Living with Isolated growth hormone deficiency type IB
An inherited hormone condition in which the body makes low amounts of growth hormone, causing short height and slower bone growth.
Understanding Isolated growth hormone deficiency type IB
People have low but still detectable levels of growth hormone. This can lead to being much shorter than typical and delayed bone growth, which an X-ray can show. It is seen in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Short stature
- Delayed bone growth (skeletal maturation)
- Low growth hormone level
- Poor response to growth hormone testing
- Small hands and feet (acromicria)
- Small penis (micropenis)
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.
- 3Consider genetic testing
Changes in GH1 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
Raymond A. Wood Foundation and 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: Raymond A. Wood Foundation, 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 Raymond A. Wood Foundation 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 GH1 gene or the GHRHR gene cause this disease. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: congenital ighd type ib; congenital isolated gh deficiency type ib; congenital isolated growth hormone deficiency type ib; dwarfism of sindh; growth hormone deficiency, isolated, type ib; ighd 1b
Patient organizations
- Raymond A. Wood FoundationIsolated growth hormone deficiency type IB · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Isolated growth hormone deficiency type IB.
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