Drs changing their minds?

[Poppet11]

"I had always thought this was a simple subject – apparently not."

Quote from a GP who took the refresher credits course after reading the BMJ article.

Surely stuff like this must give us some hope???????

[Polaris]

Thought you'd also like to know that my sister's neighbour, (a vegetarian, suffering from exhaustion, etc. ) fell heavily and after a trip to the same surgery was immediately prescribed with B12 !!! We don't know any more but like to think the information is trickling through.

[Poppet11 in reply to Polaris]

This time, as long as the article isn't allowed to die a death - I think the info is going to trickle through. I don't think it will go with a bang - no one wants to look that stupid. I think we will just experience the changes.

My mistake all along has been that I didn't realise other people thought the anaemia was the problem ie, no anaemia, no problem.

I was coming from one direction ie the neuro problems come first and the anaemia comes last (and may not ever appear) - and everyone else was coming from the no anaemia, no problem because the neuro comes after, angle.

Like I said before, the anaemia by the time the neurological degeneration has finished with you, is the least of your worries!

[Polaris in reply to Poppet11]

Let's live in that hope because I can't bear the thought that people will be condemned to really serious problems because they think "the doctor knows best".

[Poppet11 in reply to Polaris]

Let's, because this has basically been going on for decades. It's not only that patients have to suffer illness and injury but they have been 'tortured' (which is the only word I can insert) by the medical profession and all the others (family, friends) that relied 100% on the medical profession by not being believed.

[Leilanilea in reply to Poppet11]

This is very interesting study particularly in the light of it's date of publication...2005! Hope you can find time to read if you haven't already done so.

Cobalamin-responsive disorders in the ambulatory care setting: unreliability of cobalamin, methylmalonic acid, and homocysteine testing

Journal Blood, February 01, 2005; 105 (3)

These are Excerpts; Free full clinical trial report at:

bloodjournal.org/content/10...

"Recent approaches to Cbl (methylcobalamin) deficiency reflect the recognition that neither macrocytosis nor anemia is consistently present in patients with neurologic or cognitive dysfunction.1-5

Cost-effective clinical decision making often leads to reliance on a single test result particularly when more expensive tests such as metabolite assays are involved. Thus, it is important to appreciate how greatly test results may fluctuate over time in individual subjects. As shown in Table 1, serum Cbl levels varied significantly in individual patients. In fact, the large variations observed using the current chemiluminescence assay were similar to those previously reported more than 40 years ago using early microbiologic methods.26,27

Strikingly, one patient in the present series had total absence of vibratory sensation in the iliac crest, knees, and ankles, which resolved completely after 2 months of Cbl therapy despite normal Cbl and metabolite levels. Thus, in the present study, patients with a clinical picture consistent with Cbl deficiency were evaluated with metabolite measurements and often given Cbl therapy regardless of their Cbl, MMA, and HCys values.

It is concluded that (1) short-term intraindividual variations in Cbl, MMA, and HCys values can affect the recognition of Cbl deficiency; (2) Cbl levels well within the reference range are common in patients with clinical disorders responsive to Cbl therapy; (3) metabolites are frequently normal in patients with hematologic or neurologic abnormalities responsive to pharmacologic doses of Cbl; and (4) the presence of elevated metabolite levels are not predictive of a clinical response to Cbl therapy. Thus, therapeutic trials of Cbl are warranted when clinical findings consistent with Cbl deficiency are present, and further studies of the pharmacologic effects of Cbl coenzymes in the treatment of these disorders are suggested."

[Poppet11 in reply to Leilanilea]

There are lots of studies, Leilanilea - Even the BMJ has got it's own advice regarding the serum b12 test. But what I think is different about this one is that a) it is a UK study, b) it has got in the metabolic functions/pathways of b12 (so drs can see the anaemia comes last) and c) it is explaining the inadequacy of the serum b12 in light of the pathway.

Doctors don't deny b12 deficiency causes neuro damage but they didn't understand the pathways. They thought anaemia comes first. If a patient had a deficiency and they resolved the anaemia or reversed the deficiency, they thought the neuro damage had been prevented or reversed.

[Leilanilea in reply to Poppet11]

Poppett,

I know there are many studies...I'm a retired RN and was a clinical trials coordinator and worked in various phases of clinical research for close to twenty years.

After reading so many posts here I can understand the significance of the pathways being cogently presented in the UK study. However, my thought about the study in Blood is that

[Poppet11 in reply to Leilanilea]

Did you suddenly get cut off????

We've been putting these studies in front of doctors for years. They haven't taken any notice. There is, if you haven't seen it, a video on YT - Diagnosing and Treating Vitamin B12 Deficiency - they haven't taken any notice of that.

The bottom line is that no one understood the metabolic pathways nor the stages of the disease progression. It's been as simple as that.

