The Rare Disease That Lots Of Us Get
And also Hyperparathyroidism needs a better name.
When I asked for a bone density scan just after my meno paused, my doctor said I didn’t need one yet. I convinced her with the argument that my mom has osteoporosis and had broken a hip and then coughed and cracked a vertebra; she ordered the test right up. My bones were fine but my blood calcium was high, so she then checked my parathyroid hormone, and lo and behold, I have a thing that can cause osteoporosis, so it’s a good thing I asked.
Fast forward a few years of iron and vitamin D supplements, and then a bunch of increasingly weird symptoms, and soon it became clear that surgery was my only option. There’s this thing called Hyperparathyroidism that happens for no apparent reason, where one of your parathyroids starts pulling calcium out of your bones and organs and dumping it into your bloodstream. And no one’s ever heard of it.
I tried to explain it to my friends and family.
“Oh, you have hypothyroidism? My [insert relative] has that. She can’t lose weight.”
“No, it’s not my thyroid, it’s my parathyroid.”
“Oh, my [insert co-worker] had that, she got a goiter.”
Then I would have to explain, over and over, that the parathyroid sits behind the thyroid (the prefix para- meaning alongside, beside, near, resembling, beyond, apart from, or abnormal in Greek and shielding against in Latin), and actually has zip to do with the mighty thyroid, which regulates just about everything. The parathyroid regulates three minerals: calcium, magnesium, and phosphorus. That’s it. Also, there are four of them, maybe, and sometimes they’re hiding in your neck or chest instead. And usually, it’s just one that goes out but sometimes there are problems with all of them.
I remembered Gilda Radner and started sending people this video. I started telling people, “I’ve got a gland on the fritz.”
This disease really needs a good nickname. No one can remember the para and the thyroid location is a red herring. It needs a made-up word you can sing like “Supercalifragilisticexpialidocious,” but not so long. I propose “Hypercalcifragilism,” because it screws up your calcium it makes you feel really fragile and bizarre.
And people should know about Hypercalcifragilism. There are several types, like everything, on a range from simple to complex, and primary hyperparathyroidism is one of the most common hormonal disorders. About 1 in 50 women over 50 get it, and men get it too. Doctors look for “bones (bone pain), stones (kidney stones), groans (abdominal pain), and moans (depression).”
My symptoms included weird traveling abdominal pain, an ache on the front of my neck, fatigue, depression, irritability, confusion, CRS (Can’t Remember Shit), pressure in my ears, tinnitus, weird twitching under my skin (which started right after a Covid booster so I had assumed it was the 5Gs), hair loss, heartburn, a constant dull headache, high blood pressure, pains in my footbones, hand bones, knee bones that just didn’t heal, a huge pain in my heart (one day only), and this crushing sense of dread like I was dying, decaying from the inside, losing a little something each day. I started getting over-fatigued after exercise, wanting to go to bed at seven but then waking up many times during the night. I started feeling like not myself for more and more days each week. I gained five pounds in as many months because there were so many days when my only happy moment was eating cake. I could pull myself together and fake it now and then, with the help of makeup and the energy of a crowd, but the next day I’d be in bed until noon, especially if I’d had a drink. I couldn’t quite describe my discomfort but complained constantly.
If you have some of these symptoms, get your calcium checked!
I thought about death a lot this summer. I thought about death while I was in Disneyland. It seemed very very real with this drip-drip drain of calcium from each part of me. There was this gland that had been designed, genetically, to activate in my fifties and try to kill me in my sixties. Osteoporosis, heart disease, GERD, kidney failure splayed out before me like cards on a table—pick one, here’s that miserable old age you thought you’d avoid with your fiber and exercise, and positive attitude. Before the surgery, I had to fill out an Advanced Healthcare Directive and decide if I wanted to be resuscitated and how many organs I’d want to donate if I died. “One step closer to the Fiestaware,” joked my son.
“I want to be buried with it,” I joked back. We knew it was just practice; this surgery is much much less risky than living with the problem. But I felt so very, very, very seen by Thoughts of Death Barbie; this whole experience was as weird as it must have been for her waking up with flat feet.
