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Posted: Thu Apr 23, 2009 7:19 am
by chrishasms
I totally think you should have a hair mineral test done Sandy by a natural medicine doctor. My wife just did it and because she was taking many of the supplements I was taking, she found out she was OD'ing on Calcium and Aluminum. The last thing she needed was more calcium, which is often dosed with Magnesium too. Based on those findings you could figure out a supplement routine.

Posted: Thu Apr 23, 2009 10:05 am
by jimmylegs
so, momma, all things considered, it looks like you were not in fact seriously deficient to start with. not cool for the doc to put you on a megadose like that. do you think you get a lot of dietary d3 to compensate for your low sun exposure?
Yup, Dr. Kerr said I must be deficient by just looking at me and told me to take the D without pre-testing what my levels were before treatment.
what to do now depends on how long ago this all was, and whether the usual problems associated with hypercalcemia have resolved on their own or not. i think you would be very wise to have a serum calcium test ordered at the very least.

i'm on the phone with my hospital's drug information desk (these people are GOLD as a resource)...
okay i basically framed some questions around d3, hypercalcemia, how to deal with it, what about the skeletal architecture etc...
up til the point when my phone battery died i got you this:
yes definitely on the serum calcium, and they also mentioned renal function and bone mineral density tests. they didn't know why calcium or bone mineral tests hadn't been done first off before getting into vitamin d at all, so i explained that it was in the autoimmune/inflammatory context not osteo stuff. so with that context they figured maybe the doc had made a decently educated guess on your baseline status, based on ms dx and low sunlight exposure. and then they agreed that there was certainly a link to the bones. (of course)

CREATININE

so creatinine is a measure of renal (kidney) function and in that 1987 case i mentioned before, where 50K d3 daily for 6 weeks ended up with 320 nmol/L and serum calcium 3.75 mmol/L, the creatinine level was 388 mumol/L. i fudged some numbers a bit to get an idea of the right ballpark in mumol/L and it's more like 77mumol/L! here's the background and 'math' on that:
*****
"Reference values for serum creatinine were almost identical to previously published ones obtained with the same methods: 0.73–1.18 and 0.55–1.02 mg/dl for males and females, respectively"
converting that to mumol/L for comparison, it works out to a reference 'average' of 77 mumol/L (that's splitting the difference between the midpoints of those two ranges)
*****

CALCIUM

i don't think there is any method other than time to deal with your possible hypercalcemia situation. i said on the phone with the drug info desk that i would check the literature on timing for resolution of hypercalcemia after d3 overdose and she said she did not think it would take that long. although the next bit is talking about advanced renal failure cases, this looks like a useful tidbit:

'Therapy of renal diseases and related disorders By Wadi N. Suki, Shaul G. Massry also provides relevant info on vitamin d3 and hypercalcemia because high doses are needed in renal failure cases:
'There is a great variability in the required amount of vitamin D by patients with advanced renal failure. Doses as high as 50,000 to 200,000IU per day may be needed to achieve beneficial effects ... hypercalcemia is a real and frequent hazard. Such hypercalcemia may persist for weeks after the discontinuation of therapy...'

[JL edit: i forgot to put this in the first time - 'A variety of symptoms may accompany even mild hypercalcemia in uremic patients. Nausea, vomiting, mental confusion...' sounds familiar i bet huh momma!?!]

HYPERCALCEMIA, CALCIUM SUPPLEMENTATION, AND THE KIDNEYS

again, this info is for advanced kidney failure patients but might be useful in your case:
Therapy of renal diseases and related disorders By Wadi N. Suki, Shaul G. Massry
'... weekly or bimonthly monitoring of the concentration of serum calcium and phosphorus is advisable. if the serum concentration of calcium exceeds 10.5 mg/dL [JL edit: that's 2.63 mmol/L; compare 3.75 mmol/L in 1987 overdose study mentioned above], calcium supplements may be cut in half or may even be discontinued temporarily... '

and as to restoring calcium, should your bone mineral density test indicate that it's warranted, this could also be something to consider: '...calcium chloride should be avoided in uremic patients because of its acidifying properties... calcium carbonate is inexpensive, tasteless, and relatively well tolerated.'

for bone mineral density, of course there are a number of pharmaceutical alternatives out there, and there are plenty of ways you can also work on bone health nutritionally if it turns out to be an issue.

