Living with Familial hypocalciuric hypercalcemia
An inherited condition with high calcium in the blood and low calcium in the urine, often found by chance on blood tests.
Understanding Familial hypocalciuric hypercalcemia
Most people with FHH have no symptoms. It is often found by chance during routine bloodwork. Some people report weakness, tiredness, trouble concentrating, or strong thirst. Rarely, people have inflammation of the pancreas (pancreatitis) or calcium buildup in the joints (chondrocalcinosis).
Signs & symptoms
Many people have no symptoms. GARD lists these among the findings that can occur:
- Softening of the bones (osteomalacia)
- Weakness and tiredness
- Trouble concentrating
- Excessive thirst (polydipsia)
- Calcium deposits in the joints
- Headache
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 bone and joint specialists, genetic specialists, hormone specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
HypoPARAthyroidism Association, Inc. may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: HypoPARAthyroidism Association, Inc.
- 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 HypoPARAthyroidism Association, Inc.
- 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
FHH is divided into three types by gene: CASR (type 1), GNA11 (type 2) and AP2S1 (type 3), each passed down in an autosomal dominant way. Rarely, the immune system makes antibodies that attack the calcium-sensing protein, and no gene change is known for that form.
Also known as: familial benign hypercalcemia; familial benign hypocalciuric hypercalcemia; fbh; fbhh; fhh; fhh - familial hypocalciuric hypercalcemia
Patient organizations
- HypoPARAthyroidism Association, Inc.Familial hypocalciuric hypercalcemia · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial hypocalciuric hypercalcemia.
Explore research for Familial hypocalciuric hypercalcemia
Explore actively recruiting Familial hypocalciuric hypercalcemia studies with HealthSpark.
Find actively recruiting studies for Familial hypocalciuric hypercalcemia 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 Familial hypocalciuric hypercalcemia 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 Familial hypocalciuric hypercalcemia
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 Familial hypocalciuric hypercalcemia 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.