They should request an MMA if you are symptomatic and have a reason to be deficient (according to the guidance), especially if you've been supplementing.We have the same with my daughter. My husband went in with the NICE guidance and did some education... She is now reluctantly (she hates the injections) having im B12 whilst we await the MMA result.
This flowchart from a UK document suggests that doctors should think about continuing treatment in people who respond to B12 injections (meaning symptoms improve) even if secondary tests such as MMA/homocysteine are normal range.
Unfortunately testing is not sufficiently accurate for you to be confirmed 'PA negative' (or coeliac negative come to that) - was it an Intrinsic Factor test for PA? Anyway, you should mention that you are hypothyroid (which increases risk of B12 deficiency), that you were folate deficient when the hypo was diagnosed, and that you have tried various forms of B vitamin supplements but that you are still symptomatic and levels have not increased significantly with the oral supplements. Do you have family history of B12 or PA, as that would also increase your own risk. Also do you take other medications which might be depleting or affecting absorption or have you had gastro surgery in the past. Are you now gluten free, which is suggested as often beneficial with hypo and other autoimmunes, and could help with some nutrient absorption. Cheers
Thank you yes I had the IF test but that was negative and I understand that even if your negative you may still have PA? I am a vegetarian and have had a gastric band in 2012! I also had a hiatus hernia and the surgeon repaired it when he done the band thankfully! I am not gluten free and I don’t remember anyone in family with gastro problems? Many thanks 🙏
OK, a few things there. Anti-IF antibodies can be negative and you still have PA, as you say. PA does not only produce gastro symptoms, but we often don't know family history and B12 deficiency can come in many other forms. Your intake of B12 containing foods may be reduced then, being vegetarian (although milk is a good source for those who can tolerate dairy), but the big flashing lights here are for the surgery. Partly due to the anaesthesia of course - any can reduce B vitamin levels just as part of the stress reduction on the body of illness and surgery (like with magnesium, vitamin C and zinc etc ) and if it were nitrous oxide then that could have made a more significant hit, especially if you were already depleted and with a lower than optimal intake (nitrous inactivates a proportion of your active B12).
As to the surgery itself - anything gastric can impact parietal cell function through damage (doesn't need to be antibody related) and although bypasses I understand are more likely to result in deficiencies than bands are, both can - I read that after restrictive surgery (gastric band), vitamin B12 deficiency is not uncommon and can affect 10% of patients. If you were already low or lowish and with reduced intake, up go your chances of a problem. And I am surprised that your folate wasn't higher given that you are vegetarian - often the high natural folate intake can mask a B12 deficency, which possibly adds to the malabsorption picture here.
I found this guidance for supplementation post-surgery and it doesn't sound as if this has been happening for you. You may well be deficient in a number of Bs and others and they all work intricately together, but it might give you some support in talking to your gastro. If attending to all the others doesn't make significant improvement, I'd be asking for a trial of B12 injections.
It is important to be aware that when supplementing folate that it will go towards dealing with the anaemia (fixing the red blood cells) but with an underlying B12 deficiency the possible and likely neurological symptoms will continue to increase. As already stated, B12, B6 and folate are cofactors and they need to be taken together for effective results. I experienced the very same thing as yourself at the beginning, ignorance at the surgery, 2 previous low B12 results (162 and 158) one 5yrs ago and one last year ignored, loading doses worked for me, after only being offered 1 every 3 months, symptoms returned 2 weeks after loading dose. Surgery not cooperative so went onto SI EOD, now take folic acid 5mg and B complex. I’m also hypothyroid and have recently tested (private) and was taking to low a dose so GP did increase my dose. And so the lobbying goes on. 🙂
Thank you B12again yes been a long slog 🙈🙈🙈🙈 diagnosed Hypothyroid 2021! I did myself! 🙈I’m very lucky my GP is excellent although can be slow at doing things as she is now part time 😌 and Covid etc… if I want a f2f it’s likely nearly a month now! I’m very fortunate I can afford private blood tests as it would never get done! I’m classed by NICE as indeterminate likely deficient! I do self inject once a month and feel good for a couple of days then back fatigued again 🙈.
About half of people with PA get a negative or normal range result on IFA (Intrinsic Factor Antibody) test for PA. It's possible to have Antibody Negative PA.
This flowchart from a UK document mentions Antibody Negative PA
I have some reservations about it...in my personal opinion too much emphasis on treatment with high dose oral B12...but there are good bits.
Worth trying to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland). Keep an eye on them...they are likely to change soon due to new NICE B12 deficiency guideline.
I left detailed replies on this thread below that might be helpful.
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High active B12 but I have all the symptoms of B12 deficiency
Hi,
Very new to all this!
hi
