Yet another ? I should have asked 11 years ago...

[Spiky Bugger]

So...what, exactly, does "absorption" mean and how does it work?

@Larra @DianaCox and you other Smarties...

Let's say that you malabsorb.
Let's also say that you develop kidney stones.
Let's further say that one way to try to prevent calcium oxalate stones is to make sure that every bite of an oxalate-containing food you consume is accompanied by some calcium to bind with in the gut so that it can poop out (and not find its way to the bladder and make stones.)
Let's conclude the premise-building by mentioning that you wonder about a lot because you have little actual knowledge.

Then you get to the question of How Much Calcium, don't you?

•The average human body "absorbs" about 500-600 mg of calcium at a time and then needs about a two-hour break?
•When we say "absorbs," what do we mean? Is this in reference to how much calcium gets into the "blood stream," the "serum calcium" we test for?
•What about the (chewable) calcium supplement you take WITH a meal? It would seem that THAT calcium has not had time to do much more than travel to the gut and meet up with the oxalates you just ate. Maybe?
•If you start out with malabsorption, then you are probably not absorbing all 500-600 mg of the supplement, right?
•Given your malabsorption...AND given that you don't know if the calcium taken with a meal even factors in to the equation...how much calcium is too much?
•••And finally (maybe), if your serum calcium is at the low end of the reference range, and your PTH is at the high end of the reference range, then you might not be overdosing on calcium, right (?), so how often are you going to test that value?

 

[DianaCox]

(I'm sure this was a typo, but you don't want the calcium and oxalates in your serum to meet up in the kidneys, not bladder, where in the process of filtering the blood and concentrating elements for removal, the calcium and oxalates end up binding to each other and precipitating out, like salt precipitates from sea water when the water evaporates.)

First, I am NOT an expert on this - so this is complete speculation.

I suspect it's hard to overdose on calcium supplements, serum-wise, because I assume the gut calcium receptors "know" when the serum has enough calcium and won't absorb too much.

However, you are eating a low oxalate diet already, so you shouldn't need vast quantities of calcium in your gut to bind to the oxalates that are in your food; therefore, you need to take enough calcium to bind to the oxalates in your gut, and to overcome the malabsorption to get ENOUGH calcium into your blood; it is likely the amount you take over the RDA for normies provides in what you can't absorb an amount of calcium that remains in the gut that is already sufficient to bind to the oxalates. The amount of calcium over this minimum probably mostly contributes to constipation.

I further suspect that all this kidney stone forming you are doing (and the lowish serum calcium and high PTH) is a result not of too much or too little calcium, but rather imbalances in the other calcium-affecting nutrients - magnesium, vitamin K2, and citrate. And possibly vitamin C, which is converted in the body to oxalates.

You want to take calcium citrate with meals, to both absorb enough calcium and to provide some excess in contact with your meal to bind to the oxalates. The 500-600 mg/2 hours is a guesstimate of how much calcium the body can absorb at a time - the gut receptors have to bind the calcium and move it across the gut wall, so you can't dump too much on them at once, or they won't be able to transport it, and it will just pass through you.

I'm sure you've discussed this with Dr. K - what did he say?

 

[Jbandmmomma]

I like Diana's reasoning for the suspected causes.

 

[southernlady]

I second that!

 

[Larra]

I have absolutely nothing intelligent to add to @DianaCox 's speculations.

 

[Spiky Bugger]

(I'm sure this was a typo, but you don't want the calcium and oxalates in your serum to meet up in the kidneys, not bladder, where in the process of filtering the blood and concentrating elements for removal, the calcium and oxalates end up binding to each other and precipitating out, like salt precipitates from sea water when the water evaporates.)

First, I am NOT an expert on this - so this is complete speculation.

I suspect it's hard to overdose on calcium supplements, serum-wise, because I assume the gut calcium receptors "know" when the serum has enough calcium and won't absorb too much.

