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My Long Journey Home: What Happens When a Parathyroid Gland Goes Rogue?

Updated: Jun 29




7 days ago today, I was just waking up from general anesthesia at Providence Portland Hospital. I was in the Post Anesthesia Care Unit, having a difficult time remembering that I needed to breathe, after undergoing a Right Superior Parathyroidectomy. This wasn't my first surgical rodeo. The periodic berating of my Short Stay RN reminding me, in no uncertain terms, that breathing was a nonnegotiable, life sustaining activity, was beginning to get on my last nerve. Didn't she realize her loud voice was interrupting my mellow flow?


She wasn't the first nurse to yell at me in my illustrious career as a slow-to-arouse, fresh post-op patient. She will likely would not be my last--at least if she had anything to say about it. A blanket of heavy, green, narcotic-infused moss had settled around me. I desperately wanted to hunker down and give into the nothingness threatening to overtake the persistent rise and fall of my chest. The lure of defeat was enticing. I craved it with every fiber of my being.


"Rachel!"

"RACHEL!"


"You have to breathe."

"Rachel!"

Seriously. What gives?! This nurse was ruining my day.


"RACHEL!"

Her tone and the way she said my name this time, I knew she meant business. Being a RN myself, I recognized her frustration. I also understood I was dangerously close to losing the soft, quieting comfort of my pain meds with a healthy dose of Narcan. I could feel her calculating the Narcan in her head. It was the nursing equivalent of hearing my mother use my full name when she was angry: Rachel ANN YOUNG!


As I struggled to come out of my personal cloud forest, I began to understand there were things worse than not breathing. In fact, I was pretty certain my bladder was going to explode. Kissing my "survival indifference" goodbye, I embraced life, took a deep breath, opened my eyes, politely, yet resolutely, requested an Incentive Spirometer with a cup of ice.


My strategy was twofold. Firstly, I knew that no one ever requests an incentive spirometer-(one of those little breathing apparatuses surgery patients get as parting gifts from any procedure with general anesthesia). I also knew my request would 1. Show her that I was, in fact,quite serious about breathing and I hadn't meant to waste her time, and 2. My insider knowledge would show her I was a nurse and this would ingratiate herself to me, making her more willing to deal with the hassle of offering me a bed pan.


....


Today, it’s been 7 days since the removal of my Right Superior Parathyroid gland. My surgeon tells me this parathyroid gland was about the size of a kidney bean. As near as I can tell it had been pumping out parathyroid hormone (PTH) for more than 7 years, 3 months and 20 days.


We have 4 parathyroid glands. They sit behind the thyroid in your neck. The parathyroids have 1 job: to regulate calcium in your body. When they sense that you don’t have enough calcium in your body, they produce a hormone telling your bones to share their supply of calcium with the rest of your body. Calcium plays a vital role in your muscles and nerves working correctly.


When everything is functioning normally, it’s a great system. Supply and demand are usually balanced with dietary intake. Sometimes 1 or more of these glands, usually no larger than the size of a grain of rice, goes rogue and hyper produces PTH. The body hears the alarm bells and responds pulling calcium from your bones to meet the nonexistent demand. What isn’t used is urinated out of your body.


Excess calcium and PTH wreak havoc on your body. Too much calcium has a “calming” effect on nerves and muscles. Bones get brittle, muscles weaken, the brain gets foggy, nerves get sluggish, blood pressure increases and kidneys work overtime filtering and excreting extra calcium leeched from you bones and quite literally flushed down the toilet.

Over 100,000 people a year are diagnosed with rogue parathyroids. For most of these people, surgery is the only option. In almost all cases, hyperparathyoidism is caused by an overgrowth of the gland or a benign (noncancerous) tumor. Remove the offending gland/tumor and everything goes back to normal. The other 3 glands barely miss their hyper, overachieving coworker.


After 4 weeks, they say it’s as if the affected parathyroid gland never existed in the first place. The brain clears, bones rebuild, muscles contract without delay, nerves wake up, and kidneys get to relax now that they are not being clogged up with calcium.

The entire process is pretty straightforward: high calcium= hyperparathyroid.

But what happens when your symptoms are never viewed as “symptomatic” in the first place?


What happens when your “foggy brain” is assumed to be a side effect of menopause, or stress, or ADHD, or depression, or trauma, or…?


What happens when your doctors don’t understand that a slightly higher than normal calcium level almost always indicates there’s a problem?


What happens when your brain spends endless sleepless nights telling you your body dying but it might as well be speaking Klingon because no medical professional around you can understand the signs? Or worse yet, what happens when they cease to be curious about your condition?


I’m going to take some time, share my story and delve into all these questions.


In the meantime, if you’re feeling “off” for no apparent reason, plagued by anxiety, having trouble concentrating, feeling weak, watching your blood pressure climb from month to month, year to year, I stongly recommend that you get a comprensive metabolic panel and check your calcium levels. If you’re over 50 and it comes back higher than 10.2 mg/DL, demand they check your PTH.


Life doesn’t have to be a constant struggle. I promise.


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I’m so glad that you took the reins and insisted that your parathyroid gland be checked and removed. You‘re such a good, and informative, writer and sharing this information will undoubtedly help many others who wouldn’t have guessed their parathyroid could cause so many ills. I know I will check my numbers closer at my appointment, later this month. And, be more aware going forward. Thank you for the educational, and well written, account of your experience coming back to good health. So happy for you!

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Rachel Young
Rachel Young
24 giu 2023
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Thank you, Janet. Looking back, it was as if my doctors and I were given a box containing 3 of the same puzzles as we stood by the side of a road. The pieces of my story that seemed to fit were perfectly logical explanations. Stress, trauma, codependency, “lifestyle”, implicit bias and explicit discrimination are just a few contributing factors in my story. My hope is to inspire both physicians and patients to be persistently curious and vocal about unusual symptoms that are contrary to a person’s baseline.

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Ann Thane
Ann Thane
16 giu 2023

You are astonishing! You suffered through this for months and years, and yet have prolifically created work that gets better with each project. I am in awe... and your writing is compelling.

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Rachel Young
Rachel Young
24 giu 2023
Risposta a

Thank you, Ann. If you only knew just how much I was managing all those years, and working most of them as a full time RN. I’m getting ready to write more. I had to take some time and space from the story. I greatly appreciate your enduring support. ♥️

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