Vitamin B12 levels

[nogutsnoglory]

I was told I will need b12 shots because too much intestine was removed? I want to get a blood test before though to see if my levels drop too low and maybe I am absorbing some.

How long does it take for b12 vitamins to drop for an accurate reflection in the blood test?

 

[tiloah]

Your body has a reserve of B12. It can take over a year before your levels will accurately reflect a deficiency. That said, it is probably worthwhile to test for it. David will probably disagree with me (I say that lovingly!), but some people are still able to absorb B12 post surgery.

 

[David]

What part of your intestine was removed and how much? B12 is absorbed in the terminal ileum.

As Nic mentioned, the liver is a store of vitamin B12. It can actually store up to five years worth in a healthy individual! So it could take quite awhile for a deficiency to show up, but there are many variables that come into play. Nic is also correct that you'll still be able to absorb B12 post surgery even if your TI was completely removed as up to 1% of high dose B12 can be absorbed via other means. However, this 1% is nowhere enough to maintain or add to your B12 levels and you'll be continually withdrawing from the bank.

In the end, you should have your B12 levels checked regularly and supplement to maintain at LEAST a level of 500. Most doctors will say levels less than that are sufficient but myself and many others such as the Pernicious Anemia Society disagree.

 

[nogutsnoglory]

I had a foot of small intestine removed and a foot of colon removed. Ileocectomy

 

[David]

Yep, your B12 absorption will be affected. How much is hard to say as everyone is different. Just get your levels tested and keep track. Supplement via injections as much as necessary to maintain a minimum level of 500 or if you want to go by what the Pernicious Anemia Society recommends, 1000 should be your goal.

Here's a good thread for you to read.

 

[nogutsnoglory]

I'm thinking of taking a tablet for supplementation now and checking later to see If I need the injection. Thanks for both of your help and knowledge.

 

[peleburrows]

My nutritionist recommends taking a B12 lozenge to maintain levels as having a course of injections repeatedly effects the nervous system as well as other things.

 

[David]

I've never heard that before. Can your nutritionist back that up with any reputable sources or studies? Thanks.

And it's unlikely many here will be able to increase B12 levels, much less maintain, with a lozenge since this isn't a dietary related deficiency for people with CD.

 

[Roxymusic]

Shots

My wife has been giving me b12 shots for the last 10 years. Before that it was a nurse. It is because I have neurapathy. But they have all been in the butt cheeks for over 20 years and I suspect I wouldn't mind some Neurapathy in the butt after a long motorcycle ride.


My b12 level was measured yesterday with the tb bubble I get my monthly b12 shot today so soon I can post the real numbers next week.

Wife brought some sublingual b12 in a dropper that you stick under the tongue, I rather doubt it will help me but I will keep trying.

For me, the enegy level bottoms and my toes and fingers go numb each month before the shot is due.

 

[pjmel]

I get regular B12 shots. The last blood tests I got showed that my levels were still within normal range (not sure what the normal range is) but at the lower end of the range. My GP didn't want me to get the injection as my levels were ok, but I knew that I needed it - was tired (more than usual), and very dizzy. Got the injection and the tiredness has improved a little and the dizziness is gone.

 

[Jobell]

I was told to get B12 shots every month after my resection, and I try to do it. If i forget for a couple of months, i get tired, cranky, depressed...
But i never heard of any drawbacks to the injections, so I am a little concerned about Peleburrow's suggestion that repeated injections can effect the nervous system... anything reputable to document that risk? did the nutritionist say why she thinks so?
the shots seemed such a simple fix!

 

[David]

But i never heard of any drawbacks to the injections, so I am a little concerned about Peleburrow's suggestion that repeated injections can effect the nervous system...

There's nothing to worry about. I researched it and could find nothing, as expected. One could possibly make an argument about fight or flight being caused by injections and the subsequent release or epinephrine, norepinephrine, and cortisol on the nervous system, but that would be a pretty weak argument I would dismiss quickly. But if reputable sources can be provided, I'll certainly keep an open mind.

Not getting enough B12 because you don't take injections and take sublinguals instead and the subsequent peripheral neuropathy you experience because of it is orders of magnitude higher risk for your nervous system.

 

[DustyKat]

Side effects of long term B12 injections do include issues related to the nervous system as well as the liver, kidneys and on it goes, but they are not listed amongst the less serious side effects or even the serious common side effects. It would also be prudent to mention that many of these long term side effects are due to excessive amounts of B12 in the body. I'm not sure that for many sufferers of pernicious anaemia (B12 deficiency) that excessive amounts of B12 would actually arise as an issue.

