Living with Non-acquired combined pituitary hormone deficiency
A group of genetic conditions in which the pituitary gland doesn't make enough of several hormones, affecting growth and puberty.
Understanding Non-acquired combined pituitary hormone deficiency
It is an endocrine (hormone) condition. The pituitary gland may not develop or work normally, causing low levels of hormones for growth, metabolism, breastmilk production, stress response, and reproduction. It can also affect thinking and delay puberty. Symptoms can begin at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on its summary, features may include:
- Low levels of growth hormone
- Slowed metabolism
- Delayed puberty
- Differences in thinking (cognitive differences)
- Low levels of reproductive hormones
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 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
Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: 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 Pituitary Network Association
- 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 PROP1, POU1F1, HESX1, LHX3, or LHX4 genes can cause it. It is inherited, and whether one or both parents pass on the changed gene depends on which gene is affected.
Also known as: congenital combined pituitary hormone deficiency; congenital hypopituitarism
Patient organizations
- Pituitary Network AssociationPituitary deficiencies · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Non-acquired combined pituitary hormone deficiency.
Explore research for Non-acquired combined pituitary hormone deficiency
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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