I’m taking a stroll down memory lane as I have some new followers and people new to my journey. So I just want to take a stroll down memory lane as I feel like I am finally in a place of true acceptance, understanding and most of all hope! Yes, hope…..
When I first was told that I needed to have my thyroid removed due to a number of large nodules, I literally thought it was going to be a blip on the radar. I knew many people who had their thyroid out without any problems. My surgeon made it sound easy peasy lemon squeezy. He said the biggest complication might be to have to take extra calcium supplements. So no biggy. I was not concerned. My biggest concern was scheduling it around my racing and training schedule. I purposely scheduled it two weeks after running the 2016 NYC Marathon. I was training for a 4:30 but blew it running the first half like there wasn’t a second half. That is and was a whole different post. LOL…
After the surgery, we realized by not just my calcium levels but also the severe tetany that something was off. So I was diagnosed with Hypoparathyroidism and so the journey began. At the time, my whole focus was keeping my life, my running, and everything the way it was prior to surgery. I didn’t want to make any concessions. I didn’t want anything too change and I wanted to keep doing what I was doing. I wanted life to be like the surgeon told me and just have to take some extra calcium and go about my business. Period. End of Story…. Or so I thought.
At the time, I was seeing and endocrinologist who also had this same mindset. He just looked at Serum (blood) calcium levels and called it a day. It worked. It probably would still be working, but there would have been consequences. There was no running other tests to see how all that calcium and Calcitriol was affecting my body. There was just, your calcium levels are good and call it a day. But the “problem” was that I did my own research. I found the Hypopara Association and learned because you know you only have one body. What I learned of scared me. So I found a doctor who was not only well versed in Hypopara, but so well versed that she runs FDA studies and is known in Hypopara community. So things changed.
So in 2018, I saw this specialist who was concerned especially after running a 24 hour urine calcium test and it was 578. Normal level is 200 and for Hypopara, she said 300 in good. This high level can lead to lots of issues and non of them good especially for the kidneys. So we adjusted both calcium intake and lowered cacitriol too, This brought my serum calcium levels down to the low 8’s which is makes me live in the low calcium zone. The trick is to keep it just in the sweet spot. Really fun without a home monitoring test, but that is a different story.
There was a blip where I was on Natpara, a hormone replacement therapy. When I was on that for 6 months, life was good. Both serum and urine calcium levels were good. I felt good. I felt like me. It was a thing of beauty… Right up until it was recalled. The medicine worked just as intended but the issue was with dispensing mehanism which is what made the recall so frustrating to to those of us who knew it’s worth. Not much to do but roll with it.
Anyway, here we are years later. I’ve learned so much. What I’ve learned and finally come to terms with……. I can run faster. I can run longer distances. I can do so much, but to me for now I realized that the tradeoff of adding the extra calcium is no longer something I am willing to do. My urine calcium levels are still high even with lower serum calcium levels. They are not nearly as high as they used to be and I am “happy” with that. I just realized that long-term impact on my body is not worth pushing for short term gain. That is why as much a I would love to train and run another marathon, it is no longer in the card till another hormone replacement therapy is available. It is just not what my body needs. Besides, I am hopeful as there are new treatments on the horizone.
Besides, my body even at this level can do amazing things! This year, I have decided to do an event a month. Nothing longer than a 10K but probably going to be mostly 5 K’s. I am lucky. I am finally content….. Most of all, I am still moving!!!