Frequently Asked Questions
It's not always hypoPARA but when it is, this is what you need to know.
Your Questions Answered
Have you ever had a question and didn’t know where to find the answer? If so, you’ve come to the right place. Just start by following one of the links below. If you can’t find the question you wanted to ask, don’t hesitate to contact us.
What Is hypoPARAthyroidism?
HypoPARAthyroidism, or hypoPARA, is a rare medical condition which is characterized by hypocalcemia (low blood calcium), hyperphosphatemia (high phosphate levels), and low or inappropriately normal levels of parathyroid hormone (PTH).
The parathyroid glands are located in the neck, on the back side of the thyroid gland. There are approximately 4 of them, each about the size of a grain of rice.
What do parathyroid glands do?
When calcium levels in the blood drop the calcium sensing receptors (CaSR) signal the parathyroid glands to produce parathyroid hormone (PTH). The PTH signals the skeleton to release some of its calcium it keeps in storage and guides the kidneys and intestines to give back some of the calcium they would otherwise get rid of, thus increasing the amount of calcium in the bloodstream. Once the calcium levels normalize, parathyroid hormone excretion also returns to normal. This sensitive balancing act occurs many times during the course of a day for all humans.
What happens when parathyroid hormone is missing?
When calcium levels begin to drop and there is no functioning parathyroid hormone to correct it, calcium levels will continue to drop. If calcium drops far enough, the level will be too low to perform its usual duties. This is a state called hypocalcemia, which means “not enough calcium in the blood."
What is the role of calcium in our body?
Calcium is essential because it plays a key role in conducting electricity in our bodies. When calcium is out of balance it has bad effects on the nervous system. Calcium also plays a role in muscle contractions, including the contractions of the heart muscle. Calcium is also a building block of healthy bones and teeth and is involved in the clotting process of our blood.
What happens when calcium levels are too low?
Calcium is a key element of the conduction of electricity in the body. When calcium levels are too low the electrical signals in the nervous system do not function properly. This can have effects such as:
- Paresthesia (pins and needles or numbness) in the extremities or around the mouth
- Mood changes (such as anxiety, depression, and irritability)
- Cognitive dysfunction (“brain fog” and an inability to concentrate)
- Memory problems
- Tetany (muscle spasms)
- Muscle/bone pain
- Difficulty swallowing or speaking (raspy voice)
- Fatigue or weakness
Long term effects of hypoPARAthyroidism may include:
- Dental problems
- Dry hair and/or brittle nails
- Psoriasis (dry, red, flaky patches of skin)
- Cataracts (cloudy vision)
- Reduction in bone turnover (necessary for healthy bones)
- Kidney disease: kidney stones or hardening of the kidneys (nephrocalcinosis)
- Soft tissue calcification
In severe cases hypocalcemia has been associated with:
- Heart attack
- Laryngospasm (seizure of the voice box)
What are some of the triggers of hypocalcemia?
- Insufficient calcium or vitamin D levels
- Strenuous exercise
- Anxiety or stressful situations
- Diarrhea, constipation or other intestinal conditions that keep a person from absorbing their calcium effectively
- Changes in medications for other conditions
- Changes in diet that reduce your calcium or vitamin D intake
- Any illness that causes diarrhea, vomiting or loss of appetite
- Abnormalities to your magnesium and/or phosphorus levels
What are the treatment options for hypoPARAthyroidism?
A very important role of native vitamin D (vitamin D2) is to increase the intestines’ ability to absorb calcium. The Daily Recommended Allowance (DRA) for Vitamin D is 400IU per day for all ages and genders, however hypoPARA patients may need more than this. It is not uncommon for patients to need 50,000IU per week. This drug is available as Ergocalciferol or Cholecalciferol via prescription. Be sure to work with your doctor to figure out how much is right for you.
Calcium comes in several different forms, but the two primary ones are calcium carbonate and calcium citrate. HypoPARA patients may need more (sometimes significantly more) calcium than is recommended by the DRA. It is important to note that your body can’t absorb more than 500 mg at a time, so if your doctor recommends for example 2,000 mg, make sure to spread that out over the day. Be sure to work with your doctor on how much is right for you because too much or too little can both have serious consequences.
Calcitriol (also called Rocaltrol) is a prescription form of “activated” vitamin D (or D3). “Active” vitamin D is the type the body makes when “native” vitamin D and parathyroid hormone join forces. HypoPARAthyroidism patients cannot make activated vitamin D because they do not make parathyroid hormone, which is why it is provided to hypoPARA patients in prescription form.
What tests should I be given to monitor my hypoPARAthyroidism?
The following tests are usually administered to monitor hypoPARA patients:
This is a single-tube blood test that looks at how much calcium there is in your blood. You do not have to be fasting for this blood test. Avoid calcium supplements or calcium rich food prior to your blood test since these can elevate your serum calcium levels.
This is a measure of the free unbound calcium in your blood. Ionized calcium testing is useful especially when a serum calcium result does not seem to explain the symptoms a patient is experiencing. Low levels of free calcium can cause your heart rate to slow down or speed up, cause muscle spasms, and even result in a coma. **It is very important that this blood test be performed properly. Many labs do not have the capability to do this. This test must be performed within an hour or two of the draw to be accurate.
Albumin is the binding protein of calcium. This test should be ordered especially if you are not having an ionized calcium test done. This test will aid the doctor in doing a corrected calcium level. The formula for figuring out your corrected calcium is mg/dl= (0.8*(normal albumin-patient’s albumin) + Serum Calcium. There are also calcium calculators you can use like this one.
MAGNESIUM & PHOSPHORUS
Two common blood tests done on hypoPARA patients. Since both magnesium and phosphorus levels can impact your calcium levels, they are commonly checked. They may be tested separately or as part of a blood test called an Electrolyte Panel. These tests don’t usually require fasting (but be sure to ask). Both tests can be run from the same single tube of blood.
