I’ve been talking a lot about my pre-training for my October Bethlehem Running Festival races. Pre-training will officially turn into training this week.
What does the week look like now that it’s go time.
4 mile run
5 mile run
4 mile run
7 mile long run
Am I ready for this level of training? I guess we will find out. Here is what I do know……
I am down now over 15 pounds thanks to following WeightWatchers!
I am 100% off all supplements and currently my Yorvipath dosage is keeping my calcium stable. I’ve gone for several runs in the heat, with fast paces, and even shortly before my injection was due without issues. Fingers crossed this keeps up.
I will say that I feel once again like me. I will also say that after Natpara getting pulled once I got used tot his feeling that part of me worries that something similar will happen. Although I don’t think this will get pulled, I think my concern is more about insurance suddenly not approving it. It is nice not to constantly deal with effects of low calcium and have a stable level at 9.6!!!
With that being said, I do feel like I am at a good place to begin this training plan. There are no excuses. If I follow the plan it is on me. If I don’t it is on me as well. As long as my Yorvipath continues to work, I need to do my part.
Currently, I am totally off Calcitriol and only taking one dose of calcium. Last bloodwork was taken when I was taking two doses of calcium. Corrected calcium level of of 9.7. I have yet to get bloodwork with the one dose.
This weekend I went out for two runs.
Saturday
It was HOT. It was humid. I got out early, but really didn’t matter. I am in pretraining for the Bethlehem Running Festival, so I am just testing things out. I also am testing how I feel with Yorvipath. This will give me ideas for training and goals.
Got out the door and about half mile in I realized that I didn’t take my morning calcium since I left earlier than I normally take it. Figured this would bee a good test and I wasn’t worried because I had my extra calcium. So I just kept going. I will say around mile 2 I felt a little tingle in my upper arms. Could have been just due to the heat, but I took my calcium just to avoid any issues especially since I don’t know levels.
Not too bad:)
Today, I intentionally went out not taking my morning calcium as a test. Don’t worry, I was again packing my morning dose. It was still warm but not as hot as day before. July humidity that’s for sure. My today was just to run a decent pace and run the whole thing without walking. While I did again stop to take calcium around 2 miles, I did pretty much run the whole way. I’m not sure if I necessarily needed calcium physically as much as mentally I needed it. Better safe than sorry.
Today was a beautiful run with negative splits, pushing myself but still feeling I could push more.
I am still not sure if the heart rate was right today as that seems low. My resting heart rate is normally in 70’s an I’ve had to watch heart rate from going too high previously. So something to watch. Other than that I really couldn’t have asked for better run.
Sorry that I didn’t update sooner. My keyboard died and I needed to get a new one:)
First world problems. I know.
Anyway 2 weeks on Yorvipath. I’ve gone for blood work twice. They have both been good. Corrected calcium levels were in the mid 9’s. For those not versed in calcium levels, anything under 8.5 is low. But I have to say it is more than just calcium numbers. I feel like my body is working again. Probably because Yorvipath is actually replacing the hormone my body is missing.
I am still in the beginning stage. I am adjusting dosages while lowering daily pill intact. Exciting stuff is that I am no longer taking any calcitrol and still in the 9’s!!!!! I am lowering my dosage of calcium supplements. The goal is to stop them too. I am down to 2 doses a day. More blood work to follow. More adjustments to follow, but it is already worth it.
Right now the biggest side effect I have is bruising from blood work and redness around injection sites. You inject in either belly or thighs and rotate sites. I have also had some leg pain, but not sure if that is from just all I’ve been recently doing. Monitoring.
So now……
WHAT HAVE I BEEN DOING?
Well the first week, I admit, I took it very easy. I did not work out. I also had a busy week with school, so I didn’t have a lot of extra time anyway. Then after a week an half, I started at it.
One night I wanted to just run. So I did!
I felt winded. I felt like I pushed myself, but what I didn’t feel was the Hypopara symptoms.