Dusty.

 

[PsychoJane]

Am I the only one that has never been told to take b12 supps or even been checked for B12?

 

[DustyKat]

No! Unfortunately too many members here haven't been supplemented or tested.

I don't think it hurts to have your levels checked no matter where your Crohn's is located but it is essential to have it done and done regularly if you have Crohn's in your terminal ileum (TI) and/or the TI has been resected. The terminal ileum is the only area of the intestine that B12 is absorbed.

Dusty.

 

[archie]

I've had a resection and 6 months ago my levels were 260, the doc said that was fine so I wasn't given any supplements (although David would agree this is still low). I started taking 1000ng daily and last time I got checked it was 860. I have since stopped taking it for about a month and I still feel fine although I have noticed I'm a bit dizzy on occasions and it usually doesn't last long. I'm going to get all my bloods checked soon as the doc wants to establish my normal results for inflammatory markers as I feel good at the mo so it will be interesting to see if the b12 has dropped again. I will def take the supplements if it has. I will keep u posted but it was interesting to read about the dizziness and b12 relationship (I was scared I might have been pregnant again!!!!!!!!)

 

[nogutsnoglory]

Roxymusic what is a tb bubble?

I also get dizzy but don't think it's lack of b12 I take 325mg of iron and feel better. Iron supplementation can be dangerous though.

 

[Roxymusic]

Tb bubble

Tb test as a precursor to remicade. That's why I had the b12 checked since I was having labs bloodwork anyway. They inject a little "bubble" under the skin and if you get a reaction you might not get the treatments due to tb risks

Two, three days after a b12 inj. I have a lot more energy. I do not believe it to be a placebo effect.

 

[David]

Side effects of long term B12 injections do include issues related to the nervous system as well as the liver, kidneys and on it goes, but they are not listed amongst the less serious side effects or even the serious common side effects. It would also be prudent to mention that many of these long term side effects are due to excessive amounts of B12 in the body.

Dusty, could you please source this? I haven't been able to find anything stating as much.

 

[bjeffrey]

As I understand, the intrinsic factor plays an important part in maintaining and absorbing B-12 and many other vitamins. The Ileum absorbs the B vitamins, without it the absorption is low.

I do a B-12 shot every two weeks to maintain a level of 500+. I agree with David, most doctors will let you go to a level of 200 before they will treat. Euro-Asian doctors treat people with B-12 levels below 500 while in the US it's not until you hit under 200. Before I woke up to this knowledge my B-12 level was 122 and told not too worry. I 'convinced' my primary care to prescribe me B-12 which he did...

I just finished a few weeks back, 5 IV Iron Infusions (venofer). My Iron count looked ok, although my Iron Saturation was 14%, causing me severe fatigue. So for the 2nd time in 2011, I received Iron Infusions. In the end, my fatigue, tingling, numbness and digestion got back to NORM.

As a person with chronic Crohn's, I can attest that vitamin and mineral deficiencies exist in us. And, most times, it is up to US to ask to be tested and treated, regardless of mainstream data.

Just cause we eat nutritious foods does not imply we absorb anything!

best wishes.

 

[PsychoJane]

The more I look, the more I find articles that stipulates that it can be a problem for kidneys in certain situation:
http://www.robarts.ca/vitamin-b-dangerous-diabetics-kidney-disease

It seems B12 supplement should always be under close medical monitoring as it can be problematic if the body has a condition that can't allow the proper secretion of the excess. Anyway, I guess that no one can get B12 injections without a prescription?

http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12/DSECTION=safety
Of conditions to consider, it is not oriented towards majority obviously but should still be considered.

These seems to be exceptional situations though. Those that has such type of condition should be more cautious but it usually seems to be not much of a concern.

 

[Roxymusic]

What a great quote!

"Just because we eat nutritious foods does not imply we absorb anything! "

But the placebo effect of telling yourself that food is good for you can be pretty big for some people.

B12 injections really work for me but I'd do more of an empirical check instead of "man the tingling is done each time."

I never asked the dr what it actually was except he would say it is ok. David here started me down that path - you pretty much sealed the deal to begin managing numbers.

 

[David]

Thank you for sharing those links PsychoJane. I'll add some of the pertinent information to our vitamin and mineral deficiencies database today.

The more I look, the more I find articles that stipulates that it can be a problem for kidneys in certain situation:
http://www.robarts.ca/vitamin-b-dangerous-diabetics-kidney-disease

That one is for three different B vitamins (6, 9, and 12) all of which are water soluble. If someone is already having significant kidney issues, it makes sense that giving them high doses of water soluble vitamins isn't going to go over well as excess won't be properly secreted as you mention.

http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12/DSECTION=safety
Of conditions to consider, it is not oriented towards majority obviously but should still be considered.