this article looks like an excellent place to start reading:
Journal of the American College of Nutrition, Vol. 19, No. 6, 715-737 (2000)
Review
Nutrition in Bone Health Revisited: A Story Beyond Calcium
Jasminka Z. Ilich, PhD, RD and Jane E. Kerstetter, PhD, RD
free full text at http://www.jacn.org/cgi/content/full/19/6/715

HTH mommasan,
let me know if you have more questions :) i'll do my best
JL

Posted: Thu Apr 23, 2009 2:33 pm
by mommasan
You're wonderful Jimmy. I've been feeling better already. Will be getting a bunch of tests tomorrow including serum calcium, D3 and renal function. I get renal function every month as part of my post- HiCy proticol- it has always been normal. I hope the D3 is starting to come down. It's been 3 years since my last bone density test- it was quite good at that time, but I've had almost continuous oral and or IV steroids since then- sometimes both, so I would bet it kind of sucks now.

Posted: Thu Apr 23, 2009 2:57 pm
by ShadyPines
What strikes me is that the incidence of MS increases the further you get from the equator. The closer you are, the more sunlight you are exposed to, hence the more vitamin D your body makes. It would then follow that "low levels of vitamin D in patients with autoimmune disease may be a result rather than a cause of disease" may not apply to MS.

My neurologist was very concerned about my level of vitamin D (6 out of the expected minimum of at least 66). so she put me on 50,000 IUs of prescription vitamin D every week for 9 weeks. When I take the last dose in 3 weeks, I'll have another blood test.

More Vitamin D Research

Posted: Thu Apr 23, 2009 4:34 pm
by Shayk
Hi all

Thought some of you might be interested in yet another article on Vitamin D and MS.

Vitamin D status and effect of low-dose cholecalciferol and high-dose ergocalciferol supplementation in multiple sclerosis

This link should get you to a page where you can register to freely access (through April) the entire article in the MS Journal.

I'd be interested in people's take on this. JL? Others?

Sharon

Posted: Fri Apr 24, 2009 4:18 am
by jimmylegs
i'm glad momma, and i'll be interested to hear how this pans out - get those units! hehe
i had a quick look at renal function testing to see if there was anything better than creatinine.. this is on wikipedia:
Unfortunately, blood urea nitrogen (BUN) and creatinine will not be raised above the normal range until 60% of total kidney function is lost. Hence, the more accurate Glomerular filtration rate or its approximation of the creatinine clearance are measured whenever renal disease is suspected or careful dosing of nephrotoxic drugs is required.
Another prognostic marker for kidney disease is Microalbuminuria; the measurement of small amounts of albumin in the urine that cannot be detected by urine dipstick methods.
do you think you will ask for a bone density test down the road?

Posted: Fri Apr 24, 2009 4:23 am
by jimmylegs
shady you came in after the units discussion was on a previous page - but as has been pointed out we need to include units! lol! i'm going to guess that yours are in nmol/L? what have you decided will need to be your minimum value? if you have not already read it, one study found that the studied group with the highest d3 level had the lowest ms risk. their values were 100nmol/L ahd higher.
it's a good idea to take calcium, magnesium, and zinc along with your d3... and some of the magnesium separately, at bedtime is especially good.
JL

Posted: Fri Apr 24, 2009 4:38 am
by jimmylegs
shayk i did not go for the full text, but i liked that someone actually published that under 100 nmol/L is insufficient!! haven't seen that number and that word together in a published article before.
The average 25(OH)D level was 71 ± 39 nmol/L (Mean ± SD), and 167(84%) patients had insufficient levels (≤100 nmol/L) of 25(OH)D.
it's interesting to me that when i started investigating my d3, my level was 72 - close to another 'ms average' if you will, like my uric acid was.
when i talked to the hospital in early 06 about getting my level up, they said the protocol they were giving me was used for people that were seriously deficient, to get them UP to the level i was currently at. i am very glad that that thinking seems to be evolving.
now as to this d3 d2 thing, i think it's already pretty well established that d3 is the more appropriate and effective, that low doses of either form don't do much, and that high doses of either would be more beneficial. also that 4000IU per day is likely what's needed per the literature, and health canada only recently bumped the recommendation from 200IU/d to 2000IU/d (at least they're meeting the science halfway), so studying the effects of 800IU/d seems pretty ludicrous to me.
from past studies i would suspect that high dose d3 gets the job done in a shorter time than d2, and in a more biologically appropriate way.
thoughts/comments?
JL

Posted: Fri Apr 24, 2009 5:08 am
by mommasan
Hi Jimmy- Last creatinine was .7. I believe when it gets to 2.0 you've lost 50% of renal function. Haven't had a microalbuminuria in a while. They took about 8 or nine tubes of blood this morning, including PTH.

