Oh dear! I am likely to have B12 toxi... - Pernicious Anaemi...

Pernicious Anaemia Society
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Oh dear! I am likely to have B12 toxicity!

jointpain
jointpain

Just been to see another different GP for a new prescription for an unrelated problem. While there I said I had not felt as well as I do now for twenty years now I was SI B12 every other day, and have done for 120 days, also added if I try going longer than three days sum specific symptoms return. She said I was likely to have B12 toxicity, I countered that B12 wasn't toxic, and mentioned this site, I also said I thought the PA society agreed with SI. Can anyone say if this is true?

Anyway I am having another B12 & folate test, a folate test and a ferritin test plus another intrinsic factor test Anti Parietal Cell Antibodies test Thyroid function screening test, plus quite a few other tests. As she said a good armful!! Looking forward to the results.

13 Replies
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I’m not a Doctor but I’m pretty sure B12 is not toxic in the doses recommended by nice.Make sure you are getting plenty of folate and the other minerals and vitamins, you can find details on here.

I’m sure the PA society are unable to recommend SI as they are not medically licensed to recommend individual treatment. That can only be done by a medically trainer Doctor. I’m not connected to them, but I’m sure the law says only medically trained and licensed people can diagnose and recommend treatment. Otherwise we would have idiots recommending stupid treatment like exercise for people with chronic fatigue etc..

My understanding is that the PA society is there to help people navigate our health service by offering information based on medical guidelines and to raise awareness and understanding in the medical profession.

Good luck!!!

Portia1974
Portia1974
in reply to Dadvatar

Ha ha! 😂👌

"Otherwise we would have idiots recommending stupid treatment like exercise for people with chronic fatigue etc."

Those (qualified) idiots exist!

Frodo
Frodo
in reply to Portia1974

Exactly what they were recommending, yes!

clivealive
clivealiveForum Support

Hi jointpain read the link below. if possible copy and show it to your doctor

stichtingb12tekort.nl/weten...

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well

.

Thank you clivealive. I have written about my B12 levels in the past, but never really gone into whether it could damage me, I have read much of your writings and references in the past few months and believed a great deal of it. Which is why I mentioned my SI to this GP, in the hope I could educate her, but she was having non of it. From the tests I am having it strikes me I have been monitored for something for years, with out being told what it is. I shall ask when I see her again.

As I understand it B12 is water soluble so any excess your body doesn't use will be excreted in urine. Testing now will show very high B12, obviously, so if the dr isn't expecting that.........

I got rid of nearly all my B12 deficiency symptoms by self injecting and did exact what you're doing, followed what my body needs.

I was diagnosed with Fibromylagia a few months later but I've managed all the symptoms of that without "help" from the GP. I'm sure the heavy duty painkillers and antidepressants he'd prescribe would cause side effects ( I get the side effects of everything, some have been of the fast trip to hospital variety) I'm not 100% ok but on a good day I'd say 75% and there are fewer really bad days than a few months back.

If you're feeling well, stick with it.

Gambit62
Gambit62Administrator

No known toxicity of B12 which is why hydroxocobalamin is the treatment of choice for cyanide poisoning- doses of 5g over the 15 min intravenously with follow up after 30 minutes - only down side is the volume of fluid this introduces to the blood flow which can cause hypertension.

Whilst raising B12 levels in a significant number of people can cause a reaction that stops it getting efficiently in to cells (and does seem to keep it trapped in the blood) the treatment is raising levels even higher - so not toxicity.

Good to be checked for the other things - always possible that more than one thing is going on.

I've been self injecting every other day since Feb 2016 have recently gone to 3-6 days between injections sometimes longer, My doctor just isn't interested in my improvement. but I am feeling so much better I'm happy.

I follow what my body is telling me. The advice on this site is excellent.

Just how I feel, my headline was really a reflection of my sense of humour, in that, though I wrote it I didn't believe it! If however these further tests show up something else that the Doctor can address it was worth telling her. If the tests for Celiac's is negative which I reckon it will be as I have been off gluten for years, she did say a new test for crohns will be available in a few weeks, so I could be having that sometime.

