Last year I trained as hard as I could for the Bethlehem Running Festival. I went in feeling like I could do it and I did. This year I followed the same training plan and went in feeling like I could do it and I did.
This year though, I went in with goals. I picked a goal race. Mine was the 10K. I also planned to start the half with the 2;45 pacer and see what happened. As it was, I ended up running the half with my son. By about mile 9 we came across the 2;45 pacer and we went back and forth with who was in front.
The biggest difference this year though was being on Yorvipath. It allowed me to follow my training plan more closely. Although I will say towards the end, I was less perfect than I should have been. Last year, I was worried about adding calcium supplements and making sure not to crash and burn with calcium crash. On Yorvipath, those fears are less and less, but I do still keep calcium with me.
So how do things compare
While on face it doesn’t look like a huge on the smaller races, there is a huge improvement on the half.
Another big difference is the almost 25 pounds I have lost, but that is for another post.
I do know that I would not have had this improvement if not for the Yorvipath. No, it doesn’t make me run faster, but it does make my body work the way it is supposed to work. I have more energy. I don’t have the muscle cramping and I have not had a calcium crash or anything close to it since I started. Now, I am still figuring it out. I’ve recently upped my dosage and hope to go for blood work this week to see how levels are looking.
So now that this goal is done, it is time to look forward and figure out my next goal.
There will be a day I can not run…… Today is not that day!
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.
The Accidentally Running Mama 