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Crohn's Disease Forum » General IBD Discussion » Vitamin D and B12 levels


06-27-2012, 04:49 PM   #1
marjaw
 
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Vitamin D and B12 levels

Finally got my levels. D was at 29.4 and they are recommending upping my current 1000iu/day to 2000iu/day. B12 was 394 and they want me to take a suppliment but she wasn't specific on what strength. When I asked she said "Oh 500 should be ok". Any opinions?
David you're up on this topic, what do you think?
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Crohn's Ileitis diagnosed Dec 2011
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06-27-2012, 10:49 PM   #2
akduck
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Marjaw - My vit D was 28 and I am taking 50,000 IU once a week for 8 weeks, then going on 4,000 IU a day for 4 months, then test again. I live in Alaska and definitely never get enough sun to take care of the Vitamin D. I did read that D3 is the best - easier to absorb, I think.
My B12 was 123, and I am getting shots for that.

I am sure that someone who knows more will answer - I was only diagnosed with Crohn's a few weeks ago, so am still learning about all of this!

Good luck with getting the levels where they need to be!
06-27-2012, 11:48 PM   #3
SherryLynn
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My understanding is with B12 you cant take too much, if you dont absorb it, you will pee it out. Get confirmation from others first about that.
06-28-2012, 12:29 AM   #4
David
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Finally got my levels. D was at 29.4 and they are recommending upping my current 1000iu/day to 2000iu/day. B12 was 394 and they want me to take a suppliment but she wasn't specific on what strength. When I asked she said "Oh 500 should be ok". Any opinions?
David you're up on this topic, what do you think?
The Vitamin D Council, who I respect a great deal feel that healthy adults should take 5000 iu of vitamin D per day. At the very least, you want to get your D to 50. Higher than that would be preferable.

As for vitamin B12, with a level of 394 pg/ml, according to this paper, there is a 50% chance you're deficient. In my opinion, at the very least, you want to be at 500pg/ml and maintain above that. Closer to 1000 is better. The key here is how well you absorb. If you absorb well, then 500mcg per day would be more than enough. But you have Crohn's Disease, so chances are you do not absorb well. If the roles were reversed and I had a level of 394 and they wanted me to take an oral form, I would start by taking 1000mcg per day AND a complex B vitamin. I would then get retested in six weeks. If my level was not above 500pg/ml, I would ask for injections and continue with the B complex and regular monitoring of B12 levels.
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06-28-2012, 02:14 AM   #5
livegreen
 
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My Vitamin D was 17 ng/ml my G.I doctor wants me on 50,000 IU's per week, for 8 weeks, then 1000, or 2000 IU's a day
Mind you there are two different units that they measure vitamin D levels, this could be confusing.
For B12 I take 6 drops a day from the brand PURE . My levels are about 400.
I prefer the drops because then I do not have to ingest all the additives that they put in pills.
I hope this information helps.
06-28-2012, 09:15 AM   #6
kiny
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If you need B12, you should be given shots in my opinion, the shortage in B12 in crohn is because of the inflamed terminal ileum, that's the place where B12 it taken up, and the place were most have the disease, adding more oral B12 isn't going to help if your terminal ileum isn't taking it up anyway, and at least with a shot they actually know how much you're getting.
06-28-2012, 09:48 AM   #7
David
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If you need B12, you should be given shots in my opinion, the shortage in B12 in crohn is because of the inflamed terminal ileum, that's the place where B12 it taken up, and the place were most have the disease, adding more oral B12 isn't going to help if your terminal ileum isn't taking it up anyway, and at least with a shot they actually know how much you're getting.
It's more complex that just the terminal ileum being inflamed. The process by which vitamin B12 goes from being bound to protein until it is absorbed in the terminal ileum is very intricate and begins in the mouth with the release of haptocorrin and has steps in the stomach and duodenum as well. Then there is the recycling of B12 with enterohepatic circulation. Crohn's Disease can interfere with ANY of those steps so you can have a perfectly healthy terminal ileum but still be deficient.

I agree with you that a significant number of people with Crohn's Disease who are deficient in B12 are going to require shots. As that can be a pain, if people want to try other methods first, I can understand that and support the idea as long as they are tested again not long thereafter to make sure they're getting to ideal levels. If they're not, then shots it is.
06-28-2012, 10:01 AM   #8
marjaw
 
