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Vitamin B12

Location
Georgia
So here we go again. I went from weekly B12 shots initially to monthly and now I feel very fatigued and (surprise!) my latest blood work shows my B12 is too low again. So-o-o, I'm going back to weekly B12 shots for a month, and then monthly and recheck in 3 months.

Question -- for those who have to have them, how often are you getting B12 shots? I think I'm heading for a permanent weekly routine, but that seems awfully close together. I'm not sure what's happening to the B12 in my bloodstream.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Do you by chance smoke? I ask because I've read that smoking can reduce the body's ability to utilize B12 injections.

One factor that may determine how often you have to get B12 injections is how inflamed your ileum is. While the TERMINAL ileum absorbs most of the body's B12 you get through your diet, the ileum is involved in something called enterohepatic circulation. The liver stores most of the body's B12 which is then secreted into the gut via bile. Via enterohepatic circulation, the ileum then reabsorbes this bile and the B12 and uses it all over again. But if the ileum is inflamed from your Crohn's, then chances are you're losing a lot of the B12 as it's not being reabsorbed as efficiently as it should be.
 
When I was first diagnoised with Chrones they put me on the b12 shots once a month. After about a year my numbers where better and I have not had to get them for about 3 years now. Stay positive and I hope soon you can go back to monthly then none at all. good luck and Im here if u ever wanna talk.
 

DustyKat

Super Moderator
Sarah has B12 injections every 3 months due to having 70cm of terminal ileum/ileum removed.

Matt had the same op but with only 28cm removed so he is being monitored at present.

Have you had surgery? Are you in remission?

Also do you have Folate and Iron Stores levels checked as well?

Dusty. xxx
 
Can you guys tell me what low B12 is? Mine is 265 with the normal range 200-1100. We did the parietal cell antibody test and it was okay. Thank goodness! My grandmother had pernicious anemia, which I recently learned is an auto-immune.

I am so pale, and we can't figure out why. My CBC looks good, all except my platelets are high, and that happens whenever I have a flare. Not sure why, no one has ever commented on it. So, I told him about my gram and he wanted to test my B12.

He also mentioned that sometimes B12 is not as bio-available as the blood levels would indicate, so I am thinking maybe that is what enterohepatic circulation is, David? Or, perhaps like other things, you might carry around a level in your blood, but your body is unable to utilize it correctly. We found that my thyroid functions like that. I have normal blood levels, but I am low and have to take supplements.

It seems nothing is ever cut and dried like they try to act like it is.
 
Location
Georgia
Thanks all for your replies. I'm newly diagnosed this year with CD, probably have had it for 3 - 4 years or so. I'm not a smoker and no surgery yet. Still working through the initial steps of treatment, on Pentasa at present, will move to more aggressive meds if that doesn't work. Iron levels are being checked regularly along with B12 -- I was anemic until I began taking iron supplements. Beginning to get everything figured out so I can deal with it, but the B12 is still a little bit of a mystery to me.

Sunflower, your situation sounds frustrating but somewhat intriguing at the same time. Have you ever visited an endocrinologist? Might be worth a try.
 
I have vitamin B12 injections every 3 months. Saying that, I don't have any crohn's in my ileum at all so not sure why I need them.
 
Sunflower, your situation sounds frustrating but somewhat intriguing at the same time. Have you ever visited an endocrinologist? Might be worth a try.
Yes, I did several years ago. That is how I got diagnosed with the Thyroid problem. The had to do a "stimulation" test to see how I reacted to a certain chemical. I don't remember what it was now. Endocrinologists are not readily available around here, so I haven't been much since. I had one go over me thoroughly when I had a mystery disease, and I was pretty good except the thyroid and insulin resistance.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I get mine very 2 months - will be having bloods checked next remicade visit in Sept and will try to remember to get my levels/numbers to share! Lately I've been very tired/run down - but an putting that to just being super busy and not sleeping well...
 
Location
Georgia
My latest B12 level was 193, which isn't far from the minimum of 200. In April it was 161, but I followed that by having weekly B12 shots for a month, then monthly.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Trivia: In Japan, minimum B12 requirements have been raised from 200 pg/ml to 550 pg/ml.

By that definition, a significant majority of people in the USA are deficient.
 
B12

I've been getting B12 shots bi-weekly for a few years now. If I go even one day past the two weeks, it takes me days to recover. I start yawning and have horrible fatigue.
 
