When you take calcium, it first had to get from the gut into the bloodstream, and then (assuming you need to be building bones) into the bones. If you’re peeing out an excess of calcium, you’re absorbing more than enough, but not utilizing it for some reason. You might need to speak to an endocrinologist - but beware - while it’s not impossible, endos who don’t understand the DS sometimes leap to the conclusion of primary hyperparathyroidism and want to remove the parathyroids. Most of the time, that’s not appropriate - it is getting the body to respond to the PTH by putting calcium back. It may have to do with other micronutrients like boron or magnesium or K2. Find a bone/bariatric expert. Ask Belzberg.
Thanks, Diana. I always like to hear from you as I know you have not only the science background but the DS life experience.
The Kaiser endo tested me for Parathyroid issues. First via ultrasound and then confirmed with a Sestamibi. She said I'm good.
After my last DXA, I upped calcium to 5 x day (combo of citrate, hydroxapetite and even one slow-release carbonate) with Magnesium and boron citrates in each batch. I also started 680 Strontium in the morning, away from calcium. I'm now taking a total of 2,600 calcium, 1,200 magnesium and 15 boron. And I upped my K2 MK7 to 400 mcg. I've cut caffeine and will add the elliptical and other hip exercises to my walking routine. In six months I'll ask for another DXA to see if I have slowed down or, hopefully, arrested the DXA slide.
My hope is that I'm doing better at absorbing the calcium now than during the first urine test when I was only 8 months out. Although I did have one as recently as March of this year when I was only taking about 1,500 calcium and it was still 306 (250 normal high).
Doubt there's a bone/bariatric expert, per se at Kaiser, but I'll found out. Yes, I may speak with Belzberg if just to see if he knows someone who can figure this out. I think he's a very dedicated and talented surgeon, but I don't think he delves too much into DS issues once he's done his job. It's kind of like a baton pass at Kaiser, as you know.