My Health Journey Part 2: Not Just a Name, But a Reason!

High Blood Calcium 2This is the continued post from “What I Didn’t Know.”  This is a personal post about my health problems, and how I sort of became my own health advocate. Which is scary, and exciting, and rewarding in ways I never expected.

I hope this can be of some help and inspiration to anyone else out there who is also trying to figure out what is going on with their health.
So, on with the story…

My labs from 2012 didn’t hold many surprises.  Really, they only held one surprise.  I was surprised that my TSH levels were pretty much the same in my current labs than they had been in 2011.

As my lab numbers were posted from my new Dr., I watched expectantly for my thyroid numbers.  They finally were posted, and I was surprised again…my thyroid function was on the low side of normal, but that didn’t really put me into the hypothyroid diagnosis.  It didn’t explain my symptoms.  OK…maybe it was adrenal gland malfunction?  MAYBE a combination of sluggish thyroid and adrenal fatigue?

I couldn’t wait for my follow up appointment to talk to my new Dr.

So, I didn’t wait.  I asked a friend.  She’s a friend from church who is a nurse, so I asked her about my thyroid testing, and symptoms…I told her that I was still waiting and wondering what was going on with my health.  I mentioned that my calcium levels were a little on the high side, but other than that, all of my tests were in range.  I happened to mention that I found it odd that my calcium was elevated in my 2011 labs too.

She pointed at my face.

“That’s odd.  That’s not normal.  You should look into that.  It’s way more normal for people to have low blood calcium than high.”

And THAT my friends, was the game changer.

As soon as my feet hit the pavement at home, I was on a mission from God to find out what high blood calcium meant.  How did it work?  Why was it high?

All these questions and more were answered at a fantastic website that I found: www.parathyroid.com.  It’s authored by a Parathyroid Specialist/Surgeon in Florida.  In fact, he calls himself “one of world’s foremost experts on parathyroid disease.”  Good.  I LOVE learning from experts!

This is what he had to say: “If your blood calcium is high and your blood vitamin D is LOW, then 100% you have a parathyroid tumor.

<madly clicking back to my lab results…>

I sat there stunned.
I have a tumor.

On a part of my body that I didn’t even know I had.  What the heck is a parathyroid gland?

Turns out, the body has 4 tiny little rice-sized glands JUST for regulating blood calcium.  At least that’s all that they’re known to do at this time.  The name ‘parathyroid’ really only has to do with their placement.  They are generally located on the tips of the 4 “wings” of the thyroid gland, but they don’t directly affect thyroid function as far as anyone knows.

source: http://training.seer.cancer.gov/anatomy/endocrine/glands/thyroid.html

This morning, I would have sworn that having a lot of calcium was a “good” thing…calcium is good, right?  Turns out, calcium is VERY important…its role in the body is so critical, that it’s the only mineral that has its own controlling glands to regulate how much is in the blood stream: these are the parathyroid glands

According to Dr. Normal, “Parathyroid glands control the calcium in our bodies–how much calcium is in our bones, and how much calcium is in our blood. Calcium is the most important element in our bodies (we use it to control many systems), so calcium is regulated very carefully.”

So, calcium in the bones is good…calcium pulled out of the bones and into the blood stream?  NOT GOOD.  Aside from guaranteeing osteoporosis in time, it also messes up the way the BRAIN operates.  Dr. Norman says, “Calcium is the element that allows the normal conduction of electrical currents along nerves–its how our nervous system works and how one nerve ‘talks’ to the next. Our entire brain works by fluxes of calcium into and out of the nerve cells. Calcium is also the primary element which causes muscles to contract.”

Well, dang.

Here is a video that explains more…

I spent the next few hours pouring over the pages of Dr. Norman’s site.  I took notes and copied charts and graphs to show my new Dr.

This explained EVERYTHING…the exhaustion, the irritability, the weird hip pains that had plagued me on and off…the sleep issues, bladder infections, weight gain, tooth decay.  ALL of it.  “Feeling old” is even stated as one of the symptoms!  Here are the symptoms of primary hyperparathyriodism.  I didn’t have all of these symptoms, but this explained all of the symptoms that I have/had.

I discovered that what I had is generally thought to be an older person’s disease, but it’s thought to also have existed, undiagnosed, for years…decades, before the symptoms can no longer be ignored.  And as you saw above, the consequences of ignoring it are serious.  I needed to take this seriously.  And…I want my life back.

I finally had my answer.  But what was the cure?  I’ll give you one guess what Dr. Norman, parathyroid SURGEON recommends.

Bingo.  You got it.

He says, “Surgery is the only way to treat parathyroid disease (hyperparathyroidism). There are no medications or pills that work to cure or treat parathyroid problems or high calcium. The parathyroid tumor must be removed by a surgeon. As soon as the parathyroid tumor has been removed, you are cured!”

So, what are we looking at as far as cost?   Dr. Norman and associates are located in Florida, so I’d get to pay a $1750 Consultation Fee.  This is IN ADDITION to anything our insurance company would cover.  Knowing that we have a high premium, I checked out the cost for uninsured patients.  That would be $11,250.  And that does not include hotel or travel.  Dr. Norman tells me, “This is cheap!”  *sputter* *cough* *gag*

Thankfully, with a little more googling, I found a local parathyroid surgeon who specializes in parathyroid removal (and experienced surgeon is CRITICAL when you’re dealing with surgery on tiny neck glands).  I would make an appointment the next day.  Two days after my follow up appointment with my new doctor, I’d be sitting in the waiting room of the parathyroid surgeon.

Tumor.
Neck surgery.
It had been quite a Sunday afternoon.

What would my family say?  What would my new doctors say?

Can I really be SURE that I have a tumor just based on a couple of lab tests?  And is there ANY other option besides surgery?

Stay tuned…

Part III Skeptics, Proof, and Hope Like 20 Mules

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  1. Kelley says

    My mom is going through this right now! I would love to read another post about this from you. She is also wondering if there are any other options.

    • hi_itsgwen says

      There is a part III and IV already written…I’ll link them at the bottom of the posts right now. Sorry I overlooked that!

      I’m still mid-stream with my treatment, but I’ll definitely keep writing as I go through this.

  2. Rhonda says

    What’s the difference between this thyroid problem and Grave’s disease (which is an autoimmune thyroid disease which causes the thyroid to make way too much thyroxin and also causes osteosporosis.

    • Its_Gwen says

      If I understand it correctly, my issue was the parathyroid overproducing PTH that draws calcium out of my bones and into my bloodstream. The high calcium levels threw off so many other systems in my body, including my thyroid gland.

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