Primary Parathyroid issue since 2016. Endocrinologist wants me to take Sensipar. I have osteoporosis on wrist on dexa scan. I am debating what is the best option for me as I got told that I might have all 4 glands involved. On scan it looks like left upper one but images are not great. In past I follow Mayo clinic and just wait and watch game. Do you have any advice for me? I am from Iowa. My calcium level is not high but in range of 10-10.5 mg/dl, Vitamin D is always low. PTH between 80 to 129 pg/ml. I am 75 years old.
Your labs are diagnostic for primary hyperparathyroidism, with elevated calcium and PTH levels. Low Vitamin D is also classic in primary hyperparathyroidism.
The only cure for primary hyperparathyroidism is an operation to remove the abnormal parathyroid gland or glands. Sensipar is a medication that can reduce your calcium and PTH levels. It will make your labs look better on paper, but will not really treat the underlying condition. It is not a cure for parathyroid disease. Also, many people cannot tolerate the drug due to side effects. Sensipar is a medication that is commonly used to treat secondary hyperparathyroidism in patients with kidney failure. It is not a good treatment for primary hyperparathyroidism. For primary hyperparathyroidism, it may be used as a temporary measure if someone has very high calcium levels (usually something like 13 mg/dl or higher) and they cannot get surgery. If your calcium is staying in the 10s, then there is really no reason to take Sensipar.
Scans cannot be used to determine how many parathyroid glands are involved. Scans are often negative (as in, they do not show ANY enlarged parathyroid glands), even in patients who have just one parathyroid adenoma. Having a negative or unclear scan does not mean that you have all four parathyroid glands involved. Similarly, having a “positive” scan that shows one enlarged parathyroid does not guarantee that the other glands are normal. You can have a scan show one parathyroid adenoma, and then find a second adenoma in the operating room. For this reason, I always look at all four parathyroid glands in the operating room.
I would recommend speaking with a parathyroid surgeon. The problem with “watch and wait” is that we know the long-term effects of untreated parathyroid disease. These include osteoporosis and fractures, kidney damage, high blood pressure, fatigue, brain fog, kidney stones, and many other symptoms. It is a good idea to get this treated when it is diagnosed.
