Vitamin D intake: Hi Friends-just curious... - My MSAA Community

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Vitamin D intake

nicoly3467 profile image
44 Replies

Hi Friends-just curious, how much Vitamin D do you take a day? I’ve been deficient in Vit D since MS. I take 5000 IU daily and that puts me in the mid to upper 40nl/ml range. Thanks!

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nicoly3467
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44 Replies
kdali profile image
kdali

The amount depends on what my labs and goals are. I’m keeping it closer to 70 these days and have considered going higher. I don’t always remember daily vitamins, so I have a weekly dose as well as a daily dose. It sounds complicated, but it’s not. I enter my blood level in the dminder app and then enter whatever I do remember to take, so it calculates a fairly accurate level because it automatically adjusts for body fat percentage. If I forget several days, then the weekly one covers it.

positiveness profile image
positiveness in reply to kdali

I feel as though the important thing is that you have your own system and know what’s working for you. Not that I’m a doctor or anything.

Raingrrl profile image
Raingrrl

I take between 5000 and 6000 IU’s daily depending on the time of year and blood test results. It keeps me above 50 ng/mL where my neuro wants it to be. If I don’t take supplements my blood level of D3 plummets. I do live in an area without much sunlight for a good portion of the year so I usually take more in the winter months.

positiveness profile image
positiveness in reply to Raingrrl

Good thinking. Someone was talking about the winter blues and I mentioned vitamin D to him.

Raingrrl profile image
Raingrrl in reply to positiveness

Thankfully I don’t get the winter blues at all. For most of my life I’ve lived in areas with a lot grey skies and it’s never affected my mental well being. I take the D3 for a myriad of other reasons besides my neuro telling me to do so.

Kenu profile image
Kenu

I take 4000iu daily. Was at 8000iu for twenty years and the last 3 I seem to have improved😊 Ken🐾🐾

falalalala profile image
falalalala

5000iu

rjoneslaw profile image
rjoneslaw

I take d2 50,000iu once a week

I get it free at sams club my dr writes the script, but you have to have the script say it’s for ergocalciferol this is the one that’s free

JSSimp profile image
JSSimp

I take 50,000 u wkly prescribed by doctor.

Sandydemop profile image
Sandydemop

My neuro doesn't want my levels to go over 60-70 so i take 2000/day. I think I could take more. Don't get much sunshine. The functional medicine people say it should be closer to 100 but once mine was 96 and the neuro was very upset with me.

positiveness profile image
positiveness in reply to Sandydemop

Good to know.

ahrogers profile image
ahrogers

Mine was low at diagnosis. When PCPs started testing everyone 10 plus years ago they found out the majority of people were low though so not just an MS thing.

Because studies found those with MS and normal vit D levels did better than those with low vit D they hypothesized supplementing those with low would help. Unfortunately no studies have been done to prove this and my neuro cautioned it cannot be certain to help but had me take 2000 a day. My next test was still low so went up to 5000 a day which got my levels up to normal, they weren't looking to get me at a high level though. However, after about 6 months of 5000 a day I got a bladder stone, I had a kidney stone in the past. Because vit D supplements can lead to kidney stones if you have had them before I went back down to 2000 a day. Currently I take 1000 a day and my last level was at the low end of normal. I do forget to take it a lot but can't take the weekly big dose that would make it easier. Some days I take 2000 to try to make up for missing days.

My current neuro doesn't seemed concerned about vit D levels. I had to ask to have it checked. I see him in a couple weeks and will ask if there is any new data out there regarding vit D levels and supplements.

Thanks for bringing this up, otherwise I would have forgotten to ask.

I know we have some physicians in this group and maybe they are aware of any new data regarding vit D levels and if supplementing to keep higher nlood levels makes a difference.

cindyrn68 profile image
cindyrn68

I tend to run very low no matter how much Vit. D I take. It's a source of frustration for my neuro and my PCP.

palomino27 profile image
palomino27 in reply to cindyrn68

Do you take the gel capsules? My body doesn't absorb those. I changed to powdered capsules years ago and I haven't had a problem with absorption. Sadly, they are more expensive but at least they work....

kdali profile image
kdali in reply to cindyrn68

I wonder if there’s a genetic factor involved and perhaps you would do better with a D lamp 🤔

palomino27 profile image
palomino27

I take 15,000 IU a day in the winter. 10,000iu in the spring and fall. And 5000iu in the summer. I keep mine above 80 at all times. Under 40 I get an automatic MS attack. 80 to 150 is my goal. The standard test range is irrelevant for MS in my opinion and from my experience.When I fall below 60 I can tell now from tracking VitaminD the last 5 years.

If your at a value of 40-50 with 5000iu a day you need to take more.

I test every 8-10 weeks for the last 5 years.

