ObesityHelp

My surgeon and endo are all in the same very large Spectrum practice and in communication with each other.   Nevertheless, I'm going to talk to my surgeon's office to make sure they're up on what's going on.   I'm very surprised that despite my compliance this is happening to me.   I think the problem is that I took my surgeon's advice for too long....taking way too low doses of D and calcium.    My serum calcium is not terribly low, so it did not come up as a red flag until the endo guy did the 24 urine clearance.  He clued me in to the fact that usually serum calcium levels don't dip way down until it's almost too late.    I'm really hoping I can get these fixed without a revision.

I sorta had a comment on every post, but I'll start here. And I love Larra, but I see high PTH, damaged bones and low D across the board, regardless of surgery type.

BUT defining deficiency may be matter of semantics for us. Most with medical training outside the field of specific areas (hematologists for iron type things; endos for calcium type things), just being "in range" is good enough. Clinical deficiency is not declared until the levels drop below the range. So, that may be where we differ.

What was considered a good place to be in the range yesterday may not be good today, as new studies appear so fast these days. So, where *I* see problems with low D, high PTH, they may still be technically in a good range clinically, but not in a good enough range to do the job.

does that make sense? D is the easiest to use, because in 2005, 40 was considered an ideal level. By 2007, the desirable range was the 70-100. We still think is ok in 2008. Is it ok? Waitin' for the next study.

I just attended a short conference on D and metabolic disorders. There was a D specialist there.

BUT he didn't recognize that any kind of bypassers will lose their fat solubles, just faster/slower. His recommendations to hold good levels post-any WLS topped out about 1000 IU. And he made no distinction between D2 and D3.

So, he was an expert. But he didn't know much about vit D and malabsorption OR how to cover it/treat it or prevent it.

I was hoping to learn some new trick to deal with it and I got what was new info 5 yrs ago. Very disappointing.

As far as bones, 60% of us (that's the most recent study) go into surgery with some bone loss. The old "fat ppl have dense bones" is myth. Maybe we did once, but not for long. We lost bone mass with EACH weight loss. And never put it back. We also NEVER had enough D. D was stored in the fatty tissue, not available for use by blood or bones, so basically stored in a "shell" outside our bodies. The big conference this summer stressed vit D, PTH and dexa testing pre-op to see how bad the damage is. Yay! But sadly, that will be a very small group for many years. And many people will not fit into today's dexa machines at full size.

I was reading a short article in Bariatric Times today in which a surgeon commented that he sends ppl to endos, but he's never gotten a referral for surgery from an endo. Interesting observation.

High PTH goes with low D, and that is pandemic, according to much of what is shown to the public (tv, paper, magazines). I get a lot of calls from normies with these issues. They're just a bit easier to fix than we are.

There are lots of studies on D2 vs D3, but my own endo didn't catch it, either. And he was going strictly by the amount of elemental calcium per pill when he recommended OScal. I had to pick my eyeballs up off the floor when they bugged out. However, he does retain info, as he has never suggested a carbonate to me again. As for the D2-D3, and loss of fats/oils, he's still trying to wrap his brain around it. Now, why do I see him? At least he is not rude, nor does he blame my issues on my obesity, which I hear often. "If you weren't so fat, you wouldn't have had this surgery and you wouldn't have this problem". So, if I wasn't a redhead, I could hang out in the sun. If I was taller, I wouldn't need to have any little ladders in every closet, would I? So, now we have to go from what IS and work with it. I see no point in humiliating a person to treatment. Anyone ever see that work better?

My osteoporosis was dx in 2000, when I was 50, and 6 yrs out. I have for many years blamed the wrong calcium and not enough of it. We were launched on 1600 IU of vit D (dry D3). So, it wasn't enough, but it was thought to be enough i***** And now I suspect that I went into WLS already osteopenic, at least. And before you start connecting dots, until just before my WLS, I was a dairy junkie, so if dairy had been the source of calcium as claimed, I (in theory) wouldn't have had any issues. It's not.

Everything I've read also indicates that if D or calcium is out of whack, none of the current drugs are recommended. Since I've been able to hold my levels for years, I'm just completing a 5 yr course of Actonel. It's gotten me 5% improvement in hip and spine, but not wrists. And that's nice, but not good enough. I'm still in osteoporosis, not going back far enough to reach penia (thin).

