What Is Acromegaly?
Acromegaly is a disorder that happens when your body makes too much growth hormone (GH). It causes abnormal growth that usually starts in your hands and feet.
GH stimulates growth and development in children. In adults, GH affects energy levels, muscle strength, bone health, and one's sense of well-being.
Most people who get acromegaly are middle-aged. Children can have problems with too much growth hormone -- a condition called gigantism.
There are treatments for acromegaly, and every case is different. In most cases, it might be years before you notice symptoms.
The most common cause is a noncancerous tumor in your pituitary gland. This tumor is called a pituitary adenoma. The pituitary gland is in the skull, just below the brain. Because of the tumor, your body makes too much growth hormone.
Once in a while, tumors in the pancreas, liver, or parts of the brain can cause acromegaly by producing higher levels of another hormone, called IGF-1, which causes the symptoms you see.
Changes happen slowly, sometimes over years. Your hands and feet are usually large. You might notice a change in your ring or shoe size, especially your shoe width.
The features in your face -- your lips, jaw, nose, and tongue -- often change, becoming coarser and broader. Your teeth may begin to space out. Your brow and lower jaw may start to jut out from your face.
Other symptoms may include:
- Achy joints, possibly leading to arthritis
- Stiff, rough body hair
- Hoarser, deeper voice
- Pinched nerve problems
- Skin that’s oily or thick
- Skin tags
- Sweating a lot with body odor
- Snoring and sleep apnea, a breathing problem that happens during sleep
- Weakness and being tired
- Tingling or pain in fingers (carpal tunnel syndrome)
- Vision problems
- Lower sex drive
- Changes in menstrual cycle and breast discharge in women
- Erectile dysfunction in men
The sooner your acromegaly is diagnosed, the better. When you see your doctor, they'll ask you questions like these:
- What changes have you noticed?
- When did you first notice the problem?
- How are you feeling?
To tell for sure if you have acromegaly, your doctor will run a few tests, including:
- A blood test to see if your IGF-1 hormone levels are high for your age.
- A glucose tolerance test, where your doctor gives you a sugary drink and they measure the sugar and GH levels in your blood over 2 hours. If your levels don’t drop, this is a sign you could have acromegaly.
Other tests include:
- Checking your prolactin levels, which could be slightly elevated
- Echocardiogram, an ultrasound of your heart to see if it’s affected
- A colonoscopy to check if your colon is healthy
- A sleep study to see if you have sleep apnea
- X-rays to see if your bones have thickened
- MRI or CT scans to help find tumors
- Photos you’ve taken over the years to see any physical changes
Questions for Your Doctor
If you find out you have acromegaly, you'll probably have a lot of questions. You may want to start by asking your doctor:
- What is acromegaly?
- What is causing my acromegaly?
- What treatment do you recommend?
- How will treatment change my symptoms?
- What will success look like?
- What are the side effects?
- How many other people with acromegaly have you treated?
- Am I likely to get this again?
Your doctor will work with you to come up with the best treatment plan, taking into account your age, health, and how far along your condition is.
There are three ways to treat acromegaly:
Surgery is often the first treatment for people with large tumors affecting important areas, especially if they’re pressing on nerves that harm your vision. The surgeon will remove the tumor from the base of the brain. To get to it, they'll make a small cut in your nose or the inside of your upper lip. In some cases, your doctor may have you take medicine before the surgery to shrink the tumor.
After the surgery, your doctor will measure your hormones and will do imaging of the area where the tumor was removed. Your symptoms may start to get better after only a few days. Your doctor may recommend taking one of these medicines after surgery to help control or cure the disease and bring hormone levels back to normal:
- Somatostatin analogs (lanreotide, octreotide or pasireotide)
- Growth hormone receptor antagonists (pegvisomant)
- Dopamine agonists (cabergoline, bromocriptine)
Those drugs either lower the level of growth hormone in your blood or block the effects it has on your body.
Radiation helps if you have parts of a tumor left after surgery or if you need more help lowering growth hormone levels after taking medicine. It can help stop the tumor from growing and your body from making too much growth hormone. Types of radiation therapy include:
- Conventional radiation therapy. You get this type of radiation therapy every weekday for 4-6 weeks. It could take 10 or more years for you to recognize this type of therapy’s effect on your body.
- Proton beam therapy. This type of therapy will send a high dose of radiation directly to the tumor while avoiding the normal tissue. You’ll have several treatments, but the overall treatment time is usually less than conventional radiation therapy.
- Stereotactic radiosurgery. You’ll get one very high dose of radiation targeted to your tumor cells while avoiding the healthy tissue. This type of therapy could bring your GH levels back to normal in about 5 years.
Your experience with acromegaly will depend on how the condition has affected you. Work closely with your doctor so you understand your options and what you can expect as your treatment moves forward. Ask your doctor questions, and let them know how you're doing and what you're concerned about.
If you start acromegaly treatment early, you may not have any complications, or if you do, you can stop them from getting worse.
Complications can include:
- Cardiovascular disease (heart disease)
- Carpal tunnel syndrome
- Goiter (when your thyroid gland gets bigger)
- High blood pressure
- Osteoarthritis, a common form of arthritis
- Precancerous growths on your colon
- Sleep apnea, a sleep disorder where you might stop breathing
- Spinal cord compression
- Vision loss
It’s important to get treatment for acromegaly. Left untreated, you can die from it.
Getting Support for Acromegaly
When you get diagnosed with a condition like acromegaly, it can help to connect with other people who have it. Ask your doctor if there are local support groups, or consider joining an online support group. If you think it would be helpful to talk with a counselor, your doctor can give you a referral.
Let your family and friends know what they can do to support you. They'll want to help, but they may not know what to offer, so be specific about what you would find helpful.
To learn more about acromegaly, visit the acromegaly website of the Pituitary Network Association. You can get information there about joining a support group near you.
Read more on: a to z guides