B12 Deficiency - Evaluating Cognitive Disfunction

[Polaris]

Helvella recently posted this very important link, which could be another vital tool in the battle for B12 treatment - reading it made me wonder why our family had to fight so hard for our relative to obtain B12 tests and treatment after wrongly diagnosed dementia & ME when this information was out there all along ?!

According to these extracts, B12 deficiency should have been considered earlier, especially with a history of vegan/vegetarianism and ME, yet our letters and pleas to the surgery with guidelines and information on B12 def., were ignored and obstructed time after time. Arrogance and ignorance caused delay, worsening symptoms, and risk of permanent damage:

ncbi.nlm.nih.gov/pmc/ar...

Extracts:

"Evaluating cognitive dysfunction requires involvement of family or other independent observers (not just the patient). "

"We attempt to define and quantify the cognitive impairment, identify any potentially reversible conditions and address comorbidities, such as vascular risk factors in hopes of preventing progression.".

"Lab testing B12 levels - Methylmalonic acid/homocysteine levels (confirm vitamin B12 deficiency). Potentially reversible syndromes:

- Depression

- Medication induced

- Metabolic derangements

- Vitamin B12 deficiency

- Thyroid disorders

- Thiamine deficiency

- Chronic disease (e.g., renal failure, hepatic failure, malignancy)"

"Laboratory testing should be considered to identify potentially reversible conditions that may mimic dementia. Early identification and aggressive management of such disorders may improve a patient’s thinking and daily function. Which laboratory studies to order is controversial. Some clinicians suggest a detailed laboratory evaluation to include complete blood counts (CBC), chemistry panels, erythrocyte sedimentation rate, thyroid function tests (thyroid-stimulating hormone [TSH] and free thyroxine [FT4]), vitamin B12 level, thiamine level and syphilis screening. As tertiary-level neurologists, we tend to agree with this approach for many of our referrals. Others would dispute this assertion from a cost–benefit standpoint, arguing that such evaluations are expensive and usually low yield."

Metabolic derangements

Vitamin B12 deficiency The classic dementia work-up includes a vitamin B12 assay. Serum folate should also be measured. An estimated 10–15% of individuals over 60 years of age may be deficient [57]. Hematologic abnormalities may not occur with vitamin B12 deficiency, even with nervous system involvement [58]. In deficient states, vitamin B12 supplementation should improve mentation and prevent the disability associated with progressive myelopathy and peripheral neuropathy. Like depression, vitamin B12 deficiency is more common in AD, although it is unclear why [59]. Physicians need to monitor mental status in patients with vitamin B12 deficiency whose clinical profile is otherwise consistent with AD. If cognitive abnormalities progress even after vitamin B12 levels normalize, a diagnosis of both conditions can be made."

[Secondchance]

Hi Polaris- link won't work. Looks very interesting- what was the title/author so I can search for it? I know I was cognitively impaired when at my worst and I kept thinking that if I had been older I could have been labelled as early dementia with falls.

[Polaris in reply to Secondchance]

I hope Secondchance you've been able to get the link that Helvella has provided and that all your symptoms have improved with B12.

My sister had been diagnosed with ME for years (at one point in a wheelchair), and it was only after memory problems got worse and a huge crisis, (she was by then nearly 70 years old) that they were quick to diagnose dementia even though an MRI had already ruled out Altzheimer's.

Physically, she's good now but still worried about her memory. I could weep for all the lost years but, at least, we know the cause.

[Secondchance in reply to Polaris]

Thanks got it. Yes I'm much better now thanks to B12 but I can see how it can be mistaken for Alzheimers in older people. Good your sister has had some improvement but pity it was not picked up earlier

[helvella]

Think this works:

ncbi.nlm.nih.gov/pmc/articl...

[Polaris in reply to helvella]

Thank you Helvella I hope it worked when I emailed it with the BMJ article to Esther Rantzen at Silverline! Also posted on the Altzheimer's site but couldn't post links.

