Neurological symptoms in B12 deficiency are routinely ignored.

I do acknowledge that there are some of us with doctors who know exactly how to treat B12 deficiency, but evidence shows that we are not all that lucky.

Most of us with this condition suffer neurological symptoms. Our problem is that many doctors don’t recognise our symptoms as such and consequently they continue to worsen. The NICE and BNF Guidelines state that if neurological symptoms are present that B12 injections should be given every other day until the symptoms stop improving.

It’s also important to note that many of us are ‘within range’ on a serum B12 test result, but still heavily symptomatic.

When I was diagnosed with Vitamin B12 deficiency my doctor wasn’t really interested in my symptoms, they weren’t discussed and I don’t think they were even noted. I was given my loading dose injections every other day for two weeks and then I was supposed to manage on one injection every three months.

I couldn’t.

I have neurological symptoms. My myelin sheath, the protection for my nerves, has been nibbled away.

My memory was terrible, my bladder let me down, my tongue was sore and swollen, my vision was blurred, my bowel couldn’t muster up the strength to work, my neck, back, and toes burned with pain, and I felt anxious, I could go on and on. I thought I might be one of those people who end up in the news, with ‘early onset’ Alzheimer’s.

I have an injection every week now, but I have fought tooth and nail for this. I have never been treated as per the guidelines regarding neurological symptoms and I am not alone. I have cried with frustration during my GP appointments. I have asked my doctor why she thinks her memory is more important to her than mine is to me. I have been enraged by letters sent to me from experts I have never met, telling me I need antidepressants and psychotherapy instead of this 55 pence injection. Where is the sense in this? I know that antidepressants are not going to heal my damaged nerves – it is the little red B12 vial, cheaper than a chocolate bar, which does this job, perfectly.

B12 deficient patients are routinely under treated, neglected and ignored. It’s clear that we must all suffer some degree of nerve damage, with different sets of neurological problems and yet for some bizarre reason we are largely, all treated the same – poorly, and sparsely. We are all unique, we all have different B12 requirements. Many of us suffer returning symptoms within days of our injections, some of us can go longer, some of us can’t. I know members of the support group I belong to who are ecstatic when their doctors agree to give them their much needed injections every 10 weeks rather than every 12 but we all know that this frequency is enough to keep to us alive but not to repair the damage to our nerves. We need our doctors to give us a chance for optimum healing by listening to us, by taking our health seriously, by not filling us with chemicals we don’t need, but by giving us an essential vitamin.

A newly diagnosed patient should be given B12 loading doses over two weeks and following these, the patient, who suffers neurological symptoms, may be euphoric at being able to get out of bed for the first time in months or even years. This same patient who may feel a zest for life in place of deep depression, could then be told that they now only require one of these life saving, vital, water soluble injections, every three months. This incorrect statement is rolled out to countless devastated and desperate patients with the added untruth, that too much B12 can be harmful. There is barely any recognition of our symptoms, except for, it seems the depression we sink into when our lifeline is cut. Our request for more frequent injections falls on deaf ears but we are freely offered antidepressants as an antidote for our despair.

The depression induced by lack of B12 has one cure alone, tragically this cure for most, is rationed to one tiny ampoule only four times a year. This is madness.

B12 deficient patients should also have had their folate and ferritin levels checked. If these levels are too low our B12 can have a pointless journey through our systems and leave us without improvement.

Some doctors feel that our neurological symptoms are not B12 deficiency at all and so will continue to test, scan, prod and poke saying it is important they don’t miss anything ‘more serious’. We don’t mind this process as long as you continue with our essential injections, they can do only good. Vitamin B12 stops us deteriorating, stop our brains from shrinking, it don’t interfere with any other drugs and there is no known toxicity.

We need the treatment that the NICE Guidelines and BNF guidelines 9.1.2. allows us, injections every other day until our symptoms stop improving. There is no restriction on this – and there shouldn’t be.  Nerve damage takes a long time to heal, ask a neurologist – but not these two jokers, see letters 3 and 5 http://b12deficiency.info/letters.html.

Many of us with this condition have soaked ourselves in research in order to be armed with information to keep ourselves alive and well. Numerous occasions arise when this information we collect needs to be regurgitated for our doctors. We remind them of the guidelines repeatedly due to the simple fact that our neurological symptoms are continually misunderstood or ignored.

We don’t understand the confusion our health professionals suffer with the treatment of B12 deficiency because it is SO SIMPLE. Those of us with this condition are fully aware that it affects all body systems, that B12 deficiency affects our brains. It attacks both our central nervous and peripheral nervous systems and that these nerves run throughout our bodies from head to toe the damage wreaking havoc with our daily lives.

