someone who’s colon is removed, then years later there terminal ileum taken out. Why when I was told years ago I shouldn’t require any blood work for B12 deficiency, I must have shots 3 monthly for life
Who can I contact in finding out if serum B12 or Active B12 with MMA is tested to detect B12 deficiency. I’m forced to be tested, my results show I’m deficient. I know my results are incorrect.
Is there anymore else forced to be screened with half there bowel missing
"my results show I’m deficient. I know my results are incorrect."
I am confused. Your results show you are deficient - which is what one might expect. So why do you think they are incorrect?
Or is it that you are having regular injections, yet your results are still low?
And why are you being 'forced' to have your blood tested?
If your bloods show B12 deficiency and you are having B12 injections that shows that you need much more frequent injection (many people need more than the 8-12 weekly NHS regime to be well and symptom free (those with neurological symptoms need every other day injections until no further improvement - sometime for many months or even long term). (See British National Formulary for treatment guidelines - online and your GP will have a copy).
You are also correct - if no terminal ileum then injection are for life. No B12 testing is required for anyone on injections - unless looking for low B12 levels, in which case more frequent injections are required.
I’m not sure why you need active B12 or MMA test. The lack of terminal ilium should guarantee treatment for life with no further testing.
I have a dilemma because my GP told me my bowel does absorb. I’ve had major problems with approaching him about my results. NHS are performing the standard B12 screening test. My results are normal, Last year I was shown to have “high creatine” this was detect 3x and not investigated (short bowel syndrome dehydrated renal problems)
B12 normal.
Very low folic acid
I been 3 years knowing my B12 results are incorrect. I won’t bore you but I was once a person who took pride in myself, I now lay in bed disgusted and saddened that my condition isn’t managed
I’m losing 200mls water waste a day
I never took my Folic acid vitamins, I wanted to prove on my next blood test that my folic wasn’t treated and hoped B12 would be further investigated
2 months later my folic acid was absolutely fine
Now tell me how this has happened
I’ve no ileum colon gone, high water output, and a patient who is terrified to approuch I’m.
I wanted some backing to support my claim.
Thank you xxx
It sounds like your GP is not being very helpful and I'm sorry that you’re having such a dreadful time.
I'm not sure what you’re saying about B12 - is it that your GP has stopped your injections in the mistaken belief that you can absorb vitamin B12? If so, that’s wrong - B12 is reabsorbed in the terminal ilium and as you don’t have one (😬) vitamin B12 cannot be absorbed.
Here's a copy of the British Society of Haematology Treatment Guidelines for B12 deficiency. In there you will find a list of causes for B12, of which resection of the terminal ilium is one - the treatment flowchart shows that this should be treated with B12 injections, for life. If your GP is not doing this then print this document, highlight the relevant sections, and ask to be treated according to those guidelines. No GP should have a problem with that (though many are unaware of these guidelines).
onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
As Said before, B12 levels are immaterial once on injections as they can’t 'tell you anything about the presence or absence of B12 deficiency - once treatment is started frequency of injections should be based on symptoms (in other words, injections should leave you symptoms free and if not, you need more frequent injections.
As outlined above, if you are not receiving B12 injections, you should be!
The 200mls of water waster daily - this is likely because of the excision of your colon (or at least some of it). The colon is where water is reabsorbed so the lack or limited amount of colon results in water being expelled rather than reabsorbed - hence the watery daily waste. I've no idea why your GP is not aware of this - or ignoring your concerns. I suggest that you ask to be referred back to the surgical team who performed your operation - there are potential remedies for this and you shouldn’t have to suffer like this. But I expect you know that already 🙂
It seems to me that you are not being well served by your GP! Is it possible to see another GP or change practises completely? You deserve to be listened too and treated for your obvious ongoing problems and I'm so sorry that this is not happening.
Another option is to put all your concerns in writing (together with the above guidelines, if necessary) and request that your case is reviewed and that appropriate care and attention is delivered - preferably by another GP. We often find that having something in writing which goes on your medical records focuses the minds of medics and 'encourages' them to pay attention and do what they should have done in the first place. (P.S. don’t get hung up on B12 levels - rather focus on the lack of terminal ilium and any symptoms of B12 deficiency you may have - most especially neurological ones. It’s also worth pointing out that if your GP is relying on B12 levels at the bottom of the range to refuse injections, this is not relevant or a reliable marker in those who have no terminal ilium.)
Unfortunately it seems to be the case that those who shout loudest are the ones who (sometimes eventually) get treatment, so don’t be worried about standing up for yourself and pushing for the attention and treatment you deserve.
Very best of luck. I hope things improve for you soon. Let us know how you get on. x
I apologise for my miss matched post lol.
I meant I’m losing 2500mls of watery output a day from my stoma.
My ileostomy was done in 1996. Every 3 months I had a B12 injection.
Then in 2016 I moved 180 miles away
I’ve had 2 doctors who are aware I have no colon, 3ft of small bowel removed. Refused to give me my routine injection if my blood test for deficiency was ok.
I’ve had 2 normal readings last year.
I am told by this doctor it’s nonsense that my bowel is unable to absorb. Fighting such awful symptoms of having very low B12 has crushed me.
Why am I the only person who is unable to have my jabs back. B12 testing is giving incorrect results due to inactive B12 included in result.
I am unable to understand how an unreliable test is causing terrible grief and sadness
One of my uncles had much of his bowel removed including the part needed for b12 absorption. This was many years ago and he was put on injections, he hasn't had neurological symptoms but I believe he has b12 every 6 weeks. He says he starts feeling tired a week or two before his injection is due but is otherwise okay. It sounds to me like you need your injections more often. I hope things get better for you soon.
B12
Serum B12 levels compared to active B12 levels 
B12 deficiency & muscle weakness & muscle fatigue
Result of 'active B12 test'