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Thanks for all the input and David much thanks to you for suggesting I get my levels checked in the first place. You are all very much appreciated.
06-28-2012, 10:03 AM   #9
CLynn
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David, what's the best D to take? Should be D3, correct? But what else?
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Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
06-28-2012, 10:33 AM   #10
David
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I personally take D3 but there has been conflicting information about D2 versus D3. Some studies show they help vitamin D levels about the same, others suggest D3 is better. This meta analysis of D2 versus D3 suggests that D3 is better but my guess is how you take it plays an even bigger part. Vitamin D is fat soluble so taking the gel capsules or drop forms that include some form of fat is probably best. I've heard of people taking the normal tablets with something like olive oil and doing fine as well. In speaking with Dr. Cannell of the Vitamin D Council, he said,
Dr. Cannell said:
Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.
I know many Crohnies are deficiency in zinc and magnesium. Probably K2 as well. I'm not sure about boron, there's not much data out there on it. Be careful with zinc though, supplementing it at rates of 50mg/day and higher can easily lead to toxicity.
06-28-2012, 10:43 AM   #11
CLynn
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Yes, that is what I remember reading before, you have it posted elsewhere. So am I reading this correctly? In that, there is a D3 with all that in it? Or is it that if we supplement D3 we should also supplement these with it?
06-28-2012, 10:59 AM   #12
David
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This: http://www.biotechpharmacal.com/catalog/d3plus/
06-28-2012, 12:10 PM   #13
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Ahh...this is a question I've had and browsed threads about for quite awhile! Thanks CLynn and David!
06-28-2012, 12:15 PM   #14
CLynn
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Yes, thanks, David! You are such a peach!
06-28-2012, 04:08 PM   #15
Jobell
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I have a quick question about B12. I know that i cannot really absorb it, since i had my terminal ileum removed. But if I take the kind that goes under the tongue, is that absorbed directly into the blood stream (I thought that was the point, that there are many blood vessels there, and permeable tissue)? I would LOVE to be able to up my B12 without more shots. I often forget to take my shots on time too.
06-28-2012, 04:28 PM   #16
David
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If your terminal ileum cannot absorb vitamin B12 due to resection or other causes, then oral forms are shown to be absorbed at a rate of 1-2% of the total dose via another pathway. I haven't seen data for sublingual, patch, and nasal forms for people with Crohn's Disease but this study showed oral and sublingual increases to be about the same in people without IBD who had B12 deficiency.

With a resection of the terminal ileum, I personally would not rely completely on sublingual B12. But if you can get a doctor on board with you to test you regularly, a combination might work so you don't have to take shots as often. The important thing is keeping B12 levels within the ideal range. If you can maintain an ideal range with a combo, then maybe try just sublingual at a later date.
06-28-2012, 04:42 PM   #17
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Just a quick note to those taking or being recommended to take 50,000 IU's for vitamin D fro 8 weeks. My levels were very low last year and my doctor (actually my OBGYN, not my GI) prescribed me the 50,000 IU's with the warning that some people have a bad reaction to taking that much D including heartburn, diarrhea and cramping. I experienced these symptoms severely with/in the first week. They were so bad I thought I was in another flare. I felt better the moment I stopped taking the D and it didn't trigger a flare.

My doctor then had me take 5,000 IU/day for 3 months and then re-checked my levels. After doing that for 3 months and now being on 2,000 IU/per day, my levels are back up to normal.

Anyway, i just wanted to warn you all about those potential side-effects of taking the 50,000 IU of D. Good Luck. I hope it works better for you than it did for me.

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First dx Crohn's February 2009 - Re-dx September 2011
Current Medication:
Pentasa (4,000mg/day)
Pepcid
Vitamin D3 (2,000 IU)
Calcium w/ Vitamin D
Fiber (2g Methylcellulose/day)

Previous Medication:
Entocort
Asacol
06-30-2012, 04:23 PM   #18
livegreen
 
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Just a quick note to those taking or being recommended to take 50,000 IU's for vitamin D fro 8 weeks. My levels were very low last year and my doctor (actually my OBGYN, not my GI) prescribed me the 50,000 IU's with the warning that some people have a bad reaction to taking that much D including heartburn, diarrhea and cramping. I experienced these symptoms severely with/in the first week. They were so bad I thought I was in another flare. I felt better the moment I stopped taking the D and it didn't trigger a flare.

My doctor then had me take 5,000 IU/day for 3 months and then re-checked my levels. After doing that for 3 months and now being on 2,000 IU/per day, my levels are back up to normal.

