Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Psychiatric Issues

Jan 22, 2017 | Patient Stories & Support, Pernicious Anaemia, Personal | 8 comments

“I had a nervous breakdown over Christmas”. The callers voice was shaky, trembling almost.
“I’ve phoned you before, you helped me cope, but I’m really bad now, I don’t know how I’m going to carry on”.
It was last Friday that I took that call. I couldn’t remember talking to the lady before, but that didn’t matter, I thought I might be able to help.
“Why am I like this? I can’t seem to cope with everyday life. My doctor says it’s not my PA but I know it is. I’m tired all the time, really tired, and I can’t think straight. I’m doing weird things, saying weird things, talking gibberish. I’m an embarrassment to myself and my family”.

These are the most difficult calls from patients that I have to deal with. Not because of the subject matter, it’s well known that low B12 can have profound effects on the mental health of patients. It’s difficult because the patient’s B12 status will most likely have returned to healthy levels and therefore the physician will dismiss the patient’s behaviour as having nothing to do with his or her Pernicious Anaemia.
I did the best to reassure the caller but in the end the only advice I could give was to ‘take things easy’ – not the greatest comfort for people who are really struggling to carry on their everyday lives.

The next day, Saturday, I woke up in a different frame of mind than I had done for a week. I looked back on the previous week and realised that I too had been experiencing the same awful experience that the previous day’s caller had been experiencing. I had been behaving strangely, oddly, uncharacteristically since the previous Saturday. And yet, at the time, I didn’t know that I was doing odd, bizarre things. I lay awake and recalled some of the odd things that I had done. I’d gone to church to pray, something I had never done before and had been rude to another churchgoer who had asked if I was local. I left the church in a huff and found a small rural church that was not locked and visited it three times during the week; visited it with my camera that I started to carry everywhere (without taking one picture). I was rude to callers, and used inappropriate language. I started writing the strangest stories that were pure fiction. I was morose, to the extent that, when taking my regular weekly walk with two ex-colleagues, they both asked what was wrong. I thought the world was wrong and I was right. I ate junk food and only junk food, and started stating the most bizarre facts that were anachronistic and totally out of context to any conversation I might have had. It was as if I was still waiting to be diagnosed and treated.

And this is the strange thing. I am swimming in B12. So why do I still get these episodes where I change into a different person, showing all the symptoms of the psychiatric symptoms of a person with low B12?
The answer is that nobody knows though it has been suggested that it’s due to lesions to my brain that were caused when I was severely deficient in Vitamin B12, and that means that no matter what I do, I will still carry on to have these episodes where my behaviour reverts to how I was just before being diagnosed.
I can’t remember when I had a week like this before, but it must have been over two years ago when I dismissed all of the volunteers working for the charity within an hour of turning up at the office (they returned in the next few days I’m glad to say after I had tried to explain why I had acted as I did). Hopefully it will be another two years or more before I experience it again.

The worst part of these episodes is that I’m not aware that I am doing anything odd; I’m convinced that I am doing the right things and that others are doing the wrong things. It leads to unprofessional behaviour (I remember screaming at post-graduate students in the corridor of the university where I was teaching just before being diagnosed) and inappropriate things being said. Yet I think it perfectly normal behaviour; behaviour that is completely out of character for me.

This leads me on to believe that the B12 status of every patient involved in psychiatric care should be checked. And I’m not alone.
A recently published paper by a team of doctors in Saudi Arabia shows I’m not alone.
Here’s how the patient was described:
‘the patient became more aggressive, had reduced sleep, had stopped going to work, and became isolated. He also had hallucinations and episodes of short term
memory loss’.

And this is what they note:
‘Neuropsychiatric manifestations of vitamin B12 deficiency include dementia, delirium, cerebellar ataxia, psychosis, neuropathy, and mood disorders. Acute
delirium is rarely the only presenting symptom. In our case, acute delirium preceded the typical haematological and neurological findings observed in vitamin B12 deficiency’.

And they go on to recommend:
‘There are multiple factors that lead to misdiagnosis of vitamin B12 deficiency. Most physicians are not aware that psychiatric symptoms may sometimes be the only presenting symptoms of vitamin B12 deficiency. Most doctors depend on MCV and MCH values to diagnose vitamin B12 deficiency. However, perturbations in MCV and MCH are late signs of vitamin B12 deficiency. In addition, the serum vitamin B12 test is not very sensitive or specific. At the same time, serum vitamin B12 levels need not to be very low in order to produce psychiatric symptoms’.
Let’s cherry pick from that paragraph:
‘psychiatric symptoms may sometimes be the only presenting symptoms of vitamin B12 deficiency’

‘At the same time, serum vitamin B12 levels need not to be very low in order to produce psychiatric symptoms’
And that could be the reason why the telephone caller and I still experience the psychiatric symptoms even though our B12 levels are satisfactory – whatever that means.
What is going on?

