Once tested, even if diagnosed, the road to correct treatment can be long and difficult due to the profound lack of knowledge of many health professionals.
When B12 deficiency affects mental health it is incredibly difficult to change the mindset of doctors who believe that drugs or psychotherapy are the only answer.
It appears that MS type presentations are more likely to be understood to be B12 deficiency but it means that pre existing conditions are more often than not 'blamed' for many presenting symptoms.
Sadly sometimes, as you will see below, the fight to educate has been a futile exercise.
Tom - age 2 years and 10 months
B12 serum level: 454
- Mood swings
- Fits of rage and violence
- High energy leading to exhaustion
- Extremely dry skin
- Intermittent rapid heart rate
- Explosive anger
- Self harming
- Sleep disturbance
- Night terrors
Tom is 2 yrs and 10 months old, he had a diagnosis of Granuloma annulare and has always suffered with constipation. He was also diagnosed with GERD as a tiny baby which troubled him until he was 6 months old. At around 12 months old Tom’s behavioural problems began to surface, he was very irritable and extremely bad tempered.
He walked at 9 months old but at 13 months old he developed ataxia. An MRI scan revealed no obvious problem.
He woke screaming a dozen times during the night and this worsened as he got older.
Tom began self harming and had very violent outbursts, his doctor deemed it normal for 25% of children to have violent temper tantrums. This was of course extremely distressing for the family who witnessed him destroying entire rooms and harming himself during his rages.
A little before Tom was 18 months old he began to turn his anger towards his family, he would become very upset, he would try to overpower anyone and would direct his attentions to his elderly great grandmother. Shortly before his 2nd birthday his violence escalated and began, biting, hitting, pulling hair, scratching, pinching and kicking.
Finally Tom’s doctor found the family a behavioural therapist who was astonished at what she saw, she reported that she had only seen children acting as violently as Tom on psychiatric wards. This news was terrifying to the family who continually sought help for Tom, each time drawing a blank. All his symptoms led everyone to believe Tom was suffering from bipolar disorder and ODD (oppositional defiant disorder).
Thankfully an organisation who were helping the family put them in touch with a doctor who specialised in treating children with behavioural problems. Numerous blood tests were carried out and Tom’s B12 deficiency was finally discovered. His serum B12 level was 454, this would have been considered 'normal' by many doctors but Tom's doctor is aware of the inaccuracy of the test and always treats any result below 550.
He had his first injection just before Christmas of 2013 and just a week later Tom became a completely different child. He was transformed from an extremely violent and depressed state to being a very happy and calm boy for the first time in his life. His weekly B12 injections have made him a very happy boy for the first time in his life. Tom’s family had almost given up hope of him ever having a normal, fulfilling life, they are in shock at the incredible change to their previously chaotic and distressing lives.
For more information on children and B12 deficiency please visit our children's page.
Paul - aged 77
- Memory loss
- Tingling in arms and legs
- Numbness in fingers
- Bowel incontinence
- Loss of appetite
Paul was diagnosed with type II diabetes in his early 60's, he was always a fit and healthy man. He was given the drug metformin and eventually he was diagnosed as B12 deficient. Unfortunately he was only prescribed oral tablets, 50mcg of cyanocobalamin. This was of course entirely useless in treating his deficiency. Paul was diagnosed with Alzheimer's. Tragically, although Paul's doctor was aware of his B12 deficiency he would not acknowledge that this was due to malabsorption, probably caused by long term use of metformin.
The family tried to help the doctor to understand that B12 injections should have be administered in place of oral B12, but this repeatedly fell on deaf ears. They were told not to mention injections again.
Paul's condition deteriorated to such an extent that a police search was mounted after he was reported missing. Paul was found confused and disorientated miles from home in the early hours of the morning.
Paul can no longer be cared for by his family and now resides in a nursing home where his condition deteriorates. His B12 deficiency still goes untreated despite the repeated efforts to educate those involved in his care.
This case presents an all too common mix of ignorance and then arrogance from health professionals who refuse to listen and then cause untold harm.
The cost of ignoring pleas for correct treatment to Paul, his family and the cost to society is profound.
Sara - aged 42
B12 serum level: 196 | Folate: 7
- Mood swings
- Premature greying
- Chronic fatigue
- Heavy periods
- Weight loss
- Visual disturbance
Sara was vegetarian from her early teens until her early thirties. Her eyesight was affected at age eighteen and by her thirties severe depression had set in. Her periods became progressively more painful and tinnitus and chronic fatigue began.
Sara like many others, had never been screened for physical reasons for her depression. She was misdiagnosed with bipolar and was sectioned following a psychotic episode. Her doctor was completely unaware of the psychiatric manifestations of B12 deficiency and initially refused to even test for either thyroid dysfunction or B12 deficiency both of which cause psychosis. Once tested she was shown to be deficient but was refused treatment as the doctor insisted there were no symptoms present.
