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-   -   Vitamin D (https://www.neurotalk.org/multiple-sclerosis/53802-vitamin.html)

NurseNancy 09-07-2008 01:29 PM

Vitamin D
 
i just found out my vit D level is 24 which is pretty low. normal is 32 to 100.
i've been doing some research on this and found that vit D is needed to modulate the immune system as well as for good bones.

i went to the supplement site here and got some good info.
but, does anyone have any experience with low levels and how did you best get them up. how long did it take?

my dr said to take 800 IU/day. i already get 800 IU/day in my Calcium with D supplement and 400 IU with my multivit. maybe i'm not absorbing it.

anyway, just interested to see if you all have knowledge about this.
thanks,

Bearygood 09-07-2008 01:57 PM

Judy, I stumbled across information on vitamin D a month or two after I was dxed and in the past year, there's been tons of information about it in the media.

It's specifically D3 (aka Cholecalciferol). I read everything I could and it really made sense to me. I started taking just over 3,000 IUs a day -- I added up what I had in my calcium and multi and then supplemented from there. The MDR has been raised to 600 (although this info. seems hard to find) with an upper limit of 1,000. This is for normal people though.

My endocrinologist was the first person I told I was supplementing and he was a little alarmed at the dose. He's well aware of D3 because it actually functions in the body as a hormone, just like the way sunlight (also D3) synthesizes in the body. He explained to me that vitamin D can build up in the body and become toxic so he tested my levels and liver function. (This was almost a year after I'd been supplementing.) Liver funcion was fine and even with supplementing with D3 all that time, my levels were within normal range. Really made me wonder what they were before! It really does seem that a lot of people with MS are low in vitamin D.

Most people who are on the vitamin D3 kick recommend not supplementing more than 4,000 IUs daily and in the summer or if you live in a sunny climate year round, the dose should be decreased. You will also read about some people whose doctors have prescribe a dose of 50,000 IUs once a week. I asked my endocrinologist about that and he said that taking a high dose once a week does not seem to present the same problems as building up daily in the body. It's important for anyone supplementing with D to get their levels and liver function tested periodically. I go back to my endo in the next month or two and we'll be checking again.

BTW, there's been a lot on the news lately about vitamin D3's suspected helpfulness in regard to breast cancer. :hug:

NaeNae 09-07-2008 01:59 PM

Judy I have had severe Vit D deficiency for a few years now, I take 4,000iu 3-4 times a week and do well with that, I did 50,000 weekly and got kidney stones. But my Vit D level without it last time was 2 :eek: and before that 8! I think it is a matter of just trying doses, being on top of your labs and finding out what best works for you, because as you know, whats good for the goose is not necessarily good for the gander! Good luck finding your normal!

Bearygood 09-07-2008 02:01 PM

Quote:

Originally Posted by NaeNae (Post 363628)
I think it is a matter of just trying doses, being on top of your labs and finding out what best works for you, because as you know, whats good for the goose is not necessarily good for the gander! Good luck finding your normal!

Good advice! :)

Kristi 09-07-2008 02:18 PM

Quote:

Originally Posted by NurseNancy (Post 363608)
i just found out my vit D level is 24 which is pretty low. normal is 32 to 100.
i've been doing some research on this and found that vit D is needed to modulate the immune system as well as for good bones.

i went to the supplement site here and got some good info.
but, does anyone have any experience with low levels and how did you best get them up. how long did it take?

my dr said to take 800 IU/day. i already get 800 IU/day in my Calcium with D supplement and 400 IU with my multivit. maybe i'm not absorbing it.

anyway, just interested to see if you all have knowledge about this.
thanks,



Hi,Judy
My neuro has had me taking 50,000 units a week of Vit D for the last 8 weeks.Just two weeks had my blood test and I'm still not up to the normal levels yet(my number is 25), so she has me taking the D for another 6 weeks.She also had me taking calcuim 1,000 mgs of calcuim a day(normal range is btw 8.2 and 10.2 my number is 9.6 well come to learn I can't take all that calcuim,I stopped taking it about a week ago because it caused me alot of constipation and stomach problems. My neuro said once my D levels are in the normal range she'll put me on 1,000 units a day of Vit D. So it's taking me along time to get my levels up in the normal range I think Judy that you need a quick boost that's why my doctor has me taking 50,000 units a week that's what patient's who need a quick boost are put on from what I've read. Good luck. Kristi

IMPORTANT.................

I forgot to mention that I've had a dull constant pain or ache in my upper abdomen for a week now and I was thinking it was from the Calcuim but now I'm thinking maybe it's from all the vit D I've been taking.I'm going to call my neuro this week about it and I made an appt with my primary doctor but I can't get in till Oct 7. Has anyone else had this problem ???

Bearygood 09-07-2008 02:24 PM

I'm not a doc but I think Kristi has a point about the boost. Like I said before, the upper limit for normal people is now apparently 1,000.

watsonsh 09-07-2008 08:18 PM

I am low too Judy. Was at a 24 , the a 30 now a 32. Doc would like it in the 40's or 50's even 60's.

