A very bright light at the end of a very long tunnel – Letter 7

The letters page http://www.b12deficiency.info/letters/ is full of examples of poor understanding of B12 deficiency…. but letter 7 is very different!!

If you are struggling to gain access to correct treatment and you have similar problems to this patient, maybe your GP or haematologist could benefit from reading this, frankly, amazingly supportive letter?

‘…….a treated case of pernicious anaemia and subacute combined degeneration of the cord. She requires high doses of hydroxocobalamin to maintain her general well being, i.e. 1mg intramuscularly daily.… I will leave it to yourself to make enquiries and discuss whether her hydroxocobalamin can be fully funded by the NHS.’

 

Many of us have problems with accessing correct treatment. Many of us try desperately to raise awareness of B12 deficiency.

If you want to learn more and know of others who do too, please share the conference information with them – http://www.b12deficiency.info/conference-2016/

Letter 7 Haem-letter-1200

Please note; This letter came to me fully redacted so I have no idea who wrote this letter or which NHS Trust they work for.

If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

I have blogged about this before but it is worth revisiting because it is so shocking.

First of all please note, that if you have CFS or M.E., then your symptoms are also shared by B12 deficient patients. B12 deficiency symptoms can be reversed with B12 injections.

Secondly, the reason you may never have been tested for B12 deficiency may be because your doctor does not understand that macrocytosis/macrocytic anaemia (large red blood cells) is NOT ALWAYS PRESENT in B12 deficiency. In fact it can be very late stage when damage has already been done. This obsession with marcrocytosis is the focus of these harmful instructions to doctors.

The following screen shots are of NICE Guidelines – ‘Do not do recommendations’ for CFS/M.E.  It is a really tricky page to find (and has a habit of hiding) so here is the link;

https://www.nice.org.uk/donotdo/tests-for-vitamin-b12-deficiency-should-not-be-carried-out-unless-a-full-blood-count-and-mean-cell-volume-show-a-macrocytosis

For those who don’t know :-
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. We do this by:

  • Producing evidence based guidance and advice for health, public health and social care practitioners.

Taken from; https://www.nice.org.uk/about/what-we-do

There are other bullet point’s on this page but here they state ‘evidence based guidance ‘. I’d like to know what evidence backs up this particular set of DO NOT DO RECOMMENDATIONS for CFS and M.E. patients. I bet you would too.

There are many scenarios on this list which may be of interest to you but I am concentrating on the four which are connected to B12 deficiency. The date of all these recommendations is August 2007.

The first reads – Test for vitamin be 12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.


Screen Shot 2015-10-14 at 10.06.47

The second; Tests for folate levels should not be carried out unless a full blood count and mean cell volume show and macrocytosis.

Screen Shot 2015-10-14 at 09.59.49

No 3;  Tests for ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

Screen Shot 2015-10-14 at 09.59.36

And finally; There is insufficient evidence for the use of supplements such as vitamin B12, vitamin C, coenzyme Q10, magnesium NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME  have reported finding this helpful as part of a self management strategy for their symptoms.

Screen Shot 2015-10-14 at 09.59.22

Sinister?

Many clinicians incorrectly believe that B12 deficiency always goes hand in hand with anaemia. This ignorance is reinforced by NICE Guidelines despite the wealth of journals stating the opposite.

You will see that all the symptoms of CFS and ME are also those of B12 deficiency http://www.b12deficiency.info/signs-and-symptoms/

This misunderstanding causes patients harm. Many patient’s never present with or experience macrocytosis (large red blood cells).

It may be a very late sign in B12 deficiency and the MCV can appear normal in a patient taking high doses of folic acid. How many B12 deficient pregnant women remain undiagnosed?

See here from the NHS;

http://www.nhs.uk/conditions/anaemia-vitamin-b12-and-folate-deficiency/pages/introduction.aspx
‘Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.’

 There are many journals on this;

2012. Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers
(….”but its absence does not rule out B12 deficiency and it is not a specific marker as using it solely would miss 84 percent cases. Its normal range is 80-96 fl.20 MCV can be within normal range despite B12 deficiency specially with concomitant iron deficiency,….)
http://www.jpma.org.pk/full_article_text.php?article_id=3808

1995. Neurological complications of acquired cobalamin deficiency: clinical aspects.(“Pharmacological doses of folic acid reverse the haematological abnormalities (eg a MCV) of Cbl deficiency. This may allow neuropathy to develop or progress and make recognition of deficiency more difficult. “)
http://www.ncbi.nlm.nih.gov/pubmed/8534966?dopt=Abstract

To read more of these journals – or, perhaps we could call them EVIDENCE, please click to see the information compiled by @B12unme
http://www.twitlonger.com/show/n_1s0ae7m

If you have been diagnosed with fibromyalgia too, you may be very interested in this study which uses B12 and folate as treatment; ‘Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia.’
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0124648&representation=PDF

If you have never been tested and suspect a B12 deficiency please see; http://www.b12deficiency.info/what-to-do-next/

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

Please consider signing and sharing this petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?