vitamin d & MS?
 

haven't been on the forum in a while...too busy w/work & family stuff.

had read a few years ago when i was diagnosed that there could be a vitamin d connection to ms but only just got tested last week and i'm an 8! my neuro said the bloodwork could soon become part of standard testing for ms patients but wanted to let you all know to possibly get tested. my neuro will have me take supplements and go on some prescription but also wanted to see if any of you have experienced a similar issue with vitamin d? also if so how/if it was resolved....

take care m

I'm sure there is info here somewhere about the vitamin D and MS connection and I heard some time ago it could be a problem; mine dropped way low at one time a few years ago so I just take a good D3 supplement now and my neuro does check levels when they do blood work every 6 months.
http://i17.photobucket.com/albums/b5...i/arainbow.gif

The D used by doctors on RX is antequated... D2 and does not work much at all.

D3 OTC is what you will want. The general ratio for increasing is 1000IU D3 daily for every 10 points you need to raise (US units).

Your target should be 50. (my doctor wants me at 70!).

I was taking 5000 units a day 8mos out of the year (I am outside in summer)...and I tested only at 43. Should have been a bit higher...but it was still good compared to other people posting all over the boards. I have seen one fellow at PD here who tested at 3 ...:yikes:

Here is a thread with the newest research and medical videos:

http://neurotalk.psychcentral.com/thread92116.html

luckily i have a good neuro
 

thanks for your links... i'm lucky to have a good doctor--i just should have insisted on the test two years ago...but the ms diagnosis was overwhelming in/of itself...so was a little preoccupied...
my neuro has prescribed:
ergocalciferol (vit D supplement) 50,000 units: One capsule
weekly for 3 months
AND start simultaneous supplementation with over the counter
vitamin D3 2,000 units: One tablet daily.

and then blood work in 3 months to monitor....have to say starting to feel better-ish already...was feeling kinda weak/wobbly but just thought was another vague ms thing....

Please read the link I gave you... new studies show D2 is about 87% LESS effective than D3.

Doctors have not received this info yet. Just take more D3 daily to make up the difference. 5000IU may raise you enough daily with D3.

It takes about 3 months to work. And if you are low in magnesium even the D3 may not raise you well. Please look at that thread I gave you carefully...because there are details there to help you. Otherwise you take the D2 and fail and wait longer for D3 change to work for you. It is your choice.

d3 and forergocalciferol
 

thanks! maybe i'm reading the sequencing of the posts wrong, but i am taking d3 and a prescription forergocalciferol (vit D supplement) 50,000 units: One capsule weekly for 3 months. just started this week...but glad to have followed up with the D thing...

The 2000IU of D3 may raise you 20 pts. That will still put you low.

The D2, is not active in humans. D2 is made from plants.

Doctors don't know better, because their reference books are written by old doctors, who only know the RX form...which is over 40 yrs old.

If you use 5000 IU D3 daily instead of D2 at all you may raise close to 50 points. That D2 will not do much for you. Just because it is a "big sounding dose" doesn't mean it will work for you. I have a link to a study at the end of that thread.

Some people don't raise quickly... this has to due with other cofactors not being present like magnesium, or due to being overweight carrying alot of "fat"...where the D goes.
from http://www.vitamindcouncil.org/

thanks for the reminder
 

will certainly read more. forgot about the co-factors... but also doesn't the prescription of: ergocalciferol (vit D supplement) 50,000 units also help? :eek: have just been a little freaked that my reading was so low...but good to know...and will try to handle

D2 has shown poor response in studies:

I guess I'll have to give you the link?

http://www.nutraingredients-usa.com/...-than-D2-Study

D3 is 87% more potent than D2 in raising D levels in the blood.

On that link I gave above is also a paper on MS.

On the average, medical doctors are not informed on the newest research on supplements. Especially on the D. They will test you but give you old useless products based on the tests.

If you read the experts, you will see. Mayo, Cleveland clinic etc...from links on that thread I gave you.

Should you do what your doctor advised...you will see perhaps 20 pt increase (based on the D3) 20pts is not enough for MS patients.

The MS Clinic in my city recommends we all take 6,000 - 8,000 IU/day.

I take two 5,000 IU D3 tablets a day. I'm having a thyroid blood test tomorrow and will also ask that my D levels be checked.

So what you are trying to say without saying it is D2 is ergocalciferol?

