Feb 14, 2009
I met with my endo doc yesterday, and he refers to me as a "most interesting case." I have osteoporosis and a condition called hyperoxaluria (high urine oxalates caused by formerly non-existant calcium absorption. So, here's the scoop for those interested:
1) After three months of being on 150 k of D a day, my D is up to a 42!!! I am thrilled, and so was doc. He would like to see me at least up to 80.
2) My PTH has come down to a 74 (10-65 ref range). It was up in the 100's. Good progress here, but still more to be made.
3) My serum calcium is now at the very low end of normal. That's after taking a whopping 5,000 mg of calcium a day. Doc is still not thrilled with this result, as one's calcium needs to be severely depleted in order to be there. He has now upped me to 7,000 mg of calcium a day, taken ALL with meals. This helps bind the oxulates to the calcium. I am not happy with upping the dose because the calcium makes me constipated and bloated.
4) Now, these are the important tests, and anybody who has low D, low calcium and high PTH REALLY needs to get a 24-hour urine clearance test for creatine, calcium and oxalates. This is the only true way to see how much calcium you are absorbing. My 24 hour urine clearance test shows that I am now absorbing SOME calcium. He said that previously I was absorbing NO calcium. He said it was the worst case he'd ever seen. I'm now at a 78 (42-353 mg) and he'd really like to see that get a lot higher. My oxalates are still too high, putting me at risk for kidney stones and kidney failure. I'm at 111.4 (reference range is 3.6-38.0) and this really needs to come down. That's why he upped me to 7,000 mg of calcium. I told him about constipation problems and he prescribed Miralax for me. He told me to take more magnesium.
5) My hemoglobin and hematocrit are heading south again, and I need to get my ferritin checked. I'm thinking I'm probably due for another infusion soon.
6) Now here's the truly sucky part: My doc put me on a low oxalate diet, and the foods highest in oxalates amongst others) are nuts,soy, tea, potatoes, dark chocolate. These are all staples in my diet, especially the nuts, soy and tea! No peanut butter, no soy crisps, etc. I have this 20-some page list of foods I can eat and can not, and there is no rhyme nor reason as to what is high in oxalates and what is not. Fortunately, dairy products and meats are not high in oxalates, but I rely a lot on potatoes as a starch because I do not tolerate white flour. I drink a ton of tea a day. I've been pouting about this issue all weekend!
Anyway, for those of you struggling with calcium/D/PTH issues, I hope that this information helps you.
Jun 17, 2006