killing me softly: my struggle with undiagnosed hyperparathyroidism

PART 1

This title may sound dramatic, but it’s exactly how I’ve felt over the past four years.

Despite being waived out doctors’ offices, as well as the Emergency Department—all while the sitting lab results would indicate a parathyroid tumor (primary hyperthyroidism)—I was sick. Very sick.

And I KNEW something was not right.

My 2018 pregnancy was difficult and long (42 weeks), as was the planned home birth, which ended with a c-section and a NICU stay. It was extremely traumatic, and I struggled immensely with nightmares, panic attacks, intrusive thoughts, and even some hallucinations and agoraphobia. This was my first experience with any of these things, and I was extremely caught off guard. I had always been a person who could “handle a lot”. I had never experienced any kind of serious anxiety, but I also recognized that I had just experienced birth trauma and had basically no support outside of my husband; I was at home alone all day with a baby. We had moved during my pregnancy to Santa Barbara—a decision I would later realize was not a good one, but you know what they say about hindsight…

Fast forward to December 2020. We were living in Greenville, SC, and I had so many symptoms that I just didn’t feel were right. There was one time that I was driving home from my office, and I literally thought that I was going to have to pull over and nap; I lived eight minutes from the office. Frequently, I just felt generally bad and like I was walking through mud. My bones frequently hurt, and I also felt weak. I had also recently lost a friend, suddenly, to ovarian cancer, so my radar for unusual and unexpected illness was on high alert. At a GYN appointment, I discussed my extreme fatigue, chronic pain, and muscle soreness with the doctor, who chuckled and told me that

“getting old is hard”.

She ordered some lab work, another in-office procedure, and I saw her the following week. As she rushed out of the exam room, she said “oh, by the way, your vitamin D is low; take a supplement”. No ‘make sure you’re also taking magnesium in order to absorb vitamin D’, no ‘by the way, your calcium is high’ (it was), no ‘so we should check your parathyroid hormone (PTH)’.

In mid-October of 2021, I started having crippling panic attacks. It began when we were staying at an adorable Airbnb in Greenville, SC for a few days while we had some work done on our house. I woke up early one morning and started feeling hot and lightheaded. Then, what I recognized as a panic attack started, except this time, I was writhing with leg cramps that moved from my feet upwards, and my arms felt like burning pins and needles. It kept happening, like contractions, and I nearly fainted.

My husband called 911, and I was taken to the ED. There, they were hyper focused on the fact that I had taken herbal medicine for a cough the night before—and even lectured me on the importance of reliable sourcing (insert eye roll and read here about the importance I place on herb sourcing; yes, I agree!). My bloodwork showed low potassium, so the hospital gave me potassium supplements, some fluids, and sent me home. In all my experience of participating in endurance sports and teaching multiple spin classes per day, I had never experienced leg cramps like this, and it had been years since I had worked out with any intensity or regularity. Where did this low potassium come from? What was causing it?

Something was NOT right.

I was incredibly weak, but they sent me home and said that it’d probably take a few days and I’d be feeling better. Every two weeks, the panic attacks happened. I wasn’t worried about something and then had a panic attack. I would be literally going about my day, and the physical symptoms of a panic attack would come out of nowhere and cripple me entirely. They would flow like contractions, lasting for hours, for days a time; afterwards, I’d be frighteningly weak and exhausted. I had no idea what was going on, and in December 2021, I desperately called a doctor about medication.

That was the best thing I did for myself—and my family— in 2021.

I was scared to take medication, AND I was scared not to. I was becoming a person I didn’t recognize, and it was scary. I didn’t feel like I was the business owner I wanted to be, because I lacked the energy to go out into the community and network and plan events with other likeminded businesses. I lacked the energy to go to the park with my daughter and do fun things with my husband. I tried really hard to still prioritize meal planning and cooking, because after all, that’s our source of post-natal qi. And I kept re-evaluating my diet; it wasn’t perfect, certainly, but dang, it was pretty good, and that was becoming frustrating, too. I had been able to solve health problems by tweaking my diet, and it just wasn’t working this time.

In 2022, I started looking back at the lab work from December 2020 and same thing—high calcium. Once I was back in Albuquerque, I was at an acupuncture appointment, talking to my DOM (Doctor of Oriental Medicine) about what had been going on. I told him about the low potassium and high calcium, and he’s the one that reminded me that it’s the parathyroids’ job to regulate calcium in the body. He told me I should look into it.

The primary diagnostic criteria for a parathyroid tumor is high calcium; there is virtually no other cause of high calcium in the blood.

I had almost every symptom of hyperparathyroidism, which is an overactive parathyroid gland, caused by a tumor that incorrectly tells the parathyroid to secrete far more PTH than is necessary, which means the body puts too much calcium into the blood (hypercalcemia). We naturally associate calcium with bones and teeth, but we don’t as commonly think about calcium and neurological function, mental health, muscle strength and contraction, and digestion. A parathyroid tumor won’t kill you, in and of itself, but it will suck the life out of you, and it can also cause osteoporosis, kidney failure, and some cancers.

Calcium affects nearly every system in the body.

And even though I definitely had a traumatic experience that somewhat explained and contributed to sudden and unprecedented mental health problems, in hindsight, it’s more likely that the parathyroid tumor going gangbusters is what put me over the proverbial edge.

My therapist describes the mental health component like a burrito: social experiences and medical issues get rolled up into one tortilla, and sometimes it’s difficult to figure out what’s causing the heartburn.

So I’m not suggesting that I should skip therapy, but what I am saying is that the seemingly, out-of-the-blue panic attacks wouldn’t have been so severe and debilitating had I not had this tumor. Like I touched on above, because hypercalcemia affects so many systems, the longer it grows, the worse your symptoms become. The only solution—and this coming from an acupuncturist—is to have it surgically removed. Not “wait and see” or “watch it”. It needs to come out, and in Part 2, I’ll talk about how I found my surgeon, the diagnostic process, and the surgery and recovery itself.

Also, this is where I need to remind you that I’m not a medical doctor; I’m an acupuncturist, and this is what I’ve learned through information available on the internet, through consultation with my doctor, and through my experience as someone with hyperparathyroidism. It has been hell, and if my sharing what I know helps even one person, I would be so happy to have helped alleviate their suffering.