In simplest terms: Hypopara means I need to control my calcium levels from outside my body, which is difficult and dangerous in moderate to severe cases (like mine).

The details: Despite having “thyroid” in the name, hypopara has nothing to do with your thyroid! However, 80% of hypopara patients come from the inadvertent removal or damage of the parathyroid glands during neck procedures, like thyroid surgery.

Hypopara is a disorder causing lower-than-normal levels of calcium in the blood due to insufficient levels of parathyroid hormone, or PTH. Hypopara is an uncommon Endocrine deficiency disease characterized by low serum calcium levels, elevated phosphorus levels, and absent or inappropriately low level of PTH. Hypopara affects every muscle, bone, and organ in the body, as calcium is a necessary element.

Approximately 80% of the estimated 80,000 people in the U.S. and 110,000 in the European Union with hypoparathyroidism are women.

• 12/19/2024
  YORVIPATH® (Palopegteriparatide) Now Commercially Available in the United States for the Treatment of Hypoparathyroidism in Adults
• 11/4/2024
  2024 Hypopara Conference highlights
• 8/12/2024
  FDA Approves YORVIPATH (Transcon PTH) by Ascendis Pharma 
• 11/7/2023
  2023 Hypopara Conference Highlights

I had benign tumors on my parathyroid  glands, and was born with only three glands instead of four. I was diagnosed in 2002 with hyperpara due to the tumors, which meant my bones and organs were leeching too much calcium into my blood stream (the opposite but just as dangerous disease)

I had surgery to correct it on July 2, 2003. Unfortunately, the surgery overcorrected due to my missing fourth gland, and I was left with hypopara.

For me, personally, the near continuous muscle spasms, brain fog, and fatigue are the heavy hitters, even when my calcium is in normal range. I use an IUD to stop my periods (and as a form of birth control as pregnancy and hypopara is risky). This has helped stabilize my calcium and lower my pain levels monthly. Note: Estrogen–like in birth control pills–can interfere with calcium absorption. 

Seizures, painful menstruation, cardiac rhythm disturbances, brittle nails, dry, course skin/hair, tingling/burning (parenthesis) in fingertips, toes, legs, and lips. Fatigue or weakness, tetany (involuntary skeletal muscle spasms) ranging in severity.

Twitching/jittering/spasms of muscles, particularly in the hands, arms, and throat. Bronchospam, laryngospasm, bone pain.

For muscle spasms, I see a physical therapist and chiropractor weekly, and a massage therapist twice a month. My physical therapist manually releases my spasming muscles and then we do low impact exercises to strengthen them. While we can’t address the underlying problem, PT has helped me get out of spasms more quickly and they’re less severe. We do have to be fluid in our approach, as some weeks I can do more exercises than others. (I go once a week and do exercises at home 4 days a week). 

I also get a deep tissue massage with stretching and see a chiropractor once a week.

Cognitive symptoms include: memory problems, anxiety, confusion, fatigue, depression, brain fog. No two patients present in the same way, which makes hypopara very difficult to diagnose. Symptoms are often misattributed to other conditions or brushed of my patients and doctors alike.

Hypopara itself can cause anxiety, as well as low calcium. Mental health is just as important as physical health!

I am on daily anti-anxiety medication (Buspirone). I also see a cognitive behavioral therapist (CBT) for my anxiety and an EMDR therapist to work on my medical trauma and panic. Both have been instrumental in helping me move forward and heal. Of note, I do find it very difficult to have successful therapy when my calcium is low. Make sure to discuss this with your provider and ways to mitigate the scenario. 

Calcium is a necessary mineral the body needs to function. As the slide says, calcium plays a key role in conducting electricity in our bodies. When calcium is out of balance, it adversely affects the nervous system. 

Calcium also plays a role in muscle contractions–including contractions of the heart muscle. It is a building block of healthy bones and teeth, and is involved in the blood-clotting process.

Your total–or serum–calcium level is made up of two types of calcium levels: “Bound calcium” which is attached to proteins in your blood and “free calcium–known as ionized calcium–which is what is available for active use by the body.

The most common type of calcium test is a serum calcium venous blood test done at a lab or doctor’s office. This test can take 24-48 hours but will give a patient their serum calcium levels (faster if in ER/hospital). 

Unfortunately, calcium levels can change drastically over a number of hours and unlike other endocrine disorders (like diabetes), there is no at-home tester. 

In the US, Abbott does have a hospital-based unit called the ISTAT, which is occasionally offered to patients. To learn more about this US only program, reach out to Abbott.

To calculate a serum calcium estimate from an ionized calcium result: Multiply 7.507 x (Ionized calcium total) = Serum calcium estimated total. This equation isn’t foolproof, but it will give a good estimate. Ideal ionized range for me is 1.22 to 1.3 (9.1 to 9.7 serum). 

 ISTAT availability through the program varies all the time and I do not keep track of the availability as it would be impossible.

In non-US countries, I’ve heard from one patient that they’ve been able to purchase an ISTAT through their hospital.

Everyone with hypopara is different. Some just need one calcium pill a day and it doesn’t affect their daily lives, others need active vitamin D (ex. Calcitriol), magnesium, and handfuls of calcium to be stable. Some, like me, have their daily lives severely impacted. For those with uncontrolled moderate to severe disease, we need a parathyroid hormone replacement, either by direct injection or a pump.

