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Crohn's Disease Forum » General IBD Discussion » Inability to Absorb B12 INCLUDING Injections


03-17-2016, 07:51 PM   #1
Jennifer
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Inability to Absorb B12 INCLUDING Injections

As of right now this thread does not have much information. The purpose of this thread is to figure out what would cause someone to not absorb B12 injections.

Both my GP and GI do not understand why my body doesn't seem to be absorbing B12 in injection form. I've been getting B12 injections since at least 2011 but the highest it's been before my next injection was a little over 400 which isn't bad but kind of sad that that's the highest I was able to get and that was back in 2014, it hasn't been that high since.

At my appointment today my B12 went down to 314 from 338. I'm getting injections monthly as of right now and take oral B12 in liquid form but have a difficult time absorbing much oral B12 because of my previous resection that removed part of my terminal ileum.

To try and boost my B12 when it was at 278 my GP had me get an injection once a week for 4 weeks then every other week and now we're at once a month again but as I mentioned the number is going back down and never got very high at all.

I just had an injection today and will have blood work done tomorrow and then again after a week from today to see what my number is right after a shot and how quickly the number is going down. In the past I had blood work done the day after a shot and it was over 1,000 but before my next shot a month later it goes back down into the mid-high 200's.

Being deficient in vit B12 can make you feel very tired, weak, short of breath, experience heart palpitations, numbness, depression etc. There's no set number for when you start to feel these symptoms so they may or may not occur when you're low in B12. Every lab is different for what they say the "normal" range is but I've always been on the low end of "normal" and sometimes in the deficient range. I do experience some of the symptoms mentioned like fatigue, weakness, numbness, depression and increased heart palpitations so I really want to increase my number in hopes that some of these symptoms will be less or go away entirely (I've already had other tests that checked my heart etc).

If I'm having difficulty with injections then chances are other people are as well. Perhaps you and your doctor have discovered the cause and found a way to increase your numbers again. If that's the case then please share your and your doctor's findings. Since both my GP and current GI are stumped I'm going to be contacting my previous GI up in Stanford California along with my GI in UCLA California and some other places like Mayo Clinic, Mount Sinai, Cleveland Clinic etc (I'm open to suggestions on places to contact). Hopefully at least one of them already has an answer and if not then it's possible that they'll know what tests to run to figure out the cause.

*UPDATE*
Issue Solved:


Took a while to try and figure out what was wrong. Had a lot of tests done. Almost needlessly, at least one showed I had osteopenia even if that wasn't what we were looking for. Good to know though.

Anyway, apparently the problem isn't with me it was the lab I was going to. My B12 recently was over 1,800. It's high but it's fine. I'll still be going for monthly injections. Turns out though that the lab I was going to is beyond terrible to probably dangerous. Who knows what other blood tests they may be screwing up. My doctor said she would contact them but I'll also contact the company and let them know.

When I went to that lab each time I was barely over 300 even after getting weekly injections. When I went to a different lab at an actual hospital my B12 was over 1,000. I had it tested at both labs a couple days apart on two occasions and each time it was the same result of either barely 300 or well above 1,000. I'm no longer going to the lab that claims my B12 is low (without the injections it was barely 200 at that lab but I didn't get it tested at another lab back then). I've thought about going to a third lab for another opinion to see which one is correct but I trust the lab at this hospital a lot more than the one I had been going to which was right next to my doctor's office.

If you're having similar problems even if it's not your B12 and maybe something else, please get tested at a different lab for another opinion. I wasn't even aware that this was possible but apparently it is and that's dangerous.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-17-2016, 08:15 PM   #2
Clash
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I don't have any answers but instead of oral liquid has your doc ever prescribed Nascobal? It's a prescription nasal b12 spray that gets absorbed in blood stream and bypasses GI tract. Maybe along with injections that would help.

Have they said that you have pernicious anemia and that you're just not responding to b12 shots?

My kids aunt and grandmother on their fathers side do not produce whatever is needed to break down b12 so all require shots and nasal spray. I don't understand it exactly but my daughter is being tested since she stays b12 deficient.

Heres the link to Nashoba

https://www.nascobal.com/patient/wha...al-nasal-spray
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03-17-2016, 08:18 PM   #3
Clash
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Also let me tag Catherine it seems she had some knowledge about this or something similar.
03-17-2016, 08:24 PM   #4
Jennifer
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I had forgotten about the nasal spray. I'll mention it to them.

