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?

 

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/

‘Vitamin B12 injections are a placebo’ the ignorant doctor said . . .

Obviously to those enlightened health care professionals who understand the role of vitamins and minerals, this commonly spoken phrase is of course a completely ridiculous statement.

To those of us who suffer from B12 deficiency it’s infuriating to be told this by someone who studied long and hard to become a doctor.

The mere fact that some of our doctors haven’t a clue about the very foundation of all human and animal life is astounding.

I learnt about vitamins and minerals at school, it appears that for some doctors this may constitute the entire learning on nutrition – we really are stuffed if our particular GP happened to be ill that week. I don’t actually remember much of the detail but I do remember how important they are. Sadly it seems that even some of our newly qualified doctors replace their old knowledge with the following ridiculous ideas-

Vitamin B12 = Broccoli
Vitamin B12 injections = Placebo
Vitamin B12 deficient patient = Lazy, whiny, hypochondriac requiring antidepressants and a thorough dressing down.

Vets, in contrast, are taught properly on this subject and know when an animal is deficient. How strange it must seem to vets that some doctors try to treat this condition with antidepressants!

A placebo is ‘a substance that has no therapeutic effect’ or an ’innocuous or inert medicine’

Food is ‘any substance containing essential nutrients such as vitamins and minerals’, or ‘a nutritious substance that people or animals eat or drink or that plants absorb in order to maintain life and growth’.

B12 is essentially food, we starve without food, quite quickly as it happens.

‘Starve – to suffer or die, suffering or death caused by lack of food’ Our cells starve without B12.

Quite simply – we need food everyday to sustain a healthy life, we need all vitamins and minerals regularly to maintain optimum health. We cannot survive if we eat just once every three months so why do some doctors think we can manage on any vitamin if we were only able to access it once every three months?

Vitamins are food, they are essential to life, accessing vitamin B12 is very complex so injections are required unless the deficiency is diet related.

‘Dear Health Care Professional please learn this and act accordingly, your patients need you to update your knowledge urgently!’

The text below is taken from NHS Choices (link below) -It’s a shame it is misleading and incomplete in parts. I have taken the liberty of adding some improvements in BOLD CAPS. Although thankfully, nowhere, does it say ‘Vitamin B12 is a placebo’!

http://www.nhs.uk/Conditions/vitamins-minerals/Pages/vitamins-minerals.aspx

Vitamins and minerals are essential nutrients your body needs in small amounts to work properly.
Most people should get all the nutrients they need by eating a varied and balanced diet. HOWEVER, IF YOU CANNOT ABSORB  B12, YOU WILL REQUIRE HYDROXOCOBALAMIN INJECTIONS FOR LIFE IN ORDER TO ACCESS THIS VITAMIN. If you choose to take vitamin and mineral supplements, be aware that taking too many or taking them for too long can cause harmful effects. THERE IS NO KNOWN TOXICITY OF VITAMIN B12, IN FACT HYDROXOCOBALAMIN IS SAFELY USED IN LARGE QUANTITIES AS TREATMENT FOR CYANIDE POISONING. 
Some people may need to take vitamin and mineral supplements. For information on who could benefit from supplements, see Do I need vitamin supplements?
The pages in this section contain advice and information about vitamins, minerals and trace elements essential for health, including:
▪ what they do
▪ how much you need
▪ what happens if you have too much
▪ safety advice about supplements
For information about nutrition for children, see vitamins for children.

What are vitamins?
There are two types of vitamins: fat-soluble and water-soluble.
Fat-soluble vitamins
Fat-soluble vitamins are found mainly in fatty foods such as animal fats, including butter and lard, vegetable oils, dairy foods, liver and oily fish.
While your body needs these vitamins every day to work properly, you do not need to eat foods containing them every day.
This is because your body stores these vitamins in your liver and fatty tissues for future use. These stores can build up so they are there when you need them. However, if you have much more than you need, fat-soluble vitamins can be harmful.
Fat-soluble vitamins are:
▪ vitamin A
▪ vitamin D
▪ vitamin E
▪ vitamin K
Water-soluble vitamins
Water-soluble vitamins are not stored in the body, so you need to have them more frequently. BINGO ! LOOK AND REMEMBER IGNORANT DOCTORS – WATER SOLUBLE VITAMINS ARE NOT STORED IN THE BODY SO YOU NEED TO HAVE THEM MORE FREQUENTLY!!!!!
If you have more than you need, your body gets rid of the extra vitamins when you urinate. As the body does not store water-soluble vitamins, these vitamins are generally not harmful. However, this does not mean that all large amounts are necessarily harmless.
Water-soluble vitamins are found in fruit, vegetables and grains. HANG ON A MINUTE,  VITAMIN B12 IS WATER SOLUBLE AND IS ONLY AVAILABLE FROM ANIMAL PRODUCTS!

Unlike fat-soluble vitamins, they can be destroyed by heat or by being exposed to the air. They can also be lost in water used for cooking. This means that by cooking foods, especially boiling them, we lose many of these vitamins. The best way to keep as many of the water-soluble vitamins as possible is to steam or grill foods, rather than boil them.

Water-soluble vitamins are vitamin C, the B vitamins and folic acid. Folate is Vitamin B9
There are also many other types of vitamins that are an important part of a healthy diet.

Please visit www.b12deficiency.info

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-counter

Cardiff and Vale NHS Trust we have a HUGE problem! Lab range for serum B12 130ng/L – 900ng/L

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 – http://www.ukneqas-haematinics.org.uk/content/PageServer.asp?S=581567449&C=1252&Type=G&AID=2 but this low level is beyond belief.

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; http://www.b12deficiency.info/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-counter

photo 1d photo 2d

B12 ignorance Australia….

This Australian doctor took the precaution of getting the patient to sign a waiver before he would administer B12 injections. He also makes some interesting/ridiculous notes in the patients records.

The GP sees that the patient benefits greatly from the B12 injections and records that the effect ‘lasts a few days and then wears off’.  In trying to educate the GP, the patient has given a copy of the excellent book ‘Could it be B12?’ as a reference.  Despite his own gross ignorance of B12 deficiency the GP disparagingly states that the author is ‘not qualified’, and also ‘written by a nurse’, ‘anecdotal stories’ ‘unsubstantiated claims’.

It seems this GP needs to brush up on his reading skills, he does not understand the importance of this exceptional, definitive, life saving book which is not only co authored by a highly qualified and experienced nurse – Sally Pacholok R.N – and her husband Dr Jeffrey Stuart. Sally is also B12 deficient.

This book is brimming with facts, advice, journals and case studies. This GP sadly missed an opportunity to update his appalling lack of knowledge.

You’ll note that he also rolls out the same old lines regarding  ‘treating possible underlying depressive illness’ and ‘placebo’. Predictably he is also concerned about ‘frequent injections despite high serum levels’.

I wonder if the following statement has ever appeared in any of his other patient’s notes –

‘I advised patient of my concerns of prescribing the following cocktail and I got them to sign a waiver  ’ Olanzapine, Lithium, Lisinopril, Simvastatin, Sodium Valporate, Bendroflumethiazide’ . . . . .  I seriously doubt it!

It seems many GP’s are totally unconcerned when they give out such a mix of chemicals, and it’s perplexing that so many get so jittery when prescribing an essential, inexpensive vitamin of which there is no known toxicity.

 

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To see more letters please visit http://www.b12deficiency.info/letters

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-counter

Raising awareness;  You can help!