Have you been tested for Vitamin B12 Deficiency?

Have you been tested for Vitamin B12 deficiency? If so, were you deficient?

This is before I had surgery. Does "slightly low" count as deficient? I had to specifically request the testing. My doc told me to take B12 vitamins.

After surgery I brought it up again and he brushed me off again. I will be interested to see what my blood tests show in a month (I will request the B12 test again).

Sarah was tested post op and was deficient. She is on 3 monthly B12 injections for life.

Matt is being monitored at present. He is on monthly bloods and it is tested each time. He is not deficient.

Dusty.

diesanduhr said:

This is before I had surgery. Does "slightly low" count as deficient? I had to specifically request the testing. My doc told me to take B12 vitamins.

After surgery I brought it up again and he brushed me off again. I will be interested to see what my blood tests show in a month (I will request the B12 test again).

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I would count it as deficient, especially by Japanese standards which are about double the rest of the world after they raised it. Don't let your doctor brush you off, we're seeing a lot of people around here who are deficient and feel a lot better after taking proper supplementation.

In addition, as the liver can store years worth of Vitamin B12 (if your enterhepatic circulation is working properly) Vitamin B12 deficiency can sneak up on you after initially being tested and showing normal numbers.

I had 1 ft of TI removed and am so far not deficient at 260. Don't know what it was pre surgery though and I occasionally take OTC vit B12 suppliments!!

I considered it deficient, but I wasn't sure for the purposes of your poll. I am not really sure what to hope for at the next test. I'd like the security of being on B12 shots, but it would also be nice to test with healthy levels and not have to worry about it! We'll see what he says.

I regularly give blood and am tested for B12. Sometimes I am deficient, other times not. I do notice that when I am short on the B12 my hands have the pins and needles feeling. That's usually when I forget to take the supplements for a few days.

riversilt said:

I regularly give blood and am tested for B12. Sometimes I am deficient, other times not. I do notice that when I am short on the B12 my hands have the pins and needles feeling. That's usually when I forget to take the supplements for a few days.

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Are you just taking oral supplements? If so, have you thought about getting some injections as a loading dose so you aren't borderline and going back and forth between deficient and not deficient?

Yes, I am taking oral supplements. I am not deficient that often, so for they work for convenience. I did take injections for a little while, that was several years ago. I would forget to go in. I am my own worst enemy that way. I will need to convince my doctor, I'll have to bring it up when I see him again. He is not a big fan of more needles.

Currently not taking oral B12 tablets but being monitored to see how it goes. Stopped taking then in June.

I have been tested a few times in the past 18 months and although they stopped the tabs before, it dropped down again, so was put back on them. Worth noting that the crohns was not really under control when they took me of them previously, so hopefully should be ok this time as long as in remission.

Toby

Yep, since having two resections it was inevitable...been getting monthly shots for a year now. It is very crucial to get this checked out. I has been said if you take oral the subliminal ones (under the tongue) and http://en.wikipedia.org/wiki/Cyanocobalamin
are the best, most absorbable.

I'm pre-op and have had numerous blood tests, deficient so now on 3monthly jabs for B12 ongoing. Sometimes after being on the jabs a while you build higher levels because the drop inbetween jabs is not long enough for the levels to return to bottom. That means you could have a blood test, it suggests levels are ok and they suggest stopping. Don't let them do this, it'll only be weeks before that Jab you never had you wish you had.

All the best,

I was tested April this year was was deficient, but my GI brushed it off. I was taking supplements at the time (liquid) trying to get more energy because I was tired all the time. A couple weeks ago I explained this to my new GP and she retested me, saying if it was still low she was putting me on injections. It was, but over the phone she decided to put me on tablets instead. I'm still wondering why, since I told her I was on B12 supplements before when I tested low. She wants to wait three months before testing me again, and if it is low THEN she will put me on injections. Does this make sense to anyone? I kind of wish they would just put me on injections now. >.<

What were your levels at for each test?

What dosage tablets do they have you on and what were you taking before?

They never told me the exact levels, just said at both they were low, but very close to the lowest normal amounts.

