from the Experts at the Norman Parathyroid Center
Interesting stories of hyperparathyroidism we see every day. Parathyroid blog published bi-weekly.
Today’s hyperparathyroidism case is quite sad and completely avoidable. Today we operated on a 15 year old high school freshman from Baton Rouge, Louisiana who had quite severe hyperparathyroidism. He was eventually brought to our center by his parents when his orthopedic surgeon made the diagnosis. Sadly, their family doctor and pediatrician remain unaware and were “keeping an eye on the high blood calcium”.
This case illustrates teenage hyperparathyroidism very well. He had very high blood calcium levels and weekly headaches, which we see in almost half of teens with parathyroid tumors. He had kidney stones which are more common in teens (boys and girls) than they are in adults. He was an honor student who became a “c” student.
Over half of the cases of teenage hyperparathyroidism have a terrible story that comes with the high blood calcium, often this is because it takes doctors too long to figure out the problem and the high calcium causes dramatic problems in these young people. Often it is the difficulty learning and poor performance in school that is heartbreaking in teens with primary hyperparathyroidism, sometimes it is depression (and even suicide attempts). The terrible aspect of this case is shown in this x-ray of his spine showing the tremendous spine deformity (scoliosis) that occurred because his parathyroid tumor was not removed sooner. This young man has had very high blood calcium levels for at least 6 years (over 11. 5 mg/dl). The significance of this high calcium was not appreciated and because a parathyroid hormone (PTH) level was within normal limits (59 pg/ml), his doctors felt that hyperparathyroidism was not the cause and that they would just ‘monitor” the blood calcium. Unfortunately this tumor has destroyed this young mans bones resulting in severe scoliosis of the spine for which he will be undergoing back surgery for next month (and placement of steel Harrington rods in his back to keep his spine straight). This young man’s spine has been destroyed by the very large (2.4 cm) parathyroid tumor that has prevented the normal growth to occur and made his bones very thin and weak. This is a permanent spinal deformity that was completely avoidable had this tumor been removed years ago.
Teenagers do not have “subtle” hyperparathyroidism. Their calcium levels are almost always very high (85% have at least one calcium level above 12.0 mg/dl). Our upcoming publication on our last 100 teenagers shows that their calcium levels are significantly higher than adults with hyperparathyroidism. but their tumors are smaller in diameter and weigh less (all p<0.0001). These smaller tumors are more difficult to find on scans, and thus teens have negative scans 3 times as often as adults. As always, scans are never to be used to make the diagnosis of primary hyperparathyroidism, and scans are never to be used to determine who can or cannot have a parathyroid operation. Stop getting scans folks–they are wrong more often than they are right and they cannot provide information that can be used to make decisions. And please, remember, parathyroid disease (hyperparathyroidism) is not to be “monitored”. These tumors destroy the body in ALL patients, so waiting for something bad to occur is dumb.
The final lesson that this case makes is that a high parathyroid hormone (PTH) level is NOT required for the diagnosis of primary hyperparathyroidism. Our publication in 2010 looking at 10,000 patients with pHPT showed that 18% of patients with a large parathyroid tumor (and primary hyperparathyroidism) will have all normal PTH levels–they don’t have even a single high PTH level. They have “inappropriately normal” PTH levels (they are not suppressed to near zero).
This young man suffered from decreasing school productivity, poor grades, difficulty learning, in addition to the destruction of his spine simply because his doctors didn’t recognize the parathyroid tumor and didn’t pick up the phone to ask somebody with more knowledge. His operation took 17 minutes and he was cured of this disease. Unfortunately he will need treatments for life for the destruction and malformation of his spine caused by the tumor. Remember, it is not normal to have high blood calcium–it really is that simple!
James (Jim) Norman, MD, FACS, FACE, is recognized as one of the world's foremost expert on parathyroid disease and hyperparathyroidism and has treated far more parathyroid patients than any other doctor in the world. He is the founder of the Norman Parathyroid Center in Tampa, Florida, the world's leading center for the diagnosis and treatment of hyperparathyroidism. Dr Norman has made numerous contributions to to the understanding of parathyroid disease and is credited with dramatically changing the way parathyroid surgery is performed. He is a fellow of the American College of Surgeons (FACS) and also a Fellow of the American College of Endocrinology (FACE). He is recognized in the top 1% of all surgeons by US News and World Reports in addition to dozens of other awards and Best Surgeon accolades. He has published over 250 peer-reviewed journal articles. Dr Norman and his partners perform more than 3,600 parathyroid operations annually on patients from all over the world.