Hyperparathyroidism Blog 

from the Experts at the Norman Parathyroid Center

Interesting stories of hyperparathyroidism we see every day.  Parathyroid blog published bi-weekly.

Diagnosing Hyperparathyroidism in Myself: A Parathyroid Nurse’s Experiences with a Disease She Treats.

Diagnosing Hyperparathyroidism in Myself: A Parathyroid Nurse’s Experiences with a Disease She Treats.

I’m a nurse; a parathyroid nurse.  I’ve taken care of thousands of patients with primary hyperparathyroidism over the years and am very familiar with the high blood calcium and all the symptoms of hyperparathyroidism. This can’t be happening to me!?  I have a parathyroid tumor!?

Let me put parathyroid problems and hyperparathyroidism aside for a minute and give you a little background.  I am now a Healthcare IT Consultant with real-life experience in nursing. My new job means I travel a lot.  Common items to pack – Tums and Advil.  Don’t leave home without them.  And I now always check my bag at the ticket counter. Having to put my small suitcase in the overhead was difficult at best since my body just ached all the time.

I’ve got moans, groans, bones (osteopenia), aches and pains, and low vitamin D.

Ah how true it is.  I had all those things and more but decided to think it was anything but parathyroid disease.  Maybe it was the age thing.  I thought turning 50 would bring some new healthcare concerns but not these nasty, aching pains and the constant fatigue. High cholesterol lead my physician to start me on medication to manage that.  But every time I would start a new medication the muscle/bone pain would lead me to ask him to try another. Not only did I feel tired all the time, but it hurt when I got hugs from my kids… I’d always tell them don’t squeeze too hard.

Then you have the required tests when you turn 50. The dreaded colonoscopy that made my gastroenterology asks me if I had symptoms of ulcerative colitis or if I have been taking Advil for a long time. I also scheduled a upper GI to review why I had gastric reflux (GERD) and a hard time swallowing sometimes. They did find I had H-Pylori.  So I cut back on the Advil and took the medication to take care of the H-pylori.  But for some reason I still had to take Tums and even tried prilosec, tagamet and several other over the counter medications for heartburn.

Finally, I found time to have my DEXA bone scan.  As I checked in for the test the person actually gave me a questionnaire that asked me if I’d ever had parathyroid disease (“Do you have a problem with your parathyroid glands?”).  I thought that question was interesting, but when my DEXA scan results came back with osteopenia, near osteoporosis, I became concerned. As I reviewed these results with my primary care provider he prescribed all the normal steps for remedy but NEVER gave one thought into finding out WHY I had lost so much bone density. Having taken care of thousands of women with primary hyperparathyroidism I began to wonder. COULD IT BE ME? COULD I HAVE HYPERPARATHYROIDISM? COULD I HAVE THE SAME DISEASE THAT MY PATIENTS HAD?  I didn’t even know what my blood calcium level was!

Low vitamin D is often a sign of a parathyroid tumor and primary hyperparathyroidism. This graph shows how.

Click on graph to make it larger.

Of course I asked for a calcium level and it came back at 10.4 mg/dl.  And previously it was 9.9. Could it be?  So, I ask if I could have parathyroid hormone level draw with my next labs to check my cholesterol level as well as if all the extra Vitamin D I was taking to bring my Vitamin D level to a normal range was helping. (Editorial note: Do you see the trends here? Doctors trend to treat numbers they understand and ignore numbers that they don’t. Connie was put on Vitamin D a few years earlier because her vitamin D was low–yet virtually 100% of people with a parathyroid tumor have low vitamin D. If you have low vitamin D, you need to check for a parathyroid tumor!).

So as you probably guessed by now I got the results and my parathyroid level was elevated as well as my calcium level and my vitamin D was still low. My PCP offered to refer me to a endocrinologist since he felt the reason my PTH was elevated was due to my low Vitamin D, or I could wait three months and repeat the labs.  I knew there was another solution.  (Another editorial note: Low vitamin D CANNOT cause high calcium levels, and when a low vitamin D is present at the same time as a high calcium, then there is only ONE condition that can be present: Primary Hyperparathyroidism. Note that instead of the PCP spending 2 minutes on Google to figure this out, he takes the easy route and wants to send her to an endocrinologist).

So, I called the Norman Parathyroid Center in Tampa.  The staff was top notch and very organized from collecting your health information, scheduling your surgery and insurance approval.  Parathyroid.com had more information that you’ll ever need plus information that you can share with PCP about parathyroid disease as well as some great information about low vitamin D.

Now that I’ve had parathyroid surgery myself, I make a point to educate others about parathyroid disease.

The hardest thing is to tell them it’s not the big gland up front (your thyroid) but the 4 little glands that are working hard to regulate your calcium level. The good thing is that I’m feeling like a new person–and it’s only been 3 weeks! The aches are gone and I haven’t had to take antacids for a couple of days now. I started back working in my garden (my favorite therapy) again and get lots of hugs from my kids without the disclaimer.  I’m still not sure I’ll carry on my luggage when I travel just yet.

Another word about my nursing background…

You see I forgot to tell you the most important thing about my background.  Many years ago I used to work as a nurse for this brilliant surgeon in Tampa whose mind never stopped working.  From developing patents, working on developing a new endocrine practice or starting a new dot.com company he was always looking for something to help revolutionize patient care. I’m sure you already know I’m taking about Jim Norman. I was Jim’s nurse for 5 years before moving to Jacksonville. When I called his current nurse Kelly to set up my appointment for surgery we both laughed hard when she said “Does that mean I might get a parathyroid tumor too?”  So yes even those of us who know that it looked and acted like hyperparathyroidism missed the obvious symptoms for several years. I should know better, but the symptoms came on so slowly that I just thought I was getting old, and that menopause was causing some of these problems. We treated the symptoms rather than the cause.  So don’t go so hard on your PCP; provide him/her with information to help others who come to his office with the same symptoms. There are a million of us out there feeling bad because of a parathyroid tumor. We have to help teach!

On another note I could tell you some great stories about Jim but I think I’ll leave that for a future blog…..

 

 

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About Connie Farrell, RN, BSN.

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