Pernicious Anaemia Society

How much does a child have to suffer before being given B12 injections ?

My child , who is now 14 , has from birth , been diagnosed with every symptom of B12 deficiency and pernicious anemia which includes : Low birth weight , failure to thrive , head circumference on a lower centile than height and weight , cognitive imparement , delayed development , dyspraxia , proximal more than distal muscle weakness , headaches , anxiety , vision impairment , hearing impairment , myopathies and myelination in blood tests , anemia , pneumonia , lethargy , glandular fever type symptoms ( monospot negative ) , she has had falls where she has hurt herself ( she says that she feels wobbly ), swollen tongue , pins and needles , balance problems , swollen fibres on a slide when a muscle biopsy was done ( the doctor said it was a possible artefact ) , swallowing difficulties ,mallocclusion and skeletal descrepancy of jaw , starring into space and unresponsive to her name , extreme wobbling and innability to hop , sudden extreme weight loss and lack of appetite

Apart from the diagnosed problems , lots of other symptoms have conveniently been ignored which include : Inability to eat wheat , gluten fats including all dairy products , egg and vinegar , swollen feeling around her spleen which she says is sometimes sore to touch , yellowing skin , tilting sensation , missed periods , spiking and thudding sensations around her heart , itching scalp , dizziness , tingling and burning sensation in the extremities , feeling cold , extreme lethargy , innability to taste food , waking up choking on vomit after eating bread , breathlessness , heartburn , black stool , constipation

She went through several unusual and traumatic proceedures which traumatised her while she felt very ill . Not one doctor tested her circulating iron , transferrins or saturation level in 13 years . They only tested her ferritin and never did an iron study . She has felt ill her whole life .

When she went to a swallowing clinic for the first time she was given a piece of digestive buscuit and a spoonful of yoghurt to assess swallowing . She had a drooping bottom lip and had constant drooling . I was advised to give her a reward chart for lip closure and swallowing .

Through all her suffering , she was asked to do two half hours of vigorous exercise per day which made her ill . When I rand the phisiotherapist , she said I must carry on with the exrcise regime . She had avised trampolining and my child came to a grinding halt on the trampoline and it took three adults to get her down safely as she could not bend her legs .

When I took her to the children`s hospital in Liverpool , the doctor tapped himself on the head and told me her symptoms were probably psychosematic and said that he would " put it all back with the phisios " . My child was very ill and when we left the hospital she broke down in tears .

In 2013 , I was told that she had an "iron deficiency" . The doctor told me to give her ferrous fumerate and a daily multi vitamin. A few months later , another doctor diagnosed anemia and told me to give her ferrous fumerate for at least another 6 months . After a year of a daily multi vitamin which included 100% of her daily B12 need , we went to another hospital to have an ECG and blood tests . The doctor told us that it was too late to do an ECG (4pm) . The blood tests were taken which included B12 , folate , iron study coag and some others . A few days later the doctor rang to say that there was not enough blood for some of the tests ( just so happened to be B12 and folate ) . We had to go back and give more blood . She felt very sick afterwards and every time blood tests are done she looks awful . I am stunned at how much blood had been taken from her circulatory system . When the result came back , her level was 331 ( this was after a year of a daily multi vitamin with 100% B12 daily need )

Doctors were so mean to my child at appointments that I made a formal complaint and asked the executive to include an externel child protection agency . They failed to do so . Instead the team of doctors who had been "looking after her " , got together and raised a phony inquiry about me . My child was then abused by social workers sent from Legal Gatekeeping Services . They threatened and bullied a sick child . She had nightmares about being operated on and being attacked by dogs for complaining about the way doctors treated her . We had to go to court where an interim care order was put on her . She started to feel suicidal and when I told the social worker about the effect she was having she just looked striaght ahead , rolled up the window of her car and rolled away .

We are both in a state of shock . I am very concerned because it seems , according to Sally M Pacholok`s book , " Could it be B12 ? " , symptoms can include inappropriate sexual conduct . There seems to be several clinics at Alder Hey Children`s Hospital who seem to be interested in this subject .The chief executive of Liverpool , Mr Ged Fitzgerald was in charge at Rotherham and says that he knew nothing of what was happening there . I am concerned that the decision not to test B12 deficiencies properly could be seen as sexual grooming of children . Our GP`s reception manager has told me that intrinsic factor and pareital cell tests are not on the system and so there would have to be a low B12 seum level before they would be allowed to test . Who made the decision to not include these tests ? Is this maladministration ?

14 Replies

I am sorry your child, you and your family are having such a distressing time of it. We expect doctors to know but even doctors are unaware of the devastation caused by B12. This is a disturbing video I have seen before. You may have already seen it.


There used to be in London, a unit specialising in autistic children with b12 deficiency - it was closed down because doctors didn't 'believe' it worked - that was all the idiots who want to see 'peer' reviewed research before they will 'believe' anything but won't do the research.

I tried to contact one of the doctors that ran it (no response) and had contact with one of the parents of the children who lost treatment (but who is still getting methyl on the NHS!!!! - wait for the noise) to find out where the other units were - there was a total of 5 worldwide. Silence. It would seem these people are only bothered about themselves. I'm alright, Jack is a genetic trait in the UK.

