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.

An obvious history of neglect – please help us to buy injectible B12 OTC, many doctors cannot or will not help us!

‘Somataform autonomic dysfunction in the form of neurosis’ or longstanding B12 deficiency?

Below you will see this patient’s medical history is clearly affected by B12 deficiency and yet over 30 years on, still NO ONE will listen and treat her accordingly.

You will see that from an early age (4 years) there are clear signs of B12 deficiency which sadly elude each clinician the patient comes into contact with – instead of vital B12 treatment this patient was subject to repeated consultant appointments, repeated accusations of hypochondria, desperate under treatment and over medication of drugs. Weigh all this up against ampoules of B12 costing just 55p –  the cost is phenomenal not just in life terms to the patient and her family –  but also the cost to the NHS.

If all our doctors left medical school with a full grounding in the very basics of Vitamins, minerals and enzymes then this enormous waste of NHS funds demonstrated here could be largely avoided.

The first red flags of B12 deficiency in the summary of notes are that the patient suffered;
• Faecal soiling
• Constipation
• Behavioural concerns

The treatment the patient received was;
• Lactulose
• Referral to a paediatrician
• Referral to educational psychologists

What the patient required was – to be tested for B12, folate and ferritin and then appropriate supplementation.

At age 22 the patient presented with;
• Palpitations
• Dizziness
• SOB (Shortness of Breath)
• Sweating
• Nausea

The treatment received was;
• Detailed cardiological investigations
• 24h tape and Echocardiogram
• Beta blockers – The clinician’s findings were – ‘No abnormalities detected’
• Referral to a psychiatrist
• Offered appointments to consider SSRI’s – The clinician’s findings were – ‘somataform autonomic dysfunction in the form of cardiac neurosis’

What the patient required was, to be tested for B12, folate and ferritin and then given appropriate supplementation.
The doctor summarising the notes states that ‘The issues regarding her B12 started around 2000’ Finally the patient is tested for the real problem.
• A ‘routine’ blood test noted a raised MCV of 102
• B12 level was recorded at 160
• A few months later these tests were repeated
• MCV recorded at 103
• B12 at 211 ‘slightly low’

Instead of appropriate treatment for low B12 the patient is;
Referred to a cardiologist to ask an opinion on palpitations and this led to a referral to a consultant haematologist
This clinician notes the low B12 and a strong family history of autoimmune disease, sadly this CONSULTANT haematologist ’suspected that the B12 issue was nothing significant; however he repeated the B12 and measured intrinsic factor and parietal cell antibodies…’
When these results came back they were reported ‘FBC was normal, the MCV was only 94 and vitamin B12 was normal at 500. NO mention of intrinsic factor antibodies and parietal cell antibodies.
During pregnancy over a year later the patient was seen in an Obstetric Haematology clinic and the conclusion was that there was ‘no evidence of pernicious anaemia’ despite tests earlier in the year recording the following levels;
• HB 12.3
• MCV 110
• B12 – 192

Note that there is still no folate or ferritin mentioned here.

The patient at this point was discharged from the haematology clinic but was ‘started on vitamin b12 injections with a label of pernicious anaemia, although this was never proven’.

We readers at this point think the patient and her growing baby might at last have the chance after all these years of neglect to be treated correctly,  but as is very common for a B12 deficient patient there is NO COMMON SENSE in the vicinity!

What happens next is that two consultants get their heads together – they ask again for intrinsic factor and parietal cell antibodies to be tested. These results are recorded as ‘normal’ and ‘the vitamin B12 injections are stopped’. Couldn’t you just put your head in your hands and cry? These people are paid vast amounts of money to save lives but they do great harm to B12 deficient patients time and time again!

This poor patient was then retested for B12 another year later and found to have a B12 level of 137, this time someone lets the patient have B12 injections for 3 years, not enough B12 mind, but enough to keep her existing. Low folate is finally mentioned here now but it appears the GP is completely ignorant of the problems associated with folate deficiency too. The summary states that the GP is reluctant to treat with folic acid because of ‘precipitating neuropathy’.  It seems that not one clinician up to now, has given ‘two hoots’ about the neurological damage occurring due to the continual negligence concerning this patients OBVIOUS B12 deficiency induced neurological symptoms.

The notes summary show that the patient is fully aware of the problem her B12 deficiency causes, she rightly asks for loading doses to be given since she has neurological symptoms and knows that this is what the NICE and BNF guidelines dictate.  The way this patient is written about is appalling, at best she is an irritant at worst she is a hypochondriac who requires a mental health diagnosis.

The GP states that since joining the practice the patient has been;
• Seen by a rheumatologist
• Seen by ‘the’ psychiatrists
• Has had advice from haematologists
• Seen by endocrinologist
• Seen a couple of times by neurologists

The GP further states that ALL investigations have been NORMAL the GP goes on – ‘In conclusion I concur with the haematologist that pernicious anaemia has never been proven ……..and that he is inclined to believe the psychiatrist who diagnosed her as having somataform autonomic dysfunction in the form of neurosis. However, at this time I do not think it is just cardiac neurosis I think it is more generalise neurosis.’  The GP continues to be even more patronising in stating ‘I will await the full complement of investigations by the Endocrinologist and the neurologist before taking any further action. It might well be that she will need to be re directed to the psychiatrist …………She is very fixated on vitamin B12 being the cause of all her problems.’

Funny that, the patient is right, she knows that B12 deficiency is indeed the cause of her problems.

If we look at the evidence – this patient has presented with a mass of B12 deficiency and folate deficiency symptoms from a very young age, she has a ’strong’ family history of autoimmune conditions and she has had low serum B12 results and high MCV’s.  It really is very simple if you look in the right place for something and you LISTEN to your patient.

It is very unwise for clinicians to become fixated with inaccurate blood test results which are continually reported as ‘Normal’ despite being miles away from NORMAL. The fact is that there are many causes for B12 deficiency, pernicious anaemia is just one cause. This deficiency is VERY SERIOUS and requires exactly the same treatment whatever the cause!  It is clearly a good bet that pernicious anaemia is the cause in this patient’s case due to the family history of autoimmunity,  just about all the clinicians involved in her care prefer to think it is all in her mind.  This sort of neglect is not an isolated case and just goes to prove how important it is for UK patients to be allowed to buy B12 over the counter in order to be in charge of their own healing.

These clinicians have spent so long trying to prove something which is very difficult to prove in many patients due to the unreliability of diagnostic tests that it has meant that the patient has suffered and continues to suffer. Writing patients off as mentally ill,  when as a clinician you are failing to understand B12 deficiency and it’s affects, is a sign of a very poorly educated doctor.

Doctors please make sure you rule out B12 deficiency FIRST to save your patients from permanent neurological damage and our NHS a fortune!

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

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

Pat Kornic’s excellent information on blood tests.

http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

Please sign and share our petitions

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

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

 

Summary of notes