What is acromegaly?

When the pituitary gland makes too much growth hormone, abnormal growth occurs. This is called acromegaly. The name comes from the Greek word for “extremities” and “enlargement.” The abnormal growth starts in the hands and feet, as soft tissue begins to swell. This rare disease affects mostly middle-aged adults. It can lead to severe illness and even death if not treated.

What causes acromegaly?

Acromegaly happens when the pituitary gland makes too much growth hormone for a long time. Several reasons may cause this extra amount of hormone to be made. The most common is a benign tumor in the pituitary gland. Most people with the disease have this type of tumor. It is not cancer. Tumors in other parts of the body can also cause acromegaly. But that is rare.

What are the symptoms of acromegaly?

Symptoms of acromegaly can vary from person to person. They depend on how long you have had the disease. Each person may have symptoms in a different way. These are the most common symptoms and signs:

  • Swelling of your hands and feet
  • Features of your face become coarse as bones grow
  • Body hair becomes coarse as your skin thickens or darkens
  • You have more sweat (perspiration) and body odor
  • Your jaw sticks out (protrudes)
  • Your voice gets deeper
  • Your lips, nose, and tongue get larger
  • Your chest becomes barrel-like as your ribs get thicker
  • Joint pain
  • Degenerative arthritis
  • Your heart gets larger
  • Other organs get larger
  • Strange sensations and weakness in your arms and legs
  • Snoring
  • Fatigue and weakness
  • Headaches
  • Loss of eyesight
  • Irregular menstrual cycles in women
  • Breast milk made in women
  • Impotence in men

These symptoms may look like other health problems. Always see your health care provider for a diagnosis.

How is acromegaly diagnosed?

The symptoms of acromegaly may not be noticed right away. So the disease is often not found until years later. In addition to a full health history and exam, you may need:

  • Serial photos taken over the years, to see physical changes
  • X-rays, to see bone thickening
  • Blood tests, to check the growth hormone level
  • MRI or CT scan, to find tumors

How is acromegaly treated?

Your health care provider will figure out the best treatment for you based on:

  • How old you are
  • Your overall health and past health
  • How sick you are
  • How well you can handle specific medicine, procedures, or therapies
  • How long the disease is expected to last
  • Your opinion or preference

Treatment of acromegaly depends on what is causing the disease. Most cases are caused by benign tumors on the pituitary gland. Others are caused by tumors in the pancreas, lungs, or adrenal glands. You may need surgery to remove or reduce the size of a tumor.

You may also need radiation therapy and to take a drug that blocks the growth hormone. The goal of treatment is to fix the pituitary gland so it makes normal levels of growth hormone.

What are the complications of acromegaly?

If acromegaly isn’t treated, it can lead to several problems. These may include:

  • Heart disease
  • Arthritis
  • Diabetes
  • High blood pressure

The disease also raises your risk for colon polyps. They may lead to colorectal cancer.

Living with acromegaly

You should see your health care provider on a regular basis. He or she can make sure your treatment is still working. Your health care provider can also check for any complications. Early treatment can then be started if needed.

When should I call my health care provider?

Tell your health care provider if your symptoms get worse or you have new symptoms.

Key points about acromegaly

  • Acromegaly is a rare disease. It occurs when the pituitary gland makes too much growth hormone for a long time. That causes abnormal growth.
  • Acromegaly starts in the hands and feet. It affects mostly middle-aged adults.
  • Symptoms of acromegaly depend on how long you have had the disease. Because symptoms can be missed the disease is often not diagnosed until years later.
  • If not treated, acromegaly can lead to heart problems, arthritis, diabetes, or high blood pressure.

Next steps

Tips to help you get the most from a visit to your health care provider:
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.

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