In April I was taking Sublingual liquid, one dropper a day. One dropper had 2500mcg.

My Dr put me back on Sublingual, but tablets, and asked me to get 1000mcg. I couldn't find anything lower than 2500mcg in the short time I had to find the supplement, so I am on that.

Bummer, I wish you had the levels.

That you've remained low is kind of interesting especially since they haven't found inflammation in you if memory serves. You're not a vegan, right? Are you on oral contraceptives? I've read that can screw with B12. My mind wants me to throw out the idea of pernicious anemia but the supplementation should bypass that. 'Tis weird.

Sorry I'm no help

Yeah, it is weird. I am on oral contraceptives, but I have been on them for years, and my B12 only started to become low in April. I'm not a vegan either. They think right now it might be another autoimmune illness (lupus specifically) that might be causing my issues, and there is a correlation between low B12 and lupus as well. I'm basically taking a break from IBD tests and exhausting all other routes in the meantime to make sure I'm not missing anything!

You were help, thanks for the input.

Double checking, the connection between oral contraceptives and B12 is conflicting so I'm not comfortable saying anything definitive there. However, that you have been on it for years would actually make it more likely that you'd be affected if there is indeed a connection. B12 is stored in the liver: up to 5 years worth. So you could slowly be using the ATM and you wouldn't experience any detrimental symptoms while you had money in the bank. But once you're broke, the overdraft fees sure suck.

Thanks so much for this info!

I found this online today as well, from the book "Common Chronic Illnesses and their Treatments":

"This essential B12 vitamin is absorbed by the body from foods, through the digestive system via intrinsic factor, which is a protein that allows for this absorption process to take place. In some people, especially those who have autoimmune diseases, the body will begin to create "antibodies" (killer cells from the immune system), directed against intrinsic factor. Over time, these antibodies begin to destroy this substance and the body will eventually have inadequate amounts available for absorbing vitamin B12 from the diet.

People who already have disorders - such as autoimmune thyroid disease, celiac disease, Crohn's disease, Addison's disease, lupus, rheumatoid arthritis and other autoimmune disorders - are at higher risk for developing pernicious anemia."

Multiple times.

I am tested every time I go to the hospital for a check up. I have gotten a few shots of B12 because of iron defficiency.

Mine was interesting - I was deficient after my first resection - had another 3 since then. My remaining bowel has compensated and can now absorb all on its own. I still take at least 1000 mcg per day, though.

shamrock15 said:

Mine was interesting - I was deficient after my first resection - had another 3 since then. My remaining bowel has compensated and can now absorb all on its own. I still take at least 1000 mcg per day, though.

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Interesting! What makes you feel your bowel has compensated and is absorbing in areas other than the terminal ileum?

I am B12 deficient but like Allie my results are normal and I've been told I have IBS. I take 1000mg and no oral contraceptives.

yes but after 5 years of crohn's!

So I was diagnosed in 2001. The first time I had a B-12 test was in 2006. The level was about 200, maybe a little less. So since then I've gotten a monthly shot and it's consistently up at about 750 to 800. I give the shots to myself but it used to be that I had to visit the doctor's office. It's about $7 a month to do it myself. It's about $160 to go in and get it done. Absurd.

Also I notice that Whole Foods carries a sublingual B-12 pill. I haven't tried it yet cause it looks like it's more expensive than my once a month shot.

Oh, and also I was diagnosed with depression in 2005 and 2006. I didn't really have depression I just needed a B12 shot. No depression meds since I got the injections!

My doctors told me that I could now absorb B12. Had the same issue with water absorption and several other nutrients. My surgeon said that the inside of my bowel has increased its surface area and has regained some of these abilities (same surgeon has done all 6 of my surgeries - he knows my bowels!)