Yes it is this serious, but tragically our doctors feel we are making a fuss if we want –

to stay awake for more than three hours a day,

to move without pain,

to walk without wobbling,

to conceive without IVF,

to have a tongue that fits,

to empty our bowels from time to time,

to speak without forgetting,

to hear without constant ringing,

to see without blurring,

to feel calm and relaxed,

to hold down a job,

to have a day without tears,

to remember our loved ones names,

to feel like death isn’t a better option. . . . . . . . . . .

Is this really asking too much?

The guidelines regarding neurological symptoms are plain to see, so all we ask is that these are followed.

Our doctors take the Hippocratic Oath, it states “And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them.”

What happens every day in reality, is criminal.

Best wishes, Tracey
www.b12deficiency.info

Please consider signing and sharing our petition – you will be helping to save lives

Newly diagnosed? Please visit – http://b12deficiency.info/what-to-do-next.html

Raising awareness – How YOU can help

To join Pat Kornic’s Life saving support group

NICE Guidelines

 

 

Dear Doctor, have you been giving vitamin B12 deficiency another name?

You could probably visit ANY street in the world and find B12 deficient residents. In 20 homes you may find eight people who are deficient, and this may be just two families, including the children of course.  B12 deficiency is very common, however it is very commonly given another name.

My symptom list overlaps with those of my loved ones, however some we don’t share at all. Please remember we don’t all present in the same way.

What we need our doctors to recognise is that misdiagnosis of B12 deficiency is, in itself, an epidemic. Please visit www.b12deficiency.info/misdiagnosis.html

We need our doctors to diagnose correctly and of course to rule out what may be considered to be ‘more serious’ conditions. Please start by ruling out B12 deficiency, make this condition your first port of call. After all, it’s safe, it’s exceedingly cheap to treat and it does not interfere with any other treatment you might feel it appropriate to explore.

I know a B12 deficient patient who has been restricted to quarterly B12 injections. They have also been given, lithium and its associated monitoring, anti psychotics, anti epileptics, anti depressants, MRI scanning, CT scanning. We know she deteriorates because those in charge of her care refuse to recognise the vital importance of this essential vitamin and that each of her symptoms traces it roots to B12 deficiency. Tragically this is not an isolated case.

In the face of flawed serum B12 tests, using a therapeutic trial of B12 loading doses whilst you spend the time ruling out, or confirming other illnesses is quite simply, common sense and good medical practice.

We need our doctors to KNOW the symptoms of B12 deficiency, yes there are a lot, but you have been trained to retain information, learning the symptoms of this condition will save more lives than you can imagine, I list them below.

Remember, this deficiency affects ALL body systems but not every sufferer will present in the same way, each family member can have a different set of symptoms and please don’t forget the children!  If you diagnose a mother, make it your job to screen any children too.

Make it your job to listen to your patient’s when their symptoms return only a week after an injection. Make it your job to follow the BNF guidelines and give the injection every other day until the patient’s symptoms stop improving.
Make it your job to understand the need for optimum ferritin and folate levels. Treat your patient’s as individuals, teach them to self inject, as you do your diabetic patients, just think of the nurses time saved! Put their B12 on repeat prescription so they don’t need to plead for health,  this will free up more of your time.
Please, please, please,  skip the cyanocobalamin tablets unless you KNOW, without a doubt, that your patient’s deficiency is due to diet alone.

Many with this condition have been misdiagnosed, they become expensive to treat, some cannot contribute to society and this costs the NHS a fortune.   You will see that the following conditions share many vitamin B12 deficiency symptoms.

I hope you will look closely at the diagnoses you have made for your patient’s and that you can find it within yourself to revisit the treatment prescribed.

Multiple sclerosis
• numbness and tingling
• blurring of vision
• vertigo
• tremor
• ataxia
• fatigue
• chronic pain
• muscular spasticity
• muscle weakness and tightness
• bladder incontinence
• constipation
• cognitive problems
• anxiety
• depression
• erectile dysfunction

Alzheimer’s
• forgetfulness
• mood swings
• speech problems
• vision problems
• delusions
• incontinence
• weight loss
• loss of appetite
• dysphagia
• memory loss
• increased vulnerability to infection
• difficulty moving
• disorientation
• difficulty performing spatial tasks

Parkinson’s
• tremor
• stiffness of muscles
• dystonia
• postural instability
• depression
• anxiety
• cognitive impairment
• delusions
• sudden outbursts of emotion
• poor concentration
• psychosis
• urinary incontinence
• constipation
• erectile dysfunction
• dysphagia
• orthostatic hypotension

CFS
• fatigue
• forgetfulness
• confusion
• palpitations
• dizziness
• balance problems
• IBS

Congestive heart failure
• fatigue
• breathlessness
• ankle swelling
• a persistent cough
• lack of appetite
• weight loss
• tachycardia
• depression
• anxiety

Fibromyalgia
• slowed or confused speech
• cognitive impairment
• widespread pain
• stiffness
• fatigue
• IBS
• inability to regulate body temperature
• tinnitus
• tingling and numbness
• anxiety
• depression
• painful periods

