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Rare Disease Day 2015

What Is Hypoparathyroidism?

Hypoparathyroidism (hypoPARA) is a rare, complex condition in which your parathyroid glands are either absent or damaged and cannot produce any or sufficient amounts of parathyroid hormone, also known as PTH.1 The full name of the hormone is PTH(1-84), which is what you will see in the scientific literature. "Hypo" means "less than normal." So the term "hypoparathyroidism" means literally "deficiency of parathyroid hormone."

Diagram of Parathyroid Hormone

Why does it affect the calcium in your body? Because PTH plays a central role in regulating the calcium and phosphorus in your body, people with hypoparathyroidism are at risk for hypocalcemia (low blood calcium) and other chemical imbalances that must be carefully managed to help reduce the risk of serious short- and long-term health problems.1,2 Understanding the disorder can help you better manage it.

What Hypoparathyroidism Is Not

Hypoparathyroidism is often confused with hyperparathyroidism and hypothyroidism, because the names are very similar. Abbreviations for these disorders can be confusing, too. That’s why we recommend using the abbreviation "hypoPARA" to distinguish hypoparathyroidism from other disorders. You will see a variety of other abbreviations (HPTH, HPT, HP), but these are also used for the other diseases, so we recommend "hypoPARA."

For close to 30 years, I have seen multiple doctors about my condition. While they claimed to have treated numerous patients with hypoparathyroidism, I never met one of these other patients … Many times, I felt alone and isolated.searching for hypoparathyroidism support


Parathyroid Glands—Small but Important

Location of parathyroid glands

The parathyroid glands are small pea-sized glands located on the back of your thyroid gland. There are normally four parathyroid glands, but some people may have more or fewer. PTH, produced by these glands, affects many different systems in your body. When PTH is released in adequate levels, it works with vitamin D and calcitonin to maintain calcium and phosphorous levels in your blood through specific activity in your bowel, kidneys and bones.3

Having the right amount of calcium in your blood is essential to proper functioning of many organs and systems: the heart, nervous system, kidneys, bones and teeth. So, people with hypoparathyroidism, who lack adequate PTH, may experience muscle problems, bone damage, kidney damage, heart problems, cognitive issues and emotional swings.2,3

Watch a video that explains this complex disorder.

hypoparathyroidism mechanism of disease animation

Symptoms of Hypoparathyroidism

Patients with hypoparathyroidism have low levels of calcium, which leads to symptoms including:

  • Tingling or burning in fingers, toes and lips
  • Facial numbness or twitching
  • Muscle spasms
  • Tetany 
  • Weakness
  • Brittle nails
  • Headaches

Many people also describe personality changes and emotional symptoms, such as depression, memory problems, nervousness and anxiety.1,3

Some people may experience severe complications, including seizures, kidney stones or kidney disease, heart rhythm disturbances and abnormal bone formation.1,3 Learn about symptoms, including implications for diagnosis and treatment.

Causes of Hypoparathyroidism

The most common cause of hypoparathyroidism is inadvertent or unavoidable damage to or removal of the parathyroid glands during neck surgery. Less often, hypoparathyroidism may result from an autoimmune disease or a genetic disorder, or from reaction to low or high levels of some minerals.1 Read more about the causes of hypoparathyroidism.

Managing Hypoparathyroidism

Doctors try to manage the disorder by keeping blood calcium levels balanced to reduce symptoms and avoid complications. Often large doses of calcium and active vitamin D are prescribed. Most doctors attempt to achieve blood calcium levels a little below normal so that your symptoms are reduced but excessive amounts of calcium do not pass through the kidneys. It is important to work closely with your doctor on the proper balance. But calcium and active vitamin D do not treat or cure the cause of the problem.

Your doctor will prescribe a regimen to meet your unique needs, based on the results of your lab tests, your medical history and your symptoms, and continue to monitor your blood calcium levels.1 It’s important to work closely with your doctor on managing hypoparathyroidism to reduce your risk of long-term complications and the symptoms that can occur as calcium levels rise and fall.1

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Questions to Ask Your Doctor

Make the most of your time with the doctor. Download this list of questions to get the help you need for hypoparathyroidism.

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Tell Your Story

Do you have a story to share that will inspire or help others who are on the same journey? We’d love to hear it.

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Watch Ken’s Video

Hear Ken talk about his journey from surgery to managing hypoparathyroidism.

Watch Video Ken long term effects of calcium therapy