This Is MS Multiple Sclerosis Community: Knowledge & Support

Goodness me, so much to take in!

It seems that according to one of the articles it's going to take quite a while for my D3 levels to increase to an adequate amount by just taking 1000iu.

The regime of 50,000iu's a day for 10 days sounds like something i would much prefer, i'll ask the endo about this if he doesn't mention it. I certainly want to get everything up to scratch before we conceive our third child.

I have done a lot of night shift for a few years as a registered nurse and obviously sometimes i would have minimum exposure to sunlight, i wonder if i had done things differently if ms may have not emerged....
The more i learn about ms the more i believe that i gave ms the perfect environment and opportunity to breed inside my body. But it has been very kind to me so far i i'll stop complaining!

Elly

i feel the same elly, i basically invited ms in. still trying to kick it out

you're right about things taking a while on 1000 IU/d. in fact if you go strictly by the "calculator" study, you're going to go from 30 to 37, and then level off after 3 months. 5000IU per day would take you from 30 to 58 over the same time period, then level off. i agree that the 10-day high-dose stint is more attractive!

Hi All! I had to request a Vit D test from my neuro. He was happy to do it but gave me little guidance on what to do after he told me the results. He said my level was low at 12.6 and perhaps I should increase my Vit D intake. (This information was given to me by a letter) I'm a little confused about what the units would be and which test I actually got. What do you folks think?

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

hi smile, that sounds REALLY low. if i were you, i'd def try to double check the units and whether you were tested for 25(OH)D3 specifically.

just guessing, sounds like your level is probably 31.5 in nmol/L. 12.6 x 2.496. that is pretty darned low.

the drug info desk at my local hospital, told me about the 50,000IU/d for 10d regimen. maybe you can get similar advice locally and take it to your neuro (or GP) and ask for a prescription. the product is a very highly concentrated liquid d3 and you just take a tiny drop each day.

you'd want a follow-up test too to see if you'd gotten a big enough increase. the regimen i was on was only supposed to boost me 50 nmol/L, but at my follow up test i was more like 75 higher, so it really works.

good luck!

My local GP had my Vit D 25(OH) tested yesterday with the reading at 25.8 ng/ml. He said normal range is 32-100. He suggested to go up to 4000-8000IU a day since I have been on 2000-4000IU. He said he is going to re-test it in one month.

I'm still not sure about the original units on the 12.6 reported by my neuro one year ago. I'm working on getting the information from them. It takes awhile.

Don't you folks think I should at least get it up to 32ng/ml?

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

My neuro said last year my 25 hydroxy level was 12.6 ng/ml. After supplementing for a year 2000-4000IU my level is 25.8 ng/ml. The neuro said take up to 5000IU but not more, the GP said take up to 8000IU but not more.

Elly, going to an endocrinologist who specializes in Vit D sounds like a good plan, wish I knew one.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

hi smile, 32 ng/ml is 80 nmol/l. that's about the range where you should be protected against osteoporosis. over 100 nmol/l is where you hope to be for immune system health. that's 40.

so normal range is 32-100ng/ml. that's 80-250 nmol/l. keep in mind that sick people are included in that assessment of normal range. the largest percentage of the population are going to be halfway between those high and low values, at around 65ng/ml, or 162 nmol/l.

don't assume that attaining 32 has you keeping up with the joneses!

and whatever you decided to do on a daily basis, make SURE you are getting the calcium, magnesium, and zinc to go with it.

one thing i learned after a long period of high dose vitamin d3 is that it ties up your magnesium intake. once i started taking some of my daily magnesium away from the d3, there were some great improvements. i think the docs probably would have called my issues at that time a relapse, any old weird symptom doesn't have to be explained or understood any more, it's just my ms.

Thanks for your response Jimmylegs. I did not realize I had to raise that level that much. If I listen to my neuro and take 5000IU then how much calcium, magnesium and zinc do you suggest I take? And am I taking them because the Vit D binds with them and depletes the body's reserves? Will just a multi vitamin be enough? I don't plan on taking the high dose of Vit D unless I after 5000IU daily for six weeks and I'm still not close to 40ng/ml.