In short:

D2 is ergocalciferol-- Only RX version-- of plant origin less active

D3 is cholecalciferol-- OTC only..no RX--biologically active in humans

Insurances will cover D2...but it is in essence covering "nothing"

I started out at 14 almost 3 1/2 years ago. I took the prescription D2 and it didn't help much. I had to add D3 for quite awhile--I think I was only taking 2,000. I finally got it up to 46. They wanted it between 60-80 at least. I get tested every 6 months now and have been playing with doses to see what is best for me. I was taking 8,000 a day for many months. I got it up to 100 by last Nov. However, I dropped down to 4,000 a day and just got tested in April and am now at 63. I have gone back to 6,000 a day. I'm sure, though, in the summer I won't need as much but the next time I'll see where I am. My recommendation is to get it tested every 6 months so you can see how quickly you raise it and what basic dose you need to take to keep the number steady.

In the meantime, I have found I am back to being iron deficient again!! :(

Vitamin D3
 

Yep, had my level tested and it was 11.
Doc put me on super high dose for awhile and then I supplement everyday with high doses I buy over the counter....6,000 per day. I am more religious about it during the gray, winter months. I am outdoors a lot in the summer and get more natural exposure.

They have also found the low D3 levels common in many other diseases as well.
Can't say I feel any better having brought my D level up, but I think it is not a "feel good" thing......its a health issue. Ignore all the Fed's recommendation of 400 iu a day, thats just plain stupid. Don't go less than 2000 iu's.

Dr Oz had a show on Vitamin D3 today and how low levels in the human body is showing up in many bad health issues.

Watch him dvr'd as I eat dinner every night except weekends. See how he acted when people had levels only in the 20's? Wish my sister would listen to me.
I was told yrs ago to take D by professor that has MS. He takes 10,000/day, I took 8,000/day till I tested a bit high - 120. I stopped taking it for a few months & since restarted taking 2000iu/day for past yr or so. My level's staying around 88. I'm also in the south & exercise daily in the sun.
Sadly i'm still going downhill but when my level was 120, I felt the best & MS progressed slower. 120 might be safe but i'll reserve my liver & kidneys for the handfull of other meds I take..for now.

My Vit D level was tested two months ago. I knew it was going to come back low, it seems by what I have read every MS patient has low vit d levels. So when the doc called saying my level was 22 and ideal is 80-100 I was not shocked, even though she was.

I work at a tanning salon and am VERY heat sensitive, so I do not tan.

But my manager read some stuff on vit D, MS, and tanning beds and did some calculations...

It says that in one week you should expose yourself to 14000 units of Vit D. She calculated 3 ten minute tans would get me where I need to be weekly, but it gets too hot. I have found 5 minutes is okay (the bed shuts off right when it starts getting warm), so I am going to try 5 minutes 6 days a week and see how that helps. She said what she read and researched is that out of the MS patients they tested doing this, 41% of them had fewer relapses because of the raise in their vit d. When she told me that, I hopped in the level 2 bed for five minutes (that was yesterday) and I kid you not I felt good when my tan was over so I am thinking there is a direct connection here, especially if the tested MS patients had a proven reduction in relapses.

I still haven't got on the Vit D supplements. That needs to be done immediately. Mayb that's why I get out of a flare and am back in another one within 3-4 weeks :confused:

When they took mine a year ago, it was 4.5. Never had it checked before. I take 2000 units a day now, not sure what it is running now. Seems like it gives me indigestion problems and worse IBS symptoms. So not sure what to do.

Puritan's Pride is having their "Buy 1 Get 2 Free" sale. I just restocked on D3 and Astaxanthin. This sale is really good plus it's only $4.95 for shipping regardless of the size of your order.

www.puritan.com

There was an article in the Momentum magazine that I received today on vitamin D. It discusses how there are many different opinions regarding vitamin D and desirable levels and safe dosages. The article acknowledges that after reading it that one is probably going to be more confused than ever and that you should talk to your doctor:rolleyes:

Well, that is a Catch 22 --because most doctors are still using the RX D2 version which is not adequate.

Even Dr. Oz's program contradicted itself! I have his latest one on D on the D thread in our Vitamin forum.

He started off saying you cannot get D from food. He told one gal to use 60,000 IU monthly of D3 when her level was 7.
Not enough.

He told a moderately low person to use Cod liver oil...which is high in A, and the thinking is that the A will block some D utilization. There is typically 1000IU of D in cod liver oil.

He told a moderately low person, to eat shitake mushrooms to raise her D (remember--- no D3 in food!-- mushrooms have a small amount of the less active D2 in them if they are exposed to light near the end of their growing period).