It doesn't matter how sick your child gets. It doesn't matter if they do find a b12 deficiency - they don't understand the condition so they won't treat acknowledge they have made a mistake.

I was going to put a photo up of when I had my b12 blood test taken but I can't find how to do it - my vein blew and made a right mess. But they didn't read the blood test and despite the vein, the obvious anaemia, and me slowly becoming crippled over the next year, they said it was 'all in my mind.'

Will have to put our minds to this one. For the time being you keep a low profile. I think if the Ashya King case showed anything it showed that these people will do anything - and usually they get away with it.


I was at a conference on Saturday and Martyn Hooper, of the PAS said that it is nowadays very difficult to get a diagnosis of B12 deficiency or PA.

I agree that nowadays doctors have lost their initiatives in treating patients by their clinical symptoms. It's all down to where the blood test level is which is very wrong. They just don't know how serious a deficiency is.

I think I would be apt to give my child Vitamin B12 (methylcobalamin) in sublingual form (spray or lozenge that dissolves in mouth). You seem to have turned all stones for your child and no-one is paying attention.

We cannot overdose on Vit B12 as excess is excreted in our urine. The body takes what it requires and excretes surplus.


The new BMJ article released in September explained exactly why it is difficult to get a B12 diagnosis and how to overcome it. There are solutions out there and some scientists are backing us. It just needs to be put in front of the medical professionals with more direct action.

For children B12 deficiency is more dangerous than with adults. The central nervous system is not fully formed until they are about 10 years old. If the damage starts before then it is being degraded before it has a full mechanism in place.

It may well be that the OP has to resort to self medicating - which is a ridiculous position to be in when you are talking about neuro damage - but they are then leaving themselves open to further condemnation by the authorities.

... and just to make the OP feel a little better - it is standard practice in the NHS to attack the complainant in whatever way they can. I was attacked and defamed and all kinds of trouble caused, and I know another patient who had stomach surgery and should have been given b12 but wasn't ended up in a coma. Because the husband complained the police were called and the hospital accused him of giving her meds that he shouldn't - they said the blood tests proved it. Further tests proved there was nothing in the meds and they couldn't understand why the first result was wrong.

A complaint to the Ombudsman (please disband this biased, biogoted and corrupt system) showed there was no case to answer - even though the woman had gone longer than their own 'expert' said it was possible to survive.

If anyone doesn't think the NHS is corrupt then they haven't got near the sharp end.

A catch 22 situation as with all of us....


Feel I need to add this shaws ;)

It may no longer be difficult to get tested for B12 deficiency if you are an OAP now shaws as my Mum found out last week, way before today's announcement on TV News of Doctors getting £55 for every Dementia patient they discover.

Last week Mum's Doctor called to check Mum's skin lesion and said she looked 'not quite with it' and was she OK ? (Mum was only tired,) she was perfectly OK the night before and that morning too. He also checked if she'd had her flu injection.

Doctor said I'll do you a B12 test and some other vitamin one's, I nearly fell off my chair with shock. I'm thinking back to last week and now wondering if he was trying to earn his £55 bonus.

Funny thing was, I cringed when I spotted Mum's B12's and vitamin D3's pills on display on the cabinet behind her. I don't think the Doctor spotted them. :S


Only now are they realising that dementia/alzheimers is costing the health service an astronomical sum, so they want to try, now, to reduce the costs.

The best test for B12 would be the Active B12 which tells exactly what's in the cells, rather than the B12 circulating in the blood stream. At least they will find out who is deficient when they take account of the clinical symptoms, rather than telling you that you are in the 'normal' range even if it is the lowest on the scale. I know of only one hospital but maybe others will follow suit.


Wonder which test my Mum was given shaws ? Must get her results.

So now people with Dementia's will be found (hopefully,) more quicker, but what about the other low, but 'within range' B12 poorly sufferers out there ?


They will eventually be determined when it's too late. Also there are other serious diseases due to B12 deficiency which are not even known by doctors themselves who develop these illnesses. You have probably seen this video before which I think is truly shocking.


But what will happen when they diagnose dementia - they bring the b12 serum up to normal and forget about it for 3 months.

It's nothing like enough.

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Maybe commonsense will prevail.


Yes! shaws it is an amazing eye opener video, keep it in the limelight, people need to know about 'B12 deficiency' and 'low B12' which can be just as dangerous.

The video (near to the end,) shows so many illnesses linked to 'Low B12' and' B12 deficiency.'


Can you tell us anymore about the muscle biopsy ie where was it taken from, why was it taken and any other info?


The NHS is certainly corrupt, the so called Dr's are shockingly bad in most areas, I work for the NHS, I deal with patients that are seen by Dr's and need emergency and urgent transport to hospital. Over the last 13 years I have seen many shocking situations of people that have been seen by the Dr, many Dr's do not even do basic observations and more often than not the patient requires emergency treatment only to be left at home when the Dr request a four hour response. I no longer have any faith in Dr's and that includes my own, I also have experience of seeing many rheumatology specialists over the years and they are no better, it is beyond belief how they get away with it. Sorry, as many of you say: rant over!!


I too am sorry your child and your family are having such an awful time, there are many ways of supplementing b12, I think probably your only chance of helping your child Is by going down that route. I wish you all well and good luck x

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