Living with Central diabetes insipidus
A condition in which low levels of a hormone cause a lot of urination and extreme thirst.
Understanding Central diabetes insipidus
This hormone tells the kidneys to make less urine. Main symptoms are passing too much urine, getting up at night to urinate, and drinking too much. Damage to the pituitary gland can cause it, including from other diseases, head injury, neurosurgery, or genetic disorders. It can start in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Passing too much urine (polyuria)
- Getting up at night to urinate (nocturia)
- Extreme thirst (polydipsia)
- Dehydration
- Poor weight gain (failure to thrive)
- Daytime sleepiness
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
Damage to the pituitary gland causes it. This can come from other diseases, head injuries, neurosurgery, or genetic disorders. Some forms are inherited in autosomal dominant, autosomal recessive, or X-linked ways.
Also known as: arginine vasopressin deficiency; avp-d - arginine vasopressin deficiency; cdi; cranial diabetes insipidus; diabetes insipidus - pituitary; neurogenic diabetes insipidus
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 Central diabetes insipidus.
Explore research for Central diabetes insipidus
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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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