A bit of background: in Nov/Dec had bloods and my B12 was 155 (iron, vit D also low) had problems getting B12 shots so meanwhile started with oral spray methylcobalamin. My B12 has now increased to 1200 approx.
Had appointment with doctor yesterday who said that since my IF came back negative and my B12 has increased on oral spray alone I don't have Pernicious Anemia.
So she wants me to stop all vitamins (B12, D, folic acid and iron) and re-test in 3 months.
The problem is that I'm starting to see some improvements, especially in my bowel problems and fatigue, so I'm afraid if I stop I will get worse again.
On the other hand, if I don't have PA and my B12 is over 1200 if I continue to supplement with B12 will there still be room for improvement? Or once the numbers are right is there no point in taking any more?
Sorry to bombard with so many questions but I'm lost.
Thanks for any input x
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The doc is correct. If taking oral B12 boosts your levels that much then you do not have an absorption problem and, therefore, do not have PA.
WIth your B12 that high 3 months will not make that much difference to your levels.
I would stop taking the supplements, as suggested. But, if the symptoms start returning then I would ask for an earlier retest. Something like folate will drop quite quickly without the supplements.
Don't want to hijack this topic, but want to ask about the absorbtion as you seem to know a lot. If one has issues then oral absorption would be slow and low or completely absent. Like months of supplementing daily basis would show up some eventually.
If on injections ,should there be noticeable increase on B12 and if not what can cause that? Just not enough or often enough or rapid use?
I know serum level does not matter that once on injections/supplements but is it sign of anything?
serum B12 measures the amount in your blood - although injections aren't intravenous they by-pass the gut as a way of getting B12 into you and just about all of the B12 will end up in your blood quite quickly. After an injections B12 levels will be off the scale and then they will gradually fall over time as excess is removed by the kidneys (and a small amount is used - but it's mainly the removal by the kidneys that reduces the levels). There is a huge variation in how quickly individuals remove B12 from your system. Some of the early studies showed times ranging up to 4 years for B12 to fall back to normal levels - but the average is a couple of months for hydroxocobalamin.
Serum B12 is nigh on impossible to interpret after an injection - and potentially during supplementation.
Thanks! Been trying to understand is there difference as for me levels won't rise high and seem to drop relatively fast either way. 3 mo daily sublingual(1.2 mg) got me from 340 to 670 which was considered ok and no need to follow nor supplement .Two years later my serum B12 was below 200 and 12x (1mg) injections over 10 weeks got serum level up to 600.
So I guess for me it's just used fast and thats how it is and how I feel support that as I feel the benefit of B12 wear out relatively fast especially when physically active.
Gambit62 so in my case even though I have seen improvement with oral spray would there be no point in continuing to take it if my numbers are now 1200 approx? Or could I maybe continue to improve if I continue taking it?
it would be best to stop so GP can do tests without B12 clouding the issue.
Keep a diary of your symptoms over time.
Given the dramatic increase in your levels it would appear that you don't actually have a B12 absorption problem so the amounts of B12 in the spray would be overkill in terms of trying to maintain your B12 levels and a supermarket supplement would be more approrpriate.
If you had a dietary deficiency and had macrocytosis then it will take a few months for that to clear entirely but your B12 stores should now be replete and your body should be able to use those to maintain levels where you need them even after your kidneys have done with removing excess, without any further supplementation for quite a long period of time.
I agree with Gambit62 - that it seems that you do not need injections, and that's a really good thing.
Also that symptoms should be recorded by you. I still do that every day. It's how I know I'm getting gradual improvements finally.
List your symptoms. If you are not sure what might be considered as B12 symptoms, look at a comprehensive list: Pernicious Anaemia Society or B12 def. , which will give you more than most GPs are aware of. List those that apply to you, and make a chart that shows dates. Mark when symptoms are present, and how severe.
The problem is that there may be other considerations. For instance, small intestine bacterial overgrowth (SIBO) can rob you of vitamins, including B12. This can be treated, although not easily, with antibiotics. Coeliac disease may also need to be ruled out.
Both could cause bowel problems. Both can be tested for: SIBO by hydrogen breath test, Coeliac by endoscopy biopsies. Both, while available on NHS, are expensive and might be more likely to be referrals from haematology or gastroenterology if B12 low and methylmalonic acid (MMA) high.
Intrinsic Factor antibody tests (IFab) can be wrong fairly often, but it's unlikely that you will be able to persuade your GP to continue testing for a positive result, given your improvement with oral spray.
You haven't said much about how you feel or what symptoms you have had. Keep a close eye on them if you decide that it is worth stopping any supplements for 3 months. No-one can make that decision for you.
You were clearly not well for some reason. If you are sure that this was not dietary, you might also do well to record what you eat and drink so that this can be eliminated with no need to see a dietitian. If you have any visible symptoms, take a few photos when at their worst for records, too.
It should go without saying, but I'll say it anyway: if, without supplements, you deteriorate rapidly, go back to your GP and don't feel obligated to either wait out the 3 months or to amass piles of evidence to prove that you are struggling.
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