Have been told I have FHH, at 72, with normal calcium in the 9's my whole life until five years ago. My calcium for the past years has been over 10 (10.6 highest). I have 190 PTH, very very low urine calcium, and the radioactive scan shows an enlarged parathyroid. I have almost all the other symptoms indicating Hyperparoidism, except weight loss. Doctors do not want to remove enlarged gland, citing FHH. No family history of FHH.
Anyone else being told something similar? FHH supposedly manifests before 10, and lasts your entire life.
I'd suggest you to get a second opinion, if you can. Chances are far bigger you were misdiagnosed with FHH - it's a rare genetic disease and you'd have to have a family history of the disease. In families that have FHH genetic markup, almost every member of the family has high blood and low urine calcium levels. It really doesn't come out of nowhere. Also, FHH doesn't cause the same symptoms hyperparathyroidism does. What is a problem though, is the cause for your calcium levels to be off. If the scan already showed your parathyroid is enlarged, chances are fairly big that's what's causing the problem. Whether or not you need parathyroid surgery should definitely then be decided after you first get diagnosed properly.
Wish you all the best,