Hi David. In my opinion the US has a lot of levels too low. That is a big range, if you ask me. 200 - 1100. What does that mean?? I am too low, I think, and since I am pale and fatigued, I think my symptoms should count for something. But, I guess they have to draw the line somewhere, and I am above the line.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Sunflower, I think you bring up a very good point that symptoms should count for something. I think we (and our doctors) need to remember that these numbers are basic guidelines but everyone is going to be a little different and someone has to be the statistical outlier. If we have symptoms of Vitamin B12 deficiency (or anything else for that matter) but our results are close to the normal range, I think it would be prudent to discuss potential supplementation with our doctors as a test to see if it improves our symptoms if all other avenues have already been explored.
 
I have B12 injection every 3 months,i dont feel any worse near the end of the 3 months or any better after the injection !
I had 16" of my termunal iliuem removed.
 
Every month! feel tired if I don't. Hate them! Either my pharmacists has a 'heavy hand' or they just hurt. have a sore leg for approx 1/2 hour and as soon as the needle goes in the leg goes into a spasm.
 
I take 1cc every two weeks of B12. It seems to somewhat work. My Crohns (like many others) is in my terminal illium. I wonder how much of B12 is too much?
 
I had a foot of ileum removed my level is now 260 so was told I didn't need injections. Not sure what it was pre surgery but it can take years to become deficient. I was feeling tired so was taking OTC vit B12 super strength and I don't feel as tired. It could be all in my head though!!
 
Location
Georgia
I think David had an excellent point -- the B12 number is not as important as how we feel, and whether or not additional B12 will improve our energy and stamina. If so, go for it.

jbmann33 -- there is no toxicity level indicated for B12. I wouldn't want to push this issue too much by really overloading my system with B12, but apparently an "overdose" of B12 has no real significance -- we just excrete it.
 
I think David had an excellent point -- the B12 number is not as important as how we feel, and whether or not additional B12 will improve our energy and stamina. If so, go for it.

jbmann33 -- there is no toxicity level indicated for B12. I wouldn't want to push this issue too much by really overloading my system with B12, but apparently an "overdose" of B12 has no real significance -- we just excrete it.
Not only do we excrete the excess, but it is very difficult for the body to absorb. It is very hard to get "too" much B12 orally. The best way to get supplemented is by injection. The second option is to use the sublingual, or under the tongue supplements. The third, and least efficient option, is orally. Most "supplement" gurus tell you not to bother with taking it that way. You just don't absorb enough. Why? I don't know exactly. It is just that we absorb different vitamins in different ways.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Some more facts about Vitamin B12 (I've been doing a lot of reading lately ;) )

- If you're deficient, some doctors suggest MULTIPLE (I've seen up to a dozen mentioned) injections within the first few weeks to get the levels in the liver back up and then one every X weeks to maintain levels. I have read that it can take up to 20 injections to get back to full levels in the liver.

- In addition to the injections, sublingual, and oral supplementation, there are also patches you can wear and a nasal spray.

- Regarding the oral route for B12, I have read studies that say megadoses of B12 (1-2mg per day) taken orally can work even if you have pernicious anemia or issues with your ileum, but I haven't read anything about having an intact / healthy terminal ileum as a requirement and I just plain wouldn't be comfortable with that on a personal level based upon everything else I've read.
 
Cool, David, thanks! I didn't know about the patches and nasal spracy.

I should have put in my post that I don't recommend mega-dosing for anything. I am NOT an expert. Mega-doses of any vitamin can be harmful, sometimes in ways we can't always predict. For instance, my grandmother always gave herself mega-doses of Vitamin C when she didn't feel well. It is supposed to be a relatively save vitamin to mega-dose. However, the acidic form that she was taking caused her to have excess stomach acid and helped contribute to ulcers forming in her esophagus.
 
Location
Georgia
Being newly diagnosed this year, I'm still learning about Crohn's. I'm now quite comfortable in admitting to myself that I don't know a lot more than I do know, and there is a long learning curve ahead. One issue that has really surprised me is how many differences there are in the severity of Crohn's, some of the symptoms, and the effectiveness of medications. This forum has been invaluable to me in working through quite a number of personal issues on how I relate to this whole situation I now find myself in.

That said, the B12 issue is frustrating -- I understand that my SI is no longer efficient enough to be able to absorb/process B12 from my diet. So I've been taking B12 shots. First weekly, then monthly, now back to weekly. Not a big deal, but it does affect my energy level, and it's back and forth to the doctor. David, your comments about how many shots it might take to restore a normal level are interesting, and would explain the test results I had.

And, of course, life continues with its little practical jokes. My GI has now run out of B12 and it's on back order. So I started taking 1mg orally and it seems to be helping quite a bit. I could have gone to another doctor for a B12 shot, but I sort of welcomed the opportunity to solve this problem without utilizing a doctor.

