Frequently Asked Questions about Hypoparathyroidism

Below are the most frequently asked questions we’ve received about living with hypoparathyroidism. If you are looking to learn more about hypoparathyroidism, symptoms, treatment, and testing click here.

What can cause calcium to drop?

One of the challenges of living with hypoparathyroidism is that calcium levels can unexpectedly shift, sometimes with little warning. This can be true for people on PTH supplementation and for those who are not. 

The following are factors that most often contribute to a drop in calcium. If you are struggling to maintain calcium levels be sure to check with your medical provider. 

  • Anxiety and strong emotions
  • Physical exercise
  • Diarrhea or vomiting
  • Other illnesses
  • Some medications 
  • Menstrual cycles
How often should I see my medical provider?

You should work with your provider to determine the appropriate visit schedule to meet your needs. In the early stages of your diagnosis, it is common to see your provider often as you adjust to living with HypoPara. Visits might reduce over time as you stabilize. Many people with chronic hypoparathyroidism see their provider once or twice a year and more if they begin to experience symptoms.

What tests do I need to have?

The tests that you need will depend on your physical health and overall needs. Click here to read about the common tests associated with hypoparathyroidism and work with your provider to determine which tests and frequency are right for you.

What medications are used to treat hypopara?

The typical treatments are calcium supplements, active vitamin D supplements, native vitamin D supplements, magnesium supplements, and possibly PTH replacement. Some patients require other medications to maintain calcium levels. Click here to learn more about typical treatments. 

When should I take my medications?

There are many medications that calcium can impair the absorption of. Many hypopara patients are also on thyroid replacement, which should be taken at least 2 hours before (or after) calcium supplements. Please consult with your doctor or pharmacist for questions specific to your plan of care.

What is PTH replacement therapy?

Because hypoparathyroidism involves the reduction or absence of parathyroid hormone, PTH replacement aims to replace or augment that hormone in the body.  It is generally given by injection, once a day. Currently, the only FDA-approved PTH replacement for hypoparathyroidism is Natpara, which is unavailable due to a recall (see below).

Why was Natpara recalled?

Natpara was recalled in the U.S. in 2019 due to an issue with the injection device. There was evidence of small rubber particles breaking off from the rubber septum in the device. This could lead to under-dosing, which could cause serious side effects. In April 2021, Takeda announced they might have a fix and are finishing testing with the goal of submitting it to the FDA at the end of summer 2021. Click here to learn more about the Natpara recall.

What is Forteo?

Forteo is a partial PTH (it does not contain the entire PTH molecule), FDA-approved to treat Osteoporosis in the United States. Some providers choose to prescribe Forteo as an off-label treatment for hypoparathyroidism.

What is off-label medication?

Using a medication “off-label” means that the medication is prescribed in a manner that has not been approved by the FDA. This could mean that the medication is prescribed to treat a condition that it hasn’t been approved to treat, or it could mean altering the administration or dosing.  It is legal for providers to prescribe off-label medications, and off-label use makes up around 20% of all prescriptions written. 

What is split, or multi dosing, of PTH?

This is an off-label use of PTH where some patients break their dose up into two or more doses per day. Some patients have also been guided by their physician to use PTH via a pump.

What is the Omnipod?

The Omnipod is a pump used for insulin delivery for people with diabetes. Some folks use this pump off-label under close supervision of their doctor for Natpara or Forteo. The pump holds three days’ worth of medication, and tiny amounts are given underneath the skin throughout the day. When medication is delivered this way, it more closely mimics the way our body releases PTH.

How can I get an in-home calcium monitoring device?

There is currently no device available to check your calcium levels at home. We provided a letter of support to Dr. Xuewei Wang for his ongoing research in this area. There are other researchers looking into at-home calcium devices as well. 

One of the challenges with bringing an at-home device to market is that calcium is very sensitive, and quickly changes outside the body. In hospitals, calcium levels are drawn directly from a vein, while at home you would be doing a finger stick which exposes the blood to air. While researchers are looking for ways to adjust for the changes that occur when exposed to air, we are likely still several years away from an FDA-approved at-home calcium monitoring device.

What is TransCon PTH?

TransCon is an investigational prodrug, an inactive compound that can be metabolized in the body to produce a usable compound, in this case, PTH. TransCon is in development as a once-daily hormone replacement therapy. It is designed to restore levels of PTH in the body 24 hours a day. The PTH is linked to an inactive carrier, which is intended to make it last longer and be more stable in the body. The clinical trial is ongoing, and data has been very promising.