D3 is the way to go. And my doc said best to take it with fats and not on an empty stomach. Thats why some of the D's are gel caps and have some oil in there

Natalie8 09-07-2008 11:12 PM

Hi Judy,

I had my vitamin D levels tested 2 months after I was diagnosed and my level was at 17. I took the 50,000 IUs prescription pills for 9 weeks. It then got up into the 30's. For awhile I was taking 1,000 a day after that but I have to confess that I've been lax about taking it in the past few months.

I'm going to ask my neuro next week if she can test my levels again. I will tell you that I lived in San Diego (LOTS of sun) for 8 years and have been in a very sunny part of Texas for 4 years and I was still deficient! So even the sun didn't seem to help my level. I agree with others -- you should take prescription for a BIG boost to get started.

I'm sure you know that deficiency of Vitamin D can cause weakness, fatigue, muscle aches/pains as well as immune issues.

Here are some useful websites. Good luck getting your level up! :)

http://www.womentowomen.com/nutritio.../vitamind.aspx

http://www.vitamindcouncil.org/

Natalie

jackD 09-08-2008 12:51 AM

Vitamin d levels should be on the HIGH side for MS folks.

That usually means taking some Vitamin D3 in the amount of 4,000/5,000 IEUs daily.

That 50,000 Vit D stuff is Vitamin D2 which is the ONLY Rx stuff available. It may work and fix the problem BUT it is a poor version for HUMANS.

Taking Vitamin D3 is MUCH MUCH BETTER.

Vitamin D3 levels at 100 will greatly lower MMP-9s (the stuff that makes holes in the BBB Blood Brain Barrier and then cuts myelin into three pieces for lunch by other invaders who get into the brain via the hole it just made.)

ALSO - VERY IMPORTANT - at 100 level it (Vitamin D3 and related components) causes the BRAIN to really produce lots of NGF - Nerve Growth Factor. Great stuff for those small MS Brain repair jobs. (pun intended)

The upper limit for us poor sick MS folks is 10,000 IEUs. This is also the upper limit for Normals but I wanted the MS folks to feel SPECIAL.

I can post all the studies but it is all in NLM http://www.pubmed.gov and since I have posted this many times for the last 10 years I would prefer someone else visit the magic place I get all this good info.

jackD

jackD 09-08-2008 01:03 AM

Quote:

Originally Posted by jackD (Post 363971)
Vitamin d levels should be on the HIGH side for MS folks.

That usually means taking some Vitamin D3 in the amount of 4,000/5,000 IEUs daily.

That 50,000 Vit D stuff is Vitamin D2 which is the ONLY Rx stuff available. It may work and fix the problem BUT it is a poor version for HUMANS.

Taking Vitamin D3 is MUCH MUCH BETTER.

Vitamin D3 levels at 100 will greatly lower MMP-9s (the stuff that makes holes in the BBB Blood Brain Barrier and then cuts myelin into three pieces for lunch by other invaders who get into the brain via the hole it just made.)

ALSO - VERY IMPORTANT - at 100 level it (Vitamin D3 and related components) causes the BRAIN to really produce lots of NGF - Nerve Growth Factor. Great stuff for those small MS Brain repair jobs. (pun intended)

The upper limit for us poor sick MS folks is 10,000 IEUs. This is also the upper limit for Normals but I wanted the MS folks to feel SPECIAL.

I can post all the studies but it is all in NLM http://www.pubmed.gov and since I have posted this many times for the last 10 years I would prefer someone else visit the magic place I get all this good info.

jackD


Here is an example of what you get if you do a search on ("vitamin d3 10,000)

jackD

Quote:

1: Am J Clin Nutr. 2007 Jan;85(1):6-18. Links
Risk assessment for vitamin D.Hathcock JN, Shao A, Vieth R, Heaney R.
Council for Responsible Nutrition, Washington, DC 20036-5114, USA. jhathcock@crnusa.org

The objective of this review was to apply the risk assessment methodology used by the Food and Nutrition Board (FNB) to derive a revised safe Tolerable Upper Intake Level (UL) for vitamin D. New data continue to emerge regarding the health benefits of vitamin D beyond its role in bone. The intakes associated with those benefits suggest a need for levels of supplementation, food fortification, or both that are higher than current levels. A prevailing concern exists, however, regarding the potential for toxicity related to excessive vitamin D intakes.

The UL established by the FNB for vitamin D (50 microg, or 2000 IU) is not based on current evidence and is viewed by many as being too restrictive, thus curtailing research, commercial development, and optimization of nutritional policy.

Human clinical trial data published subsequent to the establishment of the FNB vitamin D UL published in 1997 support a significantly higher UL.

We present a risk assessment based on relevant, well-designed human clinical trials of vitamin D. Collectively, the absence of toxicity in trials conducted in healthy adults that used vitamin D dose > or = 250 microg/d (10,000 IU vitamin D3) supports the confident selection of this value as the UL.

PMID: 17209171 [PubMed - indexed for MEDLINE]


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