These seems to be exceptional situations though. Those that has such type of condition should be more cautious but it usually seems to be not much of a concern.

The Linus Pauling institute at Oregon State is absolutely amazing for vitamin and mineral information. They state,

Because of the low toxicity of vitamin B12, no tolerable upper intake level (UL) was set by the Food and Nutrition Board in 1998 when the RDA was revised.

Everything in the Mayo Clinic is "caution is advised" and as you mention, they are all exceptional situations. I agree 100% with you that anyone with Crohn's Disease should be closely monitored by their health care provider as they supplement, in large part to make sure they are getting adequate intake to maintain healthy levels.

There are always going to be exceptional situations for anything and it's good to share that info, but with the prevalence of B12 deficiency in people with Crohn's Disease and the certainty of negative affects if you are deficient, I feel strongly that we need to be very clear that these potentialities for negative effect are under extraordinary circumstances so as to not scare anyone from getting their levels tested and taking this absolutely vital supplement if they need it.

As always, if quality data is presented that forces a change in my views, I will do exactly that and update our deficiencies database. New information is always very welcome

 

[bjeffrey]

Placebo effect? It's my friggin life and I don't RISK my life on a fantasy!

 

[laweeks]

As an alternate to the B12 shots (I wasn't doing them routinely) my doctor switched me to Nascobal. It's a nose spray that you use on a weekly basis. My levels just got checked so hopefully it will work out,. I like it a lot better than the shots!

 

[DustyKat]

I'm sorry David, my previous post was poorly worded. What I mean't to impart was the side effects suggested do exist but are rare and generally arise as a result of co morbidities or in those people that that with liver, renal disease etc, rather than those that are administering B12 for deficiencies due to Crohn's. I will list a couple of easily obtained websites but unfortunately I made a general statement, that was my opinion, based on what I have read over time from accessing drug databases normally reserved for medical professionals...

http://www.drugs.com/mtm/vitamin-b12-injection.html

http://www.drugs.com/sfx/vitamin-b-12-side-effects.html

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605007.html

I think what needs to be stressed is Pernicious anaemia is caused by a B12 deficiency regardless of how that deficiency occurs within the body. Pernicious anaemia, by it's very definition, was in the past very often fatal and it is only through education, science and research that this is no longer the case, as are many other aspects of IBD, most notably, perforation, obstruction and infection. These complications caused fatalities and still do, although rarely, to this day.

The following is a link to a study on B12 absorption in children suffering with Necrotizing Enterocolitis...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1628616/pdf/archdisch00731-0039.pdf

...it is interesting to note that they were unable to determine at what point, that is the amount of bowel resected, that B12 deficiency may become problematic as it is highly individual. With this in mind it would most likely be beneficial for those with terminal ileum Crohn's, with or without resection, to have regular testing done to determine their B12 levels.

Dusty.

 

[handle]

In this study they concluded that resection of T.I less than 20cm did not effect B12 absorption. Not a huge sample size, but hopefully indicative.

http://www.ncbi.nlm.nih.gov/pubmed/17095407

 

[peleburrows]

I've never heard that before. Can your nutritionist back that up with any reputable sources or studies? Thanks.

And it's unlikely many here will be able to increase B12 levels, much less maintain, with a lozenge since this isn't a dietary related deficiency for people with CD.

Shes an extremely reputable nutritionist and I trust her word.

However, apologies for any undue stress I caused anyone, it was a quick reply. She prefers to use lozenges for people with B12 deficencies to avoid having rollercoaster like B12 levels that may have a negative effect on the body over a long period of time - I'd imagine having severe spikes and dips in most vitamins or minerals for an extended length of time would have some negative effect on the body however minor (or major) (no I don't have a reputable source as thats my own opinion :ytongue

 

[Jobell]

Ok peleburrows, no worries. makes sense that you try to avoid the peaks and dips as you say. i think we are all just trying to figure things out.
Dustycat: if i accessed drug websites for medical professionals, i am sure i would NEVER TAKE ANOTHER DRUG AGAIN. yikes, these things can all sound scary. everything has a side effect - even air, lol.

my doc never checked my levels, just said, "now that we removed your terminal illium YOU WILL have a B12 deficiency, so go buy yourself B12 (OVER THE COUNTER) and get shots once a month. so i do. i get tired, weak, mean, weepy and dragged out if i miss more than a month. so i guess it works.