And if you look at the credits section of the BMJ article, doctors are saying the same thing - they haven't really understood this issue.

Because if they had, we would have been recognised and treated properly a long time ago.

I'm just editing this to add this link

bestpractice.bmj.com/best-p...

This tells doctors the test is inaccurate and all the usual blurb. What it doesn't say is that the anaemia comes last. Doctors skim it, even if they bother to read it, (and most of us know doctors never upgrade skills relating to b12 deficiency because they think it is simple) But the metabolic pathway and functions have put it under their noses that they are getting it wrong.

[Leilanilea in reply to Poppet11]

i did get cut off...ipad IOS8 wouldntn't let me continue. My point is that the Blood study noted in several places that neuro findings could precede heme, or there might be no heme disorder, and the ref's cited go back to NEJM in 1988. So whether or not a pathway was defined the clinical info was there.

[Poppet11 in reply to Leilanilea]

I've just edited mine.

There are loads of them Leilanilea - but for the reasons I've put in my above post they didn't take any notice. They thought they had the b12 situation sussed, they had no need to look anything up. And when you do look it up, it's too complicated considering what they believed to be true.

It literally had to be put in front of them saying 'B12 does this, then this, then this...'

The clinical info was there - I've got stuff going back to the 1930s - and less relevant (because of the lack of 'modern' science to the late 1800s. It's always been there.

But they believed it was an anaemia.

You say you were a nurse. In the UK there are about 136,000 nurses and I don't know how many give b12 injections. But I do know that every single one I have spoken to who does, says, 'why do b12 patients always come back asking for more frequent jabs?' This is said as if we are a bunch of whiners.

Yet not one nurse appears to have noticed that they have been getting it wrong - and this has been going on for decades.

[Leilanilea in reply to Poppet11]

I'm sorry the nurses have been ignorant of the reasons for ongoing therapy. I'm actually an internal medicine Registered Nurse Practitioner, and my specialty for years was oncology/hematology. But even if that were not the case, rather than asking my patients why, I would have found out so I could be of help to them. It's embarrassing

[Leilanilea in reply to Leilanilea]

Darn iPad seized up again! Meant to say it's embarrassing to read about nurses without initiative and desire to keep learning.

[Poppet11 in reply to Leilanilea]

This is even more embarrassing - last week I spoke to a specialising anaesthatist (can't spell today, sorry) purely by chance. I said to him, just out of interest, were you aware that nitrous oxide oxidizes b12?

This is to a specialist!

The answer that came back was:

"Well, I, it, I wouldn't have, it's a long time, we don't use nitrous oxide as much as we used to. They are phasing it out. No."

And it was just like that.

It has been known for over 30 years that this is a problem. Yet he didn't know.

[Poppet11 in reply to Leilanilea]

It's not even a case of them being ignorant - they are not diagnosticians, it is not their job to assess a medical situation. But they should have been reporting all these cases back. Instead we have had a situation whereby many nurses think the situation is amusing - I know this because I have personal contact with several nurses. So, no, I don't 'blame' them for failing to understand the functions b12 performs, because it's not their job - but I do think as nurses they should have been more aware of the consistency of the issues and been formally reporting concerns.

No one is really coming out of this situation looking squeaky clean. There have been mistakes being made all round.

[Leilanilea in reply to Poppet11]

Well, there are several kinds of nurses. If we're discussing registered nurses or their equivalent UK counterparts, then they absolutely should understand B12 deficiency, just as they

[Poppet11 in reply to Leilanilea]

You got cut off again!

If they understood it and if doctors understood it, there would be no need for you to be here Leilanilea - there would be no need for this forum or the other forums.

[Leilanilea in reply to Leilanilea]

...should understand diabetes, kidney disease, etc. (I'm shutting this annoying ipad down--glitches too frustrating...good conversation

[Poppet11 in reply to Leilanilea]

I can only just cope with a laptop - Ipads are completely beyond me...

... and I'll just add to this for when you do get back:

We know that UKNEQAS (the b12 lab experts in b12) put out two alerts, one in 2013 and one in 2014, pointing out that neurological damage could appear prior to haematological indicators. This is a good thing.

But one has to wonder not only why they had to do it, but why they had to do it by referencing studies relating to overseas cases?

If everyone knows the metabolic pathways and that neuro damage comes first (including NEQAS) why do they have to issue alerts - as if it is something 'unusual.'

The suggestion would be that NEQAS didn't understand it either. And, considering there are thousands of patients jumping up and down in the UK alone saying their symptoms are returning, why weren't the case reports from the UK?

[Leilanilea]

Hope springs eternal! Thanks Polaris and Poppitt for your comments.

[Poppet11]

Have you seen the film Hope Springs? I liked it.

[Leilanilea in reply to Poppet11]

No, I'll watch for it...thanks