Don't you think it is strange that I was 12.6 ng/ml and my neuro was so casual about it? He must believe that Vit D is not significant in the MS process once you already have the disease. I guess he doesn't really care if I get osteoporosis since he is not an orthopedist.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

hey no probs smile

it's really hard to figure the calcium mag and zinc ratio for high-dosing d3. there's a good embry set of instructions out there which says take 1200mg of calcium per day and 600 - 1200mg of magnesium. i don't think a regular multivitamin will be that high. you should be able to find cal-mag pills that already have the zinc included in the right ratio.

try to get as much minerals as possible from dietary sources though. and d3 from fish. i've found i can eat an entire bunch of dark leafy greens at one meal, once they're steamed. my one doc told me to eat fish three times a week, i'm still not up that high but i should get my act together.

when you take your calcium/magnesium/zinc pill at the same time as d3, the d3 pill will monopolize those minerals, yes. d3 and those minerals all work together. but you have to get some intake where d3 is not hogging it all. your body needs to get those minerals for other purposes too. for example it's good to get some magnesium and potassium intake at the same time, away from the d3. i have started eating a lot more dark leafy greens for the mag, and much more fruit like cherries and raisins for the potassium. it helps.

you could probably find a good pharmacist to talk to about timing of all this stuff. try out a few compounding pharmacies until you get a nutrient biochemistry guru. if you get a good one, he or she will know all the details and can tell you the right foods, all that kind of thing.

do i think it's strange? no. do i think it's bad? YES. docs are so not interested in that kind of thing. people need to realize that it's their own job to stay well, doctors are only there to manage sick people, not make you better.

I hear that loud and clear, JL.
When I found my homeopathic/holistic/allopathic doc, I thought he would help me get well. I had to ask for every blood test I've had- no nutritional advice- as long as I can walk/talk/ and think, he seems satisfied not to advise me further. Maybe I shouldn't doubt him. Maybe the homeopathic remedy I take is all that I need, but I'm not convinced of that. Unfortunately, it would probably take another serious setback to get me out there looking for more professional help. Life is so busy. I guess it is for the docs as well.

I had my six month neuro check-up last week. Found it interesting that he is now asking all his patients to have a blood test for Vit D3 levels. I will get my results this week.

Sharon

ya terry, same here. about the no advice, ordering own tests and all that. and i slack too, given that things aren't so bad right now. i'm trying to get back into a good discipline with everything, especially as we head into winter. just dropped off my latest mega d3 prescription at the pharmacy today.

glad to hear some of the docs are getting on board sharon!

a question for jimmylegs -

I have the report back on my vitamin D, 25-OH Levels. Results were 39 ng/ml - report says that anything over 30 ng/ml are optimal. What is the difference in the unit of measure used in my report to the unit of measure you used in a previous post?



I'm confused

Sharon

heya sharon, the short answer is, multiply your ng/mL result by 2.496 to get nmol/L.

for anyone coming upon the subject cold, the useful link below accesses a number of useful conversion factors including vitamin d3 (two metabolites; we're interested in 25(OH) or 25hydroxy, of course) near the bottom:

SI Units for Clinical Data
http://www.unc.edu/~rowlett/units/scale ... _data.html
vitamin d3:
ng/mL -> 2.496 -> nmol/L

sharon's lab's optimal 30+ ng/mL converts to only 75 nmol/L. that sounds like optimal from an musculoskeletal osteoporosis standpoint only, not an immune perspective.

that said, multiplying sharon's 39 ng/mL by 2.496 is 97 nmol/L. so, pretty close to 100 nmol/L! 100-250 is more in line with the immune system's "normal range". 150 nmol/L is a pretty good and safe starting sweet spot for optimizing the immune system's functionality.

150nmol/L / 2.496 = 60 ng/mL - so sharon it looks to me as though you are in good shape to keep on supplementing your socks off

**not forgetting** the importance of daily calcium, magnesium, and zinc. if you don't already do so, make sure your magnesium is split up through the day - some taken with d3, some taken on its own to facilitate other necessary biochemical interactions.

hope that helps
JL

I'm in favor of us all pooling together a fund to build Jimmylegs a lab.

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