I contributed this article to the Hypoparathyroidism Association newsletter in October 2016 and thought I’d share it with you.
I recently had an experience that I wanted to share with my fellow Hypoparas. It had never happened to me before and I hope that it never happens again! Perhaps my recounting of the experience I had can help you understand what to look for in terms of symptoms if the same thing should ever happen to you.
At the beginning of September, I became severely nauseous, to the point where even water made me want to throw up. I didn’t eat much–some days almost nothing. This went on for two weeks. I lost ten pounds. This as you know if you’re hypothyroid, just doesn’t happen.
At the same time, I had issues with teeth in my upper jaw as well. Simultaneously I was cutting both upper wisdom teeth and squeezing the tooth next to them. I already had problems with receding gums as a result of radio-iodine therapy for thyroid cancer, which was now worsened by the teeth erupting through the gums. The dentist found evidence of decay on both sides of my jaw, despite all the diligent twice-daily flossing I’d been doing. He told me that the wisdom teeth and the teeth directly adjacent to them would have to be pulled.
Being hypocalcemic, there is always the possibility of dental carries with this condition. Knowing this I took it all in stride as par for the course. I also thought the nausea was tooth-related. Of course, severe nausea and the loss of that much weight should have been a red flag. I was tired, exhausted, not thinking straight, so the big picture escaped me. Also, since acquiring this condition, I had never had an extreme reaction like this, so I was a bit naive about it. I thought that I simply was not getting ENOUGH calcium. It never occurred to me that my blood had too much of the stuff.
Soon thereafter, bone pain began in my legs (knees to ankles). I also had trouble sleeping. My eyes were bloodshot all the time. I looked like a stoner. I was weak and listless and tired easily. Finally, on Sunday afternoon, September 18th, I was in so much pain, my husband decided it was time to go to the emergency room. Eight hours later, I was admitted with acute renal failure and hypercalcemia.
I was in the hospital for five days as they flushed my body with 1000ml bags of saline solution. I went through at least twelve bags by the time I left. Basically, for whatever reason, my hypocalcemic body flipped into being hypercalcemic, and my kidneys started shutting down, unable to cope with the elevated amount of calcium in my blood. My levels at admission were: calcium 14.5; creatinine 5.94; blood urea nitrogen 53; Glucose 117. My blood pressure was 198 over 84 and I was extremely dehydrated and basically, felt awful. When asked to rate my level of pain on a 10 scale, I rated it a 10.
I should point out that when I first arrived at the hospital, I wrote down that I was hypocalcemic and probably needed an IV. I had no idea that I had become hypercalcemic. The doctors assured me though that the symptoms of both hyper- and hypocalcemia can be similar and that I easily could have mistaken the two.
After a day or two of questions and research and back and forth between myself and the doctors, they told me that the nausea and bone pain were also symptoms of hypercalcemia. I didn’t know that. To this day, no one can tell me why my body did that. Sure, there were two days where I took some extra calcium thinking that I was severely hypocalcemic, but that didn’t account for what happened. My regular doctor is having me do blood tests more frequently to keep an eye on my levels now. Still, it was scary. And my poor husband…
I walk with a cane for now at least because the bone pain is still there (which means there is still excess calcium on my legs.) There’s nothing to be done but wait until it passes. There is no pain medication for bone pain, either. The most I can do is take something that will make me drowsy and think less of the pain. At least it’s not as bad as it was in the hospital.
I don’t know how long it will take to get back to normal, but at least I’m able to go to work, and I have lots of sick and vacation time I can use. I have a very sympathetic employer. I am quite fortunate for that.
Things to consider? Observe any changes in your “normal” physiological reactions. A fellow member of the Facebook Hypopara group said that with hypercalcemia, the symptoms often don’t show up until they’re extreme. So, if you’re feeling nauseous, have no appetite, and experiencing bone pain, feeling abnormally tired and cannot sleep, go see your doctor immediately. There is no such thing as being overcautious with this condition. Also, get your doctor to schedule regular blood tests, perhaps as often as every three months or even less if you have a history. You never know what can happen. I surely didn’t. I do now.
Finally, you say? I know, I know. 🙂
Seriously though, the digital album is now available. You can listen to it here: https://joannecarlson.bandcamp.com/album/just-jo-listen
I just want to say thank you for your unfailing support and love in this endeavor. I didn’t make my campaign goal, but I was still able to do the album, one way or another. The CD will be finished soon, too.
Wishing you the best,
May this year treat you well and your dreams come true! 🙂
I posted this on the campaign page as well, but for those of you who haven’t read it, here it is:
It’s been a few months since I last posted anything on my campaign. In the meantime, I have been hospitalized for acute renal failure and hypercalcemia–too much calcium, even though I’m hypocalcemic–too little calcium. My body flipped for some reason, and the doctors still don’t know why. I was in the hospital for five days. It was not fun. I walk with a cane right now because of bone pain, but that should go away eventually.
Still, I am in good spirits. And though I came nowhere close to making my $25k goal for (a) moving to Jamaica and (b) producing an album in Jamaica, as you know, I still made enough (thank you!!) that I feel I can put together some music, while here in the US, that I will be able to share with you soon.
I didn’t want any of you to have to wait until I am in Jamaica next September, and since that, for now, seems to be a moot point anyway, music-wise, I came up with another idea that’s more feasible. With the help of some friends, college students at SCAD, and a bit of creativity, I am putting together some songs that I hope you will enjoy.
I just want to say a HUGE thanks to all of you who took the time to read my story, spread the word and supported my campaign.
I appreciate it more than you know and wish you all the best! I will keep you posted on my progress as time goes on.