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?

Best wishes

Tracey

Dumb and dumber with NHS money to burn.

As usual, I want to say that I acknowledge there are some clinicians who treat B12 patients correctly, this sorry tale below only refers to those who don’t.

See below another shocker of a letter sent to a B12 deficient patient whose doctor is perhaps hard of hearing and it seems, in need of a little reassurance from a Consultant Haematologist. Lets be honest, he just wanted someone else to reinforce his own ignorant stance.

image1 2

Here you can see that the GP has noted that his patient ‘developed symptoms which occur pre -injection and are relieved post-injection and is receiving the B12 injections every four weeks.’

Clearly I am no rocket scientist, however this statement is clear as day to me.

Put simply;

Patient is in pain and suffering, B12 injection is given, pain and suffering goes away –

With any other condition than B12 deficiency it might actually be that a GP listens to the patient, adds two & two together and thinks for themselves. (Actually it’s a similar story for thyroid patients too).

What should happen is this –

The GP makes the connection that the treatment given at a 4 weekly interval is just not cutting the mustard and so should think; let’s try every 3 weeks – or better still, I’ll ask the patient to tell me at what point the pain and discomfort return post injection and try and nip it in the bud for them by giving the injection way before the pain becomes unbearable.  Simple eh?

The reality is that those long years of medical training regarding listening to the patient and powers of deduction appear to go out of the window with B12 deficiency and two and two for many doctors, cannot be added up at all. They feel they have to call in the ‘big guns’ instead of making a decision all by themselves.

It makes no sense to a B12 deficient patient that such a letter even exists, it’s ridiculous and a complete and utter waste of time for all concerned, including the secretary and the postman.

The reason this letter does exist is because NICE Guidelines direct the GP to refer to haematologists;

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

In my opinion, It would be far more useful to add (fully educated) neurologists and psychiatrists to this section of the guidelines since B12 deficiency isn’t a blood condition. Many patients never experience the enlarged red blood cells (macrocytosis) which lead to this mistaken idea that a haematologist would be best placed to treat a neurological condition.

So the consultant haematologist gives us the answer in the first paragraph but then concludes something entirely ridiculous in the rest of the letter – all that time at university and still not able to understand something so simple, it’s a travesty.

The haematologist doesn’t understand B12 deficiency at all, doesn’t understand that serum B12 blood values when on treatment mean nothing. They will almost always be what a doctor considers ‘normal’ even 4 -6 months post injection or even oral supplementation. This serum value does not indicate what is happening at a cellular level.

Both doctors completely forget the patient’s suffering and ignore what the patient reports.

The haematologist, clearly without any correct training on B12 deficiency regurgitates the same old rubbish peddled by so many clinicians;

no value in increasing the frequency of injections’ – Even though they solve the problem!

these are recommended to be given only every three months’ – Check again – this patient suffers from neurological symptoms so should be treated on ‘alternate days until there is no further improvement’ and then the maintenance dose is 2 monthly. (still not nearly enough for many)

she is being significantly overdosed’ – Completely impossible.

highly unlikely that this is related to B12 deficiency or B12 administration’ – I refer this dumbo to the first paragraph where the enormous clue lies.

The haematologist suggests, in their infinite wisdom, that the patient be referred ‘to a medical clinic for investigation’ – doesn’t this beggar belief??!

The cost involved in these unnecessary referrals just because there is a gaping hole in the curriculum for all health professionals is phenomenal, but it’s not the haematologists money being thrown down the drain is it? They still get paid for not being able to read, research or comprehend simple information and for taking the time to commit this rubbish to paper.  Outrageous.

 

B12 Reminders

B12 is required by the body every day

B12 is a water soluble vitamin

B12 is not addictive

B12 cannot be overdosed

B12 is not a placebo

B12 is essential to life

 http://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/

If you want a crash course in B12 deficiency click here;  http://www.b12deficiency.info/what-to-do-next/

If you think all clinicians need to be educated on vitamin and mineral deficiencies click here;

https://www.change.org/p/dr-margaret-chan-who-niall-dickson-gmc-make-the-study-of-nutritional-deficiencies-comprehensive-and-compulsory-for-our-doctors-in-10-years-of-training-our-doctors-may-never-study-key-information

If you think our treatment would be better placed in our own hands please sign this too!

