What to Do If You Have Acromegaly: Understanding Causes, Diagnosis, and Next Steps

Acromegaly is a rare but serious hormonal disorder that occurs when the body produces too much growth hormone (GH), typically over a long period. This condition leads to abnormal growth of body tissues, especially in the hands, feet, and face. While it may develop slowly, early detection and proper management are crucial to prevent complications such as diabetes, high blood pressure, heart disease, and arthritis.

Primary Causes of Acromegaly

In the vast majority of cases—about 98%—acromegaly is caused by a benign tumor known as a pituitary adenoma. This noncancerous growth develops in the pituitary gland, located at the base of the brain, and secretes excessive amounts of growth hormone. Although the tumor is not malignant, its effects on the body can be profound due to hormonal imbalance.

Less Common Causes: Non-Pituitary Tumors

In approximately 2% of patients, acromegaly stems from tumors located outside the pituitary gland. These growths can occur in areas such as the pancreas, lungs, or adrenal glands, and they either secrete growth hormone directly or produce growth hormone-releasing hormone (GHRH), which stimulates the pituitary to overproduce GH. These ectopic tumors require different diagnostic approaches and treatment strategies compared to pituitary-based causes.

Diagnostic Procedures for Accurate Identification

Pinpointing the underlying cause is essential for effective treatment. Doctors use a combination of blood tests and advanced imaging techniques to confirm acromegaly and determine its origin.

1. Growth Hormone Suppression Test (Oral Glucose Tolerance Test)

This is one of the most reliable diagnostic tools. During the test, the patient drinks a glucose solution, and blood samples are taken at intervals. In healthy individuals, glucose intake suppresses GH levels. However, in people with acromegaly, GH levels remain high despite glucose consumption, confirming the diagnosis.

2. IGF-1 and Anterior Pituitary Hormone Levels

Insulin-like Growth Factor 1 (IGF-1) is produced in the liver in response to GH and reflects long-term GH activity. Elevated IGF-1 levels strongly support an acromegaly diagnosis. Additionally, doctors assess other anterior pituitary hormones to evaluate overall gland function and detect any imbalances that might affect treatment planning.

3. Enhanced MRI of the Pituitary Region

Magnetic Resonance Imaging (MRI) with contrast enhancement provides detailed images of the pituitary gland and surrounding structures. It helps identify the size, location, and characteristics of pituitary adenomas. For patients where no pituitary tumor is found or if an ectopic source is suspected, further investigation is necessary.

4. Octreotide Scan (Radionuclide Imaging)

When standard imaging fails to locate the tumor, an octreotide scan may be performed. This nuclear medicine test uses a radioactive tracer that binds to somatostatin receptors, commonly found on neuroendocrine tumors. It's particularly useful in detecting ectopic tumors in the chest, abdomen, or elsewhere in the body.

Early and accurate diagnosis sets the foundation for successful treatment, which may include surgery, medication, or radiation therapy. If you suspect symptoms like enlarged hands or feet, facial changes, joint pain, or deepening of the voice, consult an endocrinologist promptly. With modern medicine, acromegaly can be managed effectively, allowing patients to lead healthier, more comfortable lives.