Then I went for a 4 mile walk/run with a friend. I followed that with going and getting ten forty bags of mulch and doing some gardening. IN THE HEAT! I hydrated. I took breaks. I did all the things anyone would do and I felt like I could do it!
Then the next day I went for a three mile run on my own. I tested out a running vest. I ran pretty much the whole thing except for walking to drink as still figuring out the vest thing. No symptoms.
Then I did some more gardening and mulching.
Then the next morning I did more.
All the while not feeling ANY symptoms of low calcium.
If you’ve been here a while, you know about my Hypoparathyroidism. You know the struggles. You know I’ve been waiting and hoping for getting on a hormone replacement therapy.
I started the process. I expected to have to fight my insurance company for approval. I have been pleasantly surprised. I got the call that I was approved.
Then I got a call on Monday that it would be shipped this week. I spoke with the nurse who walked me through the process of the daily injections. I spoke to my doctor and was ready to go.
Logistics:
Went for blood work prior to starting. (Side-note – what I found funny is that my levels were good, but I was still symptomatic with muscle spasms that night)
I am starting on the middle dosage injection.
Going from .25 Calcitiol three times a day to once.
Keeping calcium as normal while body gets used to it.
Going for blood work in three days. Will touch base with doctor and go from there.
Physically
Just going by feel now. Took first injection this evening at 8 pm. I really had to think when I would take it as has to be same time every day. Mornings too crazy especially now while this is all too new. Plus I am usually home in evening.
Mentally
I’m worried about low calcium during transition.
I’m worried about high calcium during transition.
I’m excited. I’m nervous. I’m anxious. I’m all over the place.
At the heart of this though, I am looking forward to my body working the way it should again.
Today, June 1st, is Wold Hypoparathyroidism Awareness Day.
If your not part of Hypoara community, you probably never heard of it. That’s ok, I never heard of it till 9 years ago when I joined it after my thyroidectomy in November of 2016. I joined the estimated 70,000 to 100,000 individuals in the United States who deal with this…
Told you I was rare:)
Anyhoo…
As I told my family when I had a serious calcium crash recently, I carry it well. Or at least I think I do. Maybe I don’t, but it’s my story to tell. So I go with I carry it well.
I do what I need to do, deal with what I need to deal with, and still know that there are those with much worse complications than I have.
I am lucky.
Yes, I have to take my daily pills
Yes, I deal with low (Hypocalcaemia) calcium symptoms….
I am lucky because due to the location I live in, I have been able to learn from and be treated by an endocrinologist who not only is familiar with this disorder, but also is a leader in the field. She runs FDA studies which I’ve been also lucky enough to participate in. I am currently half way through a 3 year study on how Hypoparthyroidism effects the body. I feel like without her guidance, I would be in a much worse place physically as the I saw 2 other endocrinologists since being Hypopara. The first one I saw right after diagnosis had no idea and had me taking way too much calcitriol. My first 24 hour urine which I got after starting with My current endo had levels almost 600. (Normal is under 300. For those with Hypopara, try to keep under 350 which I am)… High urine calcium levels can lead to kidney issues.
Anyway…. Many people ask what exactly is Hypoparthyroidism as they say they take calcium too.
Many people ask, “What does this mean?”
Here is the science part:
The Parathyroid’s job is to create PTH (Parathyroid Hormone). With HypoParathyroidism, your body no longer produces this hormone which controls calcium levels in your blood as well as phosphorus and vitamin D too.
The reality:
Without PTH, I need to regulate my calcium among other things through prescriptions and supplements….
Calcium and calcitriol
I need to do this multiple times a day to keep levels up. It is a balancing act as the healthy body normally adjusts these things on their own. Also needed levels change depending on activity levels, stress and daily factors up to and including the weather. It is not one size fits all. As I’ve said before, think diabetic adjusting levels without way to check insulin levels since calcium can only currently be checked with bloodwork.