In hindsight, I think the statement that I get no sunlight was an overstatement. I get about 10-15 minute exposure to hands and face 2X per day 5 days a week- sometimes more, waiting for my daughters preschool bus to pick her up and drop her off- except when it dropped into the single digits when no skin could be exposed. Also, I take fish oil which probably adds a bit of uncalculated vit. D- so maybe that clouds things up a bit.

Thanks again for your amazing help. I will keep you informed when the tests come back.

Yeah, I need another DEXA- though I am not quite ready to deal with the potential results just yet.

Sandy

Posted: Fri Apr 24, 2009 5:46 am
by jimmylegs
hey there, no probs, i'll keep an eye out :)

Vitamin D and Neuroprotection

Posted: Tue Apr 28, 2009 6:21 pm
by Shayk
JL
from past studies i would suspect that high dose d3 gets the job done in a shorter time than d2, and in a more biologically appropriate way. thoughts/comments?
I basically agree but we might think just a tad differently about "why" and the job that needs to be done. MS and Vitamin D research seems to have focused solely on its impact on the "immune" system. D3 actually has neuroprotective properties that could be quite relevant to the MS disease process. Why MS researchers remain silent on the neuroprotective angle of D3 baffles me. Per this.....
Combination treatment with progesterone and vitamin d hormone may be more effective than monotherapy for nervous system injury and disease
Emerging data on 1,25-dihydroxyvitamin D(3) (VDH), itself a steroid hormone, have begun to provide evidence that, like PROG, it too is neuroprotective, although some of its actions may involve different pathways. Both agents have high safety profiles, act on many different injury and pathological mechanisms, and are clinically relevant, easy to administer, and inexpensive....

Furthermore, vitamin D deficiency is prevalent in a large segment of the population, especially the elderly and institutionalized, and can significantly affect recovery after CNS injury
The beat goes on...thanks for your take on the info.

Sharon

Posted: Tue Apr 28, 2009 7:33 pm
by jimmylegs
hi s - ah, i thought given the abstract, that you were just questioning the d2 vs d3 angle of the article - apparently i did not read it closely enough to pick up on the immune vs neuro angle!

personally, having the d3 issue go beyond rickets and osteoporosis is pleasin to me, right now... we'll have see about immune system (vs/combined-with) neuropathyaspect, down the road :) hopefully it will not take another few decades.. eek!

JL

Vit D and Omega-3 to be tested in big trial

Posted: Tue Jun 23, 2009 5:48 am
by Frank
The trial will enrole 20.000 people and evaluate the supplements (2000 iu Vit D and/or 1g fish oil, vs placebo) for their potential preventative effect on cancer, heart dissease and stroke:
http://www.physorg.com/news164898427.html

--Frank

Multiple Sources of D3?

Posted: Thu Jun 25, 2009 5:46 pm
by bibliotekaren
As a newbie, I sifted through the various threads on Vitamin D. I have a naive question based on an anecdotal reference (my dad told me his pal with MS told him his doc said...).

So, my Dad's friend with MS swears by taking at least three different sources of D as recommended by his doc. This seems really odd -- as if you're assuming that at least one of them isn't absorbing well. Or possibly there is a different basis for the recommendation.

In any case, you folks seem rather deep into the details of this all. So, I thought I'd throw it out there to see if anyone has heard of this or if I'm being gullible by doing anything more than just nicely saying, "Thanks for the info Dad."

Thanks,
Donna

Posted: Thu Jun 25, 2009 6:45 pm
by peekaboo
Hi Donna -

i take 3/k ui D3 a day. I rarely get out in the sun due to my disability/ms. any way there are lots of discussions re D3 and it should be easy for you to search on TIMS....

good hunting

H