The consequences of a simple oversight with hypoparathyroidism treatment
Solving the mystery of my self-induced hypocalcemia
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It’s easy to get lost in the fun of summer, especially when on vacation. This was extra true for me when it came time for my annual trip with my lifelong best friends.
Having missed last year due to my grandma’s memorial, I’d been counting the days to when we would all be reunited again. What got lost in the excitement was remembering to keep my Yorvipath (palopegteriparatide) vial temperature controlled, until I faced the consequences.
Yorvipath is an approved treatment for hypoparathyroidism. This once-daily injection comes in a multidose vial placed inside of a pen dispenser. Once the refrigerated vial is open, it can remain at room temperature for 14 days, however that temperature should not exceed 86 F.
While I own numerous ice packs, a medication thermos that can stay cold overnight, and was bringing a cooler full of food, I tossed my Yorvipath pen into my purse that Thursday as I walked out the door. This might have been fine had it been a cool fall day, but the temperature was well into the high 80s when I pulled out of my driveway and headed to carpool with my friend. An hour later, without thinking, I shoved my purse into the backseat of my friend’s car as we drove another three hours northwest to just outside of Ludington, Michigan.
The cabin where we stay is my friend’s family home, nestled in the woods next to a farm, about half an hour away from Lake Michigan. It’s quiet with gorgeous views, a big kitchen, and walls of windows that let in the sunshine. When I unpacked my bags, I set my medication box on the counter, right next to the windows.
Looking back, I can see every mistake I made in embarrassing detail. The car had been warm, even with the air conditioning blasting. The cabin was toasty from the sunshine, with the digital thermometer in the kitchen reading 80 F. As the sun moved across the sky, it shone on the kitchen counters, right where my medication box was.
Heather Novak and friends visit Stearns Park Beach in Ludington, Michigan. From left, Heather, Courtney, Steenie, Kristall, and Bridget. (Courtesy of Heather Novak)
On Friday — the warmest day of the weekend — we spent some time in town and at the beach. Despite taking an extra calcium pill to combat my sweating and activity, which can lower calcium levels, the next day I felt off. I ended up with an occipital neuralgia flare and slept for a few hours until the blinding pain subsided. Then, after dinner, I was hit with a wave of dizziness and headed to bed early.
That kind of dizziness, unlike my usual vertigo, is often a warning sign for me that my calcium is struggling, but I’d chalked it up to my migraine and exhaustion. However on Sunday, I wasn’t faring much better. It was well above 90 F with heavy humidity, and the three-hour drive back to where I parked had left me wilted. The final hour back to my house was miserable.
Embarrassingly, it wasn’t until Wednesday that I noticed my calcium level might be low. While my blood calcium test came back in the normal range at 8.7 milligrams/deciliter (mg/dL) — the average textbook range is 8.5 to 10.2 — this was below my usual 9.2 mg/dL on Yorvipath. For my body, anything below 9 mg/dL causes me increased anxiety and pain levels. I supplemented extra calcium, but still couldn’t shake the symptoms.
By Thursday, the last day on this vial, my labs came back at 8.2 mg/dL. Now I knew something was truly wrong. After being on Yorvipath for over four years, I had a good idea of how much calcium I needed to supplement to reach my optimal blood calcium level. Now, my labs were the lowest they’d been since I’d started this medication.
My hypoparathyroidism friends group chat helped me finally put the pieces together, and I felt extremely silly. My vial most likely got too warm during my trip, compromising the medication’s efficacy. A hard lesson learned.
After starting a new Yorvipath vial, I was back into my normal calcium range, and my anxiety, extreme fatigue, and pain returned to my usual levels. I was thankful it was a simple fix, but upset with myself for being careless. This is one of those mistakes I hope to only make one time — much like when I forgot to prime my vial.
I hope that by sharing this story, other patients will avoid the same issues. Despite my self-induced hypocalcemia, I still had an absolutely wonderful time with some of my best friends. Next year, I’ll definitely keep a better eye on how I store my medication so I can enjoy the entire weekend.
Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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