Rare Diseases Types What Is Acromegaly? By Julie Scott, MSN, ANP-BC, AOCNP Julie Scott, MSN, ANP-BC, AOCNP LinkedIn Oncology Certified Nurse Practitioner and freelance healthcare writer with over a decade of medical oncology and hematology experience. Learn about our editorial process Published on September 20, 2021 Medically reviewed by Lyndsey Garbi, MD Medically reviewed by Lyndsey Garbi, MD LinkedIn Lyndsey Garbi, MD, is a pediatrician who is double board-certified in pediatrics and neonatology. Learn about our Medical Expert Board Print Table of Contents View All Table of Contents Symptoms Acromegaly vs. Gigantism Causes Diagnosis Treatment Prognosis Coping Frequently Asked Questions Frequently Asked Questions Growth hormone (GH), is a hormone that is released from the pituitary gland, which is located at the base of the brain. GH plays an important role in the development and growth of many of the tissues and organs in the body. GH also causes the release of another hormone, insulin-like growth factor-1 (IGF-1), to be released from the liver. IGF-1 also can cause tissues and organs to grow. In a rare condition called acromegaly ( a-crow-meh-gull-ee), too much GH is released from the pituitary gland. This causes the body to continue to grow, leading to larger-than-average limbs, hands, feet, and skull. A diagnosis of acromegaly usually is made during middle-age adulthood but could occur at any age. In children, overproduction of GH is called gigantism. First named in 1886, acromegaly was given its name by a neurologist in France, Pierre Marie. However, health records show that acromegaly had been noted many years before that, dating back to the 1500s. This article will review the symptoms of acromegaly and gigantism, as well as the cause, how it is diagnosed, and how it is treated. jarun011 / iStock / Getty Images Plus Symptoms The symptoms of acromegaly can vary between individuals, but they center around changes in appearance. Face: Lips and tongue may become larger, as well as the nose. The voice may become deeper. Bones: Brow bones and jawbones in the skull grow larger and more pronounced, increased space between teeth can developSkin: Thickened skin can develop, and skin can become oily and coarse. Skin tags may be larger. Increased sweating and body odor may be noted. Extremities: Hands and feet become larger. Rings and shoes may no longer fit, and larger sizes are required. Acromegaly vs. Gigantism Children have epiphyseal growth plates on the end of their bones that allow the bones to continue to grow. If too much GH is produced before these epiphyseal plates close, gigantism can develop. Symptoms include: Excessive height and size for their age Vision problems, such as double vision Enlarged jaw or forehead Delay in start of puberty Sweating Headaches Weakness Thick fingers and toes Causes Acromegaly is caused by the pituitary gland releasing too much GH over a long period of time. The excess GH then causes other organs to release too much IGF-1. In addition to causing tissues to grow, excess IGF-1 can alter the way the body stores sugar and fat from the diet. The combination of high levels of both hormones causes acromegaly to develop. Determining why the pituitary gland is not functioning properly is an important step to help determine the treatment for acromegaly. The most common cause of this pituitary dysfunction is a tumor that grows in the pituitary gland. These tumors are often benign and are called pituitary adenomas. Getty Images Diagnosis Because the symptoms of acromegaly develop over the course of years, it can sometimes be difficult to diagnose. Diagnosing acromegaly requires the following: Patient history: Your healthcare provider will ask about your symptoms, medical history, and family history. Physical exam: During a physical, a healthcare provider will check over your body, focusing on the common characteristics that can be found with acromegaly, such as the change in facial features and limb size. Blood tests: Blood is drawn and tested in the lab for GH and IGF-1 levels Glucose tolerance test: During this test, you will be given a sugary drink, and then your blood sugar will be monitored over the course of a few hours. Imaging: Imaging tests such as magnetic resonance imaging (MRI) or computed tomography (CT) scan may be ordered to look at skeletal or organ changes or growth. These images can also see if a tumor is present in or near the pituitary gland. Echocardiogram: An ultrasound of the heart may be used to check for an enlarged heart, which can be a complication of acromegaly Sleep study: Your healthcare team may order this overnight night exam to evaluate if sleep apnea is present. Treatment Treating acromegaly is tailored to each individual and may consist of multiple therapies including surgery, radiation, and medications. Surgery A surgical procedure may be required if a pituitary tumor is found. This type of surgery is often performed through a transsphenoidal approach. During this type of