FAQs
Common questions
about HypoPARA
About chronic HypoPARA
Chronic HypoPARA, short for chronic HypoPARAthyroidism, is a rare condition where you have low or missing PTH (PARAthyroid hormone) that requires ongoing management. HypoPARA is considered “chronic” when a person has had low or missing PTH and low calcium for 12 months or more.
PTH is essential for regulating calcium and phosphate levels, and when these levels are too high or too low, the body can’t perform certain functions.
The cause of low or missing PTH in chronic HypoPARA can vary from person to person.
Surgery
This happens when the PARAthyroid glands are damaged or removed during surgery. This is the most common cause of chronic HypoPARA.
Genetics
Some genetic causes of chronic HypoPARA include:
- Autosomal dominant hypocalcemia type 1 (ADH1)
- Autoimmune polyglandular syndrome type 1 (APS-1) or autoimmune polyendocrinopathy candidiasis ectodermal dystrophy (APECED)
- DiGeorge syndrome
- HypoPARAthyroidism, sensorineural deafness, and renal dysplasia (HDR) syndrome or Barakat syndrome
Autoimmune conditions
Certain autoimmune conditions can cause the immune system to mistakenly attack and damage the PARAthyroid glands.
Unknown cause
Also called “idiopathic,” this means chronic HypoPARA began without a known cause.
About PTH
The body needs specific amounts of calcium and phosphate to balance certain functions and work normally. PTH regulates calcium and phosphate levels, but when there isn’t enough, the body can’t perform these functions.
Here’s how PTH keeps the body functioning:
PTH signals the bones to release stored calcium when calcium is low.
PTH signals the kidneys to keep calcium in your body when calcium is low.
PTH signals the kidneys to produce active vitamin D. This helps the body absorb calcium in the intestines from food.
Chronic HypoPARA and its symptoms can have an impact on many areas of life, including on your physical, mental, emotional, and social well-being. Many people find they are unable to do as many things around the house or exercise the same way, and some feel anxious or depressed. Dealing with chronic HypoPARA can feel overwhelming, but you are not alone.
Monitoring and management
Managing chronic HypoPARA is a team effort between you and your doctor:
Your doctor may track some key numbers, which could include your blood calcium, PTH levels, bone density, kidney function, and phosphate levels, along with a 24-hour urine calcium test.
Your doctor will routinely check your calcium levels. Here are a few of the tests they may use:
Serum calcium
Your doctor will take a single tube of blood to see how much calcium is present.
Ionized calcium
This is also tested using a blood sample and measures the free unbound calcium in your blood. This test may be useful if your serum calcium results don’t explain the symptoms you’re feeling.
Serum albumin
This blood test may be ordered if you are not having an ionized calcium test. It measures the amount of albumin—the protein that binds calcium—in the blood.
24-hour urine calcium
This measures the amount of calcium your body excretes through urine over 24 hours.
Additional tests
Your doctor may test your blood for the amount of magnesium and phosphorus present, as both these levels may impact your calcium levels. Your doctor may also test your PTH levels.
Low or missing PTH from chronic HypoPARA means the body can't regulate calcium, causing calcium levels to drop.
Warning signs of low calcium:
Depression, anger, confusion or brain fog, seizures
Abnormal heart rate
Twitches, spasms, cramps, numbness, and a pins-and-needles feeling in fingers and toes; shortness of breath, wheezing, or throat tightness
Warning signs of high calcium:
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
It’s important to have an open and clear conversation about your symptoms with your doctor. If you struggle to remember the symptoms you experience between doctor’s appointments, it’s helpful to write them down to track how they progress over time.
Take the to get a better understanding of how symptoms are really impacting your life, and get tips on how to talk to your doctor about what you need.