What is acromegaly?

When your pituitary gland makes too much growth hormone, abnormal growth occurs. This is called acromegaly. The abnormal growth starts in your hands, face, 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.

In children before puberty, too much growth hormone causes a condition called gigantism. This leads to a large increase in height.

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 noncancer (benign) tumor in the pituitary gland. Tumors in other parts of the body that cause an increase in growth hormone can also cause acromegaly. But that is very rare.

What are the symptoms of acromegaly?

Each person’s symptoms may vary. They depend on how long you have had the disease. Symptoms may include:

• Swelling of your hands and feet. You may find your rings no longer fit and you need to buy larger shoes.

• Larger lips, nose, and tongue, as your bones grow

• Larger jaw that sticks out more (protrudes)

• Thicker body hair

• Thicker, darker skin and skin tags

• More sweat and body odor

• Deeper voice

• Larger chest as your ribs get thicker

• Joint pain

• Degenerative arthritis

• Increased size of your heart and other organs

• Strange feelings and weakness in your arms and legs, including carpal tunnel syndrome

• Snoring and breaks in breathing during sleep (sleep apnea) from thickened tissue around your throat

• Lack of energy (fatigue) and weakness

• Headaches

• Loss of eyesight or double vision

• Irregular menstrual cycles (women)

• Breast discharge (women)

• Men unable to have or maintain an erection (impotence)

• Enlarged thyroid gland

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

How is acromegaly diagnosed?

Symptoms may not be seen right away. So acromegaly is often not found until years later. Your healthcare provider will take your health history and give you a physical exam. In addition, you may need:

• Photos taken regularly over the years. These are used to see physical changes.

• Blood tests. These are done to check your growth hormone level and levels of other related hormones.

• X-rays. These are done to see bone thickening.

• MRI or CT scan. These can help find tumors.

How is acromegaly treated?

Treatment will depend on your symptoms, age, and general health. It will also depend on how severe the condition is.

Treatment of acromegaly depends on what is causing the disease. The main goal of treatment is to get your growth hormone levels back to normal.

Most cases are caused by benign tumors on the pituitary gland. Others are caused by tumors in the pancreas, lungs, or adrenal glands. Treatment may include:

• Surgery to remove or reduce the size of a tumor

• Radiation therapy to kill tumor cells if surgery is not possible

• Shots (injections) of medicines to block growth hormone

• Oral medicine to block the effect of growth hormone

What are possible complications of acromegaly?

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

• Heart disease (enlarged heart)

• Arthritis

• Diabetes and impaired glucose tolerance.

• Osteoporosis

• High blood pressure

• Vision problems

• Decreased function of the ovaries and testes as well as other organs that rely on normal pituitary cells for stimulation.

The disease also raises your risk for colon polyps. These are small growths on the lining of your colon. They may lead to colorectal cancer.

Living with acromegaly

You should see your healthcare provider on a regular basis. Your provider can make sure your treatment is working. Your provider can also check for any problems. Early treatment can then be started if needed.

When should I call my healthcare provider?

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

Key points about acromegaly

• Acromegaly is a rare disease. It occurs when your pituitary gland makes too much growth hormone for a long time. That causes abnormal growth.

• It starts in the hands, face, and feet. It affects mostly middle-aged adults though it can occur at any age.

• Most people with this condition have a noncancer (benign) tumor in the pituitary gland.

• Symptoms depend on how long you have had the disease. Symptoms can be missed. So the disease is often not diagnosed until years later.

• If not treated, acromegaly can lead to heart problems, arthritis, diabetes, vision problems, high blood pressure, or even death.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• 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 name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• 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.