Overview
Familial hyperprolactinemia is a rare inherited condition in which the body produces too much of a hormone called prolactin. Prolactin is made by the pituitary gland, a small gland at the base of the brain. Normally, prolactin plays a role in breast milk production, but when levels are too high — a state called hyperprolactinemia — it can cause a range of problems in both men and women. In this familial (inherited) form, the condition runs in families, meaning it is passed down from parent to child through changes in certain genes. In women, high prolactin levels can lead to irregular or absent menstrual periods, unexpected breast milk production (called galactorrhea), difficulty getting pregnant, and reduced sex drive. In men, symptoms may include decreased libido, erectile dysfunction, breast enlargement, and in some cases, breast milk production. Over time, if left untreated, persistently high prolactin can contribute to weakened bones (osteoporosis) and may affect emotional well-being. The condition is typically managed with medications called dopamine agonists, such as cabergoline or bromocriptine, which work by lowering prolactin levels. These medications are effective for most patients and can restore normal hormone function, fertility, and quality of life. Because this is a familial condition, genetic counseling is recommended for affected families. Regular monitoring of prolactin levels and pituitary imaging may be needed to guide treatment over time.
Also known as:
Key symptoms:
Irregular or absent menstrual periods in womenUnexpected breast milk production (in women or men)Difficulty getting pregnant or infertilityLow sex driveErectile dysfunction in menBreast enlargement in menHeadachesWeakened bones (osteoporosis) over timeMood changes or depressionFatigueVision changes if a pituitary growth is present
Clinical phenotype terms (9)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Familial hyperprolactinemia.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Familial hyperprolactinemia at this time.
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Specialists
View all specialists →No specialists are currently listed for Familial hyperprolactinemia.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Familial hyperprolactinemia.
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Start the conversation →Latest news about Familial hyperprolactinemia
Disease timeline:
New trial: Stockholm hyperTRIglyceridemia REGister (STRIREG) Study
Phase NA trial recruiting. Heredity for cardiovascular disease
Caregiver Resources
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is my high prolactin level caused by a genetic change, and should my family members be tested?,What medication do you recommend, and what side effects should I watch for?,Will this condition affect my ability to have children, and what can be done to help?,How often will I need blood tests and imaging to monitor my condition?,Should I be concerned about bone health, and do I need a bone density scan?,Is this something I will need to take medication for my entire life?,Are there any new treatments or clinical trials I should know about?
Common questions about Familial hyperprolactinemia
What is Familial hyperprolactinemia?
Familial hyperprolactinemia is a rare inherited condition in which the body produces too much of a hormone called prolactin. Prolactin is made by the pituitary gland, a small gland at the base of the brain. Normally, prolactin plays a role in breast milk production, but when levels are too high — a state called hyperprolactinemia — it can cause a range of problems in both men and women. In this familial (inherited) form, the condition runs in families, meaning it is passed down from parent to child through changes in certain genes. In women, high prolactin levels can lead to irregular or abse
How is Familial hyperprolactinemia inherited?
Familial hyperprolactinemia follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.