It was 2006, I was in my 20s and had finally decided to listen to my endocrinologist and have my parathyroids removed because my calcium levels were creeping up and I was getting more and more hypercalcemia symptoms. Up until this point, I pretty much pretended I was normal, and didn't have a rare genetic disease called Multiple Endocrine Neoplasia Type 1 that caused overactive parathyroid glands among other things, and tried to avoid anything medical related. I finally conceded though, mostly because I'd lived through a kidney stone that wouldn't pass after 3 weeks of pure agony and never ever wanted to feel that again.
At that time, the surgeon told me that having all 4 parathyroid glands removed and one transplanted into my arm was the way to go because that would prevent future surgeries into the neck tissue and it'd be easier to remove any overactive tissue from my arm. Having all parathyroid glands removed from the neck meant that my body would no longer be processing calcium the way it had before and that my blood calcium levels would drop. I didn't know how dangerous this would become at the time because of the way the surgeon explained it. He basically said, in a sort of condescending, ridiculing way, that people thought they were going to "die" but I shouldn't worry. No big deal...
Some of the parathyroid tissue would be implanted into my arm to help regulate the blood calcium levels in the future but I'd have to take calcium supplements until the tissue "took" and started working on it's own.
So after my surgery I was feeling pretty good and everything was fine. I knew I was to expect a sore scratchy throat and my arm was also sore from the implantation but I was handling it well.
A few hours later, 2 residents walked into my room and they had this look on their faces that I still remember. It was a look of trepidation. They told me that my calcium levels had dropped and they would be giving me IV calcium. Now I was joking with them because this is exactly what I was told to expect. I was told that the drop in calcium would mean that the surgeon had removed all of the parathyroid tissue from my neck and that was a good thing. A success. I said "ok why do you look scared? Isn't this a good thing?" I was starting to feel my lips and fingers tingle slightly and agreed that I should be getting some calcium.
What happened next, I found out years later, was extremely dangerous and should never happen to anyone. So, if you will be having parathyroid surgery soon, either understand the reason behind me sharing this isn't to scare you but to make you aware of how this procedure should not be carried out or how to advocate if it does (or perhaps skip this part and return to it after your surgery.)
A few minutes after the residents left my room I got this feeling of impending doom. It was overwhelming and I was scared so I called the nurse who came to check on me but couldn't see anything wrong. I told her I felt weird and that something bad was about to happen. She reassured me that I was fine and that they were going to give me calcium. I begged her not to leave me but she was a nurse and busy with other patients so she said to just wait a few minutes. She no sooner walked out of the room and all of the muscles in my core tightened and my back arched and lifted up and my abdomen was tingling- sort of like when your foot falls asleep but way more intense and all of my muscles were becoming so tight. I don't remember how but I pressed the call button right before my entire body wretched and every single muscle became as taught on my bones as they could. You see, calcium is a vital mineral that allows our muscles to relax and my body wasn't getting any. This scary episode is called tetany and what I'm about to finish describing is the most extreme version of it.
Within minutes there were hoards of medical people surrounding my bed shouting things. My hands were stuck in a weird position my arms too- like I was doing the chicken dance. My mouth was wide open and my cheeks were sucked in so hard it hurt. I could not move any of my muscles- not one. I could only move my eyes at this point while I was being poked with things. I think I was given vallium and an IV calcium was started. I'll never forget the intern that took my weirdly stiffened hand and sat beside me and held it while I told him with my eyes that I didn't want to die like this. I was also thanking him for recognizing that I was scared out of my mind and that he didn't leave me alone during this.
I slowly began to relax as the IV calcium flooded into my blood again. I also began to feel very high and out of it as they wheeled me into a spaceship. It took me a day or two to recognize that it wasn't a spaceship but I was in the trauma ward and had my very own nurse who would watch me have multiple episodes like that. IV calcium is very hard on the veins and as such my veins were calcifying one by one. They had to keep moving the IV and started putting them in my legs as well trying to keep the calcium levels up. I don't recall how long this went on for but it was exhausting and scary for me and my family members who were beside themselves watching all of this.
I would tell them as soon as my lips started to tingle that I wanted more calcium but they had this protocol that meant they would take blood calcium level and send it to the lab when I had symptoms. STAT meant about an hour before they got the results and by then I was already in tetany again. It was completely ridiculous to me that they would even wait every time at all. Just give me the darn calcium!!
I thank God for my Mom who recognized that something needed to be done and she promptly called my endocrinologist who had to step in and take over my care. He made sure I started to get calcitrol so that my body would actually absorb all of this calcium! Finally, finally the tetany episodes stopped and I was on my way to recovery.
I was completely black and blue from all of the damaged veins and terrified of that ever happening again after all of that. I actually developed panic attacks because of this and also found out that low calcium levels cause anxiety as a physical symptom. This scenario taught me so many things- but most importantly taught me that no matter what, you need to trust yourself and advocate for yourself! If something feels wrong your body tells you! Don't be shy about telling people what you need. Make sure you have someone to advocate on your behalf when you're vulnerable.
I did have to have another parathyroid surgery in 2015 because my levels were getting high again. I had a new surgeon this time and we went over the horrible way things went the first time. He reassure me that he wouldn't let that happen but guess what? I gave my husband the direct number to my endocrinologist beforehand because he knew about all of that stuff. And sure enough the hospital followed the same darn protocol! So I had symptoms, they took my blood. "STAT" 🙄, and boom I was in tetany again. Not nearly as bad as before thankfully but you darn rights my hubby was on the phone immediately to my endo. The resident that came to give me my IV calcium lectured me that she almost had to let a patient die to come "just to give me calcium". She made it out to be that the tetany was all in my head and it wasn't also life threatening!! Do not ever feel bad for advocating for yourself. I found out later that these tetany episodes can cause you to go into cardiac arrest and as far as I'm aware they do not let the calcium levels bottom out on purpose because of this.
Eight years have passed since my last surgery and my PTH levels are high again. I'm struggling with joint and bone aches, muscle weakness, extreme fatigue and have lost motivation to get out and do things. I have some brain fog and horrible recovery after any physical activity. Almost like fibromyalgia symptoms in some ways. And my endocrinologist insists that since my PTH levels aren't really that high, and my calcium levels are on the high end of normal, that none of these symptoms could possibly be from elevated PTH levels. Well...we don't always see eye to eye...
In hindsight, I would not have had parathyroid tissue implanted elsewhere in my body because in my case they aren't sure if it's the minuscule amount of parathyroid tissue that is left in my arm or an entirely new growth somewhere in my chest that is causing this. So far there isn't a scan that has been able to pick it up either. Unfortunately when they cut into the parathyroids if even one drop of fluid drops into the incision it can start a new parathyroid gland to grow! If I were to do it again I think I'd opt for the 3/4 removal instead: avoid tetany & avoid another site where the tissue can grow.
I have, since that first episode, become a tigress when it comes to advocating for myself and my loved ones. I've thoroughly educated myself on my disease through online publications and in my online support groups. I don't take any new medications or have any procedures done until I fully research them myself and find out exactly how patients that take it or have it done actually feel.
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