With Pernicious Anemia it mainly mentions absorbing B12 in the ileum but doesn't mention about absorption issues with the injections which also bypass the digestive tract. That's why my GP disregarded it.
03-17-2016, 08:55 PM   #5
Clash
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Sorry autocorrect corrected Nascobal to whatever work that is up there haha!
03-17-2016, 09:08 PM   #6
Clash
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I'm going to speak with my kids grandmother and aunts about their condition. I've spoke to one Aunt but she wasn't knowledgeable about what caused their deficiency just that even with monthly shots and supplements they remain low/borderline. The other aunt works in the medical field so I'm hoping she'll have a better understanding of their diagnosis. If I think it's relevant I'll pass it along.

Also it seems Catherine knowledge that she passed along on another thread about pernicious anemia could also be caused by a form of gastritis, atrophic gastritis, maybe. I tried to find the thread but I can't seem to come across it now.
03-17-2016, 09:30 PM   #7
Catherine
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I would research "folate trap mechanism". Do you know your folate levels?

Look at MTHRE.

Paging David.
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DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

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03-17-2016, 09:50 PM   #8
D Bergy
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The shots never brought me back to normal either. I started using sublingual B-12 and my last test was normal for the first time.

These are the ones I take.

http://www.swansonvitamins.com/swans...d-b-12-60-tabs

Dan
03-17-2016, 10:03 PM   #9
Salad_Shooter
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I don't know, Clash, I kinda like "nashoba". It's fun to say.

I use sublingual B12. I may try the Nascobal......or "nashoba". hahaha

It's weird that the injections aren't helping, Jennifer. I've never heard of that.
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03-17-2016, 11:11 PM   #10
Jennifer
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I have taken sublingual B12 before I tried the liquid since the regular tablets did nothing. They didn't help either unfortunately.

I don't see it listed on this lab order Catherine. I'll have to ask for that to be ordered as well.
03-18-2016, 02:25 AM   #11
Catherine
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Have you been tested for Pernicious anemia.

http://www.medicinenet.com/pernicious_anemia/page5.htm

Are you also take a B Mult Vitamin? David explain to me why should supplement all the b vitamins not just one.
03-18-2016, 02:40 AM   #12
Jennifer
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Have you been tested for Pernicious anemia.

http://www.medicinenet.com/pernicious_anemia/page5.htm
Not that I'm aware of. My CBC was all normal. I've never done the The Schilling test, looks like a lot of guess work and unfortunately some unnecessary antibiotics. I wonder why this test isn't all that common anymore. The treatment for it though sounds very similar to what my GP tried doing except with didn't do the injection for 7 days in a row. We did it once a week then every other week then once a month.

Edit: I do take a multivitamin. Not a specific B complex vitamin but it does have other B vitamins.
03-18-2016, 04:23 AM   #13
D Bergy
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I wonder if there is a resistance to the B-12 like I have to D-3?

I took D-3 in the regular doses and it wouldn't bring it up substantially. My doctor said to just keep increasing the dose until it goes up. That's what I did and sure enough I did get it back to a normal level. It took between 25,000 to 30,000 iu to do it but mission accomplished.

Maybe something to ask the doctor.

Dan
03-18-2016, 04:32 AM   #14
Salad_Shooter
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I did a little research, and I don't know what meds you're on, but I did find this:

Certain medicines, including antibiotics, methotrexate, or pyrimethamine, may interfere with lab tests for vitamin B12.
03-20-2016, 02:28 AM   #15
Jennifer
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I did a little research, and I don't know what meds you're on, but I did find this:

Certain medicines, including antibiotics, methotrexate, or pyrimethamine, may interfere with lab tests for vitamin B12.
From where? I take Mercaptopurine.
03-20-2016, 04:10 AM   #16
Salad_Shooter
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http://www.drugs.com/cdi/cyanocobalamin-b12.html

Under Important Safety Information
03-21-2016, 06:04 PM   #17
Christi
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This is very interesting i never had mine tested before now and i will know this for the first time on Thursday
03-28-2016, 12:23 AM   #18
Jennifer
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Catherine my last lab result says that my Folate is 15.7 (according to this lab, normal range 7.0-31.4 ng/mL).

I had blood work done the day after my B12 injection and my B12 shot up to 1202 which is very high but that's expected after a shot. I had my blood work done a week later but haven't gotten the results of that yet.
03-29-2016, 02:16 PM   #19
David
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When you were on weekly shots, what did you results look like?
03-29-2016, 02:18 PM   #20
David
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Have you been tested for Pernicious anemia.

http://www.medicinenet.com/pernicious_anemia/page5.htm

Are you also take a B Mult Vitamin? David explain to me why should supplement all the b vitamins not just one.
Are you asking me to explain why? Or stating I had said as much. Wasn't sure on that.
03-29-2016, 06:09 PM   #21
DougUte
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Jennifer

Before I was diagnosed with Crohns I went to a neurologist because of a very strong tremor in my hands. The neuro diagnosed Essential Tremor. She said while the cause was not known, it is believed by many that ET can result when the Vit-B's are not being properly absorbed into the bloodstream for a very long period of time. She took my levels and found B-6, B-12, and Folic Acid to be very low. Because of the absorption issues she recommended a vitamin called B-Trio Chewable from. These vitamins dissolve and absorb in the mouth. Since then by vitamin B levels have been decent. Here is the website, in case your interested.

