Julie R., Gina and anyone else struggling with bone loss/vit D problems long-term

 Hi y'all,
I've been off living my life for the last few months, so hello to all the new faces! 

I need some help with my vit D and likely ostopenia issues. I know Julie and MajorMom have dealt with this a lot, and I hope they and anyone else with any experience in long-term D absorption/bone loss issues will chime in.

I'm nearly 2 years post-op, and basically my D has never been out of the 30s. (It was in the 40s pre-op, so I'm probably just not good at absorbing D.) Over the last 2 years, I've taken 100K, then 150K, with meals, apart from meals, and lately, as soon as I get up in the morning, with 300mg of magnesium citrate. I take my thyroid meds around 2am when I wake up, because those really demand an empty stomach and nothing else with them.

I just got some labs back, and they are not good. My D went up 3 entire points, to a whopping 36. Even more exciting, my PTH leapt up, from 108 (bad enough) to 147. Also, my ALP is up, to 121, just above the high end of normal. ALP rises either from liver or bone problems, according to labtestsonline.org, and I think it's safe to think it's from bone issues here. My serum calcium is 8.8, on the low end of normal.

So what the heck is my next step? I can up my D intake to 250K, but I honestly wonder if it will help. I am upping my calcium citrate and mag citrate (from 2,000 calcium to 2400, maybe more). My calcium has 3mg boron per serving--should I add more boron? Some strontium? Have vit D injections helped? Sublingual D? Tanning beds?

In short, what has helped people who have really struggled with bone issues?

My annual visit with my PCP is tomorrow, so I'd like to go in with some ideas. I'll be getting a Dexa, so we will see what has happened in the last year with that.

Y'all are the best. Thanks for any help!

Hi Jenn,
I don't have the same trouble as Julie absorbing but my levels dropped and went nuts when I started taking Fosamax for osteoporosis. If I had to do it over I might have gone to see rheumatologist who was familiar with malabsorptive WLS. There's an injectable drug that is supposed to be much better than Fosamax. Forteo is it's name. Anyway, this was my routine to bring my levels back up and push my PTH back down:

Big morning batch of vitamins includes 600mg calcium citrate, 500mg magnesium citrate, 3mg boron, and 150mcg vitamin K2. I also take 600mg of milk thistle at this time for liver function and 20,000IUs D3 in sublingual form. During the day I take 4 more calcium, mag & boron batches. The big evening bat*****ludes another batch of calcium, mag, boron, vitamin K2 and a 50,000IU capsule of dry D3. You might want to bump this to 100,000IUs to see if you can get your level up. And, another 600mg of milk thistle. At night I would take 1 - 300mg capsule of strontium. On Sundays, in addition to the above, I take a Fosamax and I tan for 8 minutes. My last level for vitamin D3 was 137, so I've cut the D3 sublinguals and we'll see what happens in August. My calcium was back to 9.0 and my PTH was 63. PTH is still higher than I like but that might be the Fosamax. AST is normal at 29 but ALT is still a little elevated at 70. Fosamax does a number on your labs. They were perfect when I started on the Fosamax. So if you do have to start an osteoporosis drug make sure you've done everything you can to get your labs up first.

Good luck and please keep us posted.

--gina
   

 Thanks, Gina! For your comments here and on FB.

I needed that reminder about K2. I take it, but I could up that dose as well. It's probably worth trying the sublingual D, too.

I'd forgotten about hormone replacements. Those were also prescribed when they first diagnosed me. 

--g
 

 NOOOOOO, not exercise!!!

Seriously, that's probably a good suggestion. My endo would approve. She's my endo for diabetes, and I hate the thought of having to go to another endo for bone stuff, but it may come to that.

I think some of this is being precipitated by perimenopause, which has very obviously kicked in in the last few months, so hormones may make sense. Thanks for the suggestion. And also the liquid calcium, probably a good call there as well.

I think you should consider seeing an endocrinologist.

 I currently have no results on where I'm at with my D, and I haven't been tested since September.   I know, I know, I should have.  I've been busy restoring a house, moving, and working.   Once school is out next month, I'll jump back into gear and see where I'm at.   At my last check, my D was a 31 (up from an 18) and my PTH was 156.    Endo doc says he's seen far worse, but all of my bone marker tests were yukky and we need to meet and discuss.

Here's what I've been doing, and hopefully it's working:

6,000 mg a day of calcium in various forms (chewable citrate, hydroxyapatite and plain ol' Sam's Club calcium citrate)
150,000 iu of D a day - 100,000 sublingual and 50,000 dry at bedtime.
About 1,000 of mag citrate a day (should be more)
About 3,000 mag ox a day
My calcium hydroxyapatite formula also contains boron, K1, K2 and silica (can't remember quantities) 
On top of all that, of course, is my E, copper, A (100,000 iu), zinc, multi, B12

 Thanks, Julie.

You know, I've been curious but never bothered to ask before--is the idea with the 6K of calcium that you're absorbing so little, you need more than the average bear? In other words, the typical recommendation of 600 mg every 4 hours just doesn't apply to your particular physiology?

And am I right in assuming (so dangerous!) that the mag ox is to counteract the calcium constipation effects?

Do you see an endo who specializes in non-diabetic or even bone stuff? I love my endo, but her focus is diabetes, and I'm starting to feel I'm a little out of her comfort/knowledge zone.

I'm crossing my fingers for your next round of tests.

 Yup on the 6 k - plus my oxalates and kidney stuff is crappy, so they want me to take more for that.    I take calcium any chance I can - with meals, between meals, before bed, when I first wake up.   I even put UpCal D in my morning tea, LOL.

Yes, the mag ox counteracts the calcium constipation - it's been touted as helping with calcium absorption, but according to vitalady, it's the mag citrate that does that.    Since I started taking citrate, K1 and K2, my serum calcium has finally gone up into the normal ranges.

Get yourself to a bone and mineral specialist.     That's an endo who specializes in our kinda stuff.