all things vitamin D

Discuss herbal therapies, vitamins and minerals, bee stings, etc. here

Postby dignan » Wed Apr 22, 2009 4:48 pm

I agree with everybody. Now let's sing cum baya. At the upcoming AAN conference, there is another update on the vitamin D/MS study that involves a few more patients, over a slightly longer time, and even higher vit D doses (with no adverse effects):

http://www.abstracts2view.com/aan2009se ... 110&terms=
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Postby Lyon » Wed Apr 22, 2009 5:06 pm

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Postby mommasan » Wed Apr 22, 2009 5:18 pm

I don't know about units, but the nurse said the normal range was 20-100 and she seemed pretty alarmed.
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Postby chrishasms » Wed Apr 22, 2009 5:30 pm

Holy wowser!!! I know for a fact lifeguards in HA, which my wifes doctor used to be, was around 100 in the middle of summer!! 166 is just huge. I'm glad they got you fixed Sandy.
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Postby patientx » Wed Apr 22, 2009 8:41 pm

jimmylegs wrote:px you make a good point but i am initially doubtful that momma went from seriously deficient to 414 nmol/L (166 ng/mL) on the regimen described, unless perhaps after the week-long megadose, the weekly 50K went on for quite some time.



That's the problem with stating these numbers without units, especially on a site like this with an international audience. Here in the U.S., the vitamin D test results are usually given in ng/mL (at least that's what it was on my lab report0. (I know you already know this JL, but for the record, 1 ng/mL is approximately 2.5 nmol/L). That's why a reading of 166 would stand out like crazy. However, at least one lab has had issues with vitamin d testing:

http://www.nytimes.com/2009/01/08/business/08labtest.html?_r=1

Don't know if Hopkins uses them or not.
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Postby patientx » Wed Apr 22, 2009 8:44 pm

mommasan wrote:I don't know about units, but the nurse said the normal range was 20-100 and she seemed pretty alarmed.


Given that this was done in the U.S., I'm assuming that the units are ng/mL. Though the normal range might be 20, from what I've read, the usual minimum quoted for good health is 32.
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Postby jimmylegs » Wed Apr 22, 2009 8:53 pm

what units was that 100 chris?

to compare to my handy dandy "table 7.1" which is now out of the file...
the lowest d3 incidence on this particular sheet, showing hypercalcemia, is this one:

schwartzman and franck 1987 describe 50,000IU per day for six weeks :!: :!: :!: ending up with serum d3 320 nmol/L and serum calcium 3.75 mmol/L

and the craziest one, rizzoli et al 1994, 300,000IU per day, for 6 YEARS, serum d3 1692 nmol/L, and serum calcium 3.30 mmol/L (clearly they were running out of calcium in their skeleton by this point)

so anyway, 320 nmol/L is clearly outside the ballpark, and that converts to
128 ng/mL.

so yep, it really depends on the units momma, whether 166 is scary (ng/mL) or really, pretty ideal (nmol/L). i've been quite happy about getting up to 149 nmol/L myself, but most docs (especially at the time, a whopping 3 years back) would have said i was fine in the 70s or 80s.

so what's the deal, they decided you were d3 deficient without any baseline bloodwork at all?
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Postby mommasan » Thu Apr 23, 2009 8:05 am

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.
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Postby mommasan » Thu Apr 23, 2009 8:09 am

OK..This question is for Jimmy (mostly) Should I be taking in tons of calcium at this point or next to none?
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Postby chrishasms » Thu Apr 23, 2009 8:19 am

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.
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Postby jimmylegs » Thu Apr 23, 2009 11:05 am

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
Last edited by jimmylegs on Thu Apr 23, 2009 3:45 pm, edited 1 time in total.
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Postby mommasan » Thu Apr 23, 2009 3:33 pm

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.
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Postby ShadyPines » Thu Apr 23, 2009 3:57 pm

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.
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More Vitamin D Research

Postby Shayk » Thu Apr 23, 2009 5:34 pm

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
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Postby jimmylegs » Fri Apr 24, 2009 5:18 am

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?
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