“Taking Charge of My Health: My Journey to a Cure for Primary Hyperparathyroid Disease”

For over a year, I often felt so fatigued that I needed a nap in the middle of the day. I’d spend my nights tossing and turning, unable to sleep for more than a few hours at a time. My joints and ribcage ached and at times my heart would start vibrating. I was irritable and cranky with my family, unable to concentrate at work and my hair was thinning and it was alarming to see it falling out. At the time I was 48 years old, but I felt like I was trapped in the body of a much older person. Being a working mother with a busy schedule, I felt uncertain as to whether it was simply fatigue, the beginning signs that menopause was approaching or just a normal part of aging.

Routine lab work in January 2014 associated with an insurance application provided the first clue that something was wrong. The screening process included a very basic blood panel and I noticed that my cholesterol was high. I made an appointment with my General Practitioner to follow up and she ordered more blood work. Two results in particular caught my attention: my calcium level was slightly high at 10.3 (range is 8.5 – 10.1) and my vitamin D level was low at 29 (range is 30-100). She asked me to repeat the calcium test a month later, but the level remained unchanged.

While I was waiting for my GP to call me back I  searched the web for “elevated calcium” and “low vitamin D.” The search results led me to www.parathyroid.com where I read “IMPORTANT: If your blood calcium is high and your blood vitamin D is LOW, then 100% you have a parathyroid tumor.” Once I recovered from the shock that I might have a tumor, I began a layman’s journey of medical sleuthing to search for answers.

While investigating parathyroid disease I learned that everyone has not only a thyroid, which makes hormones, but also four little rice-sized parathyroid glands located on the back of the thyroid. They are responsible for regulating calcium levels in the body. While a parathyroid tumor is almost always benign, its presence can cause a laundry list of adverse effects: osteoporosis (the tumor removes the calcium from your bones and deposits it in your body), kidney stones, depression, constipation, extreme fatigue, heart palpitations, inability to sleep through the night, hair loss, inability to concentrate, bone aches and more. The list of symptoms sounded all too familiar for me not to investigate this further.

While my GP believed I was fine, I requested that my PTH (Parathyroid Hormones) level be tested as this test is necessary to diagnose this disease.  The level came back at 67 (range 14-72). As it was in the normal range, the results supported my GP’s position that I was indeed fine.  However, according to the parathyroid.com website I had a tumor. I was so confused. How could medical information on a website indicate that I have a tumor while my doctor’s office is telling me that I am fine?

The list of symptoms for this disease can vary and in previous years when conversing with my GP, it never occurred to me that they were associated with a particular disease and more specifically a high calcium value. With all this conflicting information,  I decided to try and confirm that I did not have a tumor.

Upon consulting with an endocrinologist, a 24 hour urine test was ordered and showed very high levels of calcium at 416 (range 100.0 – 300.2). I learned subsequently that the urine calcium test is old fashioned and really shouldn’t be done. However, with all my other labs and continued high blood calcium, he was able to confirm that I had primary hyperparathyroidism and that a parathyroid tumor was causing many of the symptoms already listed above. From my research I had learned that left untreated, the adenoma could lead to certain cancers, stroke and heart disease in patients. Even so, the endocrinologist told me not to consider surgery to remove the tumor until my calcium level was 12  – that is unless I started getting kidney stones, signs of depression or constipation! I left his office angry and confused.

It was then that I took a second look the Norman Parathyroid Center at Tampa General Hospital in Tampa, Florida found through www.parathyroid.com. I downloaded an application the Center developed called Calcium Pro, yes, an app for my iPhone and iPad (and Android). I plugged all of my labs values  – calcium, Vitamin D, PTH and urine calcium. My chances of having a parathyroid tumor were shown to be “extremely high” (see side photo taken).

Parathyroid tumor removal surgery is all the doctors perform at the Norman Parathyroid Center, day in and day out, with 23,500 operations and counting. Dr. Norman has pioneered this surgery. I went ahead and registered to become a patient with them and one of Dr Norman’s partners, Dr Lopez, called me a few days later and confirmed I had a parathyroid tumor based on my numbers. They did not need to see a scan to confirm their diagnosis.

In July 2014, I flew to Tampa and had an 18-minute surgery that removed one parathyroid tumor. During the surgery the surgeons, Dr Lopez and Dr Norman,  also checked that my other 3 parathyroid glands were fine. Checking all four parathyroid is not a common practice among all surgeons, as it is a difficult operation to master. I woke up with a photograph of my tumor and a note that said that my tumor was making 1,203 pg/ml of parathyroid hormone (the normal range is 30-80). I did have a tumor and this disease was not all in my head. I had a picture to prove it!

What’s very hard to believe is that I felt like a new person as soon as I woke up from my very short surgery as my body was already healing. My bones stopped hurting right away while I was still waking up from the procedure and the best part is that within two days my energy level was back to what it was years ago. The surgeons told me that I probably had this tumor between three to five years. For the first time in years I now sleep through the night. My hair stopped falling out a month after my procedure, and my heart stopped beating irregularly. My lab tests returned to normal ranges by the time I left Tampa General (they do lab work before you leave the hospital and call you that night with the results).  Here’s what I can tell you: my surgery has been life changing for me. I feel like someone has pressed a reset button in my body. The fog has lifted inside my brain. My body doesn’t ache.

According to Dr. Norman’s parathyroid website “about 1 in 100 people (1 in 50 women over 50) develop a parathyroid gland tumor during their lifetime causing parathyroid disease.” If you have any combination of the symptoms mentioned in this story, you might want to see if you have parathyroid disease. I hope my story inspires you to be proactive with your health and to embrace careful Internet research. I am very glad that I did. I feel that I have been given a second chance at living a healthy life.

In closing, I encourage you to check out our resource list.  The sites I found very useful while conducting my research are among those listed.

Sophie