Parathyroid hormone replacement options: 

Forteo: Forteo (Teriparatide) is an osteoporosis medication used off-label for people who need a PTH replacement but do not have an approved alternative available. This is the most commonly used medication outside of the United States for hypopara if oral medications are not enough. Because of its short-acting nature, it is often dosed multiple times a day or micro dosed in a pump.

Some patients have had success with the CeQur delivery system, cross between a patch and pump. If you have issues getting this medication through insurance, visit this website for guidance.

YORVIPATH: (palopegteriparatide) (formerly TransCon PTH) by Ascendis Pharma is an investigational long-acting PTH replacement injection. I was lucky enough to join the Expanded Access Program (EAP) in June 2023 and have been able to return to living again! Yorvipath was FDA approved in the US on August 12, 2024 and will be coming to market soon.

Patients must stop all other PTH replacement immediately upon starting TransCon PTH. Titrating/overlapping medications causes a dangerous and uncomfortable side effect called Hungry Bone Syndrome (prolonged hypocalcemia).

NATPARA: (Takeda Pharma) The only FDA approved PTH replacement was recalled in the US on September 5, 2019. As of the 2024, NATPARA–including the special use program–will be discontinued globally. Natpara will not be returning to market.

Every person with hypopara may need different supplements, including different formulations. Some patients do best with calcium carbonate, while others do better with calcium citrate. 

The main things to look for with supplements:

1. How many pills do you need to take to reach the strength your doctor suggested? It can be 1 pill or multiple pills. Ask a pharmacist or doctor if you’re struggling to read the bottle
2. What are the inactive ingredients? Some supplements add in things like zinc and copper which should not be taken in large doses. Others may have fillers like lactose, which doesn’t work for people following a dairy-free or vegan diet. 
3. Are the supplements third party tested? Supplements like Orthomolecular are third party tested to make sure you’re getting exactly what the label says. 

When in doubt, ask your doctor, pharmacist, or visit your local vitamin store. I get my supplements from a local specialty pharmacy that I use to compound some of my prescriptions, as I’m allergic to dairy. 

For calcium, I take Citrical petite. I take the petite because the regular strength has added minerals that should not be taken in large doses. I also keep Nature Made Calcium gummies on hand for emergencies when I’m unable to swallow a pill.

I travel with a powered calcium citrate/vitamin D packet by Fit Formula in case of emergency. There are also chewable tablets available as well. 

While it’s up to each individual person, I strongly suggest yes! Also, in an emergency, the team will look in your purse/wallet/phone. Make sure to carry a medical card that explains hypopara, your medications, your doctor’s information, and your emergency contact. It’s a good idea to also have your current medications and any allergies listed.

If you’re in the US, my favorite place to get medical bracelets is Lauren’s Hope. They’re cute, affordable, and have a good size tag. If you’re not sure what to put on your tag, Lauren’s Hope can help guide you, and it’s a good idea to also check with your doctor.

What’s on my tag? Since many people don’t know what hypopara is, I have hypocalcemia listed. My tag reads:
Heather, Hypocalcemia
1MG/KG Calcium IV
(Allergies)
Use epi-pen/inhaler 
Emergency contact name and number

On my cellphone screen, I use an app called Lockscreen to add text that reads:
Heather Novak
Clacium Dependent
Hypopara–medical bracelet
YORVIPATH Injection
Emergency contact name and number

I have an iPhone, and I keep the health information up-to-date so it can be accessed in the emergency screen. I also utilize the medication log in the health app. Every time I take any medication, I log it. 

Likely not, unless you have neck surgery or a family history of nonsurgical calcium/parathyroid disorders. The occurrence rate in the US population is 0.0002%

Yes! The mobility aid depends on the outing and how I feel. I can do short bursts of energy and walking without an aid on good days. On other days, I use everything from a cane to a rollator to a wheelchair. 

My favorite mobility aid is the Rollz Motion Performance. It’s a combination rollator (walker with wheels) and wheelchair. While expensive, it’s perfect for my needs. 

Hypopara patients have a running joke: everything affects calcium levels. It’s why so many of us are one a strict diet (plus, in my case, I have digestive disorders that came hand-in-hand).

Some contributing factors:  Weather (extreme hot or cold), infections, changes in medication, strenuous exercise, anxiety and stressful situations, changes in diet, abnormal magnesium and phosphorus levels, menstruation, intestinal conditions (including constitution and diarrhea

Note: Viruses, especially fevers, can affect calcium levels. A endocrine journal earlier this year (forgive me, I don’t have the link) stated that hypopara patients are more likely to have severe and longterm complications from Covid.

I do still wear a mask in public! I caught Covid in March 2024 from my partner’s work and had long Covid until August 2024. I hope to avoid getting it again.

Contact me via social media or my contact form and we can discuss! My rate will depend on how much work is needed, the time frame, and my availability. 

Please note that what I’ve posted here is only a brief overview regarding hypopara. Use this information as a starting point only.

Know that you’re not alone!

If you’re in the US visit: KnowHypopara.com (by Ascendis Pharma)

Don’t miss the conference (usually virtual) by the Hypopara Association in October annually. You can find out more at hypopara.org and watch past conference workshops

Search Facebook for support groups–there you can get personal advice and doctor recommendations. I don’t always have the time or energy to provide one-on-one consultations, but if you reach out to me, I can help point you in the right direction!