Living with Sheehan syndrome
A hormone condition in which the pituitary gland stops working well after severe blood loss during or after childbirth.
Understanding Sheehan syndrome
Severe blood loss during or after childbirth (postpartum hemorrhage) cuts blood flow to the front of the pituitary gland, so it gradually stops working. Symptoms come from low hormone levels. They may include no breast milk, irregular or absent periods, hot flashes and lower sex drive. Diagnosis uses symptoms, history, an exam, lab tests and imaging.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Absent or infrequent periods
- Ongoing tiredness
- Headache
- Blurred vision
- Dizziness when standing up
- Low cortisol (adrenal insufficiency)
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
GARD says the cause is severe blood loss during or after childbirth, which cuts blood flow to the front of the pituitary gland. It doesn't list a gene.
Also known as: postpartum hypopituitarism; postpartum pituitary necrosis; sheehan's syndrome
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 Sheehan syndrome.
Explore research for Sheehan syndrome
Explore actively recruiting Sheehan syndrome studies with HealthSpark.
Find actively recruiting studies for Sheehan syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Sheehan syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Sheehan syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Sheehan syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.