too much b12..?

[jillc39]

I have heard that the consultant I see has just said that a new finding is that patients can have too much B12 so is cutting down on frequency of injections. I need to know before I see her again if this is true or not???

[Foggyme Administrator]

Jillc39. This is not something I've heard of. I've done a quick check for recent research papers and I can't find anything (but that doesn't necessarily mean that nothing exists - some research is hidden behind firewalls and inaccessible to lay persons).

There are recent research papers that suggest that too much folate can be detrimental to health (it can be neurotoxic in cases of long term over supplementation).

High levels of serum B12 can be indicative of other issues (kidney, liver etc.) and in those cases it is the underlying cause for the raised level of B12 that is an issue, not the high levels of B12 which are potentially caused by other health problems.

As far as I am aware, high levels of serum B12 due to injections is not in itself harmful. The important thing (as you know) is that injections are given frequently enough to keep symptoms at bay and maintain health and well-being.

If a reduction in the frequency of injections results in your symptoms of deficiency returning, then the impact of this needs to be addressed by returning to a frequency that works for you (leaving you symptomatic and B12 deficient again seems like...well...madness...at your expense).

And in the unlikely event that the new research your consultant speaks of does exists (which I very much doubt), then any potential risk needs to be balanced against the greater risk of a re-emergence of the symptoms of deficiency. Under treatment of B12 deficiency can result in an associated risk of neurological damage and ultimately, subacute degeneration of the spinal cord. I know that you know this...just wondering if your consultant does?

Be interested to hear if your consultant is able to provide research references for this? I'd certainly ask for references to the evidence.

So hmm...be interested to hear what others say.

Very interested to hear how you get on with this. And what a pain after all the struggles you had getting adequate treatment in the first place (if I remember correctly).

[jillc39 in reply to Foggyme]

thank you very much for this. most helpful. I will keep you in the loop.

[Foggyme Administrator in reply to jillc39]

Thanks jillc39. Good luck 👍

[fbirder]

I'll bet she has seen one of the recent article associating high B12 with some cancers. Like this one - cebp.aacrjournals.org/conte...

If you just read the first sentence - "Elevated vitamin B12 levels (B12) are associated with increased short-term cancer risk" - then you might think that they're saying that high B12 can cause cancer. What they're actually saying is that cancer can cause high B12.

[deniseinmilden in reply to fbirder]

And it is an established fact that high homocysteine levels as a result of B12d can contribute to cancer. I suspect that long term very low B12 also causes problems through compromised DNA synthesis.

If you have already got cancer, better levels of B12 may allow it to grow more quickly than it would if you were deficient because of B12's role in cell replication.

[Hidden in reply to fbirder]

Didn't they also put that the higher risk was in just 3.4% of the total population of the study, if so then that in itself is not sufficient to get hot under the collar over.

[Gambit62 Administrator]

High b12 correlates highly with a number of adverse health conditions but nobody has, to my knowledge, ever established what mechanism causes the relationship and in just about every correlation I am aware of a preceding B12 deficiency could well be the cause.

Patients with high serum B12 levels do also tend to have larger tumours but I'm not aware of anything suggesting that they are more aggressive. The reason for the larger tumours is likely to be the fact that B12 is involved in cell reproduction and the process doesn't entirely distinguish between a healthy cell reproducing and an unhealthy one reproducing.

In every study I've come across that has a headline about B12 and x that makes it sound as if B12 causes all sorts of horrible things actually says in the detail that they have identified a relationship between higher incidence of x and high B12 and that more research is needed to establish why.

[deniseinmilden]

Well it would be very useful to to have the written proof of this so please ask them for it.

If that is the case we here should know about it and quote it so I'd appreciate it if you would ask for it - on behalf of a friend who currently takes high doses (me)!

In the meantime we're all with you and rooting for you!

Good luck! 🍀 X

[jillc39 in reply to deniseinmilden]

what a good idea deniseinmilden. will do.

[deniseinmilden]

In 4 days I will have done 4 years of daily injections, most of which have been using 1.5mg in 1ml ampoules and I have continued to improve all this time. The latest "new" thing is my body has started to thermo regulate for the first time in 30 odd years! As I mostly work outside this is an incredible advancement for me.

I can't say I like sweating but at least it's good for me!

[Hanneke12 in reply to deniseinmilden]

[Cherylclaire Forum Support]

In 2017 I was sent to see some haematologists who told me that B12 was toxic and highly addictive. When I asked for a copy of the research , because I was a member of the Pernicious Anaemia Society and felt that all the other members needed to be told this as a matter of urgency, the evidence was unforthcoming.

I asked three times. Nothing.

I was also told that my tiredness, poor memory, dizziness and overlapping yawns (air-hunger) were not B12 deficiency symptoms but because I used to smoke, and so now my brain lacks oxygen.

It really wasn't worth the months of waiting. Hopefully, your consultant's "new finding" did not come from the same source.

It would be very interesting to find out what is currently circulating, as I have been self-injecting every other day for nearly 2 years. Ineptly and reluctantly, but with a degree of success. Still yawning though !

[Sleepybunny]

Hi,

"a new finding is that patients can have too much B12 so is cutting down on frequency of injections"

Not aware of any research that suggests this.

If GP/specialist said this to me I'd ask for more details of the research eg

1) Who were the authors of the research report?

2) How much B12 was considered too much in the study?

3) In the study, what were the effects of "too much".

4) Show me the evidence for what you've said in the BNF, BSH , NICE CKS links/documents

5) Where can I read about this finding?

I'd try to be polite in the way I asked.

Cynical me suspects a cost cutting exercise....

You could take following articles to next appointment.

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Copies of BNF, NICE CKS, BSH documents if in UK.

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

[Foggyme Administrator in reply to Sleepybunny]

Great questions Sleepybunny 👏👏👏

[jillc39 in reply to Sleepybunny]

brilliant, thank you for this.

[Cherylclaire Forum Support]

Interestingly, I was recently told by a Metabolics consultant that, should I be found to have an inability to metabolise B12 within my DNA, I would "only" be given 2 injections a week on the NHS anyway.

She would certainly have read any new research paper on too much B12 being harmful, I would have thought.

I'd be quite content with an answer.... but let's keep that between us !

[Sleepybunny]

Hi,

I'd also ask specialist that if people can have "too much" B12 , is the treatment of cyanide poisoning going to change, as huge amounts of Hydroxycobalamin are administered during treatment.

See BNF link, section on treatment for cyanide poisoning.

bnf.nice.org.uk/drug/hydrox...

[helvella]

Observation:

The standard injection is 1000 micrograms, which will obviously raise levels very considerably. If there is anything in this notion of too much B12, perhaps they should inject 10 micrograms a day?

Obviously, that would mean 90 injections every three months... No? I thought not.

[Foggyme Administrator in reply to helvella]

Ouch 🤣🤣🤣🤣🤣🤣🤣

[Frodo]

Surely the Pernicious Anaemia Society would know of this research? Has anyone asked Martyn Hooper? I think if this is what people are being told, the PA society should surely be looking into it as a matter of urgency. I understand they do have specialists on board who presumably are up to date with current research.