However, you are eating a low oxalate diet already, so you shouldn't need vast quantities of calcium in your gut to bind to the oxalates that are in your food; therefore, you need to take enough calcium to bind to the oxalates in your gut, and to overcome the malabsorption to get ENOUGH calcium into your blood; it is likely the amount you take over the RDA for normies provides in what you can't absorb an amount of calcium that remains in the gut that is already sufficient to bind to the oxalates. The amount of calcium over this minimum probably mostly contributes to constipation.

I further suspect that all this kidney stone forming you are doing (and the lowish serum calcium and high PTH) is a result not of too much or too little calcium, but rather imbalances in the other calcium-affecting nutrients - magnesium, vitamin K2, and citrate. And possibly vitamin C, which is converted in the body to oxalates.

You want to take calcium citrate with meals, to both absorb enough calcium and to provide some excess in contact with your meal to bind to the oxalates. The 500-600 mg/2 hours is a guesstimate of how much calcium the body can absorb at a time - the gut receptors have to bind the calcium and move it across the gut wall, so you can't dump too much on them at once, or they won't be able to transport it, and it will just pass through you.

I'm sure you've discussed this with Dr. K - what did he say?

I'm NOT on a low-oxalate diet. I'm also not on the low-FODMAP diet or the Interstitial Cystitis diet. Because following doctors' orders on diet would leave me NOTHING to eat. Srsly. Dr. K agreed that those diets, especially in ONE PATIENT, were ridiculous...each specialist looking at his problem and nobody listening to me as I keep screaming, "What about the rest of me?"

He just said to increase calcium.

But...the deal is that guesstimating has gotten me where I am today...which is that MOST values are pretty good...but I will continue to need iron infusions (trying a new formulation tomorrow, if insurance plays along...which would be a good thing since it's a 15-minute infusion!) and I have not managed to master the calcium thing.

I don't take Vitamin C...and I upped the Vitamin K when my blood clotting was taking too long...and the clotting improved. Does that mean I have "discovered" the right amount of K? And freaking Citrate, which is on the IC no-no list is going to be difficult without LOTS of pain relief and, oh yeah, Prevacid for GERD also DECREASES stomach/gut acid levels adding to the stone problem.

Do endocrinologists (help) monitor all these things? Because it is beyond my level of understanding to treat.

I see my PCP this afternoon and will bug him, too.

 

[bearmom]

I'm glad you're asking, not that I have answers, but I want to know too.

Well, my endo does look at all of this, but your issues are more complex than mine. I used to like the nephrologist to deal with it, but my new endo looks at the whole picture and all related stuff. I LOVE her. Oops, did I just type that out loud?

She does happen to be fairly young, but is eager to learn about the DS, and looks at my thyroid, pth, vitamin D and kidney stone stuff as a puzzle to solve and how everything can affect everything else. So far, she has been spot on with everything, even if it means doing something outside the box.

Diana's speculation seems logical, and sometimes that'a all we have to go on. I think you need a sharp endo to help with your puzzle.

 

[DianaCox]

There are two vitamin Ks - K1 is for clotting, K2 is for bones/calcium absorption. Are you taking BOTH? You should be.

I agree with Dr. K about (mostly) ignoring the oxalate content in foods, and taking more calcium WITH meals to keep the oxalates out of your blood in the first place.

As long as your insurance is covering iron infusions and you don't have to take oral iron (which makes the timing of taking calcium tricky and hurts the guts), I would not worry about iron.

Except - you have one of the thalassemias, right? Even though you're anemic, you can be suffering from iron overload? Is that being taken into consideration in giving you iron infusions?

