headaches
  • Fatigue (weakness)
  • Sweating
  • Swelling of the hands and feet (wider shoes)
  • Increased ring size

Acromegaly can be associated with many more symptoms.
Speak with your doctor to learn more about its signs and symptoms.

What causes acromegaly?

It is caused by a pituitary tumor producing and secreting in the blood too much growth hormone (GH). Too much GH goes to the liver and causes the liver to produce more than the normal amount of a protein called insulin-like growth factor I (IGF-I). It is this extra IGF-I that causes the swelling and growth of soft tissues and organs.

Why did I get acromegaly?

It is not understood why some people develop acromegaly. However, in more than 95% of people with acromegaly, a benign tumor on the pituitary is the cause of excess GH.

What is IGF-I?

IGF-I is a protein everyone has in their bodies. The body uses IGF-I to promote tissue and bone growth, especially during childhood. As a person gets older, the level of IGF-I goes down. The normal level of IGF-I in the body depends on a person’s age and gender, so not all people have the same level of IGF-I.

Why are IGF-I levels important in acromegaly?

If your IGF-I level is too high, this may indicate that you have acromegaly. You may also experience symptoms, such as:

  • Joint pain (for example, in knees or hips)
  • Headaches
  • Fatigue (weakness)
  • Sweating more than normal
  • Swelling of the hands and feet (wider shoes)
  • Increased ring size
How will I know if I have acromegaly?

To find out if you have acromegaly, your doctor will conduct a history and physical examination and run blood tests. The most commonly used lab tests to diagnose acromegaly are IGF-I and GH. If these levels are too high, you may need a scan called an MRI. The MRI can help find and measure the tumor that is causing too much GH and IGF-I in your body.

How is acromegaly treated?

For most people with acromegaly, treatment starts by removing the benign tumor on the pituitary gland. This is done through surgery. Following surgery, a patient’s GH and IGF-I levels may drop, but not always to normal levels. These patients may then be treated with medication to control their IGF-I levels. Radiation may be used sometimes to shrink the tumor if surgery is not an option or has not been effective.

How does the doctor make decisions about treatment for acromegaly?

Your healthcare provider takes a number of factors into account when determining treatment. For most people, the first step is the removal of the benign tumor on the pituitary gland through surgery or radiation. Following that, if IGF-I levels do not become normalized, the physician considers other options, including medication. Talk to your doctor about both your symptoms and what kind of treatments are available. The more you know about your options, the better.

How do I know my acromegaly is under control?

Your physician will order blood tests to determine your IGF-I levels. In addition, you should monitor your signs and symptoms. If your symptoms continue, talk to your doctor about available options.

How can I find other people with acromegaly?

Although acromegaly is an extremely rare disease, there are online communities where you can find other patients. You can find many of them on the Acromegaly Communities and Resources page.

How can I explain this disease to my friends and family?

Because acromegaly is rare as well as difficult to diagnose, explaining it can be a daunting task. You can download this Friends & Family Brochure and give it to your friends and family for them to use as background.