Vitamin D

[SNOOPY]

Hi Jerry,

I continue to take 5000i.u. and will not change until I see levels that are 70 or 80! My PCP says that I could cut back to 1000 i.u. daily . But I just won't do it because I don't want to have lower levels.

If you decide or need to cut your D3 dosage do so with extreme caution.

I was D deficient (16) and it took two years to get my D3 level up to 68. My Neurologist suggested I cut back to 2000iu, 6 months later when I had my D3 rechecked I had dropped down to 19 I went up to 4000iu and in the last 2 years it doesn't want to move out of the twenty something range. A few months ago I started taking 5000iu again so we shall see.

[holliedog]

My original vitamin D level was 19. Started on 2000 a day plus my multi vitamin without much change. I am now up to 5000 a day plus multi vitamin and we will see where I am at in a few months.

My vitamin D was still only 50 on 4000 a day. My neuro wants me over 60. So I hope the 5000 a day gets me there. I can't believe how difficult it is to get your levels to where they need to be.

[msgijo]

.... l be interested in seeing what it is and what my PCP has been calling "very good" I suppose I could call and ask for my last results.

I THINK that "normal" is considered between 30 - 100. So, after starting Vit. D3, when my PCP's office called to tell me the results were normal I asked what the level was. I had managed to raise it - to 32 . For a person with MS not high enough IMHO.

My MS specialist (who btw is only a PA) is of my opinion, and is okay with my continued dosage of D3. And is continuing to monitor the levels as we hope to increase it to much closer to the high levels.

[J-Bo]

I started at about 30 ng/MLK, but am now up to 77. Think I'll just keep doing what I'm doing unless my blood level gets too high. As long as the lab value doesn't get too high, I can't see any harm in that dose, even if it's a lot higher than everyone's saying here. Maybe I should be more conservative, and I guess I would be if someone presented a solid reason beyond "that's a really high dose."

[Seasha]

J-Bo~ I'm also taking 10,000 and my levels have maintained around 76. My MS doc and my naturopath are pleased with this number. My pcp thought it was too high, but don't think she realizes the importance of increasing the number for MS patients.

I just read the most recent MSWorld Express newsletter and found this http://www.nationalmssociety.org/Abo...e-Vitamin-D-is in which it states:

"Vitamin D levels increased more in the high-dose group, to a level that has been suggested as the optimal target for people with MS. Immune cells known as Th17 cells – which have been suggested to be major players in the immune attack on the brain and spinal cord in MS – were reduced in the high-dose group, but not in the low-dose group. Investigators also found that the higher the levels of vitamin D in the blood, the greater the reduction of Th17 cells."

Even though this was a small pilot trial, there is news of recruiting people for a larger trial -

"Next Steps: This team is now conducting a larger trial at several centers nationwide, in which they are recruiting 172 people with relapsing-remitting MS to compare the effectiveness of 600 IU of vitamin D supplementation versus 5000 IU vitamin D supplementation at reducing MS disease activity, when added to standard therapy with glatiramer acetate (Copaxone®, Teva Pharmaceutical Industries). The study is funded by a research grant from the National MS Society, with support from the Society’s Greater Delaware Valley Chapter."

Just thought someone could benefit from this information.

[J-Bo]

Sounds to me like we're on right track...not conclusive, as you suggested, but I can't see a downside. I wonder why your pcp thought 76 was too high if 100 is the upper limit of the safe range...?

Anyway, thanks for the info...Will read the article.

[ru4cats]

And here is another article on Vit. D from MedPage today.

http://www.medpagetoday.com/Neurolog...eun=g420283d0r

[Carolinemf]

Thanks for the info. I don't think i'v ever been tested. My hubby actually told me about D3 and ms after finding some info on the net a couple years ago. I later told my doc i was taking it and he agreed it was a good idea. But no real concrete info regarding amounts , benefits, tests or side effects. apparently a uk study has found very large doses of vit d can stop ms if u r very young and just developing symptoms. I am from Aus and we certainly get enough sunlight here so maybe the protocols are different. But I started looking for info about d on here because i have some new symptoms lately yet no new lessions. And i would like to have my concerns well thought out before my neuro apt/mri/jcv in June.

[Mamabug]

... I am from Aus and we certainly get enough sunlight here ...

Actually, you likely do not get enough sunlight in Australia. MS is predominately a disease of temperate latitudes and of the western hemisphere. Principally, it is a disease prevalent in Europe, North America, Australia and New Zealand. Regions closer to the equator have a lower prevalence of MS than those located further from the equator.

I grew up in Canada, and I've read that that those who live above the 49th parellel, prior to age 15 have a higher risk. I would think the same would apply if you live in a southern country, such as Australia, rather than a northern country, like Canada.

