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.
After seeing my Hypopara Endocrinologist, we talked about how I’ve been been more syptomatic with low calcium symptoms. Yes, there was the crash after my last 10 mile run, but there I’ve also been having “normal” low calcium symptoms on a regular basis. Things like muscle cramps, tingles, and muscle spasms.
These are just things you get used to.
Here’s the thing….. You forget that these are not normal. They are just your normal.
In talking with my doctor, we don’t see any reason for the changes. My only thought is that I may have been under stress but even then.
I’ve run more marathon’s with Hypopara than with out at this point. Even with all my marathon training and Hat Trick training, my calcium has not been this bad. The only thought I’ve had is that I did used to run with powdered calcium in my water. Although I haven’t done that in years.
I’m going to try again. While it really is never a good thing to try something new on race day, I will be adding powdered calcium to my water. I will still have my regular doses with me, but I’ve got to figure out dosing.
Again, there is no way to measure calcium levels in real time. My doctor did say that it is better to go too hight than too low.
We also talked about my last crash and while she said it was smart to go home to where my meds were to make sure to take care because if it continued to go lower instead of regulating that it could cause a cardiac event…. And that based on my account and documented photos, it was a “severe crash.”
Now being she is the medical profession, she did caution about running Brooklyn. That being said, she also said as long as I did it smartly it should be ok since I’ve completed two other 10 miles runs in training. I also said, that I would be smart and if I end up having to walk a bunch, I will.
I will get to the start.
I will get to the finish.
I will be smart.
I will probably be very slow.
I do not anticipate that I will meet any A goal that I once floated at the start of my training.
The upside…… I am still moving.
Plus I have the hope of now getting on the therapy replacement plan and then it will be game on.
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.
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.
Some might say that I have been doing this for a long time without reaching some of my goals.
Maybe that’s true.
Maybe it’s not.
My goals have changed along the way. My thoughts of what is necessary has changed. What and where I want to be has changed. I know my body has changed and what it can do too. Always moving forward though. Maybe no longer reaching for that golden ring, but happy with the consolation prize. Bobbing and weaving, even when the finish line keeps moving.
So maybe it’s not about reaching the goal, but continuing to reach for it without giving up.
Tomorrow starts my 16 week training plan for the Brooklyn Half. As of now I do not have a goal for the race other than to run it well. To me that will mean to go into this event trained by following my training plan. To continue with the cross training to hopefully also go into this race injury free.
At the 8 week mark, I will access where I am with my training and adjust training for the goal.
So here we go……
Last time I ran Brooklyn in 2015, I ran it in 2:14:47. That’s not happening or anything even close to that. That being said, my last half was 2:59:18. So, honestly, I am starting my training with 3 hours in mind.
Never giving up…. Never baking down…. Still moving….
It is so easy to get caught up in the numbers, the data, and if your garmin didn’t record it that it didn’t happen.
I am trying to let that go.
I have been doing my 20 minutes of daily wall pilates. I’ve been walking. I’ve been riding stationary bike and going on treadmill.
Many recorded.
Some not.
You know what if it isn’t documented, it still happened. It is making a difference. I am noticing less aches and pains. I am noticing feeling a little bit stronger. I am confident that this is the way to go.
I am not going from zero to sixty too fast. I am easing into these changes in a way that speaks to where I am and not was or want to be. I am matching my exercise routine with the reality of where my body is today and what it could do.
In my Crossfit days, I was a bad ass. I could lift and do WOD’s breaking into a sweat but get them done. I am not the same, but the determination is the same.
Yesterday was National Quitter’s Day. The day most of us quit our New Year’s resolutions. Since I didn’t make any resolutions and started on December 30th, I’m still going strong. As said previously, it is all about progress not perfection. It is all about being healthier.
It’s funny too because I’ve actually been enjoying eating healthier. It has been making me think about my food choices which has been more satisfying than just grabbing things without thought. I’ve been taking salads for most of my lunches and they have been so good.
Love this container too!
For snacks, I’ve forgotten how much I enjoy cottage cheese with fresh fruit. I’ve also had to rethink drinking my calories. More water even though that was usually my drink of choice. It also helps that for Christmas that I got a Nutribullet.
I think I mentioned the app Reverse Health. I have now completed 11 days of my 30 day challenge. I am starting from the beginning which is where I am at. While I can go out and run pretty much any day, my overall fitness has not been tended to. So back to basics.
So far so good.
I’ve already noticed changes. My lower back pain has improved as have my flexibility in my hips which were very tight. These are the things that I need to work on. I am also working on my running. Today I ran three miles doing some fartleks. No particular speed, just to test and see how I would feel.
On top of that I have lost almost 3 pounds which is also part of the agenda. But slow and steady is the goal.
Progress not perfection.
On top of this, I also through the lottery got into the NYC Brooklyn Half which is in May. So all that I’m doing now is the pre-training for the Half.
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.
The Accidentally Running Mama 