So even on his own show, he gives confusing advice IMO.
Most medical doctors are the same or worse. He neglected the cofactors (esp magnesium deficiency, and the fact that overweight/obese people need higher doses). He did not explain the differences between the old RX D2--ergocalciferol---and the active D3--cholecalciferol. Very important distinction.

The generally accepted information from specialist MDs is now on this site:
http://www.grassrootshealth.net/

Your goal should be a minimum reading of 50 (in US standard testing) and you should be using D3 to get there. Dr. Oz alluded to it if you watched the charts he showed...but he did not explain how to arrive at the figure quoted. Don't expect most doctors to understand either.

Get tested!

I agree MrsD. Grain of salt with what Dr O says. Total of 50's probably good. I'm holding 80's with 2000/day & Florida sunshine daily yet the MS's still progressing but like I said, when my level was over 100 I felt the best (8000iu/day).
You's know there's a few D tests besides total D. I'll have to dig my results out. I don't know if its like my testosterone but there's a "free" & "total" #. I always go by total testosterone.

I just got mine in the mail yesterday and read the article. It WAS confusing but interesting as well. I think over time, they will come up with a better idea of what the levels should be.

MrsD - It's interesting that your brought up cod liver oil as I was thinking about it yesterday. Dr. Swank's diet requires this daily. Additionally, both my parents took cod liver oil every day when they were kids. They rarely ever go sick. Whether it's the omegas (3 and 6), the vitamin D, vitamin A, or a combination of all 4 of these, who knows. But I do find it interesting. It is a strong antiinflammatory as well - probably because of the omega's. One teaspoon provides 113% of vitamin D, 90% vitamin A, 888 mg omega 3, and 42.1 mg omega 6. (http://nutritiondata.self.com/facts/fats-and-oils/628/2) Many people find it very beneficial.

For me, after studying my diet for the past couple of weeks, I get more than the RDA of vitamin D plus I am fortunate that I can soak up some natural vitamin D daily - 15 minutes of sun each day, without sunscreen, and the least amount of clothes I can tolerate without getting too cold. I have not had my levels tested and actually would be surprised if I was low in D based on my dietary intake and sitting in the sun each morning. But, as the Momentum article states, it could be the discrepancies in appropriate levels that can say you are deficient when you actually aren't and vice versa. :eek: Who knows. Just IMO, if I were deficient by blood tests, I would definitely start to wonder if I am probably not metabolizing it correctly and therefore creating a deficiency. So my question then would be, why am I not metabolizing it correctly and what can I do to correct it.

Cod liver oil for KIDS is about the right dose. 1000IU

For adults it is not enough daily.

And yes, hubby and I have not been ill with colds/flu for 2 yrs now at the higher D doses. Its been very nice!

And today we have pollution which the fish pick up quite a bit and store in the liver. I don't think 50 yrs ago the amount of pollution was as great as today.

The MS sites recommend keeping blood levels at about 100, which is double that of the low end of normal of 50 now.

I think if you want to go that high you should be monitored by the doctor, as rarely hypercalcemia may occur at those higher doses. Periodic blood tests will show if calcium levels are high at very high D intake.

I don't have MS but my doctor wants me at 70! The more D you take the less calcium you need to supplement. That is because the calcium in your food will be better absorbed. People continuing high calcium intake may be the ones who get the hypercalcemia. I've already seen one medical blog recommending no more than 600mg calcium a day when using high Vit D supplements.

my dr has me on 50000 units of vit d/week, cant seem to get at an adequae lvl of vit d though, and i take cod liver oil vitamins as well as 1 a day vit and its not improving. we dont know why...

Are you using the RX version? If so that is why you are not improving. Cod liver only has 1000IU of D...and it is thought that high A content blocks D utilization. You should be on
D3 capsules by themselves. 1000IU D3 for every 10 points you need to raise, daily. So the Cod Liver oil is only going to help with about 10 units raise if that.

Also there are cofactors needed for good D utilization.

http://neurotalk.psychcentral.com/post767084-60.html

The most significant of these cofactors is magnesium. Most of the people in US are low in this mineral too.

its a script for vit d that says "vitamin d 50,000unt cap pliva". i'm going to go get my blood work paperwork later today to see what lvl i'm at exactly. i'll check all that other stuff too

That is D2.... there is only one RX form of D and it is the old plant derived form.

New evidence shows that it does not work well. Up to 87% less well than the OTC active form called D3.