Nice to read all the support. Though a crucial question I asked hasn't been answered yet!

Foggyme
FoggymeAdministrator
in reply to jointpain

Hi jointpain. Is this the question...

'I also said I thought the PA society agreed with SI. Can anyone say if this is true?'

If so, first, the PAS recommends that self supplementation does not take place, in any form prior to appropriate investigations and diagnosis.

They also recognise the difficulties that many people have obtaining both a diagnosis and appropriate treatment, including issues to do with the 'one size fits all' approach to injection frequency, which leaves many people suffering because they are unable to accsss frequent enough injections to get and keep them well.

The PAS offers its members advice and help (in the form of advocating with GP's on behalf of patients) in order to try and assist in the sometimes difficult attempt to access diagnostic processes and appropriate treatment. But, being realistic about the current state of play where many GP's are concerned and understanding that sometimes, people just run out of option and have nowhere else to turn...

The PAS therefore offers a range of advice on how and where to obtain additional B12 injections and recognises that for some people, self-injection may be the chosen (or only) option, for those in this situation. In cases where neurolgical symptoms are present and GP's either won't investigate or won't offer appropriate treatment, then yes, the PAS would offer advice about how to obtaining B12 for self-injection, qualified by appropriate safety warnings. Sooner that than see people left open to the potential of irreversible neurological damage.

(They can't of course, prescribe vitamin B12 injections - but I know that's not what you thought 😉😀).

Advice also includes appropriate warnings etc. - here's a link to the relevant PAS website page...

pernicious-anaemia-society....

Also - here's a research paper by an American Consultant Haematologist that you might find interesting... or perhaps show to your GP, who seems to have some very odd ideas.

It covers the issue of those who need more frequent injections and decide to self-inject, stating that B12 is proven to be safe (non-toxic etc.), and that there is no reason to advise against it (last couple of paragraphs of the paper):

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

Your GP is a noodle if she thinks you have B12 toxicity. No such thing!

A link about out that:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

If this wasn't the question you wanted answering....shout up 😉

👍

jointpain
jointpain
in reply to Foggyme

It was, and thank you so much.

Foggyme
FoggymeAdministrator
in reply to PaulFoster

Hi PaulFoster. Great to hear that you're doing so well 😄😄. (Replying to you in another reply jointpain).

Cherylclaire
CherylclaireForum Support

As haematologists have told me that B12 is highly addictive, toxic and carcinogenic without offering any proof at all, although I asked several times, could it be possible that your GP has sought out experts like these for advice ? I really despair sometimes about the brightest and best..........

I have looked at reams and reams of research and not once found any reference that links B12 and Toxins -aside from it's use as an ANTI-toxin in the way that Gambit62 describes above- nor can I find any evidence at all to demonstrate it's addictive quality..... wouldn't liver be everyone's favourite meal, then, and cockles their favourite snack?

I have, however, been advised to look at Turner and Talbot's research in which they have concluded by recommending "frequent" injections for those with Functional B12 deficiency. This is perhaps not the succinct argument for supporting your case that you are looking for, but PAS also has a recent article about research in early stages that clearly shows some people need more injections than others -and that may also help you.

Accept the tests : if something else/additional show up, it will be useful- coeliac disease/ Crohn's/ Thyroid conditions/SIBO (small intestine bacterial overgrowth) may need to be ruled out/in and some of these may well have links with B12 deficiency, whatever came first/second/third.

I have been self-injecting every other day since September, and know that most of my symptoms are still around, -but occur less often, are less severe and some of them have gone -unless I try to leave my injection for a day. I still start yawning (air-grabbing in overlapping gulps like a goldfish) half-way round the supermarket, but don't get dizzy, confused or overwhelmed with peripheral noise/light/fast movement and certainly don't need an immediate 3 hour nap when I get home- now I can actually laugh about it with the staff.

Still improving, noticeably and more predictably now. Finally starting to listen to my own body, and getting my life back again. Slowly.

If your GP says something that you aren't sure of, ask for a source. They think what they think because of what they have read or been told, just like us .

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