What does an acromegaly diagnosis mean?

If you suspect you have acromegaly, finding the right specialist is key to getting an accurate diagnosis and starting appropriate care. Here’s how you can take the next step:

Seek an Endocrinologist
Acromegaly is caused by hormonal changes, typically linked to the pituitary gland. Endocrinologists specialize in these conditions, and are best equipped to evaluate and diagnose.

Ask for Referrals
Start by speaking with your primary care physician. They can recommend an experienced endocrinologist or pituitary specialist in your area.

Look for Expertise
Search for specialists with experience in treating pituitary disorders. Medical centers with pituitary programs often have the latest diagnostic tools and treatments.

Prepare for Your Appointment
Keep a record of your symptoms, such as changes in appearance, joint pain, or fatigue. These details help the specialist understand your experience and determine the next steps.

Taking action now can help you get answers and start managing your health.
You’re not alone—specialists can help.

Online Physician Directories

There are a number of online resources that provide directories which will allow you to search for endocrinologists by location and subspecialty. Options include:

Make sure to confirm the endocrinologist you choose has experience in treating pituitary disorders, like acromegaly.

After gathering the details of your medical history and performing a physical exam to assess your symptoms, your endocrinologist will order blood tests and imaging scans. These two types of testing are the primary methods used to diagnose acromegaly:

Blood test

GOAL: Measure IGF-1
Because growth hormone (GH) levels change throughout the day under normal conditions, a high IGF-1 level is the more reliable sign of acromegaly as IGF-1 levels will stay steady.

Imaging test

GOAL: Confirm presence, size, and location of the pituitary tumor
You will have an MRI (magnetic resonance imaging) or CT (computed tomography) scan to confirm that you have a pituitary tumor. Rarely, acromegaly is caused by a tumor in another part of the brain or body. Your endocrinologist needs to know where the tumor is located, its type, and how big it is to decide on next steps.

What else might you expect?

Your endocrinologist may also recommend additional tests to measure:

• Growth hormone (GH) levels
• How your body responds to sugar (oral glucose tolerance test)

Your endocrinologist evaluates the results of these tests to determine if you have acromegaly. Although receiving a diagnosis can be unsettling, knowing there are treatment options can be encouraging as you face living with this disorder.

Simply put, “remission” is the goal of your acromegaly treatment. It means that IGF-1 levels are in a normal range. Treatment may include surgery, medical therapy, or radiotherapy, or a combination of any of those. Your endocrinologist will discuss these options with you:

Surgery to remove the pituitary tumor
This type of surgery is called transsphenoidal (trans-fuh-noid-al) surgery, and it’s usually the first treatment recommendation. The goal of removing the tumor is to help stop the pituitary gland from releasing too much GH and producing too much IGF-1. The purpose is to get those hormonal levels down to a normal range.

It’s natural to be nervous about surgery. Be sure to talk with your endocrinologist about what to expect during the procedure, as well as the recovery period. Being prepared may help you feel less nervous.

Medical therapy with prescription medication
If surgery isn’t successful, medical therapy is typically the next recommendation. The goal of taking prescription medication is to keep IGF-1 levels in the normal range, thus relieving the symptoms of acromegaly.

Radiotherapy as treatment
Radiotherapy is a treatment for acromegaly that uses radiation to destroy tumor cells and reduce growth hormone levels. It’s used for patients whose acromegaly has not been controlled through surgery and who are not responding to medical therapy.

Somatostatin analogues, also known as SSAs, are medicines that act like the natural hormones your body makes. They work by suppressing GH secretion from the pituitary gland.

Dopamine receptor agonists work indirectly in acromegaly by stimulating dopamine receptors in the brain, which inhibit GH secretion from the pituitary gland. Dopamine is a hormone and neurotransmitter that plays a role in many bodily functions.

GH receptor antagonists lower IGF-1 levels by blocking the action of GH that produces IGF-1 in the body.

Did you know?

Studies have shown that SSAs are effective in reducing GH secretion.
There are two types of SSA's, first-generation and second-generation. Second-generation SSA's work differently from first-generation SSA's.