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Re:B12 and amount of intestine used

11 years 5 months ago #25746 by kcnorthstar
I Just looked at my last B12 test results and it lists the standard level at 190-850. Looks like the standard is not standard! My level was 364 and it think it was about that range a year ago. Looks like I will have to question my doctor on this one. What I find amazing is that most people with an RC are not told about B12 deficiancy. I found out about it off the web after my RC and when I questioned my doctor he acted like it was no big deal and said I didnt really need to have it tested. Just another example of how you have to take charge of your healthcare and not just put total trust in doctors.


Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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11 years 5 months ago #25735 by Patricia
Good Lord Holly you should be in a tiny ball writhing on the floor at 170...200 is the cut off point of being too low...
Normal serum B12
range, newborns3 160 - 1300 pg/ml

range, adultsA 200 - 900 pg/ml
average 450 pg/ml

And to add to your paranoia.......
psychotic depression is more often caused by Vitamin B12 Deficiency than by any other known or unknown cause. This fact is hardly ever borne in mind when psychiatrists confront a case of psychotic depression and, when they do think of it and order a serum B12 level, they will more often than not still miss the deficiency because the lab "normal range" is so low that their patient's B12 level almost always appears to be in the "normal range".

At least six neurological and psychiatric papers, in top medical journals, have shown that the normal range should be regarded as at least 500-1,300 pg/ml (rather than 200-1,100), since the cerebrospinal fluid level can be deficient when the serum level drops below 500, and neuropsychiatric symptoms often occur at serum levels between 200 and 500 pg/ml (VanTiggelen et al, Lindenbaum et al, Mitsuyama/Kogoh, Nijst et al, Ikeda et al, Regland). As for the still held misconception that the neuropsychiatric effects of Vitamin B12 Deficiency are always accompanied by a macrocytic anemia, it is humbling to know that this notion was already debunked in 1905 (Langdon)! Since then, many papers have stressed this point, including those by Strachan and Henderson (1965), Evans et al (1983) and Lindenbaum et al (1988).
....:blink: Pat

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11 years 5 months ago #25734 by mznoregrets
Hard to believe I am still afraid of needles after 4 cancers, chemo and 14 or more surgeries...LOL

I was lucky though...I had a really good friend who sent suckers and cards while I adjusted to the shots :)

Does anyone else get the foot cramps when B12 gets around 170 or so ?


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11 years 5 months ago #25724 by Patricia
Hi Eileen...how are you and your hubby doing? Mike should come on once and a while and advise some of our newbies.
Well to sort of answer your question...... 1 foot equals 30.48 centimeters.
so if he had 2 feet of ileum removed he's beyond the 50cm that would indicate at some point his liver will run out of Bl2. The surgeons told me as i said that my liver had 3 to 5 yrs of Bl2 storage...but they were wrong...i was dangerously low at 6 months. I have a feeling men do things differently than women because i seem to hear of the deficiency popping up much sooner in women. I don't know how often he has blood draws...I know my follow up was every 6 months for 5 yrs and actually is still ongoing as we know i have the deficiency. The test for Bl2 is a separate draw...unless the doctor will order the urine MMA test...i think thats a better test from what i've read and i actually paid for one myself just to make sure i was within range.
But my hospital does it...Mayo orders it....but a heck of a lot of uro's know nothing about it.....wierd huh?
Shot is no big deal unless you're Holly who is deathly afraid of needles...she will handle bears, snakes, and things that go bump in the night but Needles ????? What can i say? It doesn't hurt...its a shot in the arm.
I usually have to remind my doc to include the Bl2 as he always forgets...maybe he needs a shot?:side:
Anyway hope you are both well and happy happy happy.........Pat

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11 years 5 months ago #25723 by mznoregrets

My B12 bottomed out 3 months after RC. Dr wanted me to get a shot every other day for 2 weeks, then monthly. It was so low I had anemia and mental confusion. And OMG - the foot and leg cramps are horrific - looks like my foot is broken when it cramps. I have a full dose every 3 weeks and that has worked better the last several months.
Take care, Holly
PS I tried the subligual tablets before I tolerated the shots. The tabletswere 5,000 micrograins each and I could not even absorb the 2 micrograins a day to avoid the needle.

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11 years 5 months ago #25721 by EG1680
hi pat - so my husband had 2 feet of ileum used to make his neobladder in nov. of 2007. is it a big deal if he just gets his bloodwork monitored so if he's deficient he can then get a B12 shot? in other words, it seems like it's an easily fixable thing. is that the case? what's the big deal about a shot once a month? let me know. thanks. eileen

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