Be Alert To B-12 Deficiency

I had surgery to remove a obstruction caused from a Crohn's Disease attack several years ago. Right after the surgery I was told by my doctor, that the section of my ileum and intestines that were removed was the part that absorbed B-12. He went on to say that I would have to have B-12 shots monthly for the rest of my life. I have not been able to prove him wrong once in the last 30 years since I had the surgery. When I tried to pass on the shots, my energy level dropped off the charts and I could not function. If you are in doult, blood tests will quickly indicate a deficiency. Getting the shots regularly is a small price to pay for your improved overall health. I can't imagine where I'd have been without them. Thanks,
Jim

2 years ago I saw my GP as I was losing my balance when out walking slowly with my dog. She ( the GP not the dog!) did blood tests and told me I had a B12 deficiency and put me on 3 monthly injections.
To be honest I`ve never really felt any change in myself ( apart from not losing my balance!) with these injections, but the 6 months ago was diagnosed with Crohns Disease of the terminal ileum, which I now learn is connected to B12 deficiency.
My question is - should I feel any great reaction to the b12 injections other than now being able to walk in a straight line!?
Thanks
Saul

I am not on injections for my B12 deficiency, but I do feel a difference between being B12 deficient and having good B12 levels. I take a 2500mcg sublingual tablet once a day, where the B12 is absorbed underneath your tongue. They had me try that before they put me on the injections, and it worked well enough to keep doing it. When I forget to take them for a few days, my chronic fatigue gets worse, my vision and balance get worse (dizzyness), and overall I don't feel as well. A lot of people take B12 purely to have more energy instead of caffeine...my husband takes one every morning to start his day.

saul said:

My question is - should I feel any great reaction to the b12 injections other than now being able to walk in a straight line!?

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Everyone is different. But that your gait was affected tells me you had a pretty severe, chronic case. If you didn't have other symptoms, count yourself lucky and make sure you keep those levels up from now on

allieinwonder said:

I am not on injections for my B12 deficiency, but I do feel a difference between being B12 deficient and having good B12 levels. I take a 2500mcg sublingual tablet once a day, where the B12 is absorbed underneath your tongue. They had me try that before they put me on the injections, and it worked well enough to keep doing it. When I forget to take them for a few days, my chronic fatigue gets worse, my vision and balance get worse (dizzyness), and overall I don't feel as well. A lot of people take B12 purely to have more energy instead of caffeine...my husband takes one every morning to start his day.

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Stories like yours concern me a lot You should NEVER get to the point that you're experiencing any sort of symptoms of deficiency, especially after only missing a couple oral doses. That tells me you're getting nowhere near enough B12. The body can store up to 5 years worth of B12 and you have only enough for a couple days, if that. It's more likely that you're technically deficient and your body is high in [wiki]methylmalonic acid[/wiki] and [wiki]homocysteine[/wiki] and I'm worried one day that's going to catch up to you. You want more than enough in the bank, not so little that you're regularly over drafting. This is the problem with high oral doses if the deficiency isn't dietary related; it's very difficult to get above to optimal levels since only 1-2% of it is absorbed.

saul - I feel like I have a little more energy after getting my shot.

David said:

Stories like yours concern me a lot You should NEVER get to the point that you're experiencing any sort of symptoms of deficiency, especially after only missing a couple oral doses. That tells me you're getting nowhere near enough B12. The body can store up to 5 years worth of B12 and you have only enough for a couple days, if that. It's more likely that you're technically deficient and your body is high in [wiki]methylmalonic acid[/wiki] and [wiki]homocysteine[/wiki] and I'm worried one day that's going to catch up to you. You want more than enough in the bank, not so little that you're regularly over drafting. This is the problem with high oral doses if the deficiency isn't dietary related; it's very difficult to get above to optimal levels since only 1-2% of it is absorbed.

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Huh, I never knew that David! My doctors were never concerned with it, even when my B12 levels were dangerously low. My inflammation is still not being controlled very well, so that's probably a factor since some of those symptoms overlap with my illness symptoms. I'll have to talk to my rheumy or GP and see if they have any suggestions on how to keep this more steady than it is now.

B12 deficiency is a huge concern as it can lead to a myriad of problems. If/when your doctor says, "you're within the normal range" as they point to your B12 being somewhere between 200 and 400pg/ml be sure to hand them a printout of this paper which showcases around 50% of people with levels between 200 and 400pg/ml are in fact deficient. If you like to be dramatic, then flip a coin

I check for it in every set of blood work but it's always fine. The iron is always on the low end.

thanks everyone for that info.