A second doctor would only prescribe low dose oral B12 which was entirely useless for the advanced neurological symptoms. Eventually after changing doctor a third time, injection loading doses were given. Luckily Sara is now in safe hands with a doctor who has updated their previously poor knowledge of B12 deficiency. She now self injects every other day and takes a good vitamin B complex and 5mg of folic acid daily. Her depression and anxiety improve every day, her periods are far less painful and her tinnitus is quietening.
Once Sara was given ferrous sulphate to raise her low ferritin levels her chronic fatigue improved enormously and she is now firmly on the road to recovery.
Helena - aged 32
B12 serum level: 47 | Folate: 6
- Tingling in hands and feet
- Dry cracked corners of the mouth
- Extreme fatigue
- Recurrent pleurisy
- Low mood
- Poor memory
Helena has Type 1 diabetes, unbeknown to her doctors this predisposed her to other autoimmune conditions and sadly the tingling in her hands and feet was put down to her long standing diabetes.Her fatigue was attributed to a stressful job.
Unfortunately repeated doctors told her she was not managing her diabetes properly and this was the reason she kept falling ill to infections. Helena was increasingly absent from work due to recurrent respiratory infections.
After being alerted to the symptoms of B12 deficiency and finding that the symptoms she had outweighed those attributed to diabetes her doctor reluctantly carried out a serum B12 test. The results showed that Helena was severely deficient and she was immediately started on loading doses of hydroxocobalamin. The response to the B12 injections was profound, the tingling in her hands and feet stopped, sleep patterns restored and energy levels raised enormously. Sadly her Doctor re tested her levels just after loading doses and reported that her levels were now incredibly high and incorrectly stated that they would need to stop the B12 injections. These were duly stopped and all her symptoms returned within 10 days.
After a long drawn out battle Helena was able to see a new doctor who has now reinstated the correct treatment and understands that these injections will be required for life. She is now on the road to complete recovery.
Holly - aged 46
Diagnosed at age 27 - B12 serum level: 150 | Folate: 1
Symptoms experienced over 20+ years:
- Tingling in forearms & hands
- Extreme fatigue
- Loss of appetite
- Swollen tongue
- Slurred speech
- Short term memory loss
- Severe mood swings
- Irritable bowel syndrome
- Facial pain and numbness
- Hearing hypersensitivity
- Back pain
- Numbness in hands
- Translucent skin
- Foot odour
Holly was diagnosed after a five year battle and constant visits to her family doctor. She was found to be B12 and folate deficient. Subsequent Schillings test and intrinsic factor antibodies blood test confirmed Pernicious Anaemia due to lacking intrinsic factor in the stomach.
Unfortunately, Holly's family doctor had no experience in treating Pernicious Anaemia and didn’t administer loading injections. For two years, Holly received only one monthly intra-muscular injection of vitamin B12 and 5mg of folic acid daily.
Two years later, Holly’s condition worsened. She was bed ridden with constant nausea, severe headaches, loss of appetite, extreme exhaustion. She slept on average 20-22 hours each day. She also had severe mood swings, short term memory issues and slurred speech.
Feeling desperate, Holly sought help from a naturopath. Two weeks after a strictly controlled diet and a daily cocktail of 60 vitamins a day, which included her daily dose of 5mg folic acid, Holly was remarkably able to resume normal life activities. Within six months, she was able to reduce her daily vitamin intake to just 6 vitamins along with her monthly injection of B12.
She was symptom free for almost almost 3 ½ years until undiagnosed pain and inflammation spread throughout her body. Severe daily headaches, facial pain and numbness, loss of balance, tinnitus, and back pain had doctors stumped. Unsuccessful physiotherapy along with a prescribed pain perception medication and five years of costly acupuncture ensued. Finally Holly discovered that the inflammation was due to far too little vitamin B12. She was able to convince her family doctor to let her take control of her own healing and was taught to self-inject, she was finally free of inflammation and pain.
Holly now self-injects B12 subcutaneously 3 times a week and has a daily intake of vitamin B complex, 5mg of folic acid, vitamin D and a multi vitamin. Over the years she has tried to reduce her daily intake of folic acid but her folate level drops too fast. She has also discovered that if her B12 level drops below 1250, her symptoms return.
Holly's improvement has been profound and she now leads a normal life, steadily increasing her exercise regime to almost what she was capable of 20 years ago.