Sublingual B12 interests me -- how/why would it be more effective than oral B12? Because it's being absorbed into the blood vessels under the tongue? I already have one prescription (Hyoscyamine) that is sublingual, and I know it's an effective way to absorb medication. But if B12 can be absorbed under the tongue, why not in the mouth, or in the esophagus, or in the stomach, or anywhere else? I remember reading about some sort of transport agent that is only produced in the SI that allows the B12 to enter the bloodstream.
 

David

Co-Founder
Staff member
Location
Naples, Florida
I hear what you're saying! I've only just begun to educate myself regarding IBD and it's eye opening. I have a stack of medical text books I've ordered that are glaring at, and intimidating me :D I don't think most people need to go that in depth and instead focus on trying to enjoy life and forgetting about the disease, but if I'm going to help run this forum, then I feel I do need to know what I'm talking about.

Regarding the sublingual B12. It is indeed absorbed directly into the bloodstream as there are a ton of capillaries under the tongue. Whereas oral B12 has to go through many more steps to be absorbed that require proper functioning of many different parts of the body. I *think* the "transporting agent" you're speaking of is Intrinsic Factor. The stomach releases intrinsic factor (which if it does a poor job of, you likely have Pernicious Anemia which is the most common cause of Vitamin B12 deficiency). In the duodenum, the intrinsic factor (IF) binds to the B12 forming complex B12-IF which is necessary because THAT is what the terminal ileum absorbs, not plain B12.
 
:thumright:
@David - I like the idea of at least one of us knowing what we're talking about. I already went through college for 6 years, so I my vote goes to you.
 
Location
Georgia
Thanks, David -- that makes a lot of sense. I have learned a lot about physiology and medicine in the last six months, and I'm very appreciative of your dedication and desire to help others.

Following is the summary of the Swedish study that convinced me to try a 1mg dose of oral B12. This is from the Journal of Internal Medicine.

"The concluded results of an experimental study are reported, confirming that the absorption of vitamin B12 takes place in two ways: 1. through the mediation of intrinsic factor; 2. without mediation of intrinsic factor.

The former mechanism allows a B12 absorption in normally IF-sensitive cases of pernicious anemia and in normal persons with an upper limit of about 2 μg. The latter mechanism allows an absorption of vitamin B12 which is roughly proportional to the oral dose administered, and amounts to about 1.2% of the dose, within a very wide dose range. Thus, it is possible to increase the uptake to any desired level. This direct uptake was found to be of the same magnitude, irrespective of whether the patient had a normal absorption, was suffering from pernicious anemia with or without resistance to intrinsic factor preparations, or had some other form of disturbed B12 absorption (idiopathic malabsorption, postoperative state after extensive gastric or intestinal resections, or ileitis). The result of a long-term clinical trial is also reported, in which a daily oral dose of 500–1000 μg of vitamin B12 without intrinsic factor was given to patients with pernicious anemia and other types of vitamin B12 deficiency. The material comprised 64 patients followed for up to more than 5 years. After the remission period very few serum B12 determinations showed borderline or subnormal values, and low levels were never of long duration. At the conclusion of the study the serum B12 values were well within the normal range in all cases. Also the individual mean values of the B12 determinations, made during the observation period from the second month of treatment, were normal in all cases. No neurological complications were observed. The blood values were normal in all but a few cases, in which concurrent diseases were present (malignancy, chronic infections, iron deficiency states). Experimental evidence obtained indicates that oral treatment with 500 μg of B12 daily has also resulted in replenishment of the B12 depots. The treatment with high oral doses of vitamin B12 thus constitutes a convenient and completely reliable maintenance therapy in pernicious anemia and other states of B12 deficiency, and is a fully acceptable alternative to the conventional method of vitamin B12 injections. This type of therapy (1000 μg B12 daily) was introduced into Sweden in 1964 and is now extensively used."
 
Interesting. I wonder why almost all of the other literature I have read states that for you to absorb B12, it must be sublingual. Interesting.

Either way, I have decided to place myself on B12 supplements. The pallor is just not going away and I know I must be low in B12. Even though I am above the cutoff, like you said, there are statistical outliers, and I have always been one of those. I suppose that the other B vitamins and folate would be a good bet, too.

Thanks for all of the stimulating conversation guys!
 
Location
Georgia
Go for it, Sunflower! The cost should be minimal and you should be able to tell if your B12 level was causing your symptoms. And if that is the problem, you still have the option of B12 injections. I switched to sublingual B12 tablets today, just to try them out, but I definitely have noticed an increase in my energy level after taking oral B12. My plan now is to continue either an oral or sublingual B12 supplement, and have my B12 level checked by my GI next month during my regular visit. If I can manage this on my own without frequent trips to the doctor's office for injections so much the better. One less part of Crohn's that is managing my life.
 
