Confused: Conflicting Research and Recategorising Deficiency.

[Cherylclaire]

I read recently the good news from PAS that early results from research demonstrate clearly that some people need more B12 than others, and that these people can be collectively identified by stool sample; that their samples share traits that are different from those that are deficient but coping with NHS regime, and the control sample, who are not deficient.

Although at an early stage, very welcome relief for all those people who are already certain that this is true for them, but seek proof for GP/ specialist consultant that does not involve having to deliberately deteriorate to be believed.

However, I also read recently a post here bearing some not-so-good news about hospital specialists monitoring those B12 deficient patients who DO need more and self-inject to stop themselves deteriorating further, with a view to recategorising them and renaming them as a separate group: that they are addicted in some way ...so the likelihood then being that at some point, once identified as belonging to this new category, restrictions will be placed on access to B12 for them ! This "addiction" to self-injecting and the ensuing "euphoria" have been mentioned to me by 3 consultants within the same hospital trust. Why?

How can BOTH findings be true ?

I understand that only those with a concrete Pernicious Anaemia diagnosis* were involved in the B12-deficient groups for the first research: is this then to be the "cut-off point" for adequate treatment in the future ?

Is this a test that will not be available to B12-deficient self-injectors without a PA diagnosis who have been open about their inability to function on an NHS frequency- and so given no chance to validate their need for more frequent treatment ?

Anyone else confused by this ? Anyone know anything about what is going on ?

Any historical evidence at all on this forum in support of this highly unlikely vitamin addiction?

Anyone out there hooked on cockles and calve's liver?

Does this warrant a new cartoon, Hidden , or is it too serious to be funny?

* This appears to be an increasingly rare group since most people never seem to get a diagnosis for their B12 deficiency at all now.

[fbirder]

Doctors will not know about the study showing physiological differences between those needing frequent injections and control subjects. That’s mainly because the study hasn’t been completed yet, let alone published.

[Foggyme Administrator]

Hi Cherylclaire. I recall the post that I think you're referrring to and most of it was supposition and heresay, rather than anything based on published research or any sort of evidence. The notions expressed in that post appeared to arise from one fairly scrabbled conversation with a GP (recorded and posted verbatim, on the forum).

And as fbirder says, the PAS research is in a early stage - the first research results have yet to be published and the second stage of the research project is due to start in October.

To help clarify, here's the response I left to the person who originally posted about this....some of it may sound out of context (because responding to specific questions)...but you'll get the gist...

So, some comments on your post...in particular, clarification about the notion of a 'new as yet unnamed condition' and 'protocol for self-injectors'.

>Need for B12 an 'addiction type thing...a bit like morphine'. Shocking to hear of a GP and Biochemist trotting out this old chestnut again. Absolutely no research evidence to support this claim - in fact, research over the last fifty years shows quite the contrary.

>Putting things in B12 to make it addictive - beggars belief and not even worthy of comment.

>Biochemist 'following everyone’s results'. Well, what a useless and misguided activity. Anyone at all who has injections of B12 (self-injectors or not) will (should) have very high serum and active B12 levels - and these are no indicators as to the clinical efficacy of treatment - as we all know. No way on the planet that this can be described as 'research' or used to inform...well, anything at all...ethical issues and research protocols aside.

>MMA levels will be high when injecting B12. More nonsense. There are two issues here: a) If MMA levels are high due to B12 deficieny, then these will reduce upon B12 replacement therapy and b) in the presence of functional B12 deficieny (where the cells can not process B12 effectively), then MMA will be high, even though there may be lots of B12 sloshing about in the blood, and hence raised serum B12/active B12 levels. Bit worrying that a biochemist does not appear to be aware of this (unless the message has been lost in translation between GP and Biochemist).

> Plans to ban the import of injectable B12? Not that I'm aware of - but no idea what brexit will bring (earlier post here indicated that legislation had been put in place to ensure the continued flow of medications to the UK - but not sure of the details or whether this is correct).

>'New as yet unnamed condition coming out'. Not sure whether you mean for those who need more frequent injections or for those who self -inject (the implication being that this is some kind of addictive aberration)? But whatever, the answer is no, there isn't. I suspect that these two medics have become a little confused both in terms of this and in terms of potential new protocols for the treatment of B12 deficiency. Here's the current status...

>New Protocols: New Treatment protocols are currently being researched and developed by a group of research scientists and various health agencies, with input from the PAS. These are intended to move away from the current 'one-size-fits-all' approach to the treatment of B12 deficiency - which we all know fails so many people. The

intended aim is to produce guidance that will enable people to be prescribed the right frequency of injections for that individual to get and stay well. Hurrah for that.

>B12 injections are banned in the UK. Not quite the case - more that it is not sanctioned for IM self-injection in the UK (yes, we're behind Europe in this and it's short-sighted - but not the same as actually being banned).

So...some other things you might be interested to know...

