Problems with testing Vitamin B12 Deficiency could mean the Martians send us back. #MedEd

NEQAS warns Drs and patients of serious problems with the Serum B12 test. A negative test should be over-ruled where the patient's symptoms indicate B12 Deficiency. http://www.ukneqas-haematinics.org.uk/content/PageServer.asp?S=581567449&C=1252&Type=G&AID=2

Problems were pointed out by NEQAS in 2006!
http://www.bmj.com/rapid-response/2011/10/31/further-cases-false-normal-b12-assays-intrinsic-factor-antibody-interferen

Oddly, the flawed serum B12 assay still remains the first-line test available to NHS Drs and it appears the majority of laboratories seem unwilling or are unable to provide better B12 tests. Thus, until such time as the serum assay is improved, the test can only ever serve as an aid to confidence in a clinically-based diagnosis of B12 Deficiency; it can never be a deciding factor. Relying on serum B12 alone would miss up to 34% of patients.
http://www.nejm.org/doi/pdf/10.1056/NEJMc1204070

Further reading on the unreliability of the Serum B12 test
http://www.b12deficiency.info/assets/nihs-vol-6-issue-4-p9.pdf

NICE currently provides a rather wooly guideline which infers that only a few patients present with B12 Deficiency within the normal serum B12 range. In light of the NEQAS warning above and the PA Society's careful log of huge numbers of patients recording initial, long-term and even life-long misdiagnosis, it has been shown that NICE has got it wrong.
http://www.pernicious-anaemia-society.org/phpbb/viewforum.php?f=1

Furthermore NICE provides an additional and separate, aged guideline which excludes patients with Chronic Fatigue Syndrome from B12 Deficiency testing if they do not have high MCV (Mean-Cell-Volume). It is therefore quite likely many patients with CFS are still unaware they have serious underlying, untreated B12 Deficiency. Please see this NICE "Do not do." and help get it taken down. It is appalling that this guideline means B12 deficient children (and adults) get diagnosed with CFS.
http://www.nice.org.uk/usingguidance/donotdorecommendations/detail.jsp?action=details&dndid=70

The following link proves it is unjust to cite high MCV as the only gate-way to a B12 Assay or clinical work-up for B12 Deficiency in CFS patients or any other patients for that matter.
http://www.b12deficiency.info/b12-testing.html

In fact, B12 Deficiency should NEVER be ruled out in the absence of haematological signs including Anaemia. Anaemia is generally a late presentation of B12 Deficiency and if early diagnosis is missed the inevitable neurological damage sometimes turns out to be irreversible. This is doubly tragic because contrary to common belief, B12 Deficiency is a scourge which affects all age groups. Even our children are being missed.
http://www.twitlonger.com/show/n_1s0ggga

B12 Deficiency can present at any serum level and it should be noted higher levels (that occur not necessarily as a result of supplementing) can indicate serious underlying disease.
http://www.ncbi.nlm.nih.gov/pubmed/23447660 This said, a Dr cannot rule out B12 Deficiency solely on the basis that the patient has been supplementing. There is a chance the patient chose to supplement because a serious underlying condition was making them feel under the weather! No credible evidence exists yet that the oral form of B12 protects and heals the nerves in all B12 Deficient patients.

The holotranscobalamin assay (Active B12 test) is said to be a better test than serum B12, but thus far there is an indeterminate grey area and B12 Deficient patients are still being over-looked. Using an indeterminate grey area as a gate-way to better B12 tests can have serious negative consequences. If you think the Active test has missed your B12 Deficiency, both patients and Doctors would be well advised not to rely on this test alone to rule out this insidious condition. Neurological damage caused by B12 deficiency can be irreversible. Its early psychological presentations cause disruption to the patient's mental health, ability to function and their family life. It is traumatic for both family and patients when Drs tell them nothing is wrong, having purposefully ignored clinical symptoms on the strength of tests that cannot provide gold standard evidence of efficacy. It is not uncommon for family relationships to breakdown irretrievably as the patient battles undiagnosed B12 Deficiency, unsupported by both Dr and family. Some patients end up not only alone and unloved, but homeless and vulnerable on the streets, engulfed in an ever worsening fog of mental confusion and pain. Others are sectioned and lost to institutions for the rest of their lives in depression, psychosis, dementia or catatonic state. The condition is highly hereditary and many B12 Deficient families record instances of suicide within their number. When nobody believes you are seriously suffering, death can seem a better friend.

A combination of Serum MMA and Homocysteine assays are amongst the better second line tests available to date but, again, still miss many B12 deficient patients. These tests are not easy for GPs to access in the NHS and nobody can understand why since they would undoubtedly prove cost effective. See "One hundred and twenty three medical appointments later"
http://www.twitlonger.com/show/n_1rlb2ci

Neither MMA or Homocysteine tests should be used alone to rule out B12 Deficiency. Even in conjunction, if the clinical signs indicate B12 Deficiency and the tests do not, a response to B12 loading doses and maintenance treatment should be ascertained at the clinical level.

For many patients, life-destroying psychological symptoms are the only presentation of a serious underlying B12 Deficiency for years! Space agency NASA would do well to bear this in mind in their new research project which happily includes investigation of the genetic errors associated with B12 and folate and their impact on astronauts health in space. I have never really thought about it before but maintaining optimal mental health on interplanetary flights has surely got to be reason enough to research B12 and folate! It would be no good sending B12d lunatics to Mars, they would never get past immigration.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3825629/pdf/11306_2013_Article_556.pdf

To recap, there is still no gold standard B12 test, thus, many cases of B12 Deficiency can only be determined by full knowledge of signs and symptoms. A helpful protocol compiled by an NHS GP can be found here http://www.b12d.org/sites/default/files/files/B12_Deficiency_protocol_2013-09.pdf

Read more about "forgotten" B12 Deficiency here
http://www.b12deficiency.info

Even if you do not suffer from B12 Deficiency yourself please help us by sharing this information as widely as you can. This wonderful documentary below has been viewed over 100,000 times and explains why it is so important our Doctors re-think B12 Deficiency. It is crucial that we find the Doctors and patients that have no idea B12 Deficiency is wreaking havoc in the lives of so many. Please help our children find the freedom of good health denied for so long.
http://m.youtube.com/watch?v=BvEizypoyO0&desktop_uri=%2Fwatch%3Fv%3DBvEizypoyO0

Thanks to all those whose links I have purloined for this page.

Thanks to Stuart Gibson at Twitlonger. Without the help of this great App, I would never have been able to get so much information across to Docs about B12d.

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