My endo sent me to the expert in these parts, and since all the blood levels were good, she pronounced my lack of bones a result of the one big wt loss (150 lbs) and that's that. End of discussion. Waste of gas and parking fee.

I am also looking for someone who "gets it" and can teach me more, even tho I have to run everything thru my filter of malabsorption, the more I understand, well, the more I understand.

WE've done the urine excretion tests and each time are excreting not enough in the surgeon's opinion, too much in the endo's opinion. I did ask for oxalates to be tested. If I'm tied to a jug for 24 hrs, may as well test it for everything you can, right?

Oxalates = stones, so we won't be wanting any of those. Calcium citrate and the BA Crystals both can help bind the oxalates, btw.

So, being tied to a jug didn't make us any smarter, just assured us that the oxalate count was low enough that we could take a deep breath.

The long term ramifications are frightening. Denied life insurance; long term disability; long term care insurance or rated.......... Once you've got the label, even if you don't fracture, your life still changes. I still worry if the "hump" starts, how long do I have before the spine collapses completely, crushing the lungs?

We didn't find the high dose D3 until a few years ago. And there are threats that it will be taken off the market. The drug companies do not like competition. Since it beats the socks off D2 in oil, I would guess we will not have access to dry D3 OTC for long. At least in doses over 2000. And then we will be dependent on a doctor to write for us, and they are chronically afraid of toxicity. So, while you don't bat an eye at 150 k a day and I know a few on 250 k a day, most docs would only ramp up to 50 k maybe 3x per week. Much better this way where we have some control over our own health.

As to the 500mg rule, it's still what is taught. I kinda had to toss it awhile back. I take all of these: my capsules; upcalD; BioTech Osteo-Tech (microcrystalline hydoxyapatite); the BA Crystals (lactate gluconate; and occasionally the BA cinnamon chewables (have to be in the mood). I've lost track of the mg.

And finally, while i've talked forever here and not really concluded much, you are maybe the 8th person I've sen NOT respond to the mega dose of the correct D. I need to find more info on "d receptors blocked" and then, of course, how do we unblock them. I don't even know where to LOOK for more info on that. My own dh held levels around 60 for a yr, but then they dropped to 45? What's up with that? While mine shot up to 160, he was going down, both of us taking the 50k?

I do wish every person who sees an endo would ask about this strange thing. If there is some reason a D receptor would block, can we unlock it with diet or supplement? A drug? Surgery? We can't be running around here with no vit D on board. Not at all.

I am surely a lousy typist, just fast. LOL

But if am interrupted, i tend to write in circles. Glad it made sense to you.

Then, to complete one of my worst luck years ever, the perpetual cat on my desk poured water into my keyboard.

Kinda like, if I had any luck at all, it's all bad? Sheesh.

OK, I'm bringing your post down here so I can write among it.
***
I too need to find a doc that "gets it." I have heard that there is a D specialist down in Detroit, about 4.5 hours south of me. I don't even want to bother making an appointment with her unless I know that she has bariatric malabsorption experience. I'm a proactive kinda gal, and I want to do anything and everthing I can do right now to stave this off.
**** i know. I dig up a bit here, a bit there. I want someone who knows way more than I do. I guess I'll always be running it thru the malabsorption filter, as I've not found many who speak the language.

At least my endo guy did know that serum calcium levels are worthless,
*********** well, they can serve as a red alert if they get too low or too high, but they are among the last to know what the heck is going on

and that I needed to carry that ol' jug around with me for 24 hours to get a better picture of what's going on, eh? I also have to grant him knowing that I won't go toxic on the amount of D I'm taking.
************** all bonuses, AFAIC

A couple of questions here:

1) I am taking my D at night. I do most of my pooping either in the midldle of the night or early in the a.m. Perhaps I'm pooping it all out. I'm wondering if I'm better off taking my D in the a.m. so that it can have more absorption time, know what I mean?
************ well, I'm not wild about your schedule. Too much glomped together. You've only got so many fingers in there to grab stuff, so you've given it a lot to do by taking it as you do. Of course, insert medical disclaimer here (well, in everything I say)

2) I asked him if it made a difference whether I spread the dosage out or took it all in one fell swoop. He said it didn't matter. What do you think?
************* I take my D in one 50k, but it works for me. I've been eyeballing my dh for awhile and wondering if feeding him two 50's OR 10 5's would be more beneficial. I have a 10k, but it's not a capsule, so it'll smoosh up in pill packs (we do 90 days), and it's sublingual, so higher priced. Yes, I know I make myself a good deal, but I can still squeeze a nickel tighter than anyone.