Anyway, i just wanted to warn you all about those potential side-effects of taking the 50,000 IU of D. Good Luck. I hope it works better for you than it did for me.
l


Thank you so much AlisonR, I am so glad that you posted this. I am having some heart burn had no idea that that was possibly the Vitamin D. I will tell my doc to switch me.
Thanks again
07-01-2012, 08:07 AM   #19
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Were you all only told to take so much vitamin D because you have Crohn's and therefore have a hard time absorbing it? My vitamin D was at 14 when I was tested by my primary care and I was only told to take 1000 IU per day. I haven't been diagnosed with Crohn's because my GI is on the fence about it so I'm not sure if I am having difficulty absorbing the vitamins or not. I have been taking 2000 IU/day but I'm not sure if that would be enough to raise my levels after reading how much you all took to raise them. I know I should be retested to see how high it is now but I'm wondering if 2000 IU sounds like it would do the trick to you.
07-01-2012, 08:15 AM   #20
kiny
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@above

I don't take nowhere near those amounts, but I do go outside whenever there is sun. To absorb it the sun needs to be at a specific angle above 45° degrees to the horizon to avoid the atmospheric effect though, the closer you are to the equator the easier it is to absorb vitamin D since the sun is at a higher angle and it's not only closer to you, but it avoids the atmospheric effect. It also depends on your skin type, if you're white you don't need much sun to get vitamin D, if you're black you need more etc. Sunscreen blocks the ability to absorb vitamin D, but since the majority of vitamin D can be absorbed in the first 10 minutes of exposure, there isn't any real danger of going out in the sun if you're not on meds. It also avoids any negative effects on the liver by taking in excess of vitamin D orally, there is no liver damage possible by taking in vitamin D through your skin.
07-01-2012, 08:28 AM   #21
marjaw
 
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I had been taking smaller amounts of D and B12 as part of my regular suppliment regimen for years before I was diagnosed with Crohn's. I would not have questioned my levels on D or B12 if not for this forum. My primary did the testing, not my GI. I think my GI is more drugs oriented and my primary will look at the other things since the drugs are monitored by the GI. As for how much to take, you won't know until you try. They probably are starting out low until they see if that works. What really sucks about this disease is that everybody reacts differently so there is no one magic dose or drug combination. You just read a lot, gather information and try to find what works for you, and I think you will, it just takes time. Keep your chin up!
07-01-2012, 08:28 AM   #22
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I know I'm not absorbing very much from the sun because 1) New Hampshire is not quite close the equator. 2) I'm extremely pale and wear sunscreen to not burn into a lobster and 3) I work in an office all day so only get to be in the sun on weekends...if it's nice out.
07-01-2012, 08:34 AM   #23
kiny
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I know I'm not absorbing very much from the sun because 1) New Hampshire is not quite close the equator. 2) I'm extremely pale and wear sunscreen to not burn into a lobster and 3) I work in an office all day so only get to be in the sun on weekends...if it's nice out.
That sucks, you can get vitamin D before turning in a lobster though. Our body is specifically designed to absorb vitamin D at a rate that is faster than we can get negative effects from the sun. If you go outside just for 10 minutes, bearing in mind you expose enough skin, you should be able to get vitamin D. If the sun is at an angle greater than 45 degrees, a white person can absorb 25.000 UI within 10 minutes. The paler you are the faster you absorb.
07-01-2012, 08:38 AM   #24
marjaw
 
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Jessie
I know the feeling being from Wisconsin. Also, I've had so much PUVA for psoriasis that I am at extreme risk for skin cancer. I have to avoid sun exposure too.
07-01-2012, 08:39 AM   #25
David
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Were you all only told to take so much vitamin D because you have Crohn's and therefore have a hard time absorbing it? My vitamin D was at 14 when I was tested by my primary care and I was only told to take 1000 IU per day. I haven't been diagnosed with Crohn's because my GI is on the fence about it so I'm not sure if I am having difficulty absorbing the vitamins or not. I have been taking 2000 IU/day but I'm not sure if that would be enough to raise my levels after reading how much you all took to raise them. I know I should be retested to see how high it is now but I'm wondering if 2000 IU sounds like it would do the trick to you.
A big part of the problem is the RDA dose recommendations and tolerable upper intake are antiquated but many doctors still rely on that old, outdated information. In the end, it's about being monitored closely. In my opinion, every supplement out there is a medication and should be treated as such. If a doctor tells someone they should take 1000iu of vitamin D to raise their levels, then they should monitor that person's levels to make sure the dosage is sufficient. If it's not, then they can raise it based upon hard data. If it is sufficient, then great. I think for many people, 1000iu will be nowhere near enough to get levels to optimal ranges.
07-01-2012, 08:53 AM   #26
kiny
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here's a study about using a UV lamp (not saying anyone should do this, bc I have no clue if going in the sun is safe for people on immunosupressants)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/

"A UV lamp that emits ultraviolet radiation similar to sunlight and thus produces vitamin D3 in the skin is an excellent alternative for CF, and SBS patients who suffer from vitamin D deficiency due to fat malabsorption, especially during the winter months when natural sunlight is unable to produce vitamin D3 in the skin. This UV lamp is widely available for commercial home use and could potentially be prescribed to patients with CF or SBS."
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