Acromegaly

Acromegaly is a rare but serious medical condition that causes your organs, bones and tissues to grow larger than average due to high levels of growth hormone (GH) in your body. Tumors on your pituitary gland typically cause it.

High amounts of GH are necessary in children because it helps them grow taller. Once a child’s growth plates close, GH no longer increases height. But your body still needs it. In adults, GH helps maintain normal bone, cartilage and organ structure. It supports your metabolism, including keeping your blood glucose (sugar) levels within a healthy range.

Too much GH in your body as an adult can lead to irregularly shaped bones, enlarged organs, high blood sugar and other symptoms.

Symptoms of acromegaly

Acromegaly symptoms often start slowly and may be difficult to notice at first. The condition affects your body’s bones and tissues, making them grow in irregular ways. Some people only notice their hands are bigger when the rings they regularly wear feel tight or their shoe size changes, especially the width.

Specific symptoms of acromegaly include:

• Large hands or feet
• Changes in your face shape, like 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
• Gaps between your teeth

Other symptoms could include:

• Headaches
• Joint pain
• Vision changes
• Numbness in your hands
• Sleep apnea
• Carpal tunnel syndrome

Acromegaly causes

The most common cause of acromegaly is a tumor on your pituitary gland called a pituitary adenoma. Most of these tumors don’t release any hormones. Sometimes, the tumor releases too much growth hormone (GH). This leads to acromegaly.

Pituitary adenomas usually develop for unknown reasons. Sometimes, they run in families due to inherited genetic conditions.

Pituitary adenomas are almost always benign (noncancerous). Most adenomas that cause acromegaly grow slowly. This is why you may not notice symptoms for many years.

Depending on its size and location, the adenoma may press against other 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.

Risk factors

Acromegaly can develop at any age after puberty. But healthcare providers most often diagnose it in people who are in their 40s or 50s.

You can’t lower your risk for the condition because experts don’t know exactly why some people develop it.

It affects about 3 to 14 people in every 100,000.

Complications of this condition

High levels of GH cause high levels of IGF-1 (insulin-like growth factor 1). IGF-1 affects how your body processes sugar (glucose) and fats (lipids). This can lead to complications like:

• Type 2 diabetes
• High blood pressure (hypertension)
• Heart disease

Other complications of acromegaly can include:

• Cardiomyopathy
• Arthritis
• Colon polyps, which can turn into colon cancer

How doctors diagnose acromegaly

Your healthcare provider will make a diagnosis based on your medical history, an exam and hormone blood tests. They may take an MRI of your pituitary gland. You’ll most likely see an endocrinologist.

They may run additional tests to see whether the condition has affected other parts of your body. These tests may include:

• An echocardiogram to check for heart issues
• Sleep study to check for sleep apnea
• A colonoscopy to check 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. The most common are surgery, medication and radiation therapy. Your healthcare provider will consider your symptoms and needs before recommending treatment.

Surgery for acromegaly

In many cases, surgery improves your symptoms or corrects the condition entirely.

The specifics of the surgery depend on the tumor’s size and location. The goal of surgery is to remove as much of the tumor as possible. If your surgeon removes enough of the tumor, you may not need further treatment. If your surgeon can remove only part of it, you may need medication or radiation therapy to manage your symptoms and reduce the production of growth hormone.

Surgeons most often use a procedure called transsphenoidal surgery. This involves removing the pituitary tumor by going through your nose instead of opening your skull.

Medications for acromegaly

Your healthcare provider may prescribe one medication or a combination of medications. Medications work in different ways to lower your body’s growth hormone levels and improve your symptoms. In some cases, medication can shrink the tumor so it can be safer to remove with surgery. Other people may need to take medication regularly to manage symptoms and keep GH levels in a healthy range.

Is acromegaly curable?

Acromegaly can sometimes be cured. When the tumor is removed with surgery, cure rates are between 78% and 95% for small tumors and 35% to 67% for large tumors.

Medications can’t cure acromegaly, but they can control your hormone levels and help you manage symptoms.

When should I see my healthcare provider?

Talk to your healthcare provider if you have symptoms of acromegaly. If you receive a diagnosis, you’ll see your provider regularly to make sure your treatment is working well.

What can I expect if I have this condition?

What you can expect depends on how severe the condition is and how well treatment manages hormone levels. Many people see a significant improvement in their symptoms.

Without treatment, acromegaly can change your appearance and the shape of your bones. These symptoms can greatly affect your self-image and quality of life. Support groups or counseling can help you cope with these challenges.

Health complications of acromegaly, like heart disease or Type 2 diabetes, can also decrease quality of life and shorten your lifespan. That’s why it’s important to contact your healthcare provider if you have symptoms. Once you begin treatment, follow your treatment plan and work closely with your healthcare team.

What is the life expectancy of someone with acromegaly?

Your life expectancy depends on how severe the condition is and whether you have other health conditions.

If your growth hormone levels aren’t well-managed and you have other conditions like heart disease and Type 2 diabetes, your life expectancy may go down by about 10 years.

But if acromegaly is well-treated and you have normal growth hormone and insulin-like growth factor 1 (IGF-1) levels, you’ll likely have a normal life expectancy.