I do think that since you are doing the shots you may be beyond this, but I thought it was worth mentioning.
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03-30-2016, 12:31 PM   #22
wildbill_52280
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Not sure if this will help, but our body conserves b12 by recycling it/reabsorbing it, at the ileum. If any part of the ileum is removed, you may have a harder time retaining your b12 after a shot so smaller and more frequent shots could be better then one large shot.

There are actually 3 forms of b12: Methycobalamin, Adenosylcobalamin(AKA dibencozide), and hydroxycobalamin(not shelf stable so they don't use this in shots). I take methylcobalamin in a vitamin supplements in low doses every day, it's in my b- multivitamin. Then I take adenosylcobalamin sublingual every 2 weeks, my b12 has been normal from this regimen. I cut these up into 1/4 and take 1/4 every 2 weeks

Hope this helps!
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03-30-2016, 12:58 PM   #23
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I started taking b12 shots twice weekly after having a restless leg-type episode and subsequently finding out my levels were crazy low. I have ileal Crohns (had a resection in 2004) and was in a big flare so it makes sense. Not sure if I really see a major difference from them and planning to ask my doc to check levels again soon.
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03-31-2016, 02:12 AM   #24
Catherine
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Are you asking me to explain why? Or stating I had said as much. Wasn't sure on that.
I was doing both.

Sorry David I wasn't clear. You told me that we should always supplement the other B's when supplementing vitamin B12. Your reasoning made a lot of sense but I can't explain it. I can't find the discussion.
04-01-2016, 01:50 AM   #25
Jennifer
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When you were on weekly shots, what did you results look like?
~350 or just over 300.


Something rather odd has happened and I'm not sure what the cause is exactly.

So the day after my shot I mentioned that my B12 was at 1202, I got the results from the blood test for a week after the injection and it says that my B12 was 1436. It shot up even more and my doctor was very confused. We went through with the shot today as she suspected that maybe it's just now starting to build up in my system but I've never heard of someone's B12 continuing to rise after getting an injection a week later. My folate went down from 15.7 to 13.8 while my B12 increased dramatically.

She's going to try prescribing the nasal spray to see if I can get by with that instead of constantly coming in for injections. I'll retest again in a month before my next injection.

I'm having a bone scan done on Monday.
04-01-2016, 06:48 AM   #26
Catherine
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I know b12 and folate, effect each other.

When I supplement B12 my folate levels always drop. The same thing happens with Sarah.

Your folate levels are currently well with range, so it not an issue at moment.
07-12-2016, 02:22 AM   #27
Jennifer
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Took a while to try and figure out what was wrong. Had a lot of tests done. Almost needlessly, at least one showed I had osteopenia even if that wasn't what we were looking for. Good to know though.

Anyway, apparently the problem isn't with me it was the lab I was going to. My B12 recently was over 1,800. It's high but it's fine. I'll still be going for monthly injections. Turns out though that the lab I was going to is beyond terrible to probably dangerous. Who knows what other blood tests they may be screwing up. My doctor said she would contact them but I'll also contact the company and let them know.

When I went to that lab each time I was barely over 300 even after getting weekly injections. When I went to a different lab at an actual hospital my B12 was over 1,000. I had it tested at both labs a couple days apart on two occasions and each time it was the same result of either barely 300 or well above 1,000. I'm no longer going to the lab that claims my B12 is low (without the injections it was barely 200 at that lab but I didn't get it tested at another lab back then). I've thought about going to a third lab for another opinion to see which one is correct but I trust the lab at this hospital a lot more than the one I had been going to which was right next to my doctor's office.

If you're having similar problems even if it's not your B12 and maybe something else, please get tested at a different lab for another opinion. I wasn't even aware that this was possible but apparently it is and that's dangerous.
07-12-2016, 01:48 PM   #28
Ihurt
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Wow, thankfully you cannot overdose on B vitamins! That lab should be shut down! I mean what if it were Vit D or something. That you can definitely take too much of. Sorry you went through all of this all because a lab was not doing their job correctly. That is scary.
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