Tag Archive | calcium

How Did I Get Here?

Mar23

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…

Anywho….

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!!!

Nov17

Some people might think because I run marathons that I never suffer from issues from my Hypoparthyridism. They would be wrong. It just is part of the routine now.

Case in point

Claw hand

Yesterday, while cleaning kitchen. Not doing anything out of the ordinary. Unless you count really doing a deep clean. Hmmmm

I think the difference is that while running though, I really pay attention and adjust. During build up of the miles in my training for marathon, I pat attention to the signals. Monitoring when hands start to get tingly. Pay attention to how hard to push before adding more calcium. It is all so random to be honest and changes all the time. Things that always effect it though are temperatures when running, pace and how hard I’m pushing, time of day, time on feet, and really what the calcium Gods decide. At least that last one feels pretty accurate.

One thing that I realized during a training run is definitely extra calcium is required before mile 10. It is always better to keep the levels up than try to recover from when the hands start to tingle. During training if it was a longer run, I would make sure to take my morning dose of calcium and calcitriol before running. If it was a shorter run, I would take it as soon as I got home. If it was a LOOOONG training run, I might add extra calcium powder (Calez) to my water. If it was a hot day, I would do the same. Regardless though, I always kept a pack of the powder with me because some days I needed it and some days I didn’t, Really is a crap shoot.

On marathon day and the day before, I did some preparation. In eventing before the marathon, I took an extra dose of my Calcitriol because normally I aim to keep my blood calcium levels at just below or at the the low end of normal. So I didn’t want to go into the marathon with low calcium already. Then the morning of before I left at the super early hour of 6:00 AM, I took my morning dose which normally I don’t take until 10ish. Then I packed with me my normal meds but taking an extra dose with me as it was going to be a long and hard day. I wasn’t starting until 12:00, so I had to bob and weave before the bob and weaving actually began. So around 11:00 am or so, I took another dose of calcium and calcitriol which really would have been my normal time. Then I made sure to add Calez to one of my water bottles to have along the course. I saved another dose of my calcium, calcitriol and magnesium for when I finished. Easy Peasy Lemon Squeezy.

I will say that I think for once I ran a smart race. It helped that I ran the first 16-17 miles with a friend. I think we kept each other in check. We ran paces that were sustainable. We ran smart. We also walked when needed but also encouraged each other to push ourselves to run. I ran a much smarter race when I was running with her. I would have loved to have run the whole thing with her, but we split up when she needed to stop for a bathroom pit stop. At that point, I really was afraid that if I stopped that it would be too hard to start up again. My legs were dead. My foot was hurting. Stopping was not an option for me unless I wanted to call it a day.

So I kept on going……

And going……

And going…..

At first I did not run as smart as I did when I was with Rosa, but I caught on to my stupidity. So I tried to run smarter. I walked more than I probably would have than if I was with her, but the pain was real.

But so was the joy….

The bottom line though was I still got where I wanted to get which was the finish line.

Yes, I know you’ve seen this photo before, but I do so love it.

Everyone who runs a marathon has hardships that they push through to get to the finish line. It wouldn’t be a marathon without it. This is just part of mine. Before becoming Hypopara, I didn’t have to take into account medications and added calcium, but that doesn’t mean there weren’t different challenges. As they say…….

If marathons were easy everyone would do them. I’m just too stubborn not to do what I have to do to get to the finish.

It’s Complicated

Oct9

In a relationship with food?

My relationship with food is complicated. Always has, but hopefully always won’t be. It does have a past though…

As I have said before I was the fat kid growing up. I may sound like a broken record when I say that but for some reason it stays with you. This may have been made more complicated by the fact that I literally had a balerina/Ms Teen USA older sister and lots of other dynamics growing up. Although they may speak more to body image than food relationship, but there is always a correlation.

When I think of my childhood some of my happiest memories are around food. I remember making fudge on the farm with one of my sudo Godmother’s as a young child. I remember my brother’s and sisters making Christmas cookies while listening to Christmas music (The carpenter’s) on an old record player. It’s funny too because I have a horrible memory when it comes to my early childhood but these standout. These are good memories.

