Crohn's Disease Forum » General IBD Discussion » Vitamin B12 Deficiency

10-19-2011, 08:44 PM   #1
Join Date: Sep 2011
Location: St. Louis, Missouri
Vitamin B12 Deficiency

Over the last three of the eight years that I've had Crohn's I've experienced several vitamin deficiencies due to malabsorption. The biggest one of B12 level. Currently, I'm towards the low end of the spectrum (the cut-off being around 200 before you're considered out of range). Last month's level was 311; this months...335. I used to get a 1,000mcg injection monthly. Here lately, however, the dosage has been doubled to 2,000mcg, and my level still hasn't increased by much. I've been getting these injections for two to three years.

It's very obvious when it's getting time for an injection because I become very moody- at times high-strung, extremely fatigued, headaches increase, get cold very easily, and my depression spirals.

I don't know if my absorption issue has worsened with the need for increased B12 dosages or what's going on. I just know that within two and a half to three weeks post injection that I can already feel the need for my next dose, but I have to wait it out.

Also, to save on gas (as my GI is about forty-five minutes from my home) and injection fee administrations, I give myself the injections at home. Does anyone else out there do this? Is anyone else out there having the issue with their B12 not increasing very much post injection? I would just like to hear from anyone who's experienced this or knows someone who's gone through this, or is currently experiencing it.

Dx'd with Crohn's in 2003
Dx'd with IBS in 2001

Past tx's include: Pentasa, Entocort, Asacol, Colazal, Prednisone, 6MP, Imuran, Remicaid, Humira, Flagyl, Cipro, Promethazine, Zofran, Lomotil

Current tx: Apriso, Zofran (prn), Lomotil (prn)

Surgeries (GI/Non GI related):
Cholecystectomy: 11/1999
Parathyroidectomy: 08/1999
Bilateral Tubal Ligation: 10/2002
Colon Resection/Appendectomy: 10/2003
Bilateral Mammoplasty: 07/2006
10-19-2011, 10:22 PM   #2
Senior Member
sunflower's Avatar
Join Date: Jun 2010
Location: Kansas

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I just started my B12, so I can't help too much. But, I do know that your doctor could increase the frequency of your injections. Maybe that would lessen the amount of discomfort you are in while waiting for your next injection. You are obviously not getting too much - and increasing the dosage didn't seem to help that dramatically. However, every two weeks, or every week might be beneficial until you can get your levels up.

I know I only felt better for about 2 days after my second injection, so my levels are probably not up much. i figured it may take a while. It probably took a while for me to get low, too. I was at 260 and the doctor figured that was low enough since I am having symptoms.
Diagnosed: 1992 with Crohn's
Current meds: Asacol HD, Humira plus many more!
Also have hypothyroid, diabetes type II, Fibromyalgia, Insomnia, AS diagnosed 12/11 (on my birthday).
10-30-2011, 10:01 PM   #3
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi darkmuse,

I've had your thread open in a tab on my browser since the day you posted it because I wanted to respond properly but didn't have time (I've had a hectic last couple of weeks). I've been doing a lot of research into vitamin and mineral deficiencies and have learned some things about B12 that might help strike a cord with you and as such may want to discuss with your doctor.

1. B12 is stored in the liver (up to 5 years worth!) but once that is depleted then problems start. Thing is, research has suggested that to replete that store can take up to 20 injections over a short duration. Your one a month or once every 3 weeks injections might just be getting your serum levels back up and not much if any is going to your liver.

2. If your terminal ileum is still in tact, in addition to the injections, you may want to think about eating foods high in B12. How do you feel about liverwurst? I actually find it quite tasty! Here are the best dietary sources of B12.

3. Serum B12 levels are not necessarily indicative of whether or not you are deficient or not. Someone with 400 may be deficient but someone with 200 may not be. The key is methylmalonic acid and homocysteine levels. If THOSE are elevated, then you're deficient. Problem is, most doctors don't test those, they test serum B12.

4. Believe it or not, within 48 hours after you inject 1000 mcg of B12, 50 to 98 percent of it may appear in your urine with most of that happening in the first 8 hours. So upping the dose to 2000 may not be doing all that much for you if you're excreting most of it. More frequent, lower doses might be best.

5. I see you are on Apriso which is a form of Mesalazine which is a closely compound to para-aminosalicylic acid which is shown to interfere with vitamin B12 absorption. Related? Maybe, maybe not.

I hope that helps somehow

*hugs* to you!
It's good to be back

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