Health Update: My Journey with Hyperparathyroidism

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For the last 2-3 years, maybe even longer, I’ve felt like my energy has slowly been slipping away. At first, it seemed worse in the summer. I thought maybe it was just a combination of having the boys home from school and not dealing well with heat & humidity. But as time passed, it kept getting worse, and definitely wasn’t only in the summer. (The above photo has nothing to do with hyperparathyroidism, just a sneak peek of my new bedroom that I will hopefully be sharing soon!).

I kept wondering why it felt like I just could not keep up with life, and was struggling to get things done the way I used to. I was also having other symptoms as well. Feeling achey, like you do when you have a fever, but I didn’t have a fever and wasn’t sick with anything. Being light headed. Feeling like my heart was racing for no reason. And I felt like I was constantly struggling with brain fog. I’d forget words, drift off in the middle of a sentence, or completely forget what I was going to say. It just seemed like my brain was operating at a slow speed. I was having trouble sleeping too, waking up in the night and being awake for long periods. I thought this was probably the issue, I must just be sleeping even worse than I thought.

Finally I decided enough was enough and made a doctor’s appointment. This was this past September.  I thought I might need some kind of prescription sleep aid. My doctor first did a few heart tests to make sure my heart seemed okay. They did an EKG and I had to wear a heart monitor for 24 hours (photo of that below, they’re so advanced compared to what they used to be!). Both those came back fine. I also had to do a chest X-ray too. And she had me do lots of bloodwork.

The bloodwork showed that I had high levels of calcium (which I initially thought must be a good thing – stronger bones, haha!). Turns out, you do not want high levels of calcium! The doctor had me do more bloodwork to recheck my calcium level and also checked my PTH level – parathyroid hormone level. Normal for that is somewhere between 18-80. Mine was 176! And my calcium was still elevated, it wasn’t just a fluke test. My doctor informed me I had an overactive parathyroid and needed to see an endocrinologist.

It took almost 4 months of waiting to be able to get in to see the endocrinologist. During that waiting time, I still felt pretty bad a lot of the time. Although I would have good weeks and almost feel normal. I also was having frequent kidney pain during pretty much all of November. I have struggled with kidney stones since 2006. I don’t get them regularly, just every now and then. I was told years and years ago by a doctor that I would just continue to get them throughout my life, given painkillers for when they happened, and basically told good luck with that. 

At the beginning of January I saw the endocrinologist. My official diagnosis is hyperparathyroidism. That’s a mouthful. This site gives a good overview of the symptoms of hyperparathyroidism. I have a lot of them. And have for a long time.

I had to do more bloodwork. A 24 hour urine collection (as someone who was peeing all the time, another symptom, that was really annoying!). And get an ultrasound of my neck. All of the lab work confirmed my diagnosis. I have high levels of calcium in my blood and urine. The ultrasound showed I had an enlarged parathyroid gland on my right side (they are supposed to be the size of a grain of rice, the doctor said mine is about the size of a walnut!). The good news is, my condition is curable. The bad news is, it’s with surgery. 

A brief overview of hyperparathyroidism:

You have four parathyroid glands, located behind your thyroid. They control the calcium level in your body (and have nothing to do with your thyroid, other than being located behind it). For some unknown reason, one or more can go haywire, become enlarged and start making your body produce too much calcium. This can lead to hypercalcemia, which causes a lot of the symptoms I’ve been having. It can eventually lead to osteoporosis (it’s actually pulling calcium from your bones) and kidney issues. Hence, my kidney stones for the last 18 years.

Based on my symptoms and some bloodwork my doctor was able to find from years ago, he thinks I’ve probably had this for 13+years! Yikes! Apparently, my calcium levels should have been checked long ago because of having kidney stones. If I had, they may have discovered this a long time ago. Before I really even started to have symptoms. It is rare, and therefore harder to get diagnosed because doctors aren’t typically looking for it.  

The next step was seeing a surgeon. I met with her at the end of January. I really like her and felt like it was the first time a doctor really acknowledged what I was going through and that it would be making me feel pretty badly. It felt so good to have that recognized. It’s hard to have a disease that you can’t see physical symptoms of. I think a lot of medial professionals like to work with things they can see/measure. Fatigue, joint bone, and brain fog are hard things to quantify. Bone loss, kidney stones, lab results, those are things that can be measured and tracked. However, the things bothering me the most are things that you can’t really measure or track. (Obviously passing kidney stones bothers me immensely when it happens, it just isn’t happening regularly enough to be a major item on my list). 

After meeting with the surgeon, I had to have yet another test done. This time a sestamibi scan, which is some kind of nuclear medicine scan. That was to confirm, as much as that’s able to, that it is mostly likely just the one gland that has the adenoma. (And that’s what it did confirm).

What’s next?

I have a DEXA bone scan at the end of March. This will check to see if I have any bone loss. My surgery is scheduled for the end of April. Kind of a long wait, especially when I’m just not feeling great most of the time. But I’m thankful that I finally have a diagnosis and an end in site. The doctor will remove the enlarged parathyroid gland, and hopefully within a few weeks, I’ll start feeling better! I will also have a scar on my neck, which is a bit of a bummer. (If you know of a good scar cream/remedy, let me know!). 

So that’s where things are at right now with my health. Such a long update! I wanted to share about this because it’s been affecting my work – aka this blog. I just have not able to work/post like I used to. I’ve basically quit posting over on IG, and this was a part of that reason. And if I’ve not responded to questions, comments or emails, or somehow dropped the ball, this is probably why. (I feel so badly about some of the things I just haven’t been able to keep up with).

I also have felt like it’s been hard to find personal stories of people that have had hyperparathyroidism. It’s nice to read stories from others on a similar journey, and know that you’re not alone. It is a rare disease, so I’m sure that’s why it’s hard to find. But I thought I’d put a little bit of my story out there for anyone else that might be searching for similar things. 

If you’ve made it this far through this post, thanks for reading along! I will most likely update again after the surgery. Maybe do an update or two in the newsletter, so if you’re not getting that, you can sign up here. And for those that have already been in touch, wishing me well and praying for me, I appreciate that so much! 

-Manda