East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

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East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes,Tracey

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10 thoughts on “East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

  1. Hello, first of all, thank you, for the website, the information on it, the links. I’m a Dutch woman living in France, my B12 has been tested at 209 (but i was occasionally taking B12 supplements already), B9 is 11,7 so there’s nothing special there. My doctor ordered the testing of B12 because of my being vegetarian in combination with my symptoms (dizziness, thick tingling tongue, a newly developed stutter and general trouble in getting to words, other memory problems, heart palpitations, and just feeling very, very tired) BUT my doctor’s on vacation now and her replacement (monday 15 jan) had one look at the test results and said YOU’RE FINE. I pointed out to him that 209 is maybe a little low and could we do a follow up (I’d looked up that an methylmalonic acid test might give a better idea) and he said he’d never heart of “acide méthylmalonique”, but looked it up on his pc in front of me and then read out lout what it said. Basically it came down to the patient will show signs of seriously low mental capacity (which he explained as having an IQ of 90) and my memory or speech problems were obviously nothing as serious. And he continued saying that B12 deficiency is very unlikely in France, and after all my levels were fine, so my symptoms were probably due to stress. Stress!!!!????
    I felt fobbed off, and decided to start taking my b12 and my b-complex pills (alternately) on a daily basis. This way I thought I could hang on until my own doctor comes back (on the 15th of feb) and go back to discuss the results with her. I now no longer feel dizzy, nor am I so tired, though my tongue still tingles and cognitively I wouldn’t be able to say if things have really improved. My question to you is : DID I DO WRONG? Has my “self-medicating” made follow-up testing useless? What should/can I do untill my doctor comes back?

    I thank you for any advice you could give me.

    • Dear Dianne, you may be aware that you can buy injectable B12 OTC in France. It is advised that you get your first injections from someone medically trained, this is due to the rare occurrence of anaphylaxis. Perhaps the pharmacists offer this service? Injections will help you enormously. I hope you were able to get through to your own GP. Best wishes Tracey

  2. In my area (Weston-super-Mare) the reference range being used is 180 – 900. My result was 255 about a month ago. The GPs at my surgery have done endless blood tests but will not even countenance the underlying problem leading to my episodes of ‘falling over tiredness’, aching and tingly arms and legs and persistent brain fog over several months being a B12 deficiency. Even a sore tongue was dismissed as irrelevant! Fortunately I’m getting some relief from a sublingual methylcobalamin spray supplement – my brain fog seemed to suddenly improve after about a fortnight of heavy supplementation and I feel a lot better a month on – but I’m very angry that my concerns and clearly presented arguments are met with a wall of obdurate denial. Even better – the local area has a high proportion of retired people and care homes; I can’t help but wonder what this reference range is doing to people at risk of dementia! If you can believe it, the latest GP I saw at my practice has even annotated my file to the effect that if the latest round of blood tests show no significant issues I should be investigated for HIV infection – talk about none so blind as those who will not see!

    • Paul I am appalled by your experience and as I’m sure you realise it is quite common to be treated in this way. Please can I suggest (if you have the energy) that you furnish your GP Practice with the documents found at point 4 here http://www.b12deficiency.info/what-to-do-next/ which should help them to understand the harm done by not treating patients with ‘within range’ results. I am glad you are finding some relief with your supplement however you should not be denied injections.
      Can you speak to the practice manager? Bets wishes Tracey

  3. We are in East Lancs, my husband has had neurological symptoms in his legs and pain in his legs. MS has been ruled out. I requested B12 blood test amongst others, when he rang for the results he was told they were normal. His B12 is 220, so I have commenced injections. I hope we see some improvement soon!

    • Hi Freda, my B12 was 216 when I was diagnosed but in my area the low reference range is 220. Can I point you towards this page http://www.b12deficiency.info/what-to-do-next/ for more help especially see point 2, ferritin (iron Storage) and folate levels are very important with low B12. They need to be optimum to be able to gain the best from the B12 injections. It is also advisable that a B complex is taken too.

      • Hi I had a result of 220 was told it was normal – diagnosed with fibromyalgia and I wasn’t aware that different parts of the country have different ranges. Is there a list of what is considered low in the uk? Just thinking of going elsewhere to get tested, failing that I will go to Spain to buy some jabs!

  4. My child has been put through hell . Apart from being left to suffer for 14 years from birth , being diagnosed with nearly every symptom of B12 deficiency known to man . Up to now , not one doctor has suggested a methylmalonic acid test . Not one doctor has managed to join the dots and all seem so concerned about possible litigation are playing a game of “lets throw the ball so she can`t catch it ” and are so narcissistic are prepared to let her carry on suffering rather than give her methylcobalamin injections, appologise and offer her some compensation after destroying her childhood , her health and as far as I am concerned , her life. She has been endlessly sent away even when she complained of thudding and needle pains around her heart , feeling yellow as she put it ( her skin now looks yellow ) , falls and more lately due to their lack of interest suicidal feelings .
    OK , here goes from birth :- Failure to thrive , poor head growth , wobbling and unable to hop , pneumonia at age 4 with haemoglobin level of 11.6 ( after feeling wobbly and taking a terrible fall on her head in schoolyard), dyspraxia , learning difficulties , cognitive imparement , mallocluded jaw with skeletal discrepancy , developmental delay , proximal muscle weakness , hypotonia , anxiety , anaemia , pineal cyst , tingling in feet and hands , balance problems , visual disturbance , taste disturbance , sudden weight loss .
    There are more symptoms which have been diagnosed .
    I am disgusted by the way my child has been treated and still is being treated . I was told she had an iron deficiency and was asked to give her a daily multi vitamin in March last year but no one told me which multi vitamin she would need . A few months later a doctor in a different hospital told me she had anaemia and to give her ferrous fumerate for at least another six months . She had her serum B12 measured after this and I was told it was in the normal range What a trick ! She should have been offered a methlmalonic iron test of her urine . At the beginning of August this year they put her back on ferrous fumerate . She is turning yellow , is tired and sleeps in the afternoons , feels dizzy when she stands up and gets heart pains and still no one has had the guts to offer her injected B12 , even as a trial .
    I have been reading for a long time now about iron , trying to find ways of helping her get more iron into her system . I rang the hospital last year and warned them that if it is B12 and it is not treated it can be fatal . No one did anything and so I assumed that I was wrong . I have recently found and read information on websites about B12 and am horrified . If I could I would jail some of the doctors for life threatening deliberate negligence .

  5. Absolutely ridiculous. I wonder what data there is to show levels of dementia, heart attack etc. I would be interesting to see the difference between east lancs and the county with the higher ranges and also Maybe a couple of towns in canada and japan. I am sure those countries have one reference range.

  6. Reblogged this on Jacqueline Mckenzie's Blog and commented:
    I will compare this to Japans where patients are treated as deficient if their level falls below 500. They are killing us one by one here through ignorance and neglect. There is a silent epidemic going on. Get your levels checked, know the references ranges are wrong and the tests are not accurate. If you have any symptoms make sure you get treated.

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