Boxofchocolates profile image
Boxofchocolates in reply to palomino27

I may need to revise mine!

kdali profile image
kdali in reply to palomino27

This makes me curious if my pseudo flare was worsened by having a lower level than my norm 🤔 I’m so glad you get your levels checked like a boss, I need to do better 🎉

palomino27 profile image
palomino27 in reply to kdali

I seem to get flares from low VitD especially in the winters here in Wisconsin. Like just before Xmas when the sun is at its lowest point. Definitely some kinda seasonal disorder it seems....

nicoly3467 profile image
nicoly3467 in reply to kdali

Yes, it makes me curious too. The first few years of having MS my Vit D was always in the 30’s or low 40’s and that’s with a low dose of Vit D but then increased to 5000 IU so I wonder with many relapses I’ve had over the years, if this could also be a cause. Maybe.

MissyJaye3000 profile image
MissyJaye3000

I take 50,000 weekly

MsBoo profile image
MsBoo

Hi there.. so many different answers.. hope some help.. haha.. I take 4000iu every day with a spattering of in in a multi vitamin I take and calcium with it in also of 400iu... But diabetic and neuro say my levels are fine.. as far as the feeling of it being high or low I don't feel any difference..

Have the best day you can have.

Hope you found your answer ...

MarkUpnorth profile image
MarkUpnorth

You need a doctor to do bloodwork or you can over do it. Since it is not water solvable, you might grow horns? or something if you take too much too long.Yes my doc started me on the 50,000 once a week, dropped to daily 5,000's, now down to daily 2,000's, but my wife is down to daily 2,000's only 3x a week. It's all in the bloodwork. Have it checked at least once a year.?

kdali profile image
kdali in reply to MarkUpnorth

Grow horns 🤣👏 Perhaps that could benefit me, I’m always needing an extra arm these days.

Was taking 5000 but 1000 of that was from my multivitamin that I’ve discontinued so now I’m just taking 4000/day. My level last time she checked was around 60; before it was 70-80. She said we also want to monitor calcium along w it and my calcium was on the high end of normal so I stopped taking it as well. This time it was dead nuts 🤣 they do a draw every 6 months so I can easily adjust if too high/low.

RoyceNewton profile image
RoyceNewton

10000iu for no particular reason, I hear that 500IU is just as effective.

normwithms profile image
normwithms

4000 IU

Neworleanslady profile image
Neworleanslady

I take 5000 a day and whatever is in my calcium vitamin

carolek572 profile image
carolek572CommunityAmbassador

4000 UI daily per neurologist instructions, nicoly3467

positiveness profile image
positiveness

Because we are all different in our very own special way, I take 5,000 IU every other day. For whatever reason, my right side would start feeling uncomfortable if I took it every day.

bxrmom profile image
bxrmom

When my pcp first tested me, my numbers were really low so I was put on an rx dose for a month and then 2,000 iu/daily. My neuro has been happy with that.

Juliew19673 profile image
Juliew19673

I too take 5000!

agate profile image
agate

I've been taking 5,000IU daily for several years now.

Raingrrl profile image
Raingrrl

Here is what the Cleveland Clinic has to say about MS and Vitamin D for anyone interested: my.clevelandclinic.org/depa...

Boxofchocolates profile image
Boxofchocolates

I take 5,000 IU daily and it keeps me at 50. It’s interesting to see everyone’s different results and maybe I’ll adjust mine.

mrsmike9 profile image
mrsmike9

I started with 5000 that my neuro told me and after a few years (and a blood test) he said to drop it to 2000.

Cutefreckles72 profile image
Cutefreckles72

Since being diagnosed with MS, I take Vitamin D3 1000 IU Softgels daily

Violonchelo profile image
Violonchelo

I have to take vitamin D, but never I do it. And my analysis of vitamin D are better after summer, no after winter that I haven’t sun.

nicoly3467 profile image
nicoly3467

Thank you all for your replies and info. I may adjust my daily dose to a slightly higher amount. I’ll ask my Neuro this week for my Appt, if going up to 6000-8000 IU would be better for me.

Tazmanian profile image
Tazmanian

I take 10,000 iu a day

cljones profile image
cljones

I take 10,000 It's a day.

IFwczs profile image
IFwczs

According to my Integrative Medicine doctors, the range should be closer to 80 (but not above 100). I am now on 7k daily since it dropped to a little above 50

pamgarner profile image
pamgarner

like alot of folks i take 50.000 units per week 1 pill,my dr who also has ms says to keep"D" above 65%. blood test 2x year

Felissan profile image
Felissan

I take 5000 IU daily during the whole year, even in summer. Also, I have a blood test every 3 month to keep track of vitamins levels. Once I had a vitamin deficiency and I don't want it happen again. By the way, make sure to buy quality vitamins. There are many online pharmacies but personally, I make all the purchases here canadadrugsdirect.com/onlin...

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