Ref: Hani Almoallim, Fahtima S.Mehdawi, Mohammed M.Cheikh, Fahmi Al-dhaheri, AbdullahMahir Aqeel: Reversible Vitamin B12 Deficiency Presenting with Acute Dementia, Paraparesis, and Normal Hemoglobin; Case Reports in Neurological Medicine,Volume 2016, Article ID 4301769, 3 pages

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  1. Neville Pettitt

    Very interesting, thank you


    I can show you pages of my Diary, for each & every time I asked for b12 to be tested over a period of four months while my Brother was held on a section last year. It was only during the meeting considering his discharge that I had an opportunity to ask the Consultant why my requests were ignored. He agreed to the test being done, eventually, but that was at the point of discharge. I asked for the results at a further meeting & was told they were over 400, this turned out to be a lie, I asked for a copy for the GP surgery & they were 356. I put in a complaint to the CMHT.

  3. Sue c

    I totally agree that all psychiatric patients, and any patient who goes to their GP with depression or anxiety, should be screened for B12 deficiency. We should start with psychotic patients who turn up in Emergency Departments; it can take hours to get these patients seen by a psychiatrist and even longer to get them admitted. Finding and treating B12 deficiency could save the NHS a small fortune and the patient a great deal of suffering..

  4. Diane Clay

    I have experienced the return of severe PA symptoms over the last few weeks and have suffered from a worsening of these every January.

    I record a simple daily chart of symptoms on a grid, with date along the top and symptoms down the side. I have done this since 2008. Every January the grid is crowded with recordings. I can only speculate that the cold and/or the low light has a bad effect. For the last few years we have booked a holiday in southern Spain and, whilst I am there, the symptoms almost disappear. They re-appear about two weeks after I return. The severest ‘January’ symptoms are usually intense fatigue and foot and leg pain, requiring whole days in bed. This year I have also experienced a return of psychiatric symptoms, which have been absent since 2006 (feelings of ungrounded fear and low mood). This is strange, as I started using B12 Boost two years ago and have been more energetic since then. I hope this phenomenon can be tackled by research as, I am sure, many families and individuals are suffering as a result of it.

  5. KareN

    I suffered 40+ years of intermittent depression and anxiety which certainly got a lot worse in the few years after I was diagnosed and even worse when I was on the standard treatment for a B12 deficiency caused by absorption problems. It only actually got better when I started treating myself to ensure that I got the levels of B12 I needed – at that point I was focused on balance problems and didn’t believe that B12 could be the source of my problems with mood etc. The balance resolved itself in a matter of weeks … and then a few months after that I realised that the mood problems were gone.
    I supplement within 24 hours of a maintenance shot now because I can feel myself getting ratty and pessimistic if I don’t – though energy etc will be okay.
    I don’t have the experience of doing things that I don’t remember but I do remember episodes over the years when I was reacting in ways that just didn’t feel like me and I was sitting inside thinking ‘what on earth is going on? why am I reacting like this?’

  6. Diane Clay

    Posting a recent comment about having more PA symptoms in January made me think about why they had occurred. Since using B12 Boost spray in February 2014, my energy had increased and symptoms decreased, especially when I increased the dosage from 4 sprays per morning to 5 – by accident – but then continued with 5 subsequently when I realized I felt so much more energetic. This January’s mental health symptoms came as a shock but made me analyse my habits. Extra meals out over Chritstmas had diverted me from my usual diet, based on Slimming World recommendations (I also have low thyroid levels, which causes weight gain). I had not felt hungry enough to have my snacks of berries and low fat yogurt, also bananas. I had kept up my multivitamin tablets (which I take to ensure intake of all B vitamins – apparently absorption of only one B vitamin is impaired if all the others are not taken also). However, I had bought some new tablets and realized they only contained vitamins and not minerals in addition. The one symptom which frightened me was the fear, which I suppose was anxiety. So I then remembered that, to calm my anxiety in the past, I had used Arrowords crosswords. I realised they calmed me when I bought a book in an airport just before a flight. After two days I began to feel better and now feel ‘normal’ again, although its difficult to know what normal is anymore, having suffered PA symptoms, untreated, until from 1995 to 2014.

  7. Ann

    This is the most disturbing aspect of b12 deficiency, I think. The psychiatric changes creep up out of nowhere, feel uncontrollable, and get worse over time. It is incredibly terrifying to try and have some normalcy when your brain and nervous system are not working properly. I feel sad and ashamed remembering how much I was struggling, and how I couldn’t make sense of the bizarre changes. I lost 2 full years of memory, and if I try and explain the condition people look at me like I’m crazy. I don’t think they believe me.

  8. Kay warner

    My husband has recently had blood results including macrocytosis, and thiamine deficiency followed up by VitB12 deficiency. More blood tests have been done, awaiting results and a course of loading injections prescribed. I was discussing this with a friend, a retired mental health nurse specialist and senior NHS manager. She told me that when she was nursing, it was decided to test B12 levels on patients coming in to the psychiatric ward. A surprising number were discovered to have B12 deficiency and after treatment, some were abel to be moved to other wards or discharged home. She believes that this was a useful exercise with interesting and cost-effective results but doesn’t think that this is routinely done on psych. wards today. What a pity!


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