Parathyroid disease, Vitamin D, or leaking kidneys???

by PTHconfused
(Canada)

Hi there,

For the last year I have been quite ill. Mainly it has been terrible pain in my hips, leg muscles, knees, and lower back. I have had an unexplained high heart rate (although no heart malfuntion was found), horrible anxiety, my hair is falling out, and a variety of other symptoms. Lab work uncovered low vitamin D (Canadian measurements are different...mine was 30 nmol/ l, normal 80-200), high PTH (ranging between 56-97 ng/L), and a few times I had low serum phosphate. My serum calcium has been on the normal range (once BELOW normal), but my urine calcium has consistantly been above normal for a year now (with calcium oxalate crystals being found regularly).

I was put on a 50,000 iu/week treatment for three months and felt AWFUL!!!! My urine calcium spiked during this time and my family dr removed me from the treatment. The endocrinologist seems to be passing me between dr's, and doesn't know if this is primary hyperparathyroidism or secondary. His oringinal concept was that it is secondary to low vitamin D, as my serum calcium is normal. But another specilaist says that with high urine calcium, the kidneys HAVE to be clearing the excess from my blood, which is the only reason my serum calcium is not high.

I don't know what the heck is going on. I just know I have been sick for a year, and feel terrible. I need to get this sorted out. I am a single mom and need to take care of my children.

Any feedback????

Thank you.