I also have the stark recollection of my childhood doctor talking to my mother about my weight and giving her a diet I needed to follow. Do doctors still do that? I mean if you look at the pictures of me as a child, while I was not the ”ideal” weight I also now think this was extreme. Then again, I grew up in the 70’s, so I am betting times have changed. Based on where we lived (we moved several times, so this is how I tell times of my childhood), I would guesstimate that I was probably in 5th or 6th grade. Anyway, I remember getting into trouble for having an extra packet of oatmeal for breakfast. I don’t even remember the trouble (wouldn’t have been more than Mom saying something), but I remember the feeling. (Also in my Mom’s defense, she was deferring to the doctors and again this was the 70’s).

I would also like to give exhibit A to this story……

On the left and adorable but I didn’t know it at the time
On the left again and at that very awkward stage but still not at a level that screams in need of diet

So as I share these stories, I wonder if anyone else has thought about their complicated history with food and how it effects them now?

I have started to think more about my food choices. I have started to think more about my relationship with foods, how it effects my body, and what better choices I can make. For the most part as an adult, I really have never thought about these things. Yes, I have thought about what I want to eat, where we are eating, and all of those things; but I have never really given food choices much thought. I’m hungry. I eat. Not why am I hungry. Why am I hungry for XYZ and why am I making the food choices that I am making and are they really good for my body, my health and my mental well being. That last is in reference to when we gorge ourselves on chocolates, cookies, or what not and how it makes us feel later. You know the… I should not have eaten all of that food guilt/shame.

Recently I had a consultation and then my first session with a Holistic functional nutritionist. In just talking with her these two times, I have started to think about my food choices more. Her open ended questions of simple things….. What if your replaced X with Z, how do you think that would make you feel? Why do think you NEED to have a snack at night? Are you really hungry or is it just habit? She is a runner who has run several marathon’s and I feel this helps. She has also said, we will do no major changes to my diet until after the marathon although changes have already started to occur just in thinking about things. Plus in looking at my diet, she has already pointed out that I need more protein and I also need more water which I can and should implement right away.

For me, this is about my health. This is not about number on the scale. When she asked me what I wanted out of our time together and what our goals were, I thought of my Grandmother. A woman who drank nothing but probably coffee or iced tea. Who never went to the doctors and if she did didn’t really listen to them. Who smoked right up until she kind of forgot she did when she had stroke. Who up until the end was the healthiest unhealthy person you could have met. I said to Lisa (my nutritionist) that I worry with my hypopara and the toll it takes on my body (thinking long term kidney health), having to now use a CPAP machine, and now peri-menopausal that my goal is to be the ”bad ass woman that I was meant to me” channeling my Grandother.

The original badd ass woman

So this is my new life motto:) Ok, it may have already been my unoffical motto but I thought about it now.

So with this in mind, I have started implementing minor changes that are really not so minor but they don’t feel life altering which makes them easier to stick with.

  1. Start my day off with a glass of water before coffee. Preferably with lemon and continued through out the day.
  2. Instead of skipping breakfast or worse grabbing something aimlessly that really offers no value, I have started my day with smoothies (Go to my instgram to see them). I do not feel like I am giving something up and hubby now benefits because I make smoothies for 2. It’s kind of like a game now where he tries to guess what is in them. Besides being tasty (a pre-rec for anything I make), it is packed with nutrients and are filling.
  3. Thinking about what I am actually eating has made me want to eat better.
  4. Realizing that some eating is really just habitual and better choices can be made.

Lisa and I have talked about my Hypopara especially in our initial consultation. Some holistic groups I’ve been in are very anti-medication/supplement and feel like you should get everything naturally. Before working with her, I wanted to make sure not only did she understand but was on board with my circumstances. As a person with hypoparathyroidism, my body does not produce the hormone PTH which helps to regulate many things but Calcium is the big one. I also no longer have a thyroid. Because of these two factors, I take a boat load of pills a day. This is just the way it is…….. Some such as my calcitriol and thyroid meds are a must as is the vitamin D, magnesium, and, of course, calcium supplements.

All that being said, though, as I am entering this journey adding more natural calcium to my diet……. I am beginning to wonder if maybe….. just maybe…… instead of taking calcium supplements 4 times a day……. maybe just maybe….. I only need them twice a day, I could replace one or possible two of them from a food source. Would that be better for my body? Would it help me with my kidney health long term. More importantly for the short term, would it keep my calcium levels where they need to be?

These are things rattling around my brain and only time will tell.

What is your relationship with food and have you ever thought why?

PS – here is Lisa’s info – https://www.embraceyourwellnessjourney.com/blog