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?

Slow but Steady

Mar8

If you are in the running community, you probably saw the post from the fast runner lamenting how slow charity runners basically stole her spot. Now I am not going to call her out by posting her post because I am sure she is not the only speedy runner to have thought that. She may be the only one though silly enough to post that online…….. Then again, here I am posting online my thoughts. So there’s that.

I saw the people with the pitchforks come for her. Poor woman apparently deleted her social media account or so I heard. I personally, feel a little bad for her. I’m sure she was upset about not getting into the race and technically she isn’t wrong…. But, yet, she is.

By the numbers that I could see:

2025 total finishers: 59,226

Charity runners: 14,000 who raised over $80,000 million.

2026 over 240,000 people applied.

From a Runner’s World article: “This year, NYRR only accepted the top 10 percent of non-NYRR marathon time qualifiers, which means athletes needed to run at least 22 minutes and 52 seconds faster than the qualifying standard for their age group.”

Here is my take as someone who has run for Charity multiple times.

NYRR is a business. Yes, they are non-profit, but make no mistake….they are a business. This is a business decision as a non-profit giving back is key to their goal. They also have a goal for 2026 charity runners to raise 100,000 million for the 600 charities these runners support.
Running slow and running for charity is hard….

Let’s talk about number 2

When you get in as a charity runners, you know that if you do not reach your fundraising goal that you are PERSONALLY responsible for it. On top of that, most charities do not cover the cost of your bib which is over $300. When you sign on to be a charity runners, you sign a contract stating that you agree to these terms.

Being a charity runners means that besides training for your race, you also need to spend a LARGE chunk of time fundraising to meet your goal. This is why I tell anyone who runs for charity to make sure that it is a charity that is near and dear to you.

When I ran for Sandy Hook Promise, a charity near and dear to me, I spent A LOT of time fundraising. Yes, there were family and friends who were supportive. I also did bake sales, auctions, shoe collections and other events. It was daunting, scary, and a lot of work to meet and surpass the fundraising goals.

Then there was the “normal” training. Slow runners train just as hard as fast runner while actually needing to find more time in our day to do it since our runs take longer.

Then there is race day:

This is from a previous post marathon slow runners train post of mine:

“There is something about having the grit and determination to get to the finish line while they are rolling up the carpets so to speak. When the crowds are sparse…… When the sun is setting…….. When it is dark in the park……. When you have to be your own cheerleader……. When you have to dig in deep to find your own grit and determination because you are the reason you are there in the first place and you will be the reason that you get to the finish line. There are no massive crowds to carry you to the finish line, but those that are there know how much that you need them. I was lucky to have a friend cheering on 5th Avenue. I almost missed her but she strained your voice to scream my name loud enough that I turned to see her………. It was perfect”

Bottom line

If you are a fast runner – great!

If you are a slow runners – great!

If you are a lottery winner – great!

No matter how you get there….. No matter how you run it……. When standing in the coral, we are all just runners.

I also put in for the lottery this year. I did not get in. I don’t hold that against the other random lottery winners. I just know that is just the way it is.

Running is for EVERYONE. Not just the speedy ones:)

If You Can Run 10…

Feb21

I remember before my first half marathon years ago, I was out just running to run with my MRTT running group. I wasn’t signed up for anything but just running to run. It was a weekend run and Janna, a badass runner, asked what I was training for as most were training for a Superhero half. I said nothing. She told me I should sign up with the words, “if you can run 10 miles, you can do a half.”

So I did.

Janna paced me through it including how to run away from someone singing Klingon Opera. I kid you not.

One of my fastest half marathon’s too at 2:09:24

After that it was history.

When I started training for the NYC Half, I thought I would try to train for a 2:45 half. That training plan has come and gone.

Now I just want to finish without injury and with feeling good. The event is in less than a month. As I said in my last post, I am doing the no training plan training plan. Lots of biking. Some elliptical. Some cross training. Very little running and really not enough overall training.

We are getting more snow tomorrow. I needed to get out today for my long run. i wanted to go for 10, but would have settled for 8.

No need to settle.

This is the run I needed. I ran not by pace, but just trying to keep it “easy” and ran entirely by feel.

I stretched and hydrated when I got home.

For my Hypopara peeps……. I have not added any calcium to any training including this one since starting Yorvipath. I will say as a precaution though that I always have some with me.

So if I can run 10….. i believe that I can run 13.

In the meantime, I will keep the training up and fine tune it.

Reflection

Oct26

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!

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

Slow and Steady

Jun18

We are searching for that magic pill. Some are even opting for an injection instead. I get it. Sometimes it is necessary. Sometimes there are medical reasons that would require such extreme measures. Sometimes there isn’t except that loosing weight is hard. I’ve thought about other options, but as I mentioned before I signed up for weight watchers at end of April.

I am the type of person that needs a plan. In my 40’s when I lost 20 pounds (before gaining it all back and more), I used the South Beach Diet. While it helped, it is not a healthy diet for me nor did I want so much a diet as I wanted to retrain my brain/body to eat healthy.

So here we are 7 weeks in and 11.4 pounds down.

As you can see from my step goal, I am doing well. Probably because as a PreK teacher, I am rarely off my feet during the day. So that seems to be working in my favor. I am trying to be steady in working out. I, honestly, have not been running since the Brooklyn Half. I’ve been walking, indoor biking, and weights. I have not been as steady on that as I would like, but I do know that I am gearing up to start my Hat Trick Training at end of July. So theres that.

I like a plan. I like an easy plan. I have found the plan that is now working for me. Tracking which I’ve tried before and never stuck with seems to be working for me now. I think the overall approach to Weight Watchers is what is working for me. I’m not just tracking my food. I am assessing and thinking about what foods I am eating. The daily points have made me think, “is it worth it” when thinking about food choices. I am also encouraged to move more to get more points!

I still don’t feel like I am necessarily on a diet, but on a healthy eating path. When I pack my lunch, it is both tasty but also weeding out the easy to grab processed foods.

That being said, I am still eating a cookie which I track. The thing is I am thinking just one cookie and not several. A small piece of ice cream cake and not a full slice. I don’t want to deprive myself. I just want to find the balance.

I’m not going to lie though…… I know hitting my goal weight is going to take time. I know it’s going to be harder than I want it to be. I know. I know. I know….. but, but , but ……….I am now one pound less than I weighed in last seen 2019. So that is a win! I am also a little less than 5 pounds away from my first goal weight. Then after that 15 more.

It is going to take time. The weight didn’t go on over night, so I can’t expect it to come off overnight either.

Onward….

The Accidentally Running Mama

Run, Bike, Swim and Have a Life!

Archives