Reframing my hypoparathyroidism diagnosis anniversary

On July 2, my surgical hypoparathyroidism turned 22 years old. It’s wild to think that I’ve had this disease for over half of my life, and that I’ve been sick longer than I’ve been healthy. That one day in 2003 changed everything.

As I prepared to write this column, I dug through my old medical records, reminding myself of my story as told in numbers and blood tests and scribbles from doctors who have long since retired. This year, I challenged myself to see the events of the last two decades in a new light: one of gratitude.

There are four parathyroid glands behind the thyroid in the neck, each one the size of a grain of rice. When I was in my teens, my parathyroids developed adenomas, or benign tumors, that caused my bones and organs to secrete too much calcium, causing fractures and frequent illness. After about five years of being sick, I was diagnosed with hyperparathyroidism — too much parathyroid hormone — and prescribed surgery to correct the issue.

The goal: remove two parathyroid glands and keep two, which would mitigate the risks of both hyperpara and hypopara.

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As an 18-year-old who was relieved to finally have a diagnosis, I didn’t question my doctors, even as pre-surgery tests showed only three glands. “We’ll find the fourth one, it’s just hiding” was often repeated. I trusted my surgeon and was too wrapped up with my first year of college, first love, and multiple jobs to worry. This operation would give me my life back, and everything would be fine.

When I woke up after the surgery, I knew something was wrong. I had a breathing tube down my throat, sharp static under my skin, and no voice. The surgery had caused scar tissue buildup around my vocal cords, leaving me without a voice for five months.

My hourlong parathyroidectomy had turned into an eight-hour exploratory surgery, as they tried to locate my elusive fourth parathyroid. Ultimately, they concluded I didn’t have a fourth gland, so they removed two and kept only one, hoping that it would grow and produce enough parathyroid hormone to keep me stable. Unfortunately, my hormone levels remained significantly underactive, and I was diagnosed with permanent hypoparathyroidism.

When I went back to my surgeon for a follow-up, complaining about brain fog, pain, and constant fatigue, he told me it was because I was a teenager and I should exercise more. I tried primary care, internal medicine, and holistic doctors, endocrinologists, nurses, massage therapists, and chiropractors, but none of them made me feel better. They said some variation of, “You have hypoparathyroidism. Take some calcium. Drink some milk” — despite my warning that I was allergic to dairy products.

I’d been so angry that no one sat down and explained how much this disease would affect every aspect of my life, and that at my worst, I’d need to take pills every two to three hours, even during the night, to stay out of the hospital. There were no social media support groups when I was diagnosed. I learned from trips to the emergency room for intravenous calcium, short mentions in library textbooks, and the occasional pharmacist who remembered something they’d read in school.

This year, as I leafed through dusty medical records, running my fingers over age-faded lab reports, I pieced together another story, one I’ve been too angry to notice. There were notes on labs and in margins from a medical team that tried even when they didn’t know how to help. Smiley faces from nurses and phlebotomists who had held my hand as they tried to find a vein that wasn’t blown out from too many needles. Reports from doctors who made calls and wrote out referrals, trying to find answers for me that didn’t exist yet. Notes from physician assistants who gave me their direct lines. Get-well cards from loved ones who drove me to the hospital and sat in the waiting room with worn paperbacks.

And most importantly, the business card from a nutritionist I visited a decade after my diagnosis, who wrote the name of an endocrinologist on the back. That endocrinologist turned out to be one of the only hypopara specialists in Michigan and is still my doctor today. He led me to my community, to my current treatment with Yorvipath (palopegteriparatide), and to my closest hypopara friends.

This year, I will give a nod to my anger and grief but focus on gratitude. I found my way, and now I get to help others find theirs. Through my story, I hope no one ever feels as alone as I did during the first 10 years of my diagnosis. Though, looking back, it turns out I was never truly alone.

Note: Hypoparathyroidism News is strictly a 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.