This Is MS Multiple Sclerosis Knowledge & Support Community

70 k IU = 1.75 mg 25-OH

JL,

How often do you get your D level checked? And how much change do you see between tests?

The reason I ask is that back in January I had a blood test, and the 25 (OH) level was 88 ng/ml. I wanted to have it re-tested to make sure this wasn't an error, but I didn't get around to it until last week (so about 2 months later). In the meantime, I had pretty much stopped taking supplements. The new level came back 66 ng/ml.

This seems like a big change to me, but I don't have any idea how much these levels should fluctuate.

Mine did the same, almost the exact 20 pt drop, and I had just reduced not stopped my D supplements. clearly, to keep it high (esp in winter--tht is if you live in temperate or northern zone) we have to keep up with the supplements.

hi px, i usually get it tested around this time of year to gauge how effective my winter regimen has been. then i correct if/as necessary, and go for a retest a bit later on. 88 sounds good, if on the high side, and 66 sounds right in the zone. yes mine have been all over the place in the past. it is best to try to be steady and consistent. i fail at that! i get too busy and the vitamin d even though it's drops it's more of a pain than pills, so it gets missed more often. also because it's a once a week thing it's not part of the daily routine. something i definitely need to work on!

OK, I have recently seen an endocrinologist, and have a blood test coming, (to see if my adrenal raisins awakened at all) is an endocrine guy the person who would have an interest in Vit D levels?

I have not directly asked my neuro for the test, duh I forgot!, but I get the impression that if he has never suggested it perhaps he's not a 'believer?'

So, I'm thinking I might call the endocrine guy and have his office add on the vit d component, if you think that he's the one who'll get usable data from the results, and therefore move to address potentially insufficient levels..

Ike's, even though I'm typing, that last sentence made me out of breath!!LOL

What's your input supplement guru!?

Msmything:

"Supplement Guru" - I know you're referring to Jimmylegs, but I'll put in my opinion while you're waiting for her to respond.

The person who got the most use out of my Vitamin D test results was me. The first test I had done (right around the time I was being worked up for MS), was ordered by my PCP. I was glad he did it, but I later learned he did it for some kooky reasons. Nonetheless, it allowed me to see I was pretty low, just according to the recommended minimal level (32 ng/ml).

After being diagnosed with MS, I heard about the possible relation to Vitamin D, so I did some online searching and reading. I came across some articles by an immunologist named Margherita Cantorna, who has done experiments with Vitamin D and autoimmune diseases. She answered some emails I sent her, and while she didn't mention a specific blood level, she did say she would recommend supplementing with 1000 IU/day of vitamin D, along with 800 mg Calcium. She indicated that the current recommendation of 400 IU/day and the 32 ng/ml level were probably too low.

So, I don't think anyone really knows what is a good level for those with MS, but I was shooting for mid 60's ng/ml. And the last 2 blood tests, I asked for myself (one from my PCP and the other from the neuro). I was only interested in the level, not their interpretation. However, you neuro or endo may have some input on this. Can't hurt to ask. But if they don't, they still shouldn't have a problem writing you the script for the test.

I just realized this is way more info than you asked for (and from a different person). JL may have some more advice on this.

Shye and JL;

Thanks for the replies. It seemed strange to me that the level would drop so much in 2 months, especially considering I should still be getting some from natural sources. But it sounds like you guys are seeing the same thing.

PatientX, thank you for your reply, and yes, I was referring to JL, but your well thought out and informative response was VERY welcome. Now if I could get the Doc's office to call back!! That's what I love about this site, everyone has such experience, and the willingness to share.

In the meantime, may I ask how your Vit D levels were adjusted, I thought I read that it is an initial injection, followed by monster pills 1x week?

And how is Calcium def. treated?

msmything wrote:In the meantime, may I ask how your Vit D levels were adjusted, I thought I read that it is an initial injection, followed by monster pills 1x week?

And how is Calcium def. treated?

That may have been someone else. I never did the injections or the big weekly doses. I just took the pills (D3). It wasn't anything real scientific (and keep in mind I have no medical background). I started with the 400 IU/day, but as I read more, I realized this may be too low. So, I kept upping the dosage until I was up to 5000 IU/day. After a year and a half of this, I went from 20 ng/ml to 88 ng/ml. I don't have a good feel for what these numbers really mean, but I know 32 ng/ml is the recommended lowest number for a healthy level, and many consider this too low (especially for people with MS). I think now, I will settle around 1000 or 2000 IUs/day.

The one thing you have to watch with Vitamin D is that it is fat soluble and can buildup. Vitamin D toxicity and hypercalcemia can be 2 unwanted side effects. But I think you have to be way up there to worry about this - like around 100 ng/ml. Heck, the study Hopkins is doing uses 10,000 IUs/day.

