Questions You May Have
Following Your Diagnosis
Andrea, living with HypoPara.
Compensated by Ascendis Pharmaceuticals.
A new diagnosis of HypoPara can be confusing and overwhelming. It is a rare condition that can take some time to learn about and live with. Below, we’ve provided some answers to common questions about this condition to help you further understand your diagnosis.
1. What is HypoPara?
Learn more about HypoPara >
2. What is the role of PTH in the body?
The parathyroid glands play a role in tightly controlling calcium levels in the blood through the release of PTH.
Below are some parts of the body where a PTH imbalance may cause an impact:
- PTH may have an effect on mental function
- PTH signals the kidneys to keep calcium in your body and helps them activate the vitamin D that works in the body
- PTH helps keep the balance of calcium in the blood and bones
- PTH activates vitamin D so it can help absorb calcium from food in the intestine
3. What are some signs of low calcium levels?
- Depression, anger, confusion or brain fog, seizures
- Abnormal heart rate, symptoms of congestive heart failure
- Abdominal cramps
- Shortness of breath, wheezing, throat tightness
- Numbness and a pins-and-needles feeling in fingers and toes, spasms, twitches, cramps
4. What are some signs of high calcium levels?
- Weakness, headache, drowsiness, confusion or disorientation, poor memory, reduced concentration
- Abnormal heart rate, high blood pressure
- Loss of appetite, nausea, vomiting, stomach pain, constipation
- Frequent urination, dry mouth, thirst
5. Why is seeing an endocrinologist important?
An endocrinologist is a doctor who specializes in the management of hormone-related diseases and conditions.
Read more tips on talking with your doctor about your diagnosis >
6. How should I monitor my HypoPara and why is it important?
- Monitor your HypoPara by keeping track of lab results and tracking your symptoms. To diagnose and monitor your HypoPara, your doctor will check your calcium levels, PTH levels, phosphate levels, and 24-hour urinary calcium excretion. It’s important to measure your symptoms because even those with "normal" lab values have reported low well-being. By tracking your lab values and symptoms, your doctor can more accurately determine the best treatment plan for you
7. Why is it important to share my diagnosis and symptoms with all of the healthcare professionals in my life?
- It’s important to share your diagnosis with your doctors including your gynecologist, cardiologist, nephrologist, pharmacist, nutritionist, and physical therapist/personal trainer because HypoPara can impact many different aspects of your life and well-being. Keep track of your symptoms and your diet and exercise to share with all of the healthcare professionals in your life
8. What are the treatment options for HypoPara?
- Active vitamin D and calcium are used to address calcium levels in the absence of PTH. Oral calcium directly addresses low calcium levels. Active vitamin D helps the absorption of calcium. Calcium levels should be measured regularly and dose adjustments may need to be made depending on calcium levels or symptoms
- It’s important to have regular conversations with your doctor about your treatment plan
9. Are there any long-term effects from calcium supplements?
- Calcium deposits can build up in the body, which can lead to complications over time. Possible complications include an increased risk of kidney stones, poor kidney function, or hospital stays due to seizures. Calcium build-up may also affect the brain, heart, eyes, kidneys, and blood vessels. It’s important to have regular conversations with your endocrinologist about how calcium is impacting you so adjustments can be made if needed
10. How can HypoPara impact well-being?
- HypoPara can have a significant impact on mental well-being, daily life, activities, and social life/relationships.
- Mental well-being: anxiety, frustration, depression, sadness
- Daily life: not able to do things you are used to doing or interference with work
- Activities: exercise, being active, mobility
- Social life/relationships: social activities, relationship with family and friends
11. What’s the best way to explain HypoPara to my friends and family?
- This FAQ is a great place to start if your friends and family want to learn more about HypoPara. This website also has plenty of valuable information and, if you join the email list, you can stay informed about updates on the site
- Consider sharing your diagnosis with close friends and family, coworkers, or those you are traveling with. This is a rare condition so not everyone will be aware of how your symptoms may impact you, which is why it’s important to share your symptoms and treatment plan with others in case of emergency
12. How can I help my loved ones understand the impact of HypoPara?
- HypoPara can appear as an invisible disease. It’s important that you advocate for yourself and talk about how you’re feeling. If you don’t feel up to a particular activity, let others know. It may take time for them to understand, but it’s important that you continue to care for yourself and address your needs
13. Where can I talk to other people living with HypoPara, or connect with organizations?
- Ask your endocrinologist about local support groups for HypoPara or reach out to HypoPara support groups on Instagram, Facebook, or Reddit. Connecting with other people online or in person can be a great resource for support since other people in your life may not be aware of or understand this rare disease
- The HypoPARAthyroidism Association hosts an international HypoPARAthyroidism conference every year. Their site also has resources on the disease, a calcium crisis card to download and use, etc. Their mission is to improve the lives of people impacted by hypoparathyroidism through education, support, research, and advocacy. See more here: https://hypopara.org/
- NORD and RareAction network have resources for finding centers of excellence, a rare disease database, patient assistance programs, and more. Their mission is to empower the rare disease community with a commitment to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. See more here: https://rarediseases.org/
HypoPara=hypoparathyroidism; PTH=parathyroid hormone.