Symptoms/levels can and will appear/change whenever they feel like it. Symptoms from brain fog, muscle cramping and spasms,fatigue and more…. I work very hard to be business as usual
Sometimes that doesn’t work out so well.
A crash like this is a rare occurrence for me. This was a bad one. My doctor understood why I had my friend drive me home and not go to ER for calcium infusion. As I said to her, I knew I had the meds at home to handle it and was afraid at how long it would take to be treated/understood at hospital. The concern for extreme crash would be “cardiac event” as she called it. So there’s that, but I knew the meds were working, and I do not play with my health even if it seems like I do. I was in contact with her immediately after and she directed me in my recovery.
At my last visit, we did discuss how while this crash was bad how I have been more symptomatic recently….more the tingles, muscles cramps and such. We are starting process to get me on the newly FDA approved hormone replacement therapy. It will be a song and dance to get approval as it will be no surprise…… IT IS MAD EXPENSIVE. Like big, big, big expensive.
So we shall see, but there is hope soon…. crossing fingers and toes!
So on this World Hyporathyroidism Day, I share with you that I know we all have our own struggles, that we are all rare, and that most of all we just keep need to move forward.
When I started training for the Brooklyn Half, I thought realistically that a 2:45 was not out of range with enough training. My last two prior half marathons have been just under 3 hours. So it was not unreasonable to think with push and training, it could happen. It was a reasonable A goal.
As you know, training had been going well right up until I hit a few speed bumps with my calcium. I missed some runs due to not feeling up to it and then there was the whole fiasco of the calcium crash.
In speaking to my doctor, she was advising on the side of caution. She thought it would be prudent not to run. In talking though, she said if I didn’t push and did a lot of walking that would be for the best.
That was the plan…..
So how did it go……. Here’s the recap
I prepared the night before. Carefully not only laying out my clothes, but also getting all calcium/meds ready to go. Taking extra just in case. I decided to go back to adding powdered calcium to my water. Thinking that I would take plain water at water stops which worked well. On top of that, I took a dose of my calcitriol/calcium at 4:00 am before leaving for city. I also upped my normal calcitirol dose at this time.
The morning of the race started off with alarm not going off leaving me 20 minutes to get ready which is why it is good to have everything ready to go. Nothing was forgotten.
Get into the city to find that the parking that NYRR said was available was not in deed available. That provided some added stress as we were parking at the finish line near Coney Island and then needed to take train to Prospect Park for the Start. We were lucky to find a small lot that actually was very reasonable at $20. Dawn was right when she said, “they could have charged double and we would gladly have paid.”
Then off to the trains to go to Prospect start. Get to the Corral for our 8:20 start time. Before the race started, I took my normal dose of calcium/calcitriol. Then go to start my watch and realize that for some reason my Garmin did NOT charge!!!!!!!
Now I wasn’t running for time. I was planning to listen to my doctor, but I’m still a runner and like my tracking. I also thought it would be good to keep me in check as I do tend to start off too fast in big races. I also run faster than I can maintain or should be, but it was what it was.
I was running all on feel.
It was strange not to have a watch to watch. Although out of habit, I looked at the blank screen several times during the race. I took off at what I felt was a comfortable pace. I was feeling good. Then at the 5k water stop, I saw the 2:45 pace group and realized thats not where I should be.
I had to remind myself that my goal this race what not so much a time, but to keep my levels in the zone. I also realized that the conditions were very similar to the day I had the big crash. It was HOT. It was HUMID. The heat is not my friend. I was sweating.
With exercise everyone burns through calcium, but their bodies usually replenish by taking from bones. No worries though because this is a normal process and is actually good for bone health. For those of us with Hypoparathyroidism, this does not happen. There is no calcium regulation. So as our body burns up the calcium through sweat and heavy exercise, it must be manual added with our supplements and meds. Downside is that we just have to make educated guesses when to add.
