Almost 4,000 IUs of Vitamin D3 a Day -- And the Verdict is...
 

I'm LOW! :eek: I am utterly shocked. I'll know more tomorrow when I speak to my endocrinologist but this was one of the results he left on my answering machine.

A brief history -- I started reading about Vitamin D3 shortly after I was dxed, way before information started to dominate the news. What I researched made sense to me and after I started taking it, the first doctor I saw and told was my endocrinologist. (Since D3 functions in the body as a hormone, it wasn't surprising that he was very knowledgeable.) He explained the importance of testing liver function if you're supplementing with this kind of dose. I had my first work-up probably after I'd been taking it for about 8 months. Results were within normal range and liver function was fine.

I asked him during my visit last week if my he thought my last test being within normal range definitely meant that I was low before I started taking it, to which he said yes. And now, fast forward a year, I'm low with THIS kind of dose!

I know there are a lot of posts about D3 but I decided to start a new thread to strongly encourage everyone to get your levels tested on a regular basis. You never know! I am doing pretty well MS-wise and I have often wondered if taking vitamin D3 is one of the reasons. No way of knowing for sure but I'm not going to stop to find out!

I've been in and out of town and crazed but I will visit again soon to share some other interesting things about my endocrinologist's visit MS-wise which might be interesting to the board.

Big :grouphug:s to everyone!

My Ms doctor called about 3 months ago and told me my vitamin D was low.He said it was 16 :eek: and that normal is within 50 to 100. So I have to take 5,000 IU of vitamin d once a week. But have been doing a lot better since taking it.I haven't had a relapse in 3 mths I am in one right now.

Well, good for your MS doctor to test it! It doesn't seem like it's always done as a matter of course (at least when I was dxed 2 years ago). My MS doctor never mentioned it but then again, he also never ran a B12 test. :rolleyes:

I think you mean 50,000 IUs, not 5,000, correct? It's not unusual for doctors to prescribe D by prescription in a 50,000 IU weekly dose for patients who are really deficient. I asked my endocrinologist about this last year and he explained that for some reason, that one high weekly dose doesn't present the same potential danger as the daily dosing in amounts like I was taking -- has to do with the build-up as opposed to that one megadose. But still, liver function should always be tested when taking D supplements.

no matter what I do, I cant seem to keep my D levels up to normal standards. :(

Sheesh, I don't think I ever had my D levels tested....B12 but not D....I just take a one a day multivitamin. Hmmmmmm.

When I was diagnosed my Vitamin D level was at 17. This was 18 months ago. I have managed to get it up to 46 now after doing the 50,000 a week for awhile, taking a break for several months, and then starting on daily supplements. The neurologist who runs my clinic likes to see all MS patients in the 60s-80s range. I have been taking 3,000 a day and may bump up to 4,000 a day. I would like to get it higher!

i'm going to ask about this at my annual PE soon.
i was 24 and they wanted it at 30. i started 800IU/day and have been on that for a while. the level came up (i can't remember to what) but i'd like to keep it that way. and the recommendation of 60-80; i'll need to ask about that.

thanks for the info.

In February, my D level was at 6!! :eek: The docs at Hopkins put me on 10 days of 50,000IU of D and then once weekly dose. It's been a few weeks now. I am going to try to get re-tested tomorrow.

I heard that people who did a HiCy type procedure in Chicago and not at Hopkins, they use Vit D shots post treatment as opposed to using copaxone, as I'm currently doing.

I also inject 1 gram of B12 2x a week. I do notice a difference with this.

I guess I didn't learn my ABCs too well.... ;) They're not cooperating with me. Ho Hum.

~Keri

I am going to ask to be retested for this the next time I go to the doctor's. They told me last year that my level was normal.

I only spoke to the doctor briefly but my level dropped to 24 which is considered deficient. The last time I was tested it was 44 and in retrospect, I realize I could have (perhaps SHOULD have) pushed it higher but I was cautious because I'd been taking approximately 4,000 IUs for about 8 months and it does have a tendency to build up so.... At any rate, I'm not quite sure how I'm going to go about pursuing this. I have to get my bone density test done before we talk about a solution. My endocrinologist is more concerned about D deficiency because of bone health but obviously, there are other things on my mind.

Barb, glad you're getting retested -- look how I changed in a year doing the same dose! Sally (and others) please get tested! I know now I'll be getting this test every year and because of these current results, my next one will be in 4-6 months.

I should have made it clearer in my initial post that the research I did about vitamin D was specifically in relation to MS; that it's been theorized that it can be potentially helpful to those with this disease. D is an immune system modulator so it's needed to help it function properly. Other more recent things I've read about D and MS have to do with maintaining and possibly even having therapeutic value to the CNS.

Keri, that is very interesting about the HiCy type procedure in Chicago using D. If you find out more about it, would you please post?

