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Wednesday, August 23, 2017

The "little-known" parathyroid gland!

Hi friends, I'm writing this in the hopes that my experience can save you from the devastating effects of an often over-looked disease.  

Are you tired, irritable, and depressed? Do you feel older than your chronological age and have "foggy brain?" Have you suffered from kidney stones?  How about constipation, GERD, and other digestive problems?  If so, you might have Primary Hyperparathyroidism.  Yes, it's a mouthful but it describes these teeny, tiny  "punks" that are robbing you of full and happy life.  

If your blood labs have shown high calcium levels, there's a 99.9% chance you have a benign tumor on one of the parathyroid glands. Post-menopausal women are at higher risk.  If you've never heard of parathyroid glands, you're not alone. We have four and they rest on the thyroid. They control the amount of calcium your body produces.  If your calcium blood levels are normal, it means that your parathyroid glands are taking a nap.  If your levels are high, it means they are fully engaged but should be napping.   

So, what is a high calcium reading?  For someone in their 50's or 60's it would be in the 10's. In 2014, my calcium level was 10.5.  My doctor never addressed my high Calcium level.  I noticed it but thought it was good.  I thought it meant I would have strong bones, which is so laughable to me now that I realize the devastating effects of high calcium.  

In 2017,  I started seeing a new PCP, Dr. Gigi Lefebvre. Besides having a very pleasant demeanor, she's very thorough and methodical during patient visits. She doesn't miss a thing.  At the end of the visit, she hands you a copy of the notes she took during your visit.  

My first blood labs with Dr. Gigi revealed high calcium of 10.7.  I had two doctors prior to Dr. Gigi who didn't notice or address my high calcium levels. Dr. Gigi referred me to an endocrinologist who ordered more tests with the same results, normal PTH and high Calcium. He said, "You can wait and see ... or you can go to the Norman Parathyroid Center (NPC)  in Tampa." By the time of my visit with the endocrinologist, I had already researched the Norman Parathyroid Center. They specialize in parathyroid surgeries.  That's all they do. People from all over the world come to the Center and here I am living across the bridge.  I thought, "Hell no! I have three years of blood labs showing high calcium levels, I don't have to wait any longer."  If it had not been for Dr. Gigi, I would still be suffering!

I filled out the NPC online questionnaire. They received my records from Dr. Gigi within three days. Dr. Daniel Ruan, who would be my primary contact on my three-member surgical team, called me on the phone while driving to his vacation destination. In short, he said I had primary hyperparathyroidism and the only cure was surgery.  I said, "What's the next step?  Do we meet?"  He said, "I'll meet you on the day of surgery."  In the meantime, the surgical appointment was set up and I started receiving informational emails from their supportive staff.  

This is the ugly thing they removed from my neck 6 days ago!



My gland should have been the size of a grain of rice not the size of a kidney bean! They use a specialized scope to detect the amount of hormone the gland is producing.  Normal limits are between 30 and 80.  The reading of this tumor was 1709! 

If you've made it this far, what you've read is a patient's explanation of hyperparathyroidism.  If you want to hear the explanation by my surgeon, an expert in the field, click here.  You'll hear Dr. Danial Ruan explain this often overlooked disease in an easy understandable way.  Please don't let the day go by without taking a look at your last blood labs!  If you have any questions, please leave them in the comments.  Here's to good health! 

   


5 comments:

Katie said...

Oh Barbara!! So glad you found good doctors and got that taken care of!! So glad you blogged about this to make more people aware and get them invested in their own health. Keep getting better and feeling good!!

Susan said...

Barbara, I'm happy to hear that you found a doctor who pays attention! Thank you very much for sharing this with us!

Cathie Carroll said...

How scary-that thing is HUGE.
I'm glad you're well and hope you continue to be.
~hugs~

J G said...

I'd saved this until I had time to seat and read it.
How interesting, but most important how wonderful you are doing great now!
And thank you so much for sharing to make more people awar of it.
<3

Anvil Artifacts said...

Sorry to hear you've been feeling so unwell and that it took so much time for a diagnosis. Hoping you feel absolutely wonderful soon.