Yesterday I hit it right – with the added meds and I do think the added calcium in the water. My doctor said it takes about 20 minutes for the meds to hit which is why it is important to add before feeling low. So thats what I did.
So I ran by feel. I walked a lot. I reminded myself that I did a lot of walking in training. When I walked, I power walked. When I ran, I ran by feel.
As you can see I did start off too fast. I adjusted. There were times that I thought I could/should run and push myself. I reminded myself that I needed to finish a smart race. A race that was more about being smart. I had no idea what time I was going to finish, but honestly this was my B goal.
It was a good day. A day to prove that I can do hard things.
Last week I’ve been dealing with low calcium symptoms. Nothing major, but knowing that I needed to dial it back a bit.
I skipped a couple workouts. I just couldn’t seem to get to where I should push it. Cramping, muscle spasms and such. Didn’t help that I also forgot my pills at work one day . I was a hot mess.
Muscle spams
Nothing major, but it went on for a bit. Here is the thing, you have to listen to your body. My body was saying slow it down. Besides this close to the haf, it wan’t going to make or break me.
Sunday I went out for my long run. I procrastinated and procrastinated until it was time to go…. I just wasn’t feeling it, but thought it was just that pre run don’t want to go.
So off I went.
Around mile 5 I took a 250 mg calcium. Usually on long runs I do this around mile 6. By mile 6 I decided to take another 250 and my calcitriol as I was feeling tingly fingers. I knew at this point I could no longer push it running, but I really wanted to get the miles in.
So I got them in,
Done in is done and that is all that mattered. I am glad that I got it done and glad I didn’t push it. By time I got home I needed to add some more calcium.
I was toast…. But as someone said
10 miles is 10 miles.
Made sure to rest, recover and take my calcium
Two days later, I am back on track on back on my training schedule. Yesterday was rest day.
Just like I say, I need to train for the weather; I also need to train where I’m at. I could have calcium issues on race day and this will also help me to be prepared.
It is not an exaggeration to say I was at my peak as a runner in 2016 before my surgery. I had only started running in 2013 with the couch to 5K. By 2106 I was on my 3rd marathon chasing a sub 4 marathon and even ran a 50K. I felt unstoppable. I was working with my running coach who helped me meet many goals even a sub 2 half marathon. I was even 25 pounds lighter.
I timed my thyroid surgery around running the 2016 NYC Marathon.. At this point we all know what happened so no need to rehash. (Search posts to see how crashed & burned). I even ran the Runners World Hat trick as training for NY.
Here is the thing though while I’ve never let my Hypopara stop me, sometime it beat me. In 2017, I signed up for at the time the Runner’s World Bethlehem Festival quadruple play. I ran the trail. I ran like I didn’t have Hypopara. I finished the trail race and called it a weekend. I just didn’t have it in me to run the rest of the weekend. It beat me. This was my first DNS (did not start) for the other races.
I admit that I wasn’t trained enough to even think of running 4 races. Hypopara was still to new to me. I didn’t fully understand it and how it affected my body. It took me years and I’m still learning as it is always different, but I’ve learned.
I always figured that I would go back, but then the event was cancelled. Then a few years later, they brought it back as the Bethlehem Running Festival. This is why this past race weekend was so important.
It wasn’t about the bling….. which is very nice.
It wasn’t about feeling like a badass….which I kinda do now
It wasn’t about anything….
It was about proving that I could do this… even with hypopara.
I can’t explain why this event was important for me to finish, but it was.
Today’s run was definitely a mental one. Yes, it was physical because I was going for between 8-9 miles; but I was in my head a lot before lacing up.
Every run is a mental run from the procrastinating to the lacing up and getting out the door. There are so many reasons not to run. There are so many reasons to push yourself to get out and run too.
I needed to get out of my head today. I needed to remind myself that I can do this. I would be lying if I didn’t say that last week scared the crap out of me. I would be lying if it didn’t cross my mind to stop pushing so hard, to stay home and just say I’m throwing in the towel. While on my Hypopara journey, I have had tetany before. I have had muscle spasms. I have had the tingles, the brain fog, and been symptomatic. The difference is that I always felt like I still was in control as these symptoms were more annoying than anything else.