Joshua 'JJ' Luckasavitch - aged 13
B12 serum level: 0 (zero) | Folate: 1
- Inability to walk
- Memory problems
- Extreme fatigue
JJ had food allergies and asthma all his life. He contracted pneumonia and missed school from November 2006 - January 2007. He tried to return to school after the Christmas holidays, however thirteen year old JJ felt unwell and on his way home his legs suddenly buckled and he collapsed. For eight long months, JJ was in and out of Hospital but there were no answers found. He was referred to a liver specialist, who failed to diagnose JJ's condition. At one point it was thought that JJ was suffering from Wilson's Disease a genetic disorder in which copper accumulates in tissues. JJ appears in the documentary by Elissa Leonard at the top of this page.
JJ became increasingly jaundiced and lost his ability to walk and write. He was referred to a liver specialist, who failed to diagnose JJ's condition. He was told he might never walk again. His paediatrician worried that JJ's organs were shutting down. He was getting weaker, felt really sick and was exhausted. The whites of his eyes were now yellow and he had short term memory problems. He couldn't keep food down and all he did was sleep.
Finally in August of 2007 JJ was referred to a haematologist who found that this was a case of Pernicious Anaemia and when he was tested for B12 he had a record serum level of zero. He was also low in other vitamins including vitamin D.
JJ went undiagnosed for so long that the tissue in his spinal cord which carries nerve impulses was also seriously damaged. This condition (SACD) Subacute Combined Degeneration of the spinal cord is secondary to pernicious anaemia. He also has multiple fractures and osteoporosis in his back.
JJ's mother Kelly, knows that a simple test of his B12 level would have diagnosed his problem months before and would have prevented some of his nerve damage. She is dedicated to raising awareness of this condition so that others do not have to endure the same distressing experience.
Ellen - aged 70
B12 serum level: 256
- Acute iron-deficiency anaemia
- Bed bound
Ellen was in her late 70s, suffering from acute iron-deficiency anaemia, kyphoscoliosis, severe arthritis, and depression.
Due to her anaemia, doctors were convinced she had a bleed. She was subjected to multiple investigative procedures and was hospitalised for months - emerging without any concrete diagnosis. Her treatment included multiple iron transfusions and blood transfusions, these had no lasting impact on her anaemia. She was given a gastroscopy and colonoscopy - both were negative for a bleed. During several visits her friend asked nursing staff about possible Vitamin B12 deficiency, sadly she was ignored.
Ellen was discharged almost in the same state in which she had been admitted. She was bed bound, remained crippled, breathless, aggressive and depressed. She was so increasingly unpleasant it affected her family relationships. Her plummeting iron levels and lack of diagnosis meant she was readmitted to hospital for a capsule endoscopy. This was also negative, and medics could not explain her iron deficiency anaemia. ‘Anaemia of chronic disease’ was recorded in Ellen’s notes. Ellen had been anaemic, off and on ever since she was a child, making this diagnosis nonsensical.
Ellen was given high doses of methotrexate and prednisone for her pain, swollen joints, and muscle problems. Methotrexate inhibits the absorption of folic acid, so she was prescribed a folic acid tablet – once a week. Ellen was eventually tested for B12 deficiency however her doctor’s ignorance meant they would not not consider it was possible for her to have a B12 deficiency with a serum B12 level of 256. They were unaware of the inaccuracy of the serum B12 test and were relying on a figure rather than listening to their patient, understanding her many symptoms and looking at the whole clinical picture.
Whilst Ellen’s health drastically deteriorated family members also raised the possibility of B12 deficiency with many specialists involved in her care. This was always rejected due to the serum level being ‘within range’ and therefore to the uneducated medics this unfortunately means, 'entirely normal'.
Ellen read about iron deficiency anaemia in 'Could It Be B12? – An Epidemic of Misdiagnoses', by Sally Pacholok R.N. and Dr. Jeffrey Stuart, and began treating herself. In the beginning she started taking high doses of methylcobalamin drops sublingually, and with the help of her family accessed very regular B12 injections. For the first time in years her iron levels suddenly stabilised and then improved.
Her friend wrote to Ellen’s consultant about this, including a copy of the book with a chapter highlighted (2nd edition, Chapter 13, pp 282-284). This section so closely described Ellen’s experience, it could have been written about her. He had all the information to diagnose correctly handed to him on a plate and yet he still couldn’t spot it. There was no doubt that she was desperately B12 deficient.
Ellen’s consultant Gastroenterologist has shown he is completely ignorant of the effect low B12 has on Iron deficiency anaemia. He completely missed an opportunity to understand Ellen’s condition and, sadly, it is inevitable that this is dire news for other unfortunate patients under his care, who might present in the same way.
Her consultant rheumatologist now agrees that the profound improvement in her iron levels can only be accounted for by the regular B12 injections.
To see his shocking letter please click here and read letter 4.