I didn’t know how I’d manage three months until the surgery, and then I had a stroke of luck. My mom told me to pester the staff, and it didn’t take much pestering for them to tell me there were lots of open appointments in the next town. I lucked into a handsome young doctor who did one of these every week.
“May your physician have steady hands,” one friend texted. On my chat thread, my girlfriends had all provided hilarious pix of ascots and dickies and Tudor ruffs and neck corsets for me to wear to hide the scar. I imagined a future of velvet ribbons and diamond collars. My husband sent a pic of a spiked dog collar but bought me three strands of pearls. I listened to podcasts and did pre-surgery prayers and throat chakra clearings. A psychic suggested neck and throat problems are past-life guillotine scars.
I had gotten my worried head straight about the surgery with this thought: genetic diseases are activated by some sort of stress. That little gland, originally the size and shape of a grain of rice, had grown all out of proportion throughout all of my stress over the past four years, the past ten or more. My stress, my pain, even my poor memory and depression could be surgically removed. I live a charmed life, I tell you!
The surgery went perfectly. I felt crappy for a few weeks, hiding it from house guests, and falling asleep at parties.
“Nice scar,” my friends would say.
“You should see the other guy,” I would say. I would rather tell people I was in a knife fight than try to explain the complexities of Hyperparathyroidism.
I had three things to recover from: the anesthesia, the hole in my neck, and then the long process of waiting for my three other glands to kick into gear. Low calcium levels still make my fingers heels and lips tingle, my hands shake, and my wrists twitch, but the pain in my neck is gone, and within a week I could get out of bed before noon. Within days my brain came back online, and I knew I wouldn’t need Prozac anymore.
At my post-op, doctor handsome showed me the picture of the adenoma. I thought the thing would stink and have spikes all over it like some miniature durian, black as pitch and pure evil…but it was this shiny little red beefsteak, the size of a cinnamon Jelly Belly.
“YOU HAD ONE JOB,” I shouted, shaking my fist at the little fucker.
When he told me it was an adenoma, a tumor that grew on my gland, I felt differently. I wasn’t genetically wired to self-destruct with a rogue gland. My parathyroid had been forced by this mean bit of meat into hyperactivity. Like my psyche had been, for so many years after a stressful childhood. I was looking at an ACE right there. My coping mechanism of trying to understand and explain everything, to channel all thoughts and emotions through my voice, was staring me in the face. Hey! I thought. I suppose could just tell people I had a tumor in my neck!
The doctor had cleverly sliced me open along one of the neck wrinkles that had settled into my skin all those years I was typing on the couch, watching TV in bed. He said it was healing brilliantly (I’ve been taking Zinc and using Arnica btw), and would practically disappear.
“I’m not worried about that,” I said. “I can just wear my June Cleaver pearls.”
“You never know,” he said, addressing the worry about failed procedures. “You might need another surgery someday.” That’s the thing about Hypercalcifragilism. You never know why or when it comes back. “You’ll need to check your calcium every year.”
I’m looking forward to getting back to my life. I’m already starting to feel like myself more days than I don’t. I’m ready to start exercising again, and I don’t need my daily cake anymore.
I’m way more sympathetic to those who struggle from any kind of disease, especially the wtf ones you really can’t control with good habits. Health is a blessing, not a right. And depression is physical. It’s chemical. Positive thoughts are coping skills; when you’re good, they come easily.
The weirdest thing, without these oppressing symptoms, is the sense of spiritual freedom I feel now that this bad influence is no longer in my body. Perhaps that meaty glob really was a physical manifestation of the Trump years, the pandemic, all the loss and grief and things gone awry. Goodbye to that physical sense of doubt, of off-ness. Those whispers that good self-care means nothing and I can’t have good relationships anymore with so little to give (yeah, that was a hard one), are silenced. I am starting to hope that my best days are not actually behind me, yet. I’m back to trusting that my good physical and mental habits do make a difference.
To quote Babs, “From now on, it’s just good, clean fun for me and my uvula.”
What an ordeal you went through! I had no idea, you masked it so well. Thank you for sharing your experience in this beautifully written post. Now I'm going to get my calcium checked.