Get your newest results, drop the RX D2, and use instead D3
(many places sell it--NOW brand and Puritan's are very inexpensive)
1000IU for every 10 pts you need to raise. If you are overweight, the fat on your body will take up some of it as well, so you might need to increase that 1000/10 to 1500/10pts or more. It takes about 3 months to show any changes with D supplements. So it is not a quick result.

D2 is not active in humans. It is very old, and back then no one knew that.

D3 is the active form, just like you get from the sun.

To the tanning bed girl - I ALWAYS feel worse if I don't see sun for 1 day. I don't know how people survive indoors. They can't be strong.
I don't get what's so complicated about getting everyones level to at least 50. 2000i.u. gel caps are so tiny & cheap when you wait for buy 1 get 1 free.

Get tested, if say your level's 20, take 4000iu/day for a month & get checked again. Remember it's aborbed & stored in fat so levels don't fall off quickly.

Also everyones different. My breast cancer survivor friend was scribed 5000/day cause her body's level just wasn't going up on 2000. Something like that just know 2000iu/day to me isn't 2000i.u./day to anyone else.
2000/day is holding me in the upper 80's and i'm tan.

10,000i.u's is what they say 1/2hr full body exposure white person produces right (darker skin absorbs less so african american's really need to get checked)?

my vitamin d lvl is 19. or 25. attached, maybe someone can decipher it for me :confused:

and i had been taking the supplements (Rx) for over 2 months. 1 month was 2000/day.


http://i56.tinypic.com/14nzcpw.jpg

also, i have high alt & ast (83 & 76), low potassium (3.3), and i dont see magnesium on there. top it off with some pretty bad foot pain that i'm worried might be gout? only my right foot though and my urea nit lvl is 15. plus its in the metatarsus area? feels swollen and painful

Saw this today too. They can't even decide what a normal level should really be! Yikes! But one thing I got out of it: they all agreed 2000 iu a day is a good bet on the amount anyone should really be taking.

damn my memory is so bad. i was at walmart and didnt buy the d3 formula because i thought you guys said i needed D2. :paperbag:

Medicine moves very slowly. I agree it is difficult who to believe.

Go to Grassrootshealth.net and see the list of doctors who support the new research.

Studies show very little risk of toxicity even from massive doses for long periods of time. The body of work that has been done in the past 10 yrs is quite large now.

I agree for MSers to follow the ultra high guidelines target (100) is a bit more worrisome than the recommendations that are more moderate (50-80). So look up the studies for MS recommendations specifically to help you decide. The only toxicity found, and that is anecdotal is elevated calcium and that can be tested for and monitored.

Studies keep rolling in for MS:
http://neurotalk.psychcentral.com/post767924-1.html

I will say both hubby and I feel so much better with D supplements. I used to get alot of sun on vacation and come back home with a deep tan, and feel great and by end of Sept the creeping awfuls would return for me (arthritis pain). Neither one of us has had an upper respiratory infection since increasing from 1000IU daily (which is what we used to take) for just over 2 yrs now.

Get tested, and decide what you will do. But staying really low is not going to be good for anyone, MSer or not.

I personally was skeptical years ago when the D information started rolling in. We started on 1000IU daily, increased to 2,000 next year, then 4000 and finally 5,000 and I still tested at 43! 5,000 seems to be good for both of us tho and we do get sun more than most people.
Now I am taking 10,000 IU one day and 5,000 the next and will get a retest in fall with my annual physical. Doctor wanted me to try and get a bit higher closer to 70.

I don't feel comfortable giving really high dose recommendations yet to people on these boards, esp the ultra high MS recommendations, so being monitored for doses over 5,000 IU daily D3 is still a prudent thing to do. Just remember, do not take high dose calcium products while on the high D. That is where you may get into trouble! The D will facilitate absorption of calcium so you should be okay with food sources.

My Vitamin D tested Feb 2010. The endo wasn't sure about anything other then total but i said check d2 ect. I have to check records to see what dose of d3 i was taking then. I'm double (88) total now. No idea what the rest means. I've never taken d2.

25-OH total 44 ng/ml
25-OH, D3 44ng/ml
25-OH, D2 <4 ng/ml
1,25 (OH) 2, total 56 pg/ml
D3, 1,25 (OH) 2 56 --/ml
D2, 1,25 (OH) 2 <8 --/ml

This lab site explains the two tests:
http://www.labtestsonline.org/unders...in_d/test.html

Where I had mine done, they only do one D...now. Places vary, and reasons for the tests vary.

I also took for a long time 50,000 icu but have not for about a month and just took another one tonight. I have not checked my vit. D levels for about a year.