I had a series of blood work done in February and my B12 is at 1403. I take a b complex vitamin daily.

Yes I have been tested and I wasn't "deficient" but I was low enough to feel the effects of a deficiency. After trying a few different supplements in different forms and it still not affecting my levels we started doing shots and my levels are well above average now.

I'm supposedly not low, my last result was 147 and the low bar was 145 - so I was close to being low but not close enough for the docs to say I am low.

Aura said:

I'm supposedly not low, my last result was 147 and the low bar was 145 - so I was close to being low but not close enough for the docs to say I am low.

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You're almost assuredly deficient. If they're not willing to supplement based upon that number, make them test your methylmalonic acid and homocysteine levels. I will just about guarantee they're raised. That you're 2 points above the low end of the reference range and they didn't test those levels or supplement you tells me your doctors don't understand vitamin b12. Please take this into your own hands as B12 deficiency is very bad news. Please print out this paper and take it to your doctors.

Thanks for this David, I did ask my GI about my level being at 147 and he said it was probably due to my crohns, but did not say anything else to me. I am shifting to a new city, and new gastro and gp on Friday. I will certainly take a copy of this article to my GP. I know my doc already as I used to be his patient many years ago, and he is very good at listening and responding to me. I am certain he will arrange those tests for me. My current crohns flare is in my jejunum and 2/3 in my small bowel - I have 9 large uclers some fissuring, so this could impact on my ability to absorb b12, eh?

Thanks again

In my opinion EVERYONE and I literally mean everyone who has been diagnosed with Crohn's Disease should be tested for vitamin B12 deficiency and somewhat regularly at that. Even those without active disease in the terminal ileum. Now, the terminal ileum is where vitamin B12 is actually absorbed (by something called cubam receptors) however, the process by which B12 goes from your food to being successfully absorbed is an incredibly intricate process. It begins in your mouth when haptocorrin is secreted. That binds with the B12 in the stomach once sufficient amounts of hydrochloric acid and pepsin separate the B12 from the protein it is bound by. Cells in your stomach also release something called intrinsic factor which binds to the B12 in the duodenum AFTER pancreatic enzymes separate the B12 from haptocorrin. That B12-IF bond is what is then absorbed in the terminal ileum. Once B12 is in the system alot of it is usually recycled by something called enterohepatic circulation but chronic diarrhea and/or poor absorption of bile salts screw that up. As Crohn's Disease can affect the entire digestive system from the mouth to the anus AND common medicines also interact with this process, deficiency is all too common. If just one step is that process is messed up, you'll end up deficient in time. So yes, your current situation could absolutely lead to deficiency.

If I was advocating for someone I would want them to be tested every 6 months so we could track their levels over time to see if they're declining, improving, or staying the same. The body can store up to 5 years worth of B12 in the liver so you might not be deficient now but in 6 months you've withdrawn enough from the bank that you are. And B12 deficiency isn't something to be trifled with. It's not an expensive or difficult test, so why we see so many not properly being evaluated is beyond me. Of course, even when people ARE properly evaluated doctors are using the archaic reference ranges which are just plain wrong. It's very frustrating.

Best to get on top of this then asap, and get it managed - Thanks David

I had surgery to remove almost all of my ileum 15 years ago. About 2 years ago, I felt tingling in my feet and legs (turned out to be peripheral neuropathy), often caused by B-12 deficiency. My internist check out my blood levels, and I was way below the safe level. I began receiving b-12 injections weekly to get it built up in my system again. Now, I have been taught to self-inject, which I do monthly (forever). The cost differential between self-injection and getting one at the doctor's office is about $38 per month, plus the convenience of taking care of business in your own home.:ycool:

Also keep in mind many stomach medications and diabetes meds can also cause vitamin b12 issues. I found out that the Dexilant for acid reflux can cause low b12. As well as the Crohns. I am taking 2000mg a day. Because I don't have typical, flares right now it's been in check.