"Mild thalassemia: people with thalassemia traits do not require medical or follow-up care after the initial diagnosis is made.[14] People with β-thalassemia trait should be warned that their condition can be misdiagnosed as the more common iron deficiency anemia. They should avoid routine use of iron supplements"​

Too much iron in thalassemia can cause all sorts of havoc:

"Iron overload: People with thalassemia can get an overload of iron in their bodies, either from the disease itself or from frequent blood transfusions. Too much iron can result in damage to the heart, liver, and endocrine system, which includes glands that produce hormones that regulate processes throughout the body. The damage is characterized by excessive deposits of iron. Without adequate iron chelation therapy, almost all patients with beta-thalassemia accumulate potentially fatal iron levels.[5]"​

Wonder if anyone is paying attention to that?

 

[DSRIGGS]

Sue I wish I could wave a major wand for you. Your battle stinks and I so wish you some relief. This one is way above my pay grade so I am not going to even attempt to give any advice to what to do other than seeing Ara and finding out of he knows any gurus in the field with whom you and he could consult. It really does seem that you need a team and somebody who will step outside the box. You know ara will do that but you probably need somebody else will as well so I am wondering if he knows any young researchers working on this type stuff.

There is a guy on Dr K FB group who is now retired but has done a lot of research around the gut biome and MS (his wife has MS) and he seems like the type who would be a great resource to help with research or research it for you to find answers. I could put him in contact with you if you want. Again I dint know him well and can't vouch for him other than he seems genuinely concerned about people in general and definitely likes to research these type things.

Diana may have met him or at least talked to him because I think he leads or participates in a group of Dr K patients up in the bay area.

Just a thought

Best wishes and if I see Commander Karma that fucker is getting three punches in the face. One for you, one for Clarisa and one from me for my shit (my balls hurt!)

 

[Spiky Bugger]

So...what, exactly, does "absorption" mean and how does it work?

@Larra @DianaCox and you other Smarties...

Let's say that you malabsorb.
Let's also say that you develop kidney stones.
Let's further say that one way to try to prevent calcium oxalate stones is to make sure that every bite of an oxalate-containing food you consume is accompanied by some calcium to bind with in the gut so that it can poop out (and not find its way to the bladder and make stones.)
Let's conclude the premise-building by mentioning that you wonder about a lot because you have little actual knowledge.

Then you get to the question of How Much Calcium, don't you?

•The average human body "absorbs" about 500-600 mg of calcium at a time and then needs about a two-hour break?
•When we say "absorbs," what do we mean? Is this in reference to how much calcium gets into the "blood stream," the "serum calcium" we test for?
•What about the (chewable) calcium supplement you take WITH a meal? It would seem that THAT calcium has not had time to do much more than travel to the gut and meet up with the oxalates you just ate. Maybe?
•If you start out with malabsorption, then you are probably not absorbing all 500-600 mg of the supplement, right?
•Given your malabsorption...AND given that you don't know if the calcium taken with a meal even factors in to the equation...how much calcium is too much?
•••And finally (maybe), if your serum calcium is at the low end of the reference range, and your PTH is at the high end of the reference range, then you might not be overdosing on calcium, right (?), so how often are you going to test that value?

There are two vitamin Ks - K1 is for clotting, K2 is for bones/calcium absorption. Are you taking BOTH? You should be.

I agree with Dr. K about (mostly) ignoring the oxalate content in foods, and taking more calcium WITH meals to keep the oxalates out of your blood in the first place.

As long as your insurance is covering iron infusions and you don't have to take oral iron (which makes the timing of taking calcium tricky and hurts the guts), I would not worry about iron.

Except - you have one of the thalassemias, right? Even though you're anemic, you can be suffering from iron overload? Is that being taken into consideration in giving you iron infusions?

"Mild thalassemia: people with thalassemia traits do not require medical or follow-up care after the initial diagnosis is made.[14] People with β-thalassemia trait should be warned that their condition can be misdiagnosed as the more common iron deficiency anemia. They should avoid routine use of iron supplements"​

Too much iron in thalassemia can cause all sorts of havoc:

"Iron overload: People with thalassemia can get an overload of iron in their bodies, either from the disease itself or from frequent blood transfusions. Too much iron can result in damage to the heart, liver, and endocrine system, which includes glands that produce hormones that regulate processes throughout the body. The damage is characterized by excessive deposits of iron. Without adequate iron chelation therapy, almost all patients with beta-thalassemia accumulate potentially fatal iron levels.[5]"​

Wonder if anyone is paying attention to that?

