How my parathyroid was sucking the life out of me

Back around 1997-98 I had my first bout with kidney stones. I don’t remember if my friend Audra Huelsman drove me to Miami Valley Hospital ER- or was the one that picked me up, but going in I could barely stand up. I remember lying on the gurney tucked into the fetal position. They gave me a shot in my butt- without telling me what it was. 10 minutes later I could dance right out of there. Welcome to my first experience with morphine. Now I knew how guys in WWII stormed machine gun nests despite being shot 5 times.

I started feeling like I had lost my “energy” around 2000. I went to my family doctor, I went to another. I started dating a girl in Cincinnati- who recommended me to a guy who specializes in cholesterol. He found that my triglycerides were at 1200 (normal is under 100) and started me on some meds to put that in check. I felt a little better, but I still didn’t feel like myself.

After eating, I’d often get tired- or feel a wave of depression. I started having reflux, and felt that eating more would help it go down. I’d have a pain in my lower, right side- toward the back. I wondered if it was my gall bladder, appendix or later my adrenal gland. In the last year, my memory seemed to be not as sharp- I found myself hunting for words.

Last September, I went to the hospital again for kidney stones. This time, they weren’t coming out without help. I had surgery to break them up- and a stent put in, and then a second minor procedure to take the stent out. I was sent to an endocrinologist for the first time. He ran tests. Vitamin D was low, calcium was high, PTH- the parathyroid hormone was elevated. He did more tests. 2 biopsies, 2 nuclear scans, multiple ultrasounds. He thought is might be my parathyroid, but wanted to be sure.

I didn’t even know what a parathyroid was, or what it did before that. A friend, Jen Alexander, pointed me to the website of a doctor in Florida who runs an assembly line for removal of parathyroid glands. Reading that site, www.parathyroid.com ^[1] I learned more than I could ever need to know. There was no need for more tests- it just had to come out.

My grandfather, who was an MD, used to poke at my neck when I was 12 or so- wondering about my thyroid. My grandmother had had hers removed with radiation in 1948- when they were in the first stages of using all the new-found nuclear toys to do new things in medicine. All of my life I’d heard about the thyroid- but never the parathyroid. The parathyroid is actually four small glands that are supposed to be the size of grains of rice that sit on the thyroid- right next to your vocal cords. They are supposed to regulate calcium in your body. When one goes crazy and starts producing too much hormone, the others go dormant. Your body starts sucking the calcium out of your bones- and often times, makes kidney stones. But it also can do all kinds of other things- like be misdiagnosed as fibromyalgia among other things.

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On leaving the hospital, the purple was marking the surgery- the scar below is the parathyroid scar.

Then came a few delays in scheduling which were frustrating me no end. Falling asleep while reading, feeling sore and stiff when waking up, all these things were driving me nuts. Never mind the recurrent kidney stones.

Yesterday, around 8:30am I went under the knife at the Cincinnati VA by Dr. David Steward, and got at least 1 oversized parathyroid removed. I have a scar at the base of my neck that follows a fold. The stitches are all internal- and there is a clear glue protective coating on it. It looks like someone tried to garrote me with piano wire- and didn’t finish the job.

My neck and throat were sore as I left the hospital around 1 p.m. They were still sore today- although it’s getting better by the hour. But the way I feel is magical. The haze that hung over me, the feelings of depression and tiredness are gone. I feel a clarity again that I’ve missed for so long, it’s as if I’ve been given a whole new life.

To think that I’ve spent the last 13 years thinking this was just because I was getting old, is a little bit depressing. I’ve always reminded people that doctors are “practicing” medicine – as in they still haven’t got it perfected, but right now- despite being sore, I feel like a gazillion bucks comparatively.

If you’ve had kidney stones, or if you’ve felt like you’ve had a loss in energy, or feel depressed after eating- I highly recommend you do a little research and have your PTH, calcium and vitamin D checked. Apparently, parathyroid disorders often go misdiagnosed for years.