My MS Specialist recommends 1000 mg of Vitamin D3 per day. I take 5000 mg per day, and I wonder if I should take 10,000.

[Wonderdog lady]

Actually, you likely do not get enough sunlight in Australia. MS is predominately a disease of temperate latitudes and of the western hemisphere. Principally, it is a disease prevalent in Europe, North America, Australia and New Zealand. Regions closer to the equator have a lower prevalence of MS than those located further from the equator.

I grew up in Canada, and I've read that that those who live above the 49th parellel, prior to age 15 have a higher risk. I would think the same would apply if you live in a southern country, such as Australia, rather than a northern country, like Canada.

My MS Specialist recommends 1000 mg of Vitamin D3 per day. I take 5000 mg per day, and I wonder if I should take 10,000.

That is interesting! I lived in Alaska from the age of nine to fourteen and that put me at a higher risk for MS. I know in general that MS is linked to low vitamin D and it goes without saying that living above 49th parallel would put you at higher risk, but I never heard a reference to age before. Would you happen to have link to that information.

Oh and just as a side note, my vitamin D was borderline and my Neurologist believes so strongly in the Vitamin D theory, that he has me on 15,000mg per day. Hope there isn't any downside to that

[Mamabug]

That is interesting! I lived in Alaska from the age of nine to fourteen and that put me at a higher risk for MS. I know in general that MS is linked to low vitamin D and it goes without saying that living above 49th parallel would put you at higher risk, but I never heard a reference to age before. Would you happen to have link to that information...

I can't find the original link that I read. It was years ago, and I looked where i thought it might be, but I must have read it somewhere else.

Here is a different link that might help with that information: http://www.nationalmssociety.org/Wha...What-Causes-MS
If you scroll down to Environmental Factors, you'll find this in the second paragraph:

Studies have shown that people born in an area with a high risk of MS who then move — or migrate — to an area with a lower risk before the age of 15 assume the risk of their new area. Such data suggest that exposure to some environmental agent before puberty may predispose a person to develop MS later on.

The paragraph with the 4th bullet that begins with "People who live in northern latitudes" also talks about the age 15 factor in this link: http://www.medicinenet.com/multiple_...s_ms/page3.htm

[golfwidow]

At one point my Vit D level was 19.
In 2014 my vit D level was 21
A year later, after taking 1000 mgs of D3 daily my level went to 28
My doctor now has me on 5000mg of D3 daily -
I can't wait to see what my level is next blood test !
I can actually tell a difference in how I feel after two months of daily 5000mg vit D3 --- although that could all be in my head 🤔

[jumangi]

So, I check back and find that some of you do know your actual numbers ! I also see that some of you accept your doctors' opinion. That's great. As long as you are certain that your levels are optimum for you. I don't trust that regular PCPs now enough about vitamin D and health ! If you are relying on the doctor's words telling you 'your vitamin D is 'ok' ! Why not ask for your actual numbers? Good luck

As far as I know, my PCP has never checked my Vitamin D. When going through the MS diagnosis, my neuro ordered a test. Total came back as 15.3. He Rx'ed 50,000 IU once a week for 4 weeks, then 2,000 IU per day.

2 months later my level was 36. Better, but not 'good'. He wants me near the upper 'normal range'. No change in dose yet. I will see where I am in a couple weeks after the next blood test and adjust from there.

He also prescribed B12 injections and recommended Biotin. He did not pass along any warning concerning high calcium levels in many over the counter Biotin formulations. I am now on the look out for that thanks to this site. I should have paid more attention to that in any case, as I was taking Gabapentin at the time as well.

[jumangi]

As far as I know, my PCP has never checked my Vitamin D. When going through the MS diagnosis, my neuro ordered a test. Total came back as 15.3. He Rx'ed 50,000 IU once a week for 4 weeks, then 2,000 IU per day.

2 months later my level was 36. Better, but not 'good'. He wants me near the upper 'normal range'. No change in dose yet. I will see where I am in a couple weeks after the next blood test and adjust from there.

He also prescribed B12 injections and recommended Biotin. He did not pass along any warning concerning high calcium levels in many over the counter Biotin formulations. I am now on the look out for that thanks to this site. I should have paid more attention to that in any case, as I was taking Gabapentin at the time as well.

Just got my latest blood test results back.

Total Vit D is now only 27

I see the neuro next week. I am guessing he will change my daily dose.

Also, Calcium levels were "normal". So, one less thing to worry about.

[jumangi]

Just got my latest blood test results back.

Total Vit D is now only 27

I see the neuro next week. I am guessing he will change my daily dose.

Also, Calcium levels were "normal". So, one less thing to worry about.

As expected, the neuro prescribed 10,000 IU D3 per day.

Will see where we are 3 months from now since it takes a while to build up.