[helvella in reply to Polaris]

When copying links posted in HU, right-click on the link and choose Copy link location (or whatever wording your browser uses - that is for Firefox). That technique copies the full link, if you do a normal copy, you only get the truncated version that is displayed (I have added extra spaces after full stops so the examples don't get converted to proper links):

ncbi. nlm. nih. gov/pmc/ar...

healthunlocked. com/api/redirect?url=http%3a%2f%2f ncbi. nlm. nih. gov%2fpmc%2farticles%2fPMC2536654%2f

[Polaris in reply to helvella]

Thanks Helvella....I'm using IPad though - can't see any other way of doing it ?

[helvella in reply to Polaris]

This won't work with all links (e.g. won't work on links to PDFs), but it does work on a lot.

Follow the link by clicking on it/touching it. When the target page opens, go to the address bar at the top. Hold finger on the URL for a few seconds until the circle appears, lift finger, choose Select all. Then choose Copy.

Now go wherever else you want and paste the link.

(My iPad is a very early one, stuck on an out-of-date version of IOS. Might be a little different on more recent versions.)

[Polaris in reply to helvella]

ncbi.nlm.nih.gov/pmc/articl...

[Secondchance in reply to helvella]

Thanks

[Gambit62 Administrator]

Thanks Polaris - very interesting though such is the state of international medicine that what might be seen as standard of care in one country doesn't necessarily apply in another ... though I wouldn't have thought that being divided from the US by a common language and a lot of ocean would really make a lot of difference to how B12 deficiency affects people

[Polaris in reply to Gambit62]

Just lost my reply - this site so frustrating sometimes!

Is it the ocean separating us or is it this? taken from the frontispiece of "Could it be B12?":

"America must understand that finding the underlying cause of disease, like B12 def., threatens the power structure of the medical establishment. Diagnosing B12 def. and treating patients with B12 calls into question the practice of giving drugs that suppress symptoms of disease without addressing the underlying cause". Kilmer S. McCully MD

He goes on to say that patients would be lost if treated with inexpensive and effective vitamin therapy. Also that the media is not interested, partly because of lucrative advertising by the pharmaceutical industry.

We seem to be following the US in this regard. Is this why Dr Chandy, the UK expert in B12, has been banned from giving B12 injection just before the extra money given to GPs for each dementia patient? I keep wondering what has happened to his patients?

[Gambit62 Administrator in reply to Polaris]

I know what you mean - you see headlines about people taking things like Gabapentin and developing cardiovascular problems and dementia and it makes you want to scream. Really don't know how you get the world to wake up to B12 as an issue - and so much of it is so short termist - treating with B12 would be much more cost effective ... and that's what the NHS should be about - its supposed to be a Health Service but as one friend so insightfully puts it it's actually turned out to be the National Illness Services - focusing on treating rather than preventing.

[Polaris in reply to Gambit62]

Too true- the NIS run by the drug thug companies.

[Hillwoman in reply to Polaris]

What has happened to Dr Chandy is so depressingly cynical. As for his patients, I would hope and expect that they are being helped by the charity he co-founded, B12d. However, I got an email from Hugo Minney - another founder and the main contact - just before Easter, explaining that the charity is in severe difficulties because so many people need help from them. That gives you an idea of the scale of the national problem.

[Polaris in reply to Hillwoman]

That really is so depressing.....there must be more we can all do but I don't quite know what.....

[Hillwoman in reply to Polaris]

Fortunately, my finances are a bit more secure than they were - fingers crossed - so I've done what Hugo is asking people to do and set up a small monthly standing order, and also a separate donation to cover the cost of my next bottle of methyl. They can't order any more methyl from the compounding pharmacy they purchase from in the US until they cover at least part of the charity's shortfall - £5000, though I'll have to check that

sum.

Edit: Email checked, and the sum of £5000 is correct. B12d was recently awarded a Big Lottery grant to revamp the website, which is difficult to navigate and update, but no part of that grant may be spent on supplying methylcobalamin to people who need it.

[Polaris in reply to Hillwoman]

Thank you Hillwoman for this info. Have just donated.