I won’t go into again, but last week’s calcium crash was bad. It scared me. It stopped me in my tracks. It reminded me that this is more than just annoying. This is real and needs to be taken seriously. I liked to pretend that it wasn’t and wouldn’t stop me. Honestly, I’ve been more worried about my kidney health than the actual Hypopara symptoms. I realized that I needed to take BOTH as seriously as I should.
This week was a stressful week at work. It was also the first week without summer hours. No longer leaving at 3, but 1. Doesn’t sound like a lot, but for those who don’t know I am also a childcare teacher. This means I am on my feet and really in constant motion both mentally and physically all day.
I wanted to run this week, but I didn’t. I could tell that I wasn’t ready. Yesterday I just didn’t have the energy. I had stayed up too late baking a cake. Oh yeah, I’m also a home baker. So yesterday I didn’t run.
This morning no excuses…. Except I was nervous. I prepared for my run giving myself an half an hour for morning meds to kick in. I filled my water bottles. I have the Fitletic running belt. So I filled 2 with water and one with electrolytes. I then put into the belt some kind nut bars, extra meds, and off I went. I also put back on my running Id that has contact info and also a “Hypoparthyroidism check calcium.” I had gotten a new band and never put it back on. I got complacent.
I started off running streets close to home making grids for the first three miles. I stayed close to home for the remainder of the run too. Not going too far out which sometimes I do for a longer run. Today was about keeping a comfortable pace. Walking when needing to, but not just because I want to. It was about listening to my body. At around 5 miles, I added some full in the form of some of the kind bar. At around 6.5 miles, I took 250 of calcium. Half of my normal afternoon dose. Then just kept moving.
I finished. I got to 8.5. At the end of the run I was thinking of doing a few streets to get to 9, but I figured this was enough……. And it was!
Mentally my head is back in the game. Mentally I know that I can do this but have to be smarter.
This past week I feel good about all that I accomplished. Going into this training plan, I recognized that I would not be able to follow it to perfection. that being said, I do want to follow the training days if possible even if I don’t follow the miles. I feel for a variety of reasons that it is not in my best interest to run every run. I plan to substitute biking for running, some elliptical and who knows maybe even swimming. The swimming might be a stretch.
As I’ve said before, this plan is to train to run on tired legs. Ha! Anyway, I only missed one workout this week. I did switch training days, biked instead of ran, and just did what needed to do.
I am trying to go into this training also by not adding any extra calcium to my daily intake. When I first became hypopara, I trained like I had no issues. To be honest, I had not because I was keeping my serum calcium levels up, adding extra calcium for long runs and just going about business as usual. Right up until I took my first 24 hour urine test and it was well over 500. I’ve adjusted, but since being Hypopara the only time my 24 urine test came back normal was when I was on Natpara. As for now, levels while still hi9g are in the mid 300’s. I’ve been lucky so far not to have nay issues with these high levels. Except, of course, for the anxiety it brings.
So with my training, I don’t want to add extra calcium just for the sake of adding it. I’m will add if necessary if I feel like my levels are dropping. You know that whole guessing game since there is no at home calcium test. Anyway, this means I will try to plan my training around when I’m taking my pills. So far so good. I’m sure once I go for longer runs I will need to adjust. Adjust here. Adjust there.
Sunday run. Taking on some hills too.Literally dripping when done
I have been also working on controlling pace. A work n progess
This week coming up, I already know instead of an 8 mile run that I will turn that into a 24 miles on the bike. From what I could find online the ratio is 3 bike miles to 1 running miles. That is what I’m going with.
Felling good. Tired, but a normal tired and that is all I can ask for. I’m falling asleep as I type this, so I think it’s time to say goodnight.
The Accidentally Running Mama 