Most hypoPARA patients only get this test done once. A PTH blood test is only one tube of blood. Though the time of day is probably less important for hypoPARA patients most others will usually get this done very early in the morning. You do not have to be fasting for a PTH test.
24-HOUR URINE CALCIUM
This test measures the amount of calcium excreted in your urine during a 24-hour period. The amount of calcium contained in a 24-hour sample of urine is important for determining how much calcium your body is getting rid of versus how much your body holds onto. Typically, this amount ranges from 50 to 300 mg per day and is suggested to be less than 250 mg per 24-hour-period for females and 300 mg per 24-hour-period for males; although, these values are suggested and vary from person to person. If the amount of calcium excreted in your urine is high, your body may not be adequately absorbing your dietary and supplemental calcium. This test is also important because long term elevated urine calcium levels can lead to kidney stones and nephrocalcinosis. It is common for a 24-hour urine calcium test to be run once every six months.
How often will I need to have all these tests done?
Opinions vary about how often blood and urine should be tested or what other tests will be useful. Once you and your doctor manage to get your calcium stable it is common to have your serum calcium checked once every other month. If you are experiencing any health problems or symptoms associated with decreases or increases in your calcium you will want to get tested as soon as possible. Work with your doctor to figure out how often to get your blood and urine tests done and consider arranging a “standing lab order” with your doctor so you can get tested without having to first have an appointment or get a referral.
Why am I still symptomatic when my blood tests are normal?
Patients with hypoPARAthyroidism who have normal corrected calcium but who are still having chronic symptoms of hypocalcemia may have a low ionized calcium level. Work with your doctor to correct to get the right balance. It might be worthwhile to check magnesium, phosphorus, potassium or an electrolyte panel since those chemistries can impact how you feel even when your calcium is in the expected range.
Why is it necessary to be seen regularly by my doctor?
HypoPARAthyroidism can be life threatening if it is not adequately treated. It is very important to be seen by both your endocrinologist and your primary care doctor so that you can be properly monitored and any problems you are experiencing can be addressed before they become major. How often you are seen is set by your doctor and depends on how stable your condition is.
What should I tell my doctor?
You should tell your doctor what medicines you are taking: include when you are taking them, and what doses and strengths they are. Also what signs and symptoms you have experienced: For instance, if you are having tingling in your fingers, and pain in your limbs, your doctor should be informed. It’s important to remember that many signs and symptoms are a natural part of having hypoPARAthyroidism and your doctor may not be able to make them go away though it is reasonable to expect that, working together, you can make them less frequent or intense. It is expected that you and your doctor will focus on what your “chief complaint” is, in other words, the thing that bothers you more than other things.
Why is my treatment plan not like others with hypoPARAthyroidism?
Everyone’s metabolism is uniquely different and in the condition of hypoPARAthyroidism what works for one person may not necessarily work for another. ‘Normal’ is individually relative to you. Treatment for hypocalcemia is individualized and your doctor will tailor your treatment regimen with a consideration for your medical history, any current symptoms of hypocalcemia and any recent laboratory results of blood calcium and kidney function tests. Although blood tests can give a good indication of blood calcium levels, they can only be a snapshot of your blood calcium levels at the time of your blood test and may not be indicative of the overall hypocalcemia symptoms you may be experiencing throughout the day.
Commonly your endocrinologist will maintain your calcium levels high enough that you don’t experience any of the physical symptoms associated with hypocalcemia and low enough to reduce the long term risks of kidney problems. It is very difficult to say what the right amount of supplemental calcium or vitamin D is that you should take. You and your doctor will need to work this out together, but your feedback, about how you feel on different doses, is vital information.
How can I know if the symptoms I'm having are from hypoPARAthyroidism?
First, it’s worth saying that not every health problem is going to be related to hypoPARAthyroidism. Colds, thyroid problems, stress, anxiety, pain in your joints, headaches - normal everyday life can present you with a variety of health challenges. However, if you learn to listen to your own body and recognize how you feel on a good day (when your calcium levels are stabilized) versus how you feel when your calcium levels are dropping, you might be able to take steps to avoid a “calcium crash” situation.
When should I take my medications?
Read all the patient literature given with each prescription or over the counter medication. Be aware of the recommended time span between taking doses of medications that conflict with calcium absorption or medications which calcium will bind to and prevent from being absorbed properly. Examples include thyroid hormone replacements, iron, estrogens, diuretics or steroids. If in doubt seek advice from your doctor or pharmacist.
Why can't I keep my calcium elevated?
First thing you should do is discuss this with your doctor, who can help you figure out what is going on. Here are some common reasons people have trouble keeping up their calcium level:
Illnesses which induce vomiting or diarrhea can deplete calcium and electrolyte levels. If you have a chronic medical condition such as Celiac or Crohn’s disease or Irritable Bowel syndrome talk to your doctor about a long term strategy in the management of your calcium treatment.
Medicines that reduce stomach acid in the treatment of reflux or taking antacids which contain aluminum may interfere with the absorption of some types of calcium so check with your doctor or pharmacist as to which one yours is.
As a person ages, the amount of stomach acid reduces. If you are over 50, it has been suggested that you switch from calcium carbonate to calcium citrate. Again work with your doctor to find the right form of calcium for you.
Physical exertion beyond what an individual is accustomed to. Going on vacation for instance, and walking all day long, uses muscles and body moisture much more than our normal daily activities do. Increased exercise is not discouraged, but taking extra calcium and fluids could help offset calcium loss significantly.
Any surgery can affect calcium levels, it is suggested that you have your levels monitored before, during and after.