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

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

Please stop treating vitamin B12 deficiency as the poor relation to pernicious anaemia, this discrimination can seriously harm patients!

Autoimmune pernicious anaemia (PA) is just one of many causes but it’s clear that many doctors consider it to be the only serious cause of B12 deficiency and therefore the only one worth treating with B12 injections. This is due to lack of education on this subject which for most, is usually lumped in with anaemia. It is important to note that anaemia (macrocytosis) is not always present in B12 deficient patients.

In fact ALL causes of this debilitating condition require correct and adequate treatment and it is ALWAYS SERIOUS if it remains undiagnosed and untreated. Remember this condition attacks the central and peripheral nervous system, all body systems and all ages, not just elderly women. B12 is vital for the production of red blood cells and for DNA synthesis.

It seems the majority of doctors – worldwide, have only really learnt about PA and limited information at that. This means that they can neglect and under treat seriously B12 deficient patients. Up to 60% of patients who fail to achieve the correct diagnosis of PA due to the inaccurate diagnostic tests (gastric intrinsic factor antibodies & parietal cell antibodies), may be given an extremely poor deal along with those of us who do not have PA but are B12 deficient due to other causes.

The widespread use of Metformin and Omeprazole to name just two drugs, which stop absorption of B12 from food, cause untold damage. In the case of the diabetic drug Metformin, a doctor may confuse the tingling and numbness in fingers and toes caused by B12 deficiency with diabetic neuropathy, thereby potentially condemning the patient to serious and permanent nerve damage.

Neither of these drugs (and many others) fully warn the user, or the prescriber, on the ‘Patient information leaflet’ (PIL) of prolonged usage causing B12 deficiency.

Most patients with B12 deficiency will require B12 injections FOR LIFE, whether they have; coeliac disease, have had a gastric bypass, atrophic gastritis, Crohn’s disease, genetic mutations, advanced liver disease they all need injections and NOT the low dose cyanocobalamin oral tablets which doctors with lack of knowledge prescribe. Please note there are many more causes of this condition.

There are however some causes of B12 deficiency which CAN be temporary;

• Helicobacter Pylori – Provided this bacterial infection has been short-term and that
H-pylori lesions have not damaged the wall of the stomach or duodenum the patient can recover from this deficiency. If damage has occurred then B12 injections will be required for life.

• Parasites, such as fish tapeworms, or Giardia lamblia – ONLY IF these infestations are correctly diagnosed and effectively eradicated B12 deficiency can be corrected with appropriate treatment. Unfortunately parasitic infestations are hard to confirm as the diagnostic tests for these are also prone to flaws and frequently miss ‘host’ patients who would otherwise be able to absorb B12 from their diet.

Patients using stomach acid lowering drugs (H2 Blockers, PPI’s and antacids) have a secondary problem alongside a resulting B12 deficiency; a greater vulnerability to parasites which can unfortunately lurk undetected for years. These patients may have a very poor chance of naturally ridding themselves of these invaders who interfere with normal B12 absorption and compete for any B12 present in the diet. A healthy level of stomach acid is required to kill off these parasites.

Many B12 deficient patients, whatever the cause, are discriminated against and treated as second class citizens every day, in treatment terms, but a doctor who does not understand the myriad of causes of this condition could cause serious harm by assuming oral tablets will be absorbed and correct a deficiency.

If Type 1 and Type 2 diabetes patients were treated with the same level of discrimination, there would be uproar. Imagine doctors only allowing type 1 patients insulin but sending all type 2 patients off to simply look at a pig?

If you are a doctor who has learned only about PA and your patient does not test positive for IFA or PCA then you must still treat this patient properly whilst exploring other causes, and remember they may have a parasite that tests can’t detect.

•  If you can’t find the cause please remember this is not the fault of the patient

•  Treat their symptoms, and don’t assume it is ‘all in their mind’

•  Give them loading doses (6 injections over two weeks)

•  And if they have NEUROLOGICAL symptoms REMEMBER to continue their loading doses until their symptoms STOP IMPROVING, as per NICE and BNF Guidelines.

Best wishes, Tracey

The difficulties with vitamin B12.
We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal.
http://www.ncbi.nlm.nih.gov/m/pubmed/27009308/?i=5&from=b12

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

Information on PA Tests – http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

http://www.b12deficiency.info/what-are-the-causes/

http://www.b12deficiency.info/what-to-do-next/

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