Acromegaly

What is acromegaly?

Acromegaly (pronounced a-krow-meh-guh-lee) is a rare but serious medical condition that happens when you have high levels of growth hormone (GH) in your body. Your pituitary gland normally produces GH, but tumors on your pituitary or in other parts of your body produce excess GH in acromegaly.

Your pituitary gland is a small, pea-sized endocrine gland located at the base of your brain below your hypothalamus. Your pituitary gland releases eight important hormones, including GH.

Growth hormone, also known as human growth hormone (hGH) and somatotropin, is a natural hormone that acts on many parts of the body to promote growth in children. Once the growth plates (epiphyses) in your bones have fused, GH no longer increases height, but your body still needs GH. After you’ve finished growing, GH helps to maintain normal bone, cartilage and organ structure and metabolism, including helping to keep your blood glucose (sugar) levels within a healthy range.

If you have too much GH in your body as an adult, it can result in irregularly-shaped bones, increased organ size, elevated blood sugar levels (hyperglycemia) and other symptoms.

What is the difference between acromegaly and gigantism?

Acromegaly and gigantism are both conditions that result from excess growth hormone (GH). The difference is in who the conditions affect — adults develop acromegaly, whereas children develop gigantism.

In children, gigantism occurs when they experience excess GH before the growth plates in their bones fuse (before the end of puberty). This causes them to grow very tall. Gigantism is more rare than acromegaly. Some healthcare providers refer to gigantism as pediatric acromegaly.

Once your growth plates have fused, excess GH causes acromegaly. In this case, you don’t grow in height, but the excess GH affects your bones’ shape and your organ size as well as other health factors.

Who does acromegaly affect?

Acromegaly can develop at any age after puberty, but healthcare providers most often diagnose it during the fourth and fifth decades of life (middle age).

How common is acromegaly?

Acromegaly is rare. Approximately 3 to 14 of every 100,000 people have been diagnosed with acromegaly.

How does acromegaly affect my body?

In adults, acromegaly (excess growth hormone) causes bones, cartilage, body organs and other tissues to increase in size. Characteristic changes in appearance include larger hands, feet, ears, lips and nose and a more prominent jaw and forehead.

Growth hormone (GH) signals your liver to produce another hormone called insulin-like growth factor 1 (IGF-1). IGF-1 is the hormone that actually causes your bones and body tissue to grow and also affects how your body processes blood glucose (sugar) and lipids (fats). High levels of GH result in high levels of IFG-1, which can lead to Type 2 diabetes, high blood pressure (hypertension) and heart disease.

What causes acromegaly?

The most common cause of acromegaly is a tumor in your pituitary gland called a pituitary adenoma that causes your pituitary gland to release excess growth hormone (GH).

Pituitary adenomas and acromegaly

Pituitary adenomas (tumors) are almost always benign (noncancerous). Most adenomas that cause acromegaly grow slowly, and you may not notice symptoms of excess GH for many years.

Depending on its size and location, the adenoma may press against other pituitary tissue and affect other hormones your pituitary gland makes. If the adenoma is large, it may also press against nearby parts of your brain, causing headaches and vision problems.

What are the symptoms of acromegaly?

In adults, acromegaly affects your body’s bones and tissues and causes them to grow in irregular ways.

Adults with acromegaly may experience the following symptoms:

• Enlarged hands or feet.
• Changes in your face shape, including a more prominent jaw and/or forehead.
• Increase in size of your lips, nose and/or tongue.
• Excessive sweating or oily skin.
• Deepening of your voice.

Other symptoms include:

• Headaches.
• Joint pain.
• Vision changes.
• Increase in the number of skin tags.
• Numbness in your hands.
• Sleep apnea.
• Carpal tunnel syndrome or spinal cord issues.

Acromegaly symptoms often start slowly and may be difficult to notice at first. Some people only notice their hands have grown in size when rings they regularly wear feel tight or their shoe size changes, especially the width.

If you’re experiencing these symptoms, it’s important to talk to your healthcare provider.

How is acromegaly diagnosed?

Symptoms of acromegaly often show up very slowly over many years. This makes it hard to diagnose.

Your healthcare provider may recommend you see an endocrinologist, a healthcare provider who specializes in hormone-related conditions. They'll make a diagnosis based on your medical history, a thorough clinical evaluation and specialized tests like blood tests and imaging tests.

