What Is Acromegaly?
There are treatments for acromegaly, and every case is different. In most cases, it might be years before you notice symptoms.
Most people who get acromegaly are middle-aged. Children can have problems with too much growth hormone, but that's a different condition called gigantism.
The most common cause is a pituitary adenoma, a noncancerous tumor that makes growth hormone from your pituitary gland. The pituitary gland is in the skull, just below the brain. It is part of your endocrine, or hormone system. 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 high levels of growth hormone. That leads to higher levels of another hormone, called insulin-like growth hormone, which causes the symptoms you see.
Changes happen slowly, sometimes over years. First, your hands and feet usually start to swell. 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 larger, swollen, 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
- High blood pressure
- Heart disease
- Thickening skin with skin tags
- Sweating a lot with oily skin
- 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
Getting a Diagnosis
The sooner your acromegaly is diagnosed, the better. When you go to see your doctor, he'll ask you questions like these:
- Why did you come to see me today?
- 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 do blood tests to see if your growth hormone levels are high.
Your growth hormone levels can change from minute to minute or day to day. So you'll probably get several blood tests.
After excess growth hormone is identified, you will have an MRI that will help your doctor see if a tumor is growing in the pituitary gland.
Questions for Your Doctor
When you find out you have acromegaly, you've probably got 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 vital areas, especially if they are pressing on nerves that impair 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 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 growth hormone levels back to normal:
- Somatostatin analogs (lanreotide or octreotide)
- 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 reducing growth hormone levels after taking medicine. It can help stop the tumor from growing and your body from making too much growth hormone.
Taking Care of Yourself
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.
What to Expect
Your particular 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.
To learn more about acromegaly, visit the Acromegaly web site of the Pituitary Network Association. You can get information there about joining a support group near you.