DM, yes, a deficiency can cause a variety of sx including fatigue, depression, weight gain and more and it can also affect neurological functioning. It can also cause a susceptibility to various illnesses and I was interested to read an article yesterday about low D and respiratory illnesses since I am prone to sinusitis. The form of D you are taking is D2 -- the preferred form is actually D3 (cholecalciferol) -- it is absorbed better and is the more natural form (D3 is what you get from sunlight). The 50,000 prescription dose is always D2 though -- not sure what the deal is with this; if it's just because that's the only way it's available or if it's for another reason.

To Keri, Dejibo and anyone else who can't seem to raise their D level, it could be a malabsorption problem -- my doctor mentioned this to me today. If things don't improve I am going to have to travel down that road to figure out what's going on. In the meantime, I increased my intake to 5,000 IUs starting yesterday, with my endocrinologist's permission.

I have a lot of info. but here are just some random articles about D, including information about the proper test (like B12, not all testing methods are created equal).

I don't claim to be an expert, just a person with MS who thinks there's something to all the chatter about MS and vitamin D and has done a lot of research. To those of you who supplement with over the counter D, it should be D3 -- you should always tell your doctor you're doing it and get blood work done to test levels on a fairly regular basis as well as testing liver function. D is not expelled through urine so it can build up in the body and cause damage. (My doctor tests kidney function as well but I'm not 100% sure that's because of taking D or something else.)

http://labtestsonline.org/understand..._d/sample.html

http://www.vitamindcouncil.org/healt...eficient.shtml (there's a lot of info. on this site, including something about MS but frustratingly, they don't have a built-in search function -- you can also subscribe to their newsletter.)

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

http://courses.washington.edu/bonephys/opvitD.html

http://www.westonaprice.org/basicnut...-d-safety.html

In case anyone is interested, here's the article about vitamin D and respiratory infections from February '09 -- the only way to access the link is from the search engine so it's a Google result:

http://www.google.com/search?hl=en&i...88670&aq=f&oq=

Oops. Sorry, I missed you in my last post. We're twins at 24 -- and that number is considered deficient. Just a hunch from a non-expert but I wouldn't be surprised if the number hasn't come up much -- 800 IUs is pretty low to correct a deficiency. I'd be very happy to be wrong but I'm glad you're going to get retested soon.

more on D
 

Some drugs deplete Vit D from the body.
Antiseizure drugs
H2 antagonists (Zantac/Axid/Tagamet are listed)
Predinsone and other steroids
Rifampin (antibiotic)
Orlistat (OTC Alli diet pill)
INH (TB drug)
Barbiturates (not used commonly today)
there may be others not studied enough yet as well

I suggest people who are using D3 to use a gelcap/liquigel formula and not a dry cap or tablet. I believe the gelcap/liquigel type is more completely absorbed.

Confusing testing is occurring with D3 and Quest labs.
So many patients may be getting erroneous test results:
http://community.wegohealth.com/prof...st-diagnostics

There are people who do not absorb nutrients properly.
This may be due to inflammation in the small intestine.
Celiac's/gluten intolerance or Crohn's may be the culprit.

The loading dose of 50,000IU given by RX is D2. The reason for this is that there is no RX version of D3. D2 is inferior and there are places selling 50,000 IU OTC D3. I cannot verify however if these are gelcaps/liquigels.
I myself use NOW brand 2000IU and I take two of these.

There is a warning that extended use of very high D intake may result in loss of calcium thru the urine and those prone to kidney stones may have a problem.
This study on MS patients at very high levels did not show
this effect on calcium:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
This is the full article:
http://www.ajcn.org/cgi/content/full/86/3/645

On the other hand there is a study out that showed no adverse effects of D3 on normal volunteers at levels of 10,000 IU daily.
http://www.rejuvenation-science.com/...per-limit.html

So there may be reasons that testing shows low levels.
Test errors
use of drugs that deplete D3
use of dosage form that does not dissolve
poor absorption at the intestinal level
Body using it up too quickly

All the the D information is still relatively new. And because of this I think confusion will be common, and many questions still will be forthcoming.

Thanks, mrsD!

I forgot to add this before -- there are studies that show that by relative standards, there is a high incidence of vitamin D deficiencies within the MS population. (Higher Homocysteine levels too -- but that is another topic! :D)

Impossible to say if it's the chicken or the egg but it does get you thinking! It also frustrates me because I think that things like this are worth looking at more than they are. But as we know, non-pharmaceutical studies are few and far between and tend to be smaller when they do occur.

Also wanted to add this recent news::

http://www.news-medical.net/?id=45660
So although this deals with susceptibility to developing MS, it's obviously the same train of thought that leads some to believe that supplementation/correcting deficiencies can help control it after onset.