
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

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.












