It seems like training lasts forever and then before you know it the race is around the corner!
Training has been going well. While I have not been sticking to my trianing plan 100%, I feel confident in my training. I’ve been for the most part hitting all the long runs or the multple day runs.
As a reminder, I am training for the Bethlehem Running Festival which consists of 3 days, 4 events totalling 26.2 miles. I’ve done this event a few times and am excited to do it again. I wasn’t planning to do this but got talked into it by my son and his girfriend to do it with them. How could I say no?!
Todays run was 11 miles. It was hot today. I’ve been having some very minor low calcium symptoms .
Dancing muscles as I call them. Technical term is muscle spams.
I’ve had a few other very minor symptoms. I had blood work done Thursday and my levels were just at the low level. My doctor plans to up my Yorvipath dosage, but since it’s a daily injection I need to wait for new pen. The pen has 3 different dose levels and my current one is already the max for the pen
So in order to make sure that I didn’t have any issues, I put some powdered calcium in an extra water bottle that I took on the run. My thought was to just see if I needed it. Well since it was in the mid 80’s, I needed it. I didn’t wait till I felt like I needed it, I drank it preemptively which I’m glad I did. When I got home I did show minor symptoms but nothing to worry about.
The run was hard. I took it easy and tried to be consistent. The heat made the run not as enjoyable as it has been but you can’t pick your wheather. I feel like I am ready for this event, but we shall see.
After stretching, I made a protein calcium packed smoothie.
I am starting to form ideas of how I want to run this event. More on that this week. As its tine for some rest
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.
Yesterday I met up with a running buddy for our last 10 miler before Brooklyn. Two weeks to go. Training has been going ok, but as I’ve mentioned I’ve been having some low calcium issues. Nothing to write home about, but I know I’ve been low. When you know you know.
So Dawn and I set off. We had no plan or pace, but we kept each other in check…. Kept from running too fast, too slow or too much walking. We met at a park and got looped back around mile 6. I have been adding calcium/cacitriol at this point. I could tell that it was time as I was getting a few finger tingles, but nothing too bad. Took my pills and refilled water and off we went.
I started lopping back to the park only for Dawn to question. I had gotten confused and then was sad to realize that we had more miles because we would have gotten bak at 8 not 10. Oops…. My bad.
We change it up and get back to the park at 9.75 and we get it to 10 in the park. All is good although I’m happy to be done, but nothing too bad.
We take the required picture:)
Then we head off to our cars to get water and at this point I’m thinking I want to take some more calcium. I had been feeling tingles in hands during end of run and now was feeling it in my upper arms.
As we are talking, I get my pills. I start with 1 calcium. I immediately rethink and decide to take 1 more and some more calcitiol which I might not have needed but I was pretty sure a crash was coming.
I was right.
Apparently I said to Dawn, “It’s coming.”
She thought, “What’s coming?”
Then she saw.
Both hands and arms were full on tetany. I thought best option would be to get home. I asked Dawn to drive me as we were only a few minutes away and thought maybe just to add some more calcium. Plus I would be home:)
While she may not have been calm on the inside, she remained cool, calm and collected. As we got to my house, I used voice command to call hubby who came out to get me. When I got inside, I sat took some more calcium and slowly…. Slowly……. My body released.
I texted with doctor…. Continued to add some extra calcium for remaining of the day and all is well.
In retrospect…..
It was much warmer than I realized. I even got some color from the sun. Heat is not my friend.
I had been dealing with low calcium symptoms during the week and probably started in a deficient.
Again – it was hotter than I realized
Those without Hypopara (my friends and spouse included) might have been shocked by what happened. I was not. Although it was worse than the last crash.
It is what it is.
Funny not funny during the run, Dawn and I spoke of my last crash. I had said to her that wouldn’t it be nice to have a monitoring device that could tell you when your levels were off like a diabetic.
Yup…. Wouldn’t it be nice
We also talked about making sure that I could easily get to my pills without having to worry about opening something.
Anyway this did put things in perspective. Yes, I will rethink race day. I will take into account weather. I will make sure to have levels in check prior to race day. I will make sure to put info on back of race bib and will make sure to know where medical tents are.
Most of all, I will not let this stop me. I will just make sure to be smart.
Perfect timing, I already had an appointment for a Hypopara study that I am participating in. I am doing my 24 hour urine collection today followed by some testing tomorrow. I will also get to see my Dr who I will discuss what I need to do.
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.
When you are a healthy runner, you can still run into issues with your training. You can over train. You can become dehydrated. You do so many things wrong, but usually there is some wiggle room. When you have Hypopara (or any other health issue), you might not have so much wiggle room. Sometimes you forget that too.
Today was a day to remind me of that. A day where I got the not so gentle reminder that there isn’t as much wiggle room as I would like to pretend. It is easy to forget these things. It is easy to pretend that you just take extra calcium and meds just because. Especially when for the most part you are stable. Yes, you sometimes get gentle reminders that you need to take some more meds….. a “dancing” of your leg muscles, a little tingle here or there, but nothing crazy.
Training has been going well. I haven’t necessarily been following the plan perfectly, but enough that I feel comfortable with it. Enough to know that I can run a half in 3 weeks and continue with it to run the Hat Trick in October. I’ve done multiple back to back runs. Some of them have even been a run in the evening followed by run the next morning. All Good.