The testing for thalassemia revealed that I have no active form of that problem...although there is quite likely a family hx...I'm just a lifelong borderline anemic for no known reason, who converted to full blown anemia with malabsorption and restriction.

I take this vitamin K:
https://www.amazon.com/Superior-Source-Triple-Nutritional-Supplements/dp/B006607NQC/ref=pd_sim_121_1?ie=UTF8&dpID=41W2tdYCYCL&dpSrc=sims&preST=_AC_UL160_SR160,160_&refRID=WZHAGSXKWY5RCWYNT8KP

So far, what I *THINK* I heard from two doctors is:
Stones are a bigger problem...take what you need for cardiac issues and what will prevent stones...AND...find a way to make your bladder comfortable because the IC can make you miserable but not as sick as CHF or kidney stones.

Current plan:
Take diuretics each morning;
Take citrate throughout the day;
Frequent the local cannabis shops both for actual pain relief and for something to make me care less that I hurt.
(Some of this is pre-planning, as it will become more and more difficult to get Norco or Vicodin.)

Thank you.

 

[DianaCox]

What I take:
K1 - DRY form - 1000 mcg capsule, 4 times a week
K2 - DRY form (MK7) - 125 mcg capsule, 4 times a week
I have forgotten what the deal is with MK4 (I understood it for about 10 minutes a few months ago), but I think it is not as important/bioavailable or something as MK7.

The K you are taking has:
500 mcg K1
500 mcg K2 MK-4
50 mcg K2 MK-7

But one question I have is, are these vitamins (presumably not in dry form) actually absorbed through the oral mucosa? I don't see anything in the preparation/ingredients that suggests the formulation does anything but get swallowed and is intended to be absorbed through the gut - and that it is therefore in its normal oily form, which we don't absorb very well.

 

[DianaCox]

Oh, and Scott is referring to Dr. David Caya (he is a DO, I believe), who has made it his mission to become very educated about DS nutrition (he had his DS a couple of months before me in 2003, also after fighting an insurance battle). I have met him, but he's actually in Ventura CA, about 100 miles north of LA, not in the Bay area. He is a Dr. K patient but also knows Rabkin. I'm pretty sure I invited him here, but I haven't heard from him in a while.

 

[DSRIGGS]

Oh, and Scott is referring to Dr. David Caya (he is a DO, I believe), who has made it his mission to become very educated about DS nutrition (he had his DS a couple of months before me in 2003, also after fighting an insurance battle). I have met him, but he's actually in Ventura CA, about 100 miles north of LA, not in the Bay area. He is a Dr. K patient but also knows Rabkin. I'm pretty sure I invited him here, but I haven't heard from him in a while.

Yep David is whom I am referencing. I thought he was Bay are because he said he worked or did something with the older Rabkin in the day. It makes sense that he is in Ventura because I know he is active in the group in that SLO I believe. He definitely knows his stuff about the gut biome.

 

[DianaCox]

Robert Rabkin's DS practice was originally in Ventura, though by the time David had his DS, the practice had moved to SF.

SLO (San Luis Obispo for you non-Californians) is pretty far north of Ventura - over 125 miles.

 

[DSRIGGS]

Robert Rabkin's DS practice was originally in Ventura, though by the time David had his DS, the practice had moved to SF.

SLO (San Luis Obispo for you non-Californians) is pretty far north of Ventura - over 125 miles.

Yeah I think he and another Dr K patient run a group up that way or at least he participates often...maybe he runs one closer to Ventura. Is SLO really that far North of Ventura. I thought it was the same general area....guess I need to brush up on my California where I can't afford to live but want to, geography.