>The PAS are facilitating a research project to investigate the efficacy of B12 via subcutaneous injection (many assume that SC injection is as effective as as IM, but no research exists to demonstrate this). If it can be demonstrated that SC injections are equally as effective, then that’s a step towards the sanction and licensing of vitamin B12 for SC self-injection. We deficients would then be able to self-inject in the same way as diabetics do now...and if this,included a new protocol based on frequency according to need...oh joy.

> More interesting research: in brief, another research project by the PAS has resulted in the identification of specific bio-markers that are present in those who need to inject B12 more frequently to stay well (bio-markers not present in the control group or in those (quite rare few) who seem to manage on three monthly maintenance doses of B12). This is the first time this has been identified. Further research is now getting underway to investigate the significance of this. It's a step in the right direction in terms of understanding some of the complex reasons why some of us do need more frequent injections. Very exciting.

So...I think your GP and Biochemist are, well...not quite on track with this (at best).

Hope that the above will reassure you...and anyone else who reads your post and the subsequent replies.

So...hope this clarifies 👍

P.s. Apologies - unable to post link to the original discussions on this - the poster is no longer a member of this forum.

[Cherylclaire Forum Support in reply to Foggyme]

Thanks, Foggy, that's set my mind at rest.

[wedgewood]

One problem is that B12 injections are advertised by unscrupulous “clinic” operators that they can help in weight-loss ! I’ve seen many of these claims . They are also advertised as giving the recipients renewed energy ( they well might if the patient is B12 deficient . ) These injections are perfectly legal , although not medically prescribed , as long as no medical claims are made . The weight-loss patients do get hooked on the idea that they can lose weight etc with the B12 injections .. . It’s giving B12 injections a bad name when people who do not need them medically are getting them . They are regarded as yet another fad . The injections are very expensive at these clinics . We also read how so called. “Celebrities “ have these injections . The likes of Simon Cowell , Madonna etc etc. Doesn’t do anything for our cause . In fact ,just the opposite .

[Foggyme Administrator in reply to wedgewood]

Agree with all you say wedgewood ...and it may well be that this is why we're seeing a resurgence in GPs who think that B12 injections are addictive, a placebo...and other such nonsense.

Also suspect that it's one of the reasons why suppliers seem to be having trouble keeping up with demand, thus resulting in frequent 'out of stock' notifications and lack of supplies for we deficients, who really need it. Sigh...

👍

[Cherylclaire Forum Support]

Well I'm so glad I've got you lot to sort me out ! Thanks everyone for your thoughts and clarification.

I have now been self-injecting every other day for a year now, as well as taking a lot of multivitamins and minerals and lots of folic acid. I am going back to my GP this week so that she can see for herself how well I am now -and also because I want to have my ferritin and folate levels checked again (obviously not B12 though). She will, no doubt, ask me when I am going to reduce my injections. This is a problem for me: I have recently tried a couple of times- and other people have noticed my deterioration. Also tried Boost spray which did not seem to have any effect.

Last week was hectic (in a very good way): I am now at work 2 days a week, but they are concurrent and as a teacher, the first week back in September is always hardest. I was fine and enjoyed it, but it took its toll later and I have had a return of hair loss, sore and splitting mouth and bleeding gums- all of which may also be folate - and some fatigue and cognitive problems returned. Quite disheartening really, because this all came afterwards and I thought I'd got away with it !

However, I feel okay and know that I can work out how to make this easier, with some help.

You are right of course that GPs will not know about this research. Perhaps they should, if the advice they are getting from consultants regarding B12 concerns are along the lines of "toxic, carcinogenic, addictive" because if they are saying it to me, they are saying it to her, too. And others.

[hellmice1]

Hi Cherylclaire.

I posted on that thread and that was because I think most of us have all heard the old placebo type rubbish from doctors.

There is a lot about the B12 pathway that is just not known and that may well be part of the problem.

Until there is irrefutable scientific evidence that B12 is addictive or causes a placebo effect then I would take what the muppet GP and bio chemist allegedly said with a pinch of salt.

They are expressing an opinion which is actually irrelevant.

Luckily the b12 is not too pricey and we do have the option to self inject.

I wouldn't have thought that Brexit will cause too much of an issue, just make sure you have enough in stock until the dust settles.

Worse case at the moment may be that you will be hit with a VAT charge when buying form the EU which you don't have to pay while we are still in the eu.

I can't see them banning it being imported at the moment and that would definitely not happen due to the muppets opinions.

X.

[Cherylclaire Forum Support]

Thanks, hellmice1 .

I actually asked three times for some written proof (research paper) when a haematologist told me that B12 was highly addictive and carcinogenic, and told her that I would send it to the Pernicious Anaemia Society as a matter of urgency, because about 10,000 people needed that information ! [Of course there was no response to that.]

It's not so much that anyone here believes this, it's that some GPs might, when asking professionals for treatment advice. Especially when trying to help those patients who they can see are clearly struggling to survive on 1 injection every 2 or 3 months, but cannot find any guidance .

Yes, luckily we can self-treat cheaply, while waiting for research results from PAS - so far, so promising - which may lead one day to better easier treatment for all. Yay.

[deniseinmilden]

I'm sorry I missed this before but am grateful for seeing it now.

Thank you!