By the way, when I went back for a follow-up with the first neuro I saw, he was going to order a vitamin D test. I've since moved on to an MS center at the local hospital, and there the head neuro is doing research on Vitamin D and MS. So, it seems docs are starting to think this has some significance.

Why do you ask about calcium deficiency? I think the reason that it was recommended calcium be taken along with the D is for two reasons: the animal experiments showed the combination of D/calcium was more effective than just vitamin D alone; and, since vitamin D helps with calcium absorption, I think there is a concern that too much can start leeching calcium form the bones.

a great site for vitamin D info:
www.vitamindcouncil.org

patientx wrote:Heck, the study Hopkins is doing uses 10,000 IUs/day.

I'm taking double that, until winter is well and truly over.

When I was diagnosed about a year ago my vitamin D level was 17 ng/ml and the neurologist recommended 1,000 IU a day. After some reading I upped that to 6,000 IU a day and after 6 months my level had risen to 77 ng/ml by December. I have kept that dosage and will be tested again in around two months. In the summer, I get lots of sun and I figured that that probably helped boost the number along with the suppliments. One interesting thing is that this is the first winter that I never even got a cold (knock on wood). Maybe a coincidence but with two young kids with lots of colds and sinus infections I thought going into the winter that it was just a matter of when. I also have had no real noticable MS symtoms besides maybe a little fatigue since everything resolved itself last June. I am also on Betaseron, Vitamin E, calcium, fish oil, green tea extract, and grape seed extract as well. Who knows, luck of the draw things have been going well, the combination of stuff, or one real "helper".

hi guys, just checking in now.

i agree with px, it doesn't matter who orders the test for you, you have to be in charge of interpreting the results and charting the way forward based on the numbers. check back in when you have the data and never let them brush you off with the 'normal' thing!

huge decades long body of literature on this, and 4000IU per day is considered MAINTENANCE not a therapeutic boost. must be balanced and timed against calcium and magnesium. zinc is important too.

if you have never waded through that regimen of mine, there might be useful info in there. i have not been through there in a while so i can't recall all the deets but there is a crapload of D3 info early on - notice it does have that subtitle "formerly mega D" hehehe

nite folks
JL

jimmylegs wrote:and never let them brush you off with the 'normal' thing!

Absolutely right.

huge decades long body of literature on this, and 4000IU per day is considered MAINTENANCE not a therapeutic boost.

Did you mean 400 IU here?

nope!

[article link here]
Total-body sun exposure easily provides the equivalent of 250 µg (10,000 IU) vitamin D/d, suggesting that this is a physiologic limit.
To ensure that serum 25(OH)D concentrations exceed 100 nmol/L, a total vitamin D supply of 100 µg (4,000 IU)/d is required.
Published cases of vitamin D toxicity with hypercalcemia, for which the 25(OH)D concentration and vitamin D dose are known, all involve intake of 1000 µg (40,000 IU)/d. ...the weight of evidence shows that the currently accepted, no observed adverse effect limit of 50 µg (2000 IU)/d is too low by at least 5-fold.

[article link here]
Human serum 25-hydroxycholecalciferol response to extended oral dosing with cholecalciferol
...Design: Cholecalciferol was administered daily in controlled oral doses labeled at 0, 25 (1,000 IU), 125 (5,000IU), and 250 µg (10,000 IU) cholecalciferol for 20 wk during the winter to 67 men living in Omaha (41.2° N latitude)...
Results: From a mean baseline value of 70.3 nmol/L, equilibrium concentrations of serum 25-hydroxycholecalciferol changed during the winter months in direct proportion to the dose, with a slope of 0.70 nmol/L for each additional 1 µg cholecalciferol input. The calculated oral input required to sustain the serum 25-hydroxycholecalciferol concentration present before the study (ie, in the autumn) was 12.5 µg (500 IU)/d, whereas the total amount from all sources (supplement, food, tissue stores) needed to sustain the starting (autumn) 25-hydroxycholecalciferol concentration was estimated at 96 µg (3800 IU)/d. By difference, the tissue stores provided 78–82 µg/d.
Conclusions: Healthy men seem to use 3000–5000 IU cholecalciferol/d, apparently meeting > 80% of their winter cholecalciferol need with cutaneously synthesized accumulations from solar sources during the preceding summer months. Current recommended vitamin D inputs are inadequate to maintain serum 25-hydroxycholecalciferol concentration in the absence of substantial cutaneous production of vitamin D.

in '06 i used this second study to calculate how long it would take me to get to 100nmol/l taking 5000IU per day and it came out to something like 8 months which was when I first started investigating short term megadosing for a therapeutic boost, and then a few thousand a day maintenance.
hospital info desk turned me onto the 50,000IU/d x 10 days idea. it works! but watch it - when i discovered and fixed my zinc deficiency i did not at first realize how much that would improve my d3 absorption. if i were to do that regimen now i'd probably end up over 300nmol/l, where before that this megaboost got me to 149 nmol/l.

short question, long answer hehe