I could of course go on…… and on …………

Here are the symptoms of B12 deficiency

Neurological
• Tinnitus.
• Tremor.
• paresthesia – numbness, tingling and pain.
• Confusion / disorientation.
• Weakness of legs, arms, trunk.
• Impaired vibration – position sense.
• Abnormal reflexes.
• Unsteady or abnormal gait / falls.
• Ataxia (Neurological disorder affecting balance, coordination and speech).
• Balance problems.
• Difficulty walking.
• Dizziness.
• Restless legs.
• Visual disturbances / decreased-blurred vision / damaged of optic nerve.
• Forgetfulness, memory loss.
• Dementia / intellectual deterioration.
• Impotence.
• Paralysis.
• Impaired fine motor coordination.
• Muscular spasticity.
• Bladder or bowel incontinence.
• Impaired pain perception.
• Nocturnal cramping.
• Disturbance in taste and smell.
• Optic atrophy.

Neuro psychiatric
• Psychosis
• Depression / suicidal.
• Post natal depression.
• Irritability.
• Paranoia.
• Mania.
• Hallucinations.
• Violent behaviour.
• Personality changes.
• Apathy.
• Anxiety.
• Delusions.

Haematological signs and symptoms
• Anaemia
• Macrocytosis (large red blood cells).
• Hyper segmented neutrophils.
• Generalised weakness, fatigue.
• Breathlessness.
• Pallor / jaundice.
• Chronic fatigue.

Vascular Problems
• Orthostatic hypotension / Postural hypotension

Female
• Infertility.
• Recurrent miscarriage.
• Abnormal PAP smears.

Male
• Infertility.
• Impotence.
• Low sperm motility.
• Low sperm count.

Gastrointestinal
• Loss of appetite/weight loss or anorexia.
• Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals).
• IBS – Irritable bowel syndrome.
• Constipation.
• GERD – Gastric reflux disease – ulcers / mouth ulcers.

Additional Signs and Symptoms
• Dry cracked corners of the mouth.
• Premature greying.
• Glossitis – swollen / sore tongue, geographic tongue.
• Fainting/light headedness.
• Osteoporosis.
• Symptoms mimicking Parkinson’s and MS.
• Nominal aphasia – difficulty recalling names or words.
• Radiculopathy, spinal nerve pain – commonly in lower back and neck.
• Increased susceptibility to infections.
• Poor wound healing.
• Loss of appetite.

Please click here to see the signs and symptoms in children http://b12deficiency.info/children-and-b12.html

Please also see this page http://www.b12deficiency.info/what-to-do-next/

Raising awareness – 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

Best wishes, Tracey

‘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.

Primary school

I learnt about vitamins and minerals at school and how important they are, it appears that for some doctors this childhood learning may constitute their entire education on nutrition – we really are stuffed if our particular GP happened to be ill that week.

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!

Placebo?

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.

NHS 

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 !  REMEMBER – 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 consider signing and sharing our petition to make B12 OTC in the UK – but please don’t pay them any money – it does not go to the cause you support

 

Best wishes, Tracey
www.b12deficiency.info

 

The ‘Not so NICE’ NICE Guidelines

Do you have a diagnosis of CFS or ME?

It is widely documented that chronic fatigue is a symptom of B12 deficiency, it is also known that B12 deficiency can be misdiagnosed as CFS and ME.  It is also known that macrocytosis does not need to be present to be severely B12 deficient and yet this is what is stated in NICE Do Not Do Guidelines. ‘Tests for vitamin B12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.’

Treatment of CFS and ME

Nice guidelines

Misdiagnosis possible
If doctors strictly adhere to this guideline it could be causing many serious cases of B12 deficiency to go undetected.

Many doctors see NICE Guidelines as LAW, when they should be regarded as is a recommended practice that allows some discretion or leeway in its interpretation, implementation, or use.

In contrast the following NICE Guideline appears to be rarely adhered to . . . 

It states – ‘Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.’  Many of us have to fight to get the loading doses never mind the injection every other day which is so desperately needed.

This guideline further states – ‘Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12’. Sadly some with the condition are fobbed off with these useless tablets depite the fact that they are not deficient due to diet.

In an ideal world
What we need our doctors to understand is that, ‘not every patient or situation fits neatly into a guideline. A guideline may not cover every eventuality and each patient’s circumstance needs to be taken into consideration when a treatment or test is decided upon.’

It would be ideal if all doctors diagnose with the clinical picture in mind, and effectively use listening skills. We need them to be up to speed on all the symptoms of B12 deficiency and help those in desperate need of a correct diagnosis and the inexpensive treatment required. The new BNF guidelines now record the cost of Hydroxocobalamin as 55 pence.

Best wishes, Tracey
www.b12deficiency.info

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