Tag Archive | hypopara athlete

Last Study Visit

This post is for my Hypopara peeps, although anyone can read:)

This year in November marks the 10 year anniversary of me becoming Hypopara. It’s been a wild ride with many ups and downs. For now though, it seems like the ride has come to a stop. Thanks to to Yorvipath.

I was lucky within the first year or so to realize that I needed an Endocrinologist that understood this rare, somewhat complicated and often misunderstood disorder. So I searched out an Endocrinologist with knowledge

With that I found, Dr Rubin.

She is a ROCKSTAR in the Hypopara community. The real deal. She is considered (because she is) a leading expert in hypoparathyroidism. On top of being caring and knowledgeable, she is medical advisor to the HypoPARAthyroidism Association and other groups. Since she is a leader in the field, she has partnered on studies of Hypopara. I was lucky enough to also join one of the studies.

I began this study to monitor the effects of Hypopara. It began with series of scans, bone density, cognitive and physical tests, and lab work. then periodically would go in for updates. Then ended with a final day of the original scans, tests, and lab works to compare.

I was told that there were 100 people in study and then control group. Several did drop out and I was the 5th patient to complete the study. Then they get the fun job of analyzing data.

What I noticed personally from this as the study progressed……. There has been a huge improvement with Yorvipath. This fairly new drug may require more studies for long term, but I would in heart beat raise my hand for another study.

I will say the study was a commitment in both time to go in and cost to get into city, but it was well worth it. Yes, it was beneficial to me; but I hope the data helps them determine treatments and care plans since during the study I was on various treatments as available. Although I am not privy to how they are analyzing:). I have no doubt though Dr Rubin will use this to make the live of Hypopara patients better:)

I realized today too as I was filling out one of the long questionnaires that I no longer really experience symptoms. I no longer worry about crashes, experience many of the symptoms associated with it.

For those who are not hypopara wondering what a crash is…..

No more though. I told Dr Rubin that I take no supplements, calcitriol, or an other items to control my levels. That being said, I will forever run with extra calcium just in case.

Anywho….. I am so happy to have participated and I am very lucky to have been diagnosed with this when there are so many new helpful treatments now available!

Now question for you

Would you participate in a study if available to you?

The No Training Plan Training Plan

Feb15

4 weeks to go.

Bib pick-up is secured. Van to start is set up. Talking with friend on how we will take the train home. all is set.

Training has been what it has been. The weather in NJ has not been cooperating for running outside. My garage treadmill has been unreachable due to car in garage. Even the gym has been to packed and treadmills are not always available.

This doesn’t mean that I’ve been doing nothing. It just means that I’ve been doing my own thing. I have a training plan loaded in Training Peaks.

Have I been following it?

Nope.

I’ve been looking at it more as a guide and then doing my own thing.

Today, I wanted to run a real run. I had thought about going outside, but there is still so much snow and ice. The roads and sidewalks are really not that clear. So while warm enough to run outside, I took myself to the gym.

At the gym, I ran into a badass running friend. We got to talking about what we are training for right now. I told her how I had the NYC Half in a month, but wasn’t really following a plan but loosely training. She said she was just talking to another person about the No Training Plan Training Plan.

It hit me…. That’s it.

I know the reason too as I said it to her. Running a half doesn’t scare me anymore. Yes, I need to train and run to finish. That being said; I know that even on days where it will be hard, I pretty much know I will get to the finish line.

Now I’m not saying this to sound like I can show up and finish well or have a pretty race. I just know that for the most part, I will finish. Especially when finish time is no the goal.

I had thought going into this training that I would want to do around 2:45 for this half. I no longer think that is where I will be. Who knows though because I still have a month of training.

Today’s training run was to run 60 minutes straight. No stopping. No walking. Just run and see what happened.

So I did.

We shall see……

I will say though that I am signed up for a July event that will scare me enough to train. It’s only a 10K, but it is a Spartan 10K that I am doing with 2 of my boys and others. That will require a different training. As will a September Sprint triathlon.

For now though, I need to run NY.

Looking Ahead

Nov28

I had been thinking about challenges/goals for the coming year. I wasn’t sure what it would be.

The goal came to me.

I had forgotten that I put in for the NYC Half lottery. I was reminded, when I got the email.

I wasn’t sure how happy I was because logistically NYC events are a bit of a pain. Worth it, but still a pain. The exciting part is that 2 of my running friends also got in. So misery loves company.

I’ve been thinking about goals for event now too. I’m thinking if I could finish the Bethlehem Running Festival in 2:41:08 after running 3 other races that weekend, I would train for a possible 2:30 half. We shall see. We shall see.

Then after wrapping my head around that, two of my suns have roped me into a 6K Spartan race. Fortunately that won’t be till summer. So one goal at a time.

One day at a time.

One goal at a time.

One run at a time.

3 Weeks to Go!

Sep28

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

Jul31

2016 was the year I began tryin to take my running to the next level. I was working with a running coach. I had goals. There was no stoping me….. or so I thought.

Then, as I’ve said before, two weeks after running NYC Marathon which I crashed and burned because I went out WAY too fast I had my thyroid out. As you know this was the surgery that left me with Hypoparathyroidism.

I’ve started thinking about new goals now that I am on the Yorvipath hormone replacement therapy. It has gotten me looking at where I’ve been with my running and what I might now be able to do now that my body seems to be working again.

The following year, I wanted to push myself to run another marathon. It was hard. It was hot. I did it. I finished in 5:48:52. My marathon times only got slower from there. I usually finished shortly after 6 hours. My slowest being in 2023 at 7:14.

It was always a struggle. I had to balance the need to replenish my calcium supplies for running while taking into account my kidneys. Then there was also the issue of making sure not to allow calcium to get to low causing a crash.

I pushed myself.

Now that I am taking my Yorvipath, it appears that my body is able to once again do what is asked. Suddenly I can push to hit 12 minute paces. I still. Have much to go, but it is a start. My Garmin even recorded a best pace of 9:24. No, I can’t sustain that but the fact that I hit it is a start.

So as I get ready to train for Bethlehem festival, it is time for new goals…..

Jul26

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.

So here is to beginning training….

Pre Training and Testing Limits

Jul13

Ok, first the short Yorvipath update.

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.

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.

Let’s see where we go from here.

New Beginnings.

Jul6

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.

So here is to new beginning!

Here We Go

Jun21

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.

It’s go time

I (think) I Carry it Well

Jun1

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….

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

Run, Bike, Swim and Have a Life!