Too much B12?: Hi all, I wonder if... - Pernicious Anaemi...

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Too much B12?

Julesboz profile image
4 Replies

Hi all, I wonder if anyone else has had a similar problem? Firstly, I don't have pernicious anaemia. Last year I had awful GI issues and unexplained folic acid and iron deficiency anaemia and borderline low B12. I also have mild chronic kidney disease which, according to the doctors, is not connected. I don't eat dairy or gluten and my GI issues have resolved, and strangely my kidney function has improved. For the last year I have been taking liquid iron and 1000 ug sublingual cyanocobalamin daily. I also take a 5mg folic acid tablet about once a month. This is all self prescribed as, as soon as I was no longer anaemic, my doctors told me I was fine and I didn't need to take anything and they never accepted I had a problem with B12.

Anyway, for the last couple of weeks I've been getting a feeling like I have mild electric shocks on my face, or a spider crawling feeling. I noticed it was fine in the morning but would come on in the afternoon after I'd taken my B12 tablet with lunch. Anyway, I stopped taking the B12 tablet 3 days ago and, lo and behold, the electric shock symptoms have gone. However I'm already starting to get the 'deficiency' symptoms back, first one being bleeding gums, so I know I need to take the B12.

I always thought you couldn't overdose with B12? Has anyone else experienced something like this? When I've googled it, the only thing I can find is people getting this feeling when they are deficient in B12.

Thanks in advance to anyone who can help with this!

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Julesboz
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Julesboz profile image
Julesboz

All, I've just realised that up till a couple of months ago my B12 tablets were methylcobalamin and I didn't have a problem with them. The supplier was out of stock so the new ones I've been taking are cyanocobalamine, I thought they were the same thing. Could that be causing my problem?

Julesboz profile image
Julesboz

Yes I'm in the UK. When I had all the problems last year I convinced my doctor to do the blood tests for PA, despite her not believing I had a problem, and they came back negative. I did have a lot of the symptoms of B12 deficiency. I also ended up having an endoscopy and colonoscopy because my anaemia was unexplained and the docs were worried about GI cancer (I'm 52 so prime age for it). The gastroenterologist ruled that and celiac out. She was also adamant I didn't have a B12 problem, despite my levels being right at the bottom of acceptable for years. She could not explain my folic acid or iron deficiency. It was all put down to 'one of those things'. All I know is that if I stop supplements, my levels drop despite being a meat eater and eating lots of folic acid containing foods.

Sleepybunny profile image
Sleepybunny in reply to Julesboz

Hi,

"How do you know you haven't got PA"

"convinced my doctor to do the blood tests for PA, despite her not believing I had a problem, and they came back negative."

It's possible to have PA even if Intrinsic factor Antibody test result is negative. See flowchart below which outlines when PA or Antibody Negative PA can be diagnosed in UK.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

"gastroenterologist ruled that and celiac out. "

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

"She was also adamant I didn't have a B12 problem"

Emphasis in UK is on treating people who are symptomatic for B12 deficiency even if b12 levels are normal range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I have written some very detailed replies on forum, just put Sleepybunny in search box.

More b12 info in pinned posts on forum.

I am not medically trained.

Julesboz profile image
Julesboz in reply to Sleepybunny

Hi there, thanks for all the info, I did look into all of this last year and as a result, I had a bit of a 'discussion' with the gastroenterologist about this last year and I told her all my symptoms prior to taking B12 sublingual and how they'd all gone after taking them (along with iron and folic acid). She was absolutely convinced that it was all down to iron deficiency and told me categorically that my levels were fine. If I felt better after taking the supplements then that was co-incidence. I got the impression she thought it was in my head and the B12 was a placebo. However in the same conversation she did admit that gastroenterologists don't know much about food and it's impact on the body, so I'm not sure I trusted her!

I do appreciate pernicious anaemia is difficult to diagnose but I did think that if you had it sublinguals alone wouldn't help and you have to have injections, whereas siblinguals have worked beautifully for me. Am I wrong?

Anyway regardless of whether I have pernicious anaemia or not, I definitely know I need to take it and will continue to do so, it's just weird I've got this odd electric shock feeling after taking the tablets. I am now wondering if it's the type of B12 (see above I didn't realise I'd got the wrong type of tablets). I've got multiple food intolerances and am chemically sensitive, I can't take anything synthetic, so I'm wondering if that's the cause - cyanocobalamine is synthetic whereas methylcobalmin isn't. Also I have mild chronic kidney disease and cyanocobalamine isn't recommended for CKD sufferers.

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