Living with Isolated congenital hypogonadotropic hypogonadism
A rare genetic hormone condition in which the body makes too little of the hormones that start puberty and support fertility.
Understanding Isolated congenital hypogonadotropic hypogonadism
The pituitary gland does not make enough of the hormones FSH and LH (gonadotropins), so sex hormone levels are low. Some people have a normal sense of smell. Others have a reduced sense of smell, which is called Kallmann syndrome. It can be found at a variety of ages. It involves the hormone system and the reproductive system.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these features:
- Low levels of FSH and LH hormones
- Low sex hormone levels
- Normal or reduced sense of smell
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 genes cause this condition. GARD lists autosomal dominant, autosomal recessive, and X-linked inheritance, so it can be passed down in different ways.
Also known as: idiopathic hypogonadotropic hypogonadism; isolated congenital gonadotropin deficiency; isolated gonadotropin-releasing hormone deficiency; nonsyndromic congenital hypogonadotropic hypogonadism
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 Isolated congenital hypogonadotropic hypogonadism.
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