Journey Overview

The parathyroid glands are four pea-sized glands located in the neck, directly behind the thyroid gland. These glands produce and release parathyroid hormone (PTH), the hormone responsible for controlling the amount of calcium in the blood.

Calcium is a mineral the body gets from the foods a person eats. It plays a critical role in the health and function of bones, nerves, blood vessels, muscles, and the release of hormones. If levels are too high or too low, problems occur.

Hypoparathyroidism occurs when the parathyroid hormones produce insufficient amounts of PTH or no PTH. The most common cause is an injury to the parathyroid glands during surgery, such as surgery for thyroid cancer. Other causes include magnesium imbalance, genetic disorders, autoimmune disease, or other health conditions that affect the parathyroid glands.

Hypoparathyroidism can cause tingling, numbness, muscle spasms, pain, hair loss, cognitive problems, skin problems, fatigue, and many other symptoms. It can also cause serious complications, including cataracts, heart arrythmias, and kidney disease.

If you or a loved one is living with chronic hypoparathyroidism, this guide provides information to help you better understand the healthcare providers that you will work with, the questions you should be asking at appointments, and how chronic hypoparathyroidism can be managed.

Your Multidisciplinary Team

People who are living with hypoparathyroidism will work with a team of healthcare providers with different specialties. This team can include:

  • Endocrinologist

    A treatment team will include an endocrinologist, a medical doctor that specializes in the diagnosis, treatment, and management of disorders that involve hormones. This will typically be the healthcare provider that oversees treatment.

  • Primary care provider

    A primary care provider oversees routine medical care, including immunizations, screenings, and treatment for illnesses. This provider can also help coordinate care among different providers and monitor for symptoms or side effects.

  • Nephrologist

    A treatment team may include a nephrologist, sometimes called a kidney doctor. Chronic kidney disease and kidney stones are common complications and side effects, and treatment will involve regular tests to monitor kidney function.

  • Additional team members

    Other team members include surgeons, registered dietitians, counselors, and nurses. Care teams and patients may need to coordinate with emergency departments to plan for situations that require emergency care.

Treatment for Hypoparathyroidism

  • Treatment will depend on the underlying cause, lab test results, specific symptoms, and disease severity.
  • Hypoparathyroidism caused by abnormal magnesium levels will be treated by normalizing magnesium levels.
  • The main treatments for most types of hypoparathyroidism are supplements of calcium and calcitrol (the active, hormone form of vitamin D). This requires regular monitoring for calcium levels (in urine and blood), phosphorous levels, serum vitamin D levels, and kidney function.
  • Parathyroid hormone replacement therapy may also be prescribed in some cases.
  • Dietary changes may be needed or recommended. These can include consuming foods high in calcium and limiting foods high in phosphorous. Hypoparathyroidism also causes elevated levels of phosphorus, a mineral that works alongside calcium.

Your best source of information about treatment and management will be your healthcare team. Work with your providers to understand your diagnosis and your treatment options. Hypoparathyroidism can cause health emergencies, including seizures and difficulty breathing. You and your healthcare team should discuss the possibility of medical emergencies and how to prepare in case of an emergency care plan.

The Conversation: Questions for your healthcare team

Regular appointments with a healthcare team are critical to treatment. The questions below can help you get started.

Questions about the diagnosis

  • What is causing hypoparathyroidism?
  • What is happening in my body as a result of low parathyroid hormone levels?
  • What are the most important things I need to know about this diagnosis?
  • Are there additional tests that I need at this time? Are there any other providers or specialists I should make an appointment with?
  • Can I have copies of my lab reports and test results?

Questions about treatment

  • What treatment do you recommend at this time and why?
  • How does this work to treat hypoparathyroidism?
  • How do I take this treatment? Always have clear instructions on dosing and timing.
  • What are the potential risks and side effects? What do I do if I experience a side effect?
  • Is there anything I need to avoid while taking this treatment?
  • How will we know if the treatment is working?
  • What are my options if this treatment doesn’t work?
  • What tests or checkups will I need, and how often will I need them? What will these monitor? What can I expect when I come in for these appointments?
  • Who can I contact if I have a question about my treatment?
  • Do you recommend making changes to my diet or other lifestyle changes?

Questions about symptoms & emergency care

  • If I have a question, who can I contact outside of normal business hours?
  • What should I do if my symptoms get worse?
  • What signs or symptoms require immediate medical attention?
  • When do I need to go directly to the emergency room?
  • What can I do to be prepared for a health emergency?
  • Can you provide an emergency protocol letter detailing condition and emergency treatment for emergency room staff?
  • Should I wear a medical alert ID?

Questions about care coordination & support

  • How will we coordinate care among different providers? What steps can we take to make sure all my healthcare providers are updated about my diagnosis and treatment?
  • Who can I talk to if I have questions about insurance, concerns about treatment cost, or if I need additional support?
  • Who can I talk to if hypoparathyroidism is causing anxiety, fatigue, brain fog, or other problems that are interfering with daily functioning.

Your appointment is an opportunity to learn more about your diagnosis. If you have a question, ask. If something isn’t clear, ask for an explanation.

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