Labs two months ago showed I was in the very low normal range, close to B12 deficient. I was also folate deficient. After two months of supplements and 4 weekly B12 injections, my labs now show I'm at the high end of normal range for B12 and folate. I had the labs one week after my last B12 shot and have continued taking it sublingually. 

There's good reason to believe it could have been poor diet, but poor absorption is also in question as we continue to investigate chronic pouchitis versus a diagnosis change from UC to whatever crohns/colitis variant.

So I am keen to monitor my folate and B12 to see if I maintain it. My next B12 injection is in 3 weeks (going to monthly now). I am continuing folate and B12 by mouth and am better about getting veggies in the diet. 

My question is when should I ask to have the labs done again? I'm thinking maybe right before the next B12 injection so there's 4 weeks since the last injection.

 

Original Post

B12 normally takes a long time to drop - the body routinely stores a year’s worth or more. Folate deficiency is on a shorter time course, but it’s pretty rare for folks who eat leafy green vegetables and whole grains. Both deficiencies result in a similar type of anemia, with large red blood cells (*very* different from iron deficiency). Supplements themselves can make the tests unreliable, as can other things, so some care is needed to make sure the deficiencies are 1) real, and 2) not overtreated. If I were in your shoes I’d skip the next B12 injection and test again in more like 3-6 months instead of 4 weeks. I’d also be a little suspicious of the folate deficiency, since it can act just like a B12 deficiency in many ways.

Jan, how long were you taking B12 daily?

I definitely need some guidance. My GI tested first and told me to contact my PCP about B12 injections. PCP is pretty laid back, wasn't concerned I was in low normal range and first said just take sublingually. He agreed to injections after I explained the possible absorption concern by the GI.

At this point I'm not sure they'd be on the same page about how to take it, how often and when to retest. I would like to see if I can maintain levels without masking by over treating.

I took it for 3 months and the next test was through the roof. So I dropped to every other day, then 3 times a week, then twice a week. 

There is no danger with a high B12 level, but what’s the point? I don’t even do the subligual. I swallow it.

Jan

Update and follow up question.....My B12 was 1106 in January when I was getting monthly injections and taking it sublingual daily. I stopped sublingual when the doc said just do the monthly injections. My B12 now (8 months later) is 465 and was tested right before my monthly B12 injection.

I'm wondering what I should consider for ongoing supplementation as I am back to the low normal range (though my low was 247 before starting injections). My PCP isn't concerned, but is not proactive/doesn't seem to understand the correlation with IBD. My GI team watches it more closely.

I'm also wondering if this is an indicator of possible Crohns versus pouchitis (which has been a mystery in my case in the last several years of extensive testing). UPDATE: I found a post where Jan  talks about B12 deficiency being linked to chronic pouchitis and Crohns. I haven't found much in the way of studies discussing a link to pouchitis, so I am very curious about this.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×