What tests will be done to diagnose acromegaly?

If you’ve been diagnosed with acromegaly, your provider may order additional tests to see if the condition has affected other parts of your body. These tests may include:

• An echocardiogram to check for heart issues.
• Sleep study tests to check for sleep apnea.
• A colonoscopy to assess the health of your colon.
• X-rays or a DEXA (DXA) scan to check bone health.

How is acromegaly treated?

There are several treatment options for acromegaly. Your healthcare provider will consider your symptoms and circumstances before offering treatment options that are right for you.

The most common treatments for acromegaly are surgery, medication and radiation therapy.

Surgery for acromegaly

In many cases, surgery greatly improves acromegaly symptoms or corrects the condition entirely. Surgeons most often use a type of surgery called transsphenoidal surgery, which involves going through your nose and sphenoid sinus, a hollow space in your skull behind the nasal passages and below your brain, to perform surgery.

The specifics of the surgery will depend on the size and location of the tumor. The goal of surgery is to remove all of a tumor that is causing excess growth hormone production. If your surgeon removes enough of the tumor, you may not need further treatment. If your surgeon can remove only a part of a tumor, you may need medication or radiation therapy to manage your symptoms and reduce the production of growth hormone.

Medications for acromegaly

Your healthcare provider may prescribe one medication or a combination of medications. Medications work in different ways to normalize your body’s growth hormone levels and improve your symptoms. In some cases, a person may take medication until the tumor has shrunk. This can allow a surgeon to then safely remove it. Other people may need to take medication long-term to effectively manage growth hormone levels and symptoms.

Is acromegaly curable?

Acromegaly is curable in some situations but not all. The cure rate for surgical removal of a pituitary tumor that’s causing acromegaly is about 85% for small tumors and 40% to 50% percent for large tumors.

Medication can’t cure acromegaly but offers long-term, safe treatment.

Can I prevent acromegaly?

Unfortunately, there’s nothing you can do to prevent acromegaly. Scientists aren’t sure what causes pituitary tumors that cause acromegaly to develop, though they think certain genetic factors may play a role.

What is the prognosis (outlook) for acromegaly?

The prognosis (outlook) for acromegaly depends on how severe it is and how effectively therapies treat the symptoms. Many people with acromegaly see a significant improvement in symptoms after treatment.

If it’s not treated, acromegaly can significantly change your appearance and the shape of your bones. These symptoms can greatly affect your self-image and quality of life. Support groups help some people cope with the challenges they face because of acromegaly.

Health complications of acromegaly such as heart disease or Type 2 diabetes can also decrease quality of life and even shorten your lifespan. Because of this, it’s important to contact your healthcare provider if you’re experiencing symptoms and to adhere to your treatment plan if you’ve been diagnosed.

What are the complications of acromegaly?

If left untreated, acromegaly can cause the following complications:

• Type 2 diabetes.
• High blood pressure (hypertension).
• Heart disease.
• Cardiomyopathy (disease of your heart muscle).
• Arthritis.
• Colon polyps, which can potentially turn into colon cancer if left untreated.
• Organ failure.

What is the life expectancy of someone with acromegaly?

Life expectancy for someone with acromegaly depends on the severity of the condition and if they have other health conditions, usually due to untreated acromegaly.

If your growth hormone levels aren’t properly managed and you have other conditions like heart disease and Type 2 diabetes, your life expectancy may reduce by approximately 10 years.

If you have acromegaly that’s properly treated and have normal growth hormone and insulin-like growth factor 1 (IGF-1) levels, you’ll likely have a normal life expectancy.

When should I see my healthcare provider about acromegaly?

If you’re experiencing symptoms of acromegaly, it’s important to talk to your healthcare provider.

If you’ve been diagnosed with acromegaly, you’ll need to see your provider regularly to make sure your treatment is working well.

A note from Cleveland Clinic

Acromegaly is a rare but serious condition. The good news is that it’s treatable with surgery, medication and/or radiation therapy. If you’ve noticed an increase in size in your hands, feet and/or facial features, it’s important to talk to your healthcare provider. They can order some simple tests to see if your growth hormone levels are the cause of your symptoms.