surgery, an incision is made inside the nostrils to enter the sphenoid sinus, the hollow area under the brain. The pituitary gland and tumor can be accessed through this process. Symptoms of acromegaly should improve as GH levels return to normal. Radiation If surgery is not possible, or is not successful in removing the entire tumor, radiation therapy may be required. During radiation therapy, high-dose beams of X-rays are concentrated on the affected area through a special machine. These energy beams can kill the tumor and improve the symptoms of acromegaly. Medications There are a few medications available to treat acromegaly. One of the classes of medications is called somatostatin analogs. These are typically given through injection, and work by decreasing the amount of GH that is produced. Examples of these medications include Sandostatin (octreotide) and Etexane (somatostatin). Another type of medication, dopamine agonists, can be used to treat acromegaly. These work in a different way to reduce GH levels, but they are often not as effective at this as the somatostatin analogs are. On the plus side, these medications come in pill form and may be more convenient to take than an injection. A third class of medications to treat acromegaly is growth hormone-receptor antagonists. These medications work to block GH from causing high levels of IGF-1 to be released by the liver. These drugs are given as daily injections. Prognosis One of the biggest risks associated with acromegaly is that other conditions can develop from it, including high blood pressure, heart disease, sleep apnea, diabetes and colon polyps. If left untreated, acromegaly may decrease life expectancy. However, if it can be adequately treated and GH levels return to normal, life expectancy may not be decreased. Coping Living with acromegaly can potentially impact quality of life. As it is a rare disease, it may go undiagnosed for a period of time, and the physical changes associated with it may cause distress to some. Finding a good support system to talk with or to seek help from can be an invaluable resource to people living with acromegaly. A Word From Verywell A diagnosis of acromegaly for an adult or a diagnosis of gigantism in a child may lead to much distress and concern. It is important to remember to talk with your healthcare team to come up with a treatment plan, so that the symptoms of the disease can improve. Following up with your healthcare team in routine visits, lab tests, and imaging is important to monitor your progress and check for any recurrence after treatment. Never hesitate to reach out to your healthcare providers with any questions. Frequently Asked Questions Frequently Asked Questions Are the symptoms of acromegaly painful? There may be some painful or uncomfortable symptoms of acromegaly. Some of these symptoms may include headaches, joint pain, or bone pain. These are caused by the tissues and bones enlarging and pressing on nerves that then cause pain. What’s the difference between acromegaly and gigantism? Both acromegaly and gigantism are caused by the oversecretion of growth hormone and subsequently insulin-like growth factor 1. A diagnosis of gigantism is made in children who are still growing and have epiphyseal growth plates that have not yet closed. This means that children may grow much larger and much taller than would be expected. Acromegaly is diagnosed during adulthood, when the growth plates have closed. Do children with gigantism live normal lives? If gigantism is diagnosed and treated adequately, the effects of the excess GH production can improve, and life expectancy can be the same as it would have been without gigantism. However, if left untreated, it has the potential of causing complications with multiple organ systems, which could decrease life expectancy. Does acromegaly cause other health complications? Due to the overproduction of GH, acromegaly has the potential to lead to other health complications. These complications include:DiabetesHigh blood pressureHeart disease, heart failureSleep apneaWeaknessColon polyps 7 Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Brittanica. Growth hormone. National Institute of Diabetes and Digestive and Kidney Diseases. Acromegaly. de Herder WW. The history of acromegaly. Neuroendocrinology. 103(1):7-17. Genetic and Rare Diseases Information Center. Gigantism. Zahr R, Fleseriu M. Updates in diagnosis and treatment of acromegaly. Eur Endocrinol. 14(2):57-61. National Organization for Rare Disorders. Acromegaly. Adigun OO, Nguyen M, Fox TJ, Anastasopoulou C. Acromegaly. In: StatPearls. StatPearls Publishing. By Julie Scott, MSN, ANP-BC, AOCNP Julie is an Adult Nurse Practitioner with oncology certification and a healthcare freelance writer with an interest in educating patients and the healthcare community. See Our Editorial Process Meet Our Medical Expert Board Share Feedback Was this page helpful? Thanks for your feedback! What is your feedback? Other Helpful Report an Error Submit