Living with Familial isolated pituitary adenoma
An inherited condition in which noncancerous tumors grow in the pituitary gland at the base of the brain.
Understanding Familial isolated pituitary adenoma
The pituitary gland makes hormones that control many body functions. Some tumors release extra hormones, and some do not. Prolactinomas are the most common, and growth hormone tumors are also common. Effects depend on the hormone and can include menstrual changes, vision problems, or extra growth in height or in the hands, feet and face.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary says effects depend on which hormone the tumor makes:
- Changes in the menstrual cycle
- Trouble becoming pregnant
- Breast milk without pregnancy
- Less interest in sex or erectile problems
- Vision problems from a large tumor
- Extra growth (gigantism or acromegaly)
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.
- 3Consider genetic testing
Changes in AIP are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Raymond A. Wood Foundation 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: Raymond A. Wood Foundation, 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 Raymond A. Wood Foundation 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
Changes in the AIP gene cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: fipa
Patient organizations
- Raymond A. Wood FoundationFamilial isolated pituitary adenoma · United States
- International Neuroendocrine Cancer AllianceFamilial isolated pituitary adenoma · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial isolated pituitary adenoma.
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