For some bizarre reason, if you happen to be unlucky enough to be under this South Wales NHS Trust and you are deficient in B12 you might have Hell’s own job ever being diagnosed.
Their shockingly low, lower reference level of 130 ng/L for the serum B12 test has potential to make life very dangerous for patients under this Trust.
We already know the serum B12 test is seriously flawed – but this low level is beyond belief. For more on this please click here.
How can GP’s in this area diagnose and treat patients who are severely B12 deficient when the lab they use has such appallingly low reference ranges?
In 2006 the lab range at this Trust was 170 ng/L -900 ng/L, still very low but not as shocking as this. In their infinite wisdom, someone thought it would be a great idea to lower it by another 40 points!
Why isn’t there a standard assay Kit used? Why isn’t the lower reference limit, worldwide, at least 500 ng/L?
GP’s in this area need to act rectify this, they must treat the symptoms of B12 deficiency and take the serum test results with a bucket of salt. It would of course be pertinent to suggest they recall any patients with a B12 serum test result under 500 and reassess them all. Tragically though, ‘pigs might fly’ before this happens.
The region covered by this Trust is being astoundingly mislead, leaving many patients at a loss and continuing a futile search for the reason for their depression, cognitive decline, failing eyesight, infertility, pain and exhaustion.
This deficiency is an epidemic but it is must be reaching epic proportions here.
Mental health units must surely be fit to burst.
How many misdiagnoses of MS, ME, CFS, Autism, Post natal depression, Bipolar, dementia, etc are there here?
How many ‘early onset’ Alzheimer’s cases are there?
How many patients are housebound and isolated?
How many patients are unable to walk unaided?
How many are unable to look after themselves or their children?
How many are no longer able to work?
How many babies are born with neural tube defects?
How many miscarriages?
Below you will see a result of 108 ng/L. This patient is clearly on their knees in deficiency stakes, however they were unlucky enough to see a doctor who didn’t think it necessary to treat this level and made them wait to be retested three weeks later. The new level unfortunately was recorded at 138 ng/L so BINGO no longer deficient under Cardiff and Vale Trust!
This patient’s symptoms include – persistent daily nausea, daily headaches, palpitations, fatigue, tingling in fingers, inability to hold head up, poor concentration, inability to finish sentences. This patient also had a positive intrinsic factor test. Finally after some strenuous persuading from a desperate patient, the doctor reluctantly agreed to give this lone parent loading doses despite being told they weren’t actually deficient and that all the symptoms could be attributed to STRESS.
Cardiff and Vale NHS Trust your lab is failing patients and costing the NHS and society a fortune!
If you chose to make medicine your career because you wanted to save lives, then please ignore B12 serum test results in those who are symptomatic and please start listening to your patients.
Please visit www.b12deficiency.info
Raising awareness; https://www.b12info.com/how-you-can-help/
Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counterBest wishes, Tracey
Cardiff and Vale NHS Trust we have a HUGE problem! Lab range for serum B12 130ng/L – 900ng/L
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Tracey – I totally agree and had a very interesting conversation with my GP about this very thing on Friday (8/11/13) and was astounded and very worried by his attitude and indeed the ranges for testing in my area (Cardiff and Vale) . I know know the reason why I haven’t been treated correctly over the past few years is solely down to these very low ranges – my doctor has admitted it to me face to face after I refused to move from his waiting room until Id said everything I needed to . He admitted to me they’d been fined twice for treating patients outside of certain ranges ( not sure for what diseases ?) and now anyone who was close to the lower end didn’t get treated . I asked why I wasn’t as I am below the 130 for b12 and have neuro damage , have lost my businesses , my life and much more – he said he was afraid of getting fined again , because as a partner it would come out of hs pocket . This to me was a very brave admittance , but one that doesn’t help me , nor the 100`s of others being denied treatment . The worst thing about all this is that because of the worry about being fined , the low ranges and ignorance about B12 treatment (in my case) , the GPs simply glance at the blood results , see a figure and not much else . No consideration of the other symptoms , how long its been going on , or in fact what will happen next !! I received an APOLOGY from him (too late !!!) for misreading blood results and all the blunders they have made over the years. We discussed so much more that is too lengthy to post here , but I left feeling somewhat satisfied as he has now agreed to take on board and accept all the information I give to him about B12 . I really think he is very worried about his lack of knowledge and more so the fact that he knows I know hes made mistakes . I hope he has the sense to try and put it right now – Im not backing off either , so , Ill be watching him !!
I will repost this on Facebook for all to see . A small but important step forward in trying to change GPs awareness of this condition . ??
Completely and utterly stunned by your story Nicola!
Absolutely shocking. Who is actually fining the GPs though ?
Many thanks as always.
Hello:
First of all I live in Canada, where lack of B12 knowledge, is just the same. No one had ever done a B12 test on me until I was in my late 60’s. I later saw the results were 200 (198 – 615) but was not advised about it. The doctor later said that she would have warned me, when it dropped below 200. I immediately went online looking for information, knowing nothing about this problem, but had some kind of nerve damage in one foot. And since I’m Diabetic, it was ignored. This was in 2011.
Looking around online, I saw a NEW book for sale, Could it be B12? by Sally Pacholok and Jeffrey Stuart and ordered it and was astounded at all the research poured into this book by a nurse who worked in the Emergency Dept of a large hospital in Michigan, USA. She saw so many patients arrive there with obviously low B12 levels and no one ever checked them. I didn’t ask my doctor for anything, I just went and bought a bottle of sublingual Methylcobalamin, right away. I didn’t want injections of the usual Cyanocobalamin (contains Cyanide) and the nerve damage had just started in my other foot. This, thankfully never developed afterall.
No need to expect anything from your doctor, you can take care of this yourself. Another B12 book came out by David Brownstein MD, where he says not to worry about what level your B12 blood tests get to, as his are usually around 2,000. He said your doctor will be alarmed but it’s okay since B12 tests are not accurate anyway. They only show what is floating around in the blood and NOT what is active inside the cell, in the Mitochondria. Good luck. Bonnie
Unfortunately, I live in Cardiff and despite having a huge number of symptoms, my GP won’t treat me as my B12 level is 133 which is considered to be three points above the bottom of the normal range. I constantly feel exhausted and regularly feel faint. I have brain fog most days, upset stomachs, weight loss and palpitations. I’m in the process of exploring having the injections privately as I can’t go on feeling so ill all the time. I’m beyond frustrated!
Dear Rebecca, I am so appalled for you, please see this page where the information on the NHS website, the NEQAS report and other journals will educate your GP as to how he should be treating you! http://www.www.b12deficiency.info/what-to-do-next/#Yourresultsandwhattheymean If you need any further help please email me at tracey@www.b12deficiency.info.
I have injections privately my b12 became low due to extensive radio and chemotherapy, nothing is as bad as the feeling of when my b12 drops my gp gave me no option other than tablets and they just don’t work . So I paye and have the injections ..
Hi, I’ve been told by my gp that my b12 levels were fine. They gave me the figure of 243 but I’ve no idea what this means. My iron came back at 6 so they prescribed meds. After feeling much better for a few months after finishing my course of iron, I’m now feeling exhausted again. Help!
Please take the documents at point 4 here to your GP; https://www.b12info.com/blog/what-to-do-next/
Best wishes Tracey