Living with Panhypopituitarism
A rare genetic condition in which the pituitary gland doesn't make enough of its hormones, affecting growth, puberty, and energy.
Understanding Panhypopituitarism
The pituitary is a small gland that controls many hormones. This can lead to low thyroid function, delayed or missing puberty, slow growth and short height, and low adrenal hormones. Signs usually develop gradually, and loss of the hormones is often one at a time. It can begin at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Short height and slow growth
- Tiredness (fatigue)
- Low thyroid hormone levels
- Missing periods (amenorrhea)
- Small testes or delayed puberty
- Low blood pressure
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, hormone specialists, maternal-fetal medicine specialists and urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Resolve: The National Infertility Association and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Maternal-fetal medicine specialists (pregnancy-related); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: 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 Resolve: The National Infertility Association 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 genes (also called variants) cause this condition. It can be inherited in an autosomal recessive way or an X-linked way. GARD doesn't list a specific gene.
Also known as: complete hypopituitarism; deficient secretion of all pituitary hormones; genetic panhypopituitarism; non-acquired panhypopituitarism; primary hypopituitarism; simmond's disease
Patient organizations
- 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 Panhypopituitarism.
Explore research for Panhypopituitarism
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