B12 deficiency

[Alfabeta]

Hi

I wonder if I am on the correct site. I was diagnosed with b12 deficiency in June and I've looked up the symptoms including auditory hallucinations which occur with b12 deficiency and which I suffer from. I've posted several times on hear and no-one seems to recognise this symptom. I spoke to a Benenden doctor who did not recognise the symptom and suggested thyroid, stress or psychotic problems. One member who answered my post said that I should be very careful as his daughter had been sectioned because of her symptoms.

I had blurred vision lasting about 10 seconds; bouts of overwhelming fatigue; instability; aphasia and memory loss I was an English teacher yet became totally inarticulate because words would escape me mid sentence; I could watch an episode of a tv programme and, although I remembered watching, it could not remember what happened this preceded the former symptoms and I just put it down to getting old (I'm 66). But the worst symptom was auditory hallucinations. My body started to tingle, I began to lose a degree of consciousness yet knew where I was, then I would hear total static noise and heard gibberish being spoken. These bouts lasted for 10 seconds and ion the worst days I had repeats of up to four bouts.

I had six injections every three days and although the symptoms continued during the injection period all symptoms stopped for just over 8 weeks then the auditory hallucinations recurred again, usually in bouts of up to four times in a day. At worst I had 7 experiences over a fortnight.

My doctor sent me back for a retest and my b12 and folate levels were okay. However, I had taken a 1000ml b12 tablet some days before so my results were possible skewed.

I self medicated on boost 12 and b complex daily and several 1000ml tablets a week. I had no more symptoms.

I had my first booster injection in early November and was fine until Monday when the auditory hallucinations almost recurred four times. I say almost because the tingling sensation started and I began to lose partial consciousness but then it stopped before the hallucinations occurred.

This might be a sign that my body is healing or is this wishful thinking.

My gp nurses (who are fantastic) are going to let me have the injections every 10 weeks without the gps knowing but I had several semi hallucinations during sleep last night and one when I got up.

As I say, I am fairly sure I do not have pa (at least not yet) but I do have b12 deficiency.

1. What is wrong with gps that they reject this condition and, given it is so cheap to have the injections, why are they so obstinate - I got the impression that my doctor was really pissed about me requesting more investigation and a great big 'I told you so' when the results came back saying that I had enough b12.

2. I do not understand why my Benenden doctor and some respondents on this site do not recognise the auditory hallucinations - they are a symptom of b12 deficiency.

I was on omaprezole 10ml for over five years and I am a vegetarian but I get about 30% b12 from soya yoghurt and milk every breakfast and I have started putting cheese back into my diet. However, I do drink too much alcohol around two pints of string lager a day with several days drinking nothing.

Sorry for the length of this but I am just a bit distressed.

Chris

[Gambit62 Administrator]

Hi Folkestone - don't think it is that nobody recognises the aural hallucinations as being a possible effect of B12 deficiency, just that nobody else on this forum that is posting at the moment has actually had that particular experience.

In general most doctors have a very poor understanding of B12 deficiency and to be honest my own experience of recovering from a B12 deficiency is that it is actually quite amazing just how much a simple vitamin can impact on your health and ability to live day to day. The guidelines available to doctors tend to be rather ambiguous and often seem to create more confusion than assistance - this is certainly my personal opinion of the NICE guidelines.

You mention omeprazole - which may well have impaired your ability to absorb B12 from the amounts that you are supplementing. Was the omeprazole to do with symptoms of high stomach acidity - the symptoms of low stomach acidity are basically the same and low stomach acidity would have impacted on your ability to absorb B12.

If the hallucinations have restarted a while after the injections then I personally would think that it is more likely that this is an indicator of when you actually need more B12. We all have different triggers that we can learn to recognise - for me it's shooting pains in my ankles, feeling ratty or just finding that I'm starting to zone out and not able to really focus when there is a lot going on around me (that's when I know I'm in trouble and need some more B12 urgently).

[Alfabeta in reply to Gambit62]

Thank you for your reassurance. I was given omaprezole without medical need, I've lived without taking them for several years just by assessing the triggers that cause the excess acid. I am amazed at the speed that they give out ppi's yet get very difficult about b12 frequency which must cost much less.

I am also amazed when talking to people just how many people are being given omaprezole! I think that it will become the next big medical scandal in years to come.

[jillc39 in reply to Alfabeta]

yes I do so agree Folkestone

[fbirder in reply to Alfabeta]

I am amazed at the speed that they give out ppi's yet get very difficult about b12 frequency which must cost much less.

Actually, each omeprazole capsule costs a smidgen over 3p. Each B12 ampoule costs the NHS £1.45 - plus the cost of the nurses time.

[pvanderaa]

B12 deficiency can arise from being a vegetarian and supplements should work as your stomach and gut should not have an absorption issue.

That said, you can develop other gut issues as you grow older that would precipitate a B12 deficiency.

The fact you got relief from B12 would indicate that you need it. Probably more frequently. And you have hit a common road block such as a GP who refuses to treat the symptoms but instead wants to rely on testing that is not totally reliable.

To build up a body of evidence for your GP, start a logbook of symptoms and treat each jab a day zero - resetting the clock each time.

Your auditory hallucinations could be your marker symptom. However record all your neurological and psychological symptoms and try to assess a severity score for each,

Provide a hard copy list which is dated to your GP each visit and ask for it to be included in your file.

Remain calm and discuss this plan with your GP and ask for advice to get him to buy into the idea of treating by symptoms..

Once the nerve damage has occurred it takes month and years to heal if you keep your B12 levels high. Any dip and the repair is damaged and the damage to the nerve resumes again.

Have you looked at removing dairy and gluten from your diet as they can contribute to gut issues?

Record your food, drink and meds in your logbook and look for a 3-48 hour lag till a symptom shows up. Different symptoms also sometimes follow each other in a pattern that repeats.

Also stop all alcohol as it consumes all the other B vitamins that B12 needs to do its job.

Are you taking folic acid and a daily multivitamin?

The logbook also supports any short term memory loss issues as you try to sort out this roller coaster of a disease.

The log can give you some control back as you start to understand your particular pattern of symptoms and you can de-stress. Stress and worry consume B12 so hopefully the tool of