Living with Acromegaly
A hormone condition in which the pituitary gland makes too much growth hormone, causing growth of the hands, feet, and face.
Understanding Acromegaly
It is most often diagnosed in middle-aged adults, though symptoms can appear at any age. Signs include growth and swelling of the hands and feet, bone changes that alter the face, arthritis, and carpal tunnel syndrome. It is usually caused by benign pituitary tumors called adenomas. When GH-producing tumors occur in childhood, the condition is called gigantism.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Growth and swelling of the hands and feet
- Coarse facial features
- Large lower jaw and large tongue
- Insulin resistance
- Joint disease (osteoarthritis)
- Carpal tunnel syndrome
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Global Autoimmune Institute, Resolve: The National Infertility Association and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Global Autoimmune Institute, Resolve: The National Infertility Association, Pituitary Network Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Global Autoimmune Institute and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is usually caused by benign tumors of the pituitary called adenomas. It may also be part of genetic syndromes such as MEN1, McCune-Albright syndrome, or Carney complex.
Also known as: acromegalia; anterior pituitary adenoma syndrome; growth hormone hypersecretion syndrome; marie disease; pituitary giant; sth hypersecretion syndrome
Patient organizations
- Global Autoimmune InstituteAcromegaly · United States
- Acromegaly CommunityAcromegaly · United States
- Resolve: The National Infertility AssociationInfertility · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Acromegaly.
Explore research for Acromegaly
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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