However, it may not later on, as I keep getting more ulcers in my colon area. The colon stores b12, so it can be compromised. Eventually, I might have to get vitamin injections..Joy.

Lisa,

I wasn't familiar with the colon storing vitamin B12, just the liver. Do you have a source for that? Thanks!

Also one new fad is to check everyone's vitamin D levels out here in North eastern United States. Many people along with me, have been low in that as well. I was really sick with those levels, I couldn't even move because b12 is needed for muscles and tissues, I believe. They thought I had MS. I can't tell you all of the testing I have had over the years to find out what is wrong with me.

Although, the biopsy came back positive for Crohns, I am not sure that is the while entire problem.

Is this forum based out of Australia?

The server the forum is on is located in the United States but we're an international forum with people from all over the world In fact, in the last 30 days, we have had visitors from 170 countries.

My first gastro Dr. told me that. He wasn't sure I had Crohn's either because I run more constipated.

But he said " I have a feeling you do have it, because your vitamin b12 levels are so low, and the colon stores/deals with b12."

Ah. I'm afraid he was mistaken. The liver stores B12 and 98-99% of B12 is absorbed in the terminal ileum, the last part of the small intestines just before the colon.

I was tested for anemia, and the B12 deficiency was shown then. Monthly shots for the past 14-5 months or so.

oh, no your right... liver STORES b12....THE BILE HELPS transfer the b12 to the intestines to absorb, then transfer via blood to muscles... tissues etc... which still sucks for us... cause crohns can be in colon and small intestine for some people creating the problem. I also just saw that malabsorption can cause anemia. Which I also had a couple of years ago. I think it said 60% is stored in liver and 30 in muscles... no wonder I couldn't move.

These writers are discussing different types of B12... one method is dissolving tablet under the tongue. Other injection. They claim pills can be sufficient. But they call them unbound....
http://www.veganhealth.org/b12/dig

Lisaj said:

THE BILE HELPS transfer the b12 to the intestines to absorb, then transfer via blood to muscles... tissues etc...

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Please don't take any offense in me correcting you but this isn't quite right either (PLEASE correct me anytime I make a mistake as all I care about is people here getting correct information )

I explained how dietary B12 goes from food to being absorbed in this post above.

Right and my ulcer was in the ileum... so I don't know why he said stored... very strange..
But I don't to him anymore. The gastro drs that I have been going to, don't seem to want to deal with the whole picture= joints aches, skin blisters...fistulas. All the other specialists in my life know Crohn's causes all those things.

My rheumatologist is a god send... so far.

b12

I used to get b12 injections when I was first diagnosed with Chrones over 5 years ago. Now i do not have to get the b12. So there is life after b12 defiency!! good luck:rosette1:

It is also my understanding that the liver stores B-12. Often, it is stored for 10 years before depleting itself. After my terminal ileum was mostly removed, it was right around 10 years when I started feeling tingling in my legs and feet. My internist did blood work and I was well below the 200 level David cites in this thread. B-12 is absorbed into the blood stream from the terminal ileum, as David has posted, and when it's gone, the other options beside injections are nasal inhalers, etc. But my understanding is that doing so is a daily task and that the concentrated amounts required aren't as great as a injection.

How many of you are giving yourselves b12 shots? I'm always told to come in to the office, but would prefer to do it myself.

Is there a B12 test that is superior to any others? I have an order for B12 testing and it says Cyanocobalamin. Aren't there other forms of B12? What about methylcobalamin?

Cyanocobalmin is turned into 5-deoxyadenosyl and methylcobalamin in the body. There's another test coming on line that tests for Holotranscobalamin (active B12) but I don't know how widely used it is yet.

In the end, the best way to test for B12 deficiency is [wiki]methylmalonic acid[/wiki] levels. But it's more expensive and not as widely available.

I PERSONALLY just get my normal serum B12 tested. If I ever fall below 500pg/ml then I will change my diet (Crohnies should supplement in my opinion) and retest in a month. If you REALLY want to know if you're deficient and have a level of less than 400pg/ml then get the methylmalonic acid level test.