Newly Diagnosed with HP?
A hypoparathyroidism diagnosis can feel overwhelming. This page is your starting point — curated resources, first steps, and a community ready to support you.
"You are not alone on this journey. Anything is possible!" — Bari Vapnek
If you are experiencing a calcium crash emergency:
Severe muscle cramps, numbness, tingling, or seizures may indicate dangerously low calcium. Go to the ER immediately and tell them you have hypoparathyroidism and need IV calcium gluconate.
Your First 6 Steps
Understand Your Diagnosis
Hypoparathyroidism (HP) means your parathyroid glands don't produce enough parathyroid hormone (PTH), causing low blood calcium (hypocalcemia). It is manageable — and you are not alone.
Find an Endocrinologist
Ask your doctor for a referral to an endocrinologist experienced with HP. Bring your lab results and a list of symptoms to every appointment.
Know Your Key Labs
Your most important labs are: serum calcium (total & ionized), PTH, phosphorus, magnesium, vitamin D (25-OH), and urine calcium. Track them over time.
Start a Symptom Journal
Log your symptoms daily — tingling, muscle cramps, brain fog, fatigue. This helps your doctor adjust your treatment and helps you spot patterns.
Learn About Calcium Crashes
A calcium crash is a sudden drop in blood calcium that can cause severe symptoms. Know the warning signs and have a plan with your doctor.
Connect with the Community
You don't have to figure this out alone. Join the Butterfly Buddies program to connect with an experienced HP patient who can guide and support you.
Quick Tips to Remember
Resources by Topic
What is Hypoparathyroidism?
Bari's comprehensive FAQ covering diagnosis, symptoms, and treatment
Hypoparathyroidism Association
The leading patient advocacy organization for HP
Hormone Health Network
Endocrine Society's patient guide to HP
NORD – Rare Disease Database
National Organization for Rare Disorders HP overview
Connect with a Butterfly Buddy
A Butterfly Buddy is an experienced HP patient who has been through what you're going through and wants to help. Request a buddy to get one-on-one peer support from someone who truly understands.
Your Story Matters
One day — when you're ready — your story could be the thing that helps another newly diagnosed patient feel less alone. The HP community grows stronger every time someone speaks up.
The Faces of Hypopara gallery is a place to share your journey: the wins, the hard days, the moments of hope. Photos, words, or both — every story is welcome.
🌟 A Win
"My calcium was stable for 3 months straight. I cried happy tears at the lab."
💜 A Hard Day
"I couldn't get out of bed. The tingling was unbearable. But I got through it."
🦋 A Moment of Hope
"I found this community and realized I wasn't alone. That changed everything."