3) Also, my instincts are telling me I need to mix my calcium up a bit and not just take the Citrical (or generic substitutes). I have been taking Upcal a couple of dosages a day, but I'm thinking that maybe the liquids might be a better delivery. With your products, and I see you mention the crystals, do you have any thoughts on what is preferable?
************* well, as you see, I'm taking 3 versions now.

4) What about calcium apatite?
************ which is the BioTech OsteoTech. I've been watching this for about 10 yrs. So, while I can't make any conclusions, because I doubt anyone was taking enough of it. At least I didn't see damage like with carbonate (same as nothing). So, for me, I just added it. And for ppl thinking, sure, but adding all that is expensive. To me, nothing cost me quite as much as knowing I'd better not live longer than 4 yrs in a long term care facility cuz I'm out on the street at 4 yrs with osteoporosis and I can't change insurances. Why? Osteoporosis. And so. Once you get the label, you're in big trouble.

When I broke my arm last year, it cost my insurance around $50k. My out of pocket was over $1500. Thank goodness I had AFLAC, which covered all that. But that was just a broken ARM. Imagine what a HIP would cost?!?! Especially with no bones to even knit back together.

So, I'm throwing everything at it that I can. Did I say that I cross checked the crystals with someone other than BA? BA has mega-integrity (and I don't say that about just anyone!), so I was already mostly on board because they are who they are. But I had to ask the question about the crystals also being anti-kidney stone before I stick it to my name. It is, so I did.

Now, it's only been on the market since the conference, so of course, I have no track record. I am just finishing my first jug of it. I'll have a dexa in Dec. BUT I've added the Osteo Tech (in June) and then the crystals. And K2. And K1. And just recently strontium. So, of course,. when I get my result, um, what exactly will it tell me?

If it shows improvement, I'm going to continue with ALL this stuff. I wont' question which one or two or 6 or combo helps, I'll just do it.

5) What's up with the D, calcium, PTH and K connection? I ordered some dry K from you last time I ordered, but because my K levels were normal at my two-year, I am not taking it, should I be?
************* well, I tread cautiously in K-land. Firstly, I'm not fluent in K. I figure I know more than I did 6 months ago, but the one thing you can be sure of: it IS malabsorbed along with A D E. I have no idea how long it takes to deplete your supply. Our first test was in Oct. For me, I had 4 things blocking K. The malabsorption and 3 rx I take. Sooooooo, I played with the 100 mcg first, then read it again, and thought, I WILL test, so then took the 1000 mcg for 90 days. AND I WAS STILL LOW. My dh dutifully ate the 100's I gave him on general principals, but he was WAY low. So, we're both doing 2000mcg now.

Our labs go to 6 docs and none have commented on the low K levels.



6) Here's what I'm currently going to be taking:

With all meals or snacks:
900 mg of calcium, 6 times a day
*********** is that 900 total or 900 x 6 = 5400?

Nighttime:
2 adult multis
100 mg of zinc
150 k iu D3
60 k dry A
1 Super b
Vitamin C
* I do not take iron, because I am infused once a year. Hemo says it's worthless to take it cause I'm not absorbing it.
********* well, I'd prolly differ there, thinking that if you work at it, you can eventually find an iron that will absorb. But ideally, you just space out infusions more and more as the orals kick in and eventually just wean off. But it's not over night. Took my friend 3 yrs to get less, less, less, further apart, further and finally............ none. The orals grabbed her at some point not only held her but pushed her up in to fabulous ranges. (120cm)

I've brought my zinc up to desireable ranges, A is good, K is good, supposedly.
************* got 'em? Is K tested? A needs to be 60-80.

Anything else? A better schedule?
********** prolly but email me to me. michelle@vitalady.com

Do I need to remind you again that I'm not medical, just opinionated?

Julie,

I am so sorry you are going through this. I really hope you are able to get some real help in sorting it out and getting your levels back where they should be. Please keep us in the loop.

Bev

Are you doing any exercise?  Do you get any sunlight?

Hey Julie,

((hugs)) I hope you get this straightened out soon. As you already got a wealth of info on this. I know I can't add anything other than my support and well wishes.