Persistance pays off sometimes! I wanted to let you guys know that i went today prepared to really fight to get B12 shots. I am still pale and fatigued, and besides the chance that I still may have some inflammation, I feel that I deserve to get B12 shots to up my levels. I think 265 with symptoms is too low.

Well, guess what?? The doc did too! He even thought that I was already on them. I told him the nurse said I was in the normal range so I didn't need them. So, he explained to me why I DID need them. Then he was like, "MY nurse said that??" And he didn't look to happy.

So, I am going to start them as soon as that nurse calls in the script to the pharmacy. She told me today that the pharmacy she uses is out of B12, so there was no use in showing me how to do the shots because it would likely be a while before they get any more, and all the pharmacies are out around here.

Mine's not. (she is weird and I don't like her, but I do like doc. I wold fire the nurse if i could. And to think, she has a dog with IBD)

And he listened to me about not being able to go to the bathroom, so I will most likely be doing another scope soon, or a barium swallow. (okay, not so excited about that part, but the listening is good)

Wow, this is a new thing for me to be listened to! I kind of like it!
 
You know I never understood why some doctors prescribe it like that. Cyanocobalamin (b12) has a half life of about a day.
 
Last edited:

David

Co-Founder
Staff member
Location
Naples, Florida
B12 is stored in the liver; in a healthy individual, up to 5 years worth of B12 is stored. And little is lost in that healthy individual because of enterohepatic circulation. Enter Crohn's and obviously all that can change.

In the end, duration between shots should be dependent upon the individual. Some people need none, some people need monthly, some may need weekly as you mention, to replenish their liver stores.

Doctors should be regularly testing patients' serum B12 AND homocysteine and methylmalonic acid levels to understand what is "normal" for that particular patient then ensuring that through either diet and/or supplementation, the patient never comes close to being deficient.
 
Location
Georgia
It Worked!

Went back to see my GI Dr on a routine follow up, and had him test my B12 level. I've been taking 1,000mg of B12 over the counter every day since early August, and my B12 count is now 492. And -- my energy level is consistently high.

I initially tried sublingual B12 tablets, but one of the ingredients didn't agree with me, so I went with two regular 500mg tablets once a day.

Looks like the Swedish study (see my 8/4/11 post above) was right on the money. No more shots for me -- at least this is one small part of my CD that I can control.
 

David

Co-Founder
Staff member
Location
Naples, Florida
That's fantastic Tom, good for you :) Out of curiosity, what ingredient didn't agree with you on the sublingual tabs?

Thanks for the update!
 
Location
Georgia
Not sure what didn't agree with me. I'm finding out that I have some real sensitivities to certain preservatives and additives, and I'm spending a lot of time trying to identify them. But there are so many chemicals in foods and OTC drugs today that it's difficult to do.

I do have potassium sorbate identified as a problem for me. It's a very commonly used preservative in salad dressings, sauces, ready to spread frostings, etc.

I just haven't had the time to dig into the ingredients in the sublingual B12 tablets, but at some point in the future I'm going to post a new thread on this topic, hopefully with some info others can use.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Thank you.

And I agree that INGREDIENTS are what we need to be looking at these days. "I can't eat yogurt" may be true when there are 33 ingredients I can't pronounce. "I can't eat yogurt" may not be true when it's organic, plain yogurt.

I need to figure out a way this site can help people no so much with a good journal, but an ingredient journal. Or just educate them to stay away from the science experiment foods.
 
Location
Georgia
Great idea -- I would be glad to help. Maybe a thread on chemicals/additives we can't handle? There is a lot of weird stuff going on in the food and pharmaceutical industries.

Another example was the evening I had a great meal with my wife, who had cooked stuffed chicken breasts she bought from a local store. Then it was off to the bathroom for me for awhile. After reviewing the ingredients, I found they included disodium phosphate, which is used in foods to shorten cooking time. That's OK, but it's also used as a colonoscopy prep, and that is apparently what cleaned me out. Here's a link -- http://www.livestrong.com/article/440956-what-is-disodium-phosphate-used-for/

With all of the other issues I have with my CD, I don't need the side effects I'm getting from some foods and OTC drugs. I'm slowly drifting toward all natural, preservative-free foods.
 
Location
Georgia
Just caught your second post. I'll bet it was the mannitol. Per Wikipedia, it's sometimes used as a laxative for children. Good grief.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Thanks for the offer to help Tom :)
I'm slowly drifting toward all natural, preservative-free foods.
I think this is the key right here. I have little doubt that in the not too distant future people will look back in horror at what we've been eating.
 
I've been using the B12 nasal spray. My doc gave me the choice of shots or nasal spray. It's called Nascobal. Just one squirt in one nostril once a week. I recently discontinued the spray because my recent test showed my B12 is now too high! I recommend it if you can get it!
 
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