Hi Peggy…Thanks for sharing your experiences. I am not a licensed medical practitioner so what information I share is from my own experience and research and cannot be considered medical advise for diagnosing or treating any medical condition. (There, the legal part is done.) When they first suspected hyperparathyroidism, I started my research. I did work in medicine for 42 years so I understood the terminology and the pathophysiology they discussed. But I stumbled upon a website that turned out to be lifechanging. There is an endocrine surgical practice at Tampa General Hospital called the Norman Parathyroid Center. Hyperparathyroidism is the number three endocrine disorder in the world so it’s not as rare as you may think. It’s just that most physicians don’t have the information they need to make a proper diagnosis. I’ve found that way too many want to take a “wait and see” attitude and that’s not helpful with this disorder. As a matter of fact, left unchecked, it can shorten the life span by years because of damage to the cardiovascular and renal systems, as well as osteopenia or osteoporosis. You can find an incredible amount of information on the NPC website at https://www.parathyroid.com with videos, articles, and charts. You can also download their app called Calcium Pro on your iPad or smartphone. You enter your labs and it calculates what your chances are of a diagnosis of hyperparathyroidism. As far as the tests that diagnose primary hyperparathyroidism, you should have Blood Calcium, Ionized Calcium, Blood PTH, Vitamin D3, and a 24 hour Urine for Calcium. Also, a DEXA scan tells the doctor how much bone loss you have suffered. I am the point in my life, with my medical experiences, I am a powerful advocate for my own health. There are ways of being assertive without making a doctor feel denigrated or untrusted. It is by all means your right to get a second, or even third or fourth opinion. Hubby #2 is an internist and he told me when I got to the point of having surgery, I should have it done by a surgeon who does these surgeries a lot. No one in the world does more parathyroidectomies than the Norman Parathyroid Center so that is where I chose to have mine done. Even with being in a top endocrine surgery center, my surgeon was still unable to find two of my parathyroid glands. He feels they are down in my thymus gland which is in the top of my chest.

I hope this information is helpful and I wish you all the very best in finding a solution to this disease. It is a hard diagnosis to get, but hang in there. I am still cautiously optimistic that my surgery was successful because my pain is nearly gone and I drank REAL caffeinated coffee this morning for the first time in six months without serious acid reflux. I know the doctor couldn’t visualize my two lower glands, but I am still hopeful.

Ginny