Living with Hypogonadotropic hypogonadism 24 without anosmia
A hormone condition from a change in the FSHB gene, with delayed puberty and fertility problems.
Understanding Hypogonadotropic hypogonadism 24 without anosmia
The body does not make enough of the hormones that drive sexual development. It affects males and females. It is usually noticed in the teen years and adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Delayed puberty
- Small testicles
- No or delayed periods
- Low or no sperm count
- Low sex hormone levels
- Sparse armpit hair
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.
- 3Consider genetic testing
Changes in FSHB are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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 FSHB gene cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: follicle-stimulating hormone deficiency, isolated; fshb hypogonadotropic hypogonadism; hh24; hypogonadotropic hypogonadism 24 with or without anosmia; hypogonadotropic hypogonadism caused by mutation in fshb; isolated follicle stimulating hormone deficiency
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 Hypogonadotropic hypogonadism 24 without anosmia.
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