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,

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:

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!

Good advice! :)

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 ???

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.

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

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

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

If one does a search on "multiple sclerosis mmp-9" the connection will be revealed.

I have the BEST presentation of this in a study in my Web Storage -

http://home.ix.netcom.com/~jdalton/Yongrev.pdf SEE FIGURE 2 page 505 and MS narrative

The Vit d3 connection and MMP-9s.

jackD

THE NGF thing is a bit more difficult to find.

jackD


***WARNING*** ***WARNING*** ***WARNING*** ***WARNING***

This site is for researchers ONLY!!!! Can cause mere mortals to go into shock!!!!

http://www.copewithcytokines.de/cope.cgi?key=NGF

Another little tidbit found there that clarifies a lot of things

vit D question
 

Hi folks..I've read many of your posts about Vit D. I've had MS for over 20 years and am still learning from you all! My Vit D levels are low and yesterday my Primary Care Doc gave me rx for Vit D once a week.

My question is: Do any of you know why we with MS have low Vit D levels? What causes it?

Thanks!

I don't know what causes us to have lower levels of Vitamin D. Maybe someone who knows will come along soon and post about it.

What kind of Vitamin D did your doctor prescribe? If it's not D3 then it's pretty useless. Most doctors still prescribe D2 which, IMHO, is a total waste of money. D3 is available OTC and is relatively inexpensive.

Here is a link to a thread about Vitamin D: http://neurotalk.psychcentral.com/thread140053.html

Thanks for resurrecting this thread on Vitamin D because it is timely for me.

My wife has low Vitamin D and suffers from malaise, body fatigue, heavy limbs, and that "just not right bad feeling." She is now on a weekly OTC Vitamin D supplement in addition to a prescribed Vitamin D monthly.

My labs from April show a Vitamin D, 25-Hydroxy (?) level of 27.3 with a standard range of 32.0 - 100.0. My doctor has asked that I start taking an OTC Vitamin D supplement of 1000 iu daily. All other labs are well in line for normal.

Is this the same thing you are all discussing? What happens with a low Vitamin D level any way?

Please read the link Kitty gave above to my Vit D thread.

The RX version of D is D2 and is not very useful. Doctors still prescribe it but it just doesn't work. YOu need D3 OTC which is the active form to see any improvements and results. The D2 is a historical hold over from the past when D3 was not discovered.
D2 comes from plants and is not used by the body much. Doctors are not keeping up on this fact, and only are good for testing these days.

The rule today is 1000IU D3 to raise you 10 pts. Your target should be 50-70ng/ml. So if you are in the 30's you need 2000IU daily of D3. Get tested in 3 mons and adjust accordingly.

You are wasting precious time using the RX D2.

My thread has the new research and medical videos on this subject. So to see what benefits you can expect..the video from Univ. Medical School of Calif San Diego, and has the answers to that.
One of the most obvious is that you won't catch so many viruses and colds/flu. The other benefits are neurological among other things.

I'd also recommend you get a B12 test, since you cannot feel your toes when you cut your nails. In the same way, doctors report "normal" for very low ranges... which is no longer accurate. You should have at least 400 in US for your results. Anything lower needs supplements.
Here is the Medical link for doctors--(many have not learned this yet) from 2003... to correctly treat low B12 patients:
http://www.aafp.org/afp/2003/0301/p979.html
Low B12 impacts the entire nervous system, causing CNS effects similar to MS and peripheral neuropathies. It is very common in the elderly.

Medical doctors in US report "normal" for low B12 and Vit D because the lab ranges on the reports are OLD and no longer acceptable. A person can have significant neurological damage from B12 readings in the 200 or below range (which appears as "normal" on reports still).

Results of recent research into the effects of Vitamin D and MS were released today here in Australia. Here's a short synopsis.

"We found that higher levels of vitamin D are associated with a reduced likelihood of a relapse in MS."

"The study demonstrates that for each 10nmol/l* increase in serum vitamin D dosage, there was up to a 12 per cent reduction in the likelihood of a relapse."

"Clinically, raising vitamin D levels by 50nmol/l could halve the hazard of a relapse."

"Essentially, the study showed that people are more likely to have a relapse if they had low vitamin D levels."

Read more: http://www.menzies.utas.edu.au/artic...ntView&id=1291

Thanks, Koala!

For the US readers here, we measure the D differently than in Australia. They use nmols there and we use ng/ml

Here is a link to the conversion tables for countries using different report concentrations:

http://jama.ama-assn.org/site/misc/auinst_si.xhtml

Thanks Koala and mrsD! This information is invaluable. :)

I felt the best & progressed slowest taking 2000iu 4x/day. Level was 120's.

wow, i don't know who resurrected this thread but thanks.

all your info is so valuable, i'm printing off the whole thing.
i'm going to ask my dr to recheck my levels of B and D because it hasn't been done in a while.

and, i didn't know about D3.
thank you all very much.

I take dry, not oily D3 capsules, to avoid soy oil which many are
packaged in. But I do take it with a meal, and most meals have
some fat in them.

Mrs. D, I am responding here to your stats on B12. Like most people with Polycythemia Vera (my disease #3) I have high B12 readings, usually around 1200. I have a theory that
possibly we don't absorb B12 well, and that's why it's high on blood tests (that is, those with Polycythemia Vera, not MS). I also test high on Omega 3's, although I cannot take
them very well without spastic reaction in the gut. I think I may not absorb them well.
But I am taking small amounts Omega 3 in food, and taking small dose of Alpha Lipoic Acid, which is said to help neuropathy.

My D3 levels went to 85% of normal on just 600 a day. I have increased to 800. As I
explained elsewhere, I don't go above that because D3 is a hormone and might
threaten Porphyria, my Disease #2. I have no proof or stats on that, but I think I went
up pretty well on only 600 D3 a day, and at 800 I am probably normal.