Yesterday I went for a training run with my friend. We did an easy 6 miles. No issues. Run itself was comfortable and left feeling like I could run more. We did it!
This morning I left for another 5 miles. I was adding some hills, since the Hat Trick has lots of them. I wasn’t going to race. I wasn’t going to be fast. My goal was to try to be steady. Figure out a walk/run plan. I was about half mile out when I realized that I forgot my water. It was hot and humid, but I figured lets just keep going. So I did…..
Like all runners, I monitored the way my body was feeling during the run. Today I was really just focused on completing the miles, watching pace to make sure I wasn’t running too fast, and trying a new walk/run plan (8 to 1). I was trying to run a smart training run.
During the run there were times I felt the tingles that sometimes come when running. I adjusted. I just wanted to push to 5 miles watching my heart rate and pace. I’ve felt these tingles before. These are just little warning bells, but nothing crazy. Once I hit the 5 miles, I walked.
I had 1/2 mile to go and figured a walk would be a good cool down. The tingles became more intense, but again nothing crazy. As soon as I got in the house I made my ice water with electrolyte powder. While sometimes after a hard workout I will take some extra calcium, thankfully today I also took an extra Calcitriol. Minutes later both my hands seized up with tetney or as I call it, the claw hand. I could not open. I could not close. I also having severe tingling and pressure in both arms and lips/face.
I admit it, I got very nervous especially because I was home alone and would be for hours. I wasn’t sure if I was going to pass out. I asked Siri to call the friend I ran with yesterday. She is familiar with my issues and as a bonus she is a PT who understands the body. I tied to be calm, but I think she knew I was freaked out and how I was feeling as I was swearing up a storm. I even gave her my address and unlocked the back door just in case I stopped talking to her. This was no joke. This was the worst crash I’ve ever had…. NO I AM NOT BEING DRAMATIC. Those who have been here understand.
Luckily as we stayed on the phone with my friend little by little my hands became my own. I would happily tell her, “my pinky and tall finger are moving!” It slowly released me after quickly grabbing on. She said she knew when I was feeling better when I stopped swearing.
Once my body was my own again, I texted my doctor. She called minutes after getting my text. I love her so:). We talked about what happened. What I needed to do as far as meds. She felt that we would rather go on side of dealing with high calcium than low…. Although the high never came. She gave me instructions on what to do if the tetney came back…. It was go to ER for possible calcium infusion. Thankfully that never came either.
I am ok now. I literally did nothing for the rest of the day. Resting. Eating calcium rich foods as well as following the regime she gave me for meds.
So today was a reminder. Be smarter. Be prepared. Most of all know that even if one day something works, that Hypopara does what it wants when it wants. That being said, I know hope is on the horizon. Hopefully in 6 months to a year I can be on the hormone replacement. Until then, I am thankful this is (for me) a very rare moment.
This was a full week filled with work, training and hope! So lets break it down….
Training has been going well. As I said, I am not going to do every run as a run, but I am doing my training. I also am trying to be proactive and went totally the podiatrist to get a new pair of orthotics. I have suffered with plantar fasciitis in the pst, so I am trying to get ahead of it. This is also one of the reasons that i am not doing all my training as running. There is a benefit to it.
I was surprised that when I went to the podiatrist he told me that the last time I got orthotics was in 2017. I knew it had been a while, but that is definitely too long for feet like mine. I am also trying to make sure to do some daily exercises and stretches. I really want to do all i can not to deal with the pain of plantar faciatis. Fingers crossed.
As for the hope……..
This week TransCon PTH was approved by the FDA!!!!!!!!!!!!!!!! This is now the first hormone replacement therapy approved for those of us with Hypopara. I am excited because I remember how I felt when I was taking Natpara (another therapy that was pulled). That being said, I also know getting on it will be a whole other hurdle.
When I was on Natpara it required special approval because it was not FDA approved. It also was extremely expensive. It didn’t cost me anything because it was all covered by Shire (the company) seeking approval. The cost was nothing to sneeze at since it was over $10 THOUSAND dollars a month. So there’s that, but I haven’t heard the cost of TransCon yet.
I am hopeful that even if it has a high cost that I would still qualify but I’m not sure cost wise if it will be affordable. Fingers crossed. I think that I would qualify since I am slowly damaging my kidneys with my high urine calcium levels. I check my levels every 6 months. My last 24 hour urine level was 560 even though I take “low” doses of calcium and calcitriol. My levels are usually over 350, but I’ve been over 500 a few times. For those unsure what this means, for someone without Hypopara a high level is anything over 250. They give some leeway for those of us with it, but anything over 300 is considered high….. So go me:)
These high levels are the reason I have said that I am trying not to add calcium into my training but work in the constrains of what I normally take. I may adjust when I take, but I really am trying not to add more unless it is necessary to keep my serum calcium levels in check.
Balance…
Balance…
Balance…..
So looking forward to the day that I can take an injection of PTH daily and then let my body do what it is supposed to do. Until then….
Here we are:)
Are you planning to get in line to get on TransCon?
The Accidentally Running Mama 