Image of a person with acromegaly comparing size of hands with a child.
Patient Resources

Acromegaly

January 25, 2022

Acromegaly is a rare but serious condition caused by too much growth hormone (GH) in the blood. Acromegaly in adults occurs mainly in middle-aged men and women. Acromegaly is usually caused by a non-cancerous tumor in the pituitary gland called a pituitary adenoma. The tumor produces too much GH and raises the level of GH in the blood. Too much GH also raises the level of insulin-like growth factor-1 (IGF-1), a hormone produced in the liver that also promotes growth. Acromegaly is rarely caused by hormone-producing tumors in other parts of the body.

Endocrine Connection 

Growth hormone (GH) is released into the bloodstream by the pituitary gland, which is located at the base of the brain. Blood carries GH to other parts of the body where it has specific effects. In children, GH stimulates growth and development. In adults, GH affects energy levels, muscle strength, bone health, and one's sense of well-being. Too much GH in children is called gigantism and is extremely rare.  

GH helps children grow taller (also called linear growth), increases muscle mass, and decreases body fat. In both children and adults, GH also helps control the body’s metabolism—the process by which cells change food into energy and make other substances that the body needs. Growth hormone deficiency (too little GH) and some other health problems can be treated with synthetic (manufactured) GH. Sometimes GH is used illegally for non-medical purposes. 

GH is available only by prescription and is injected. Synthetic GH seems to be safe and effective when used as prescribed for the FDA-approved conditions. 

In children, GH is used to treat: 

  • Growth hormone deficiency 
  • Conditions that cause short stature (being shorter than children of the same age), such as chronic kidney disease, Turner syndrome, and Prader-Willi syndrome 

In adults, GH is used to treat: 

  • Growth hormone deficiency
  • Muscle wasting (loss of muscle tissue) from HIV 
  • Short bowel syndrome  

If acromegaly is suspected, an endocrinologist will recommend a blood test to check the level of IGF-1. High IGF-1 levels can mean that the levels of GH are also high. Another way to diagnose acromegaly is with an oral glucose tolerance test. In this test, GH levels in the blood are measured after you drink sugar water. Normally, the sugar water will make the pituitary gland stop producing GH and blood levels drop. However, a GH-producing pituitary tumor will not stop making GH, so the levels of GH in the blood will not change significantly.

A person with acromegaly usually has large hands and feet, thick lips, coarse facial features, a jutting forehead and jaw, and widely spaced teeth. Often people with acromegaly sweat a lot. 

Other signs and symptoms fall into three categories, depending on the underlying causes. Symptoms can be caused by high GH levels, hypopituitarism (pituitary hormone deficiency caused by tumor damage to the pituitary), or by tumor volume effects (when the tumor is large enough to compress surrounding brain structures). 

Caused by high GH levels: 

  • Numbness or burning of the hands or feet 
  • Carpal tunnel syndrome 
  • High blood glucose (sugar) 
  • Heart failure or enlarged heart 
  • High blood pressure (hypertension) 
  • Arthritis 
  • Goiter (enlarged thyroid gland) 
  • Sleep apnea (breathing repeatedly stops and starts during sleep) 
  • Tiredness 
  • Colon polyps 

Caused by hypopituitarism: 

  • Menstrual disorders (irregular bleeding; absence of periods) 
  • Lower sexual desire 
  • Tiredness 
  • Loss of appetite and weight loss 
  • Feeling cold 
    Constipation 

Caused by tumor volume: 

  • Headaches 
  • Vision problems (tunnel vision; vision loss)  

 

Acromegaly requires expert care. Too much GH and IGF-1 in the blood lower both your quality of life and how long you might live. The main goal of treatment is to lower GH and IGF-1 levels to normal. Treatment may be surgery, radiation therapy, medication, or a combination of these options. 

If the cause of acromegaly is a pituitary tumor, surgery to remove the tumor is the first treatment. Complete removal of some tumors is difficult and other types of therapy are often needed to reach normal GH and IGF-1 levels. If your GH level isn't normal after surgery, or if you aren't a candidate for surgery, then radiation therapy and medication are also options. Radiation therapy can take a long time to bring GH levels down to normal. Medication may be needed until the radiation therapy takes effect. 

Drugs are also available to treat acromegaly, but they are not a cure. If surgery or radiation does not lower your GH levels, you'll probably need to continue medications. The most effective medications for acromegaly are somatostatin analogs and a GH receptor antagonist. Another type of medication (dopamine agonists) works for some but not most patients. Some patients may benefit from a combination of these medicines. 

  • What are my treatment options? 
  • What are the advantages and disadvantages of each of my treatment options? 
  • Should I see an endocrinologist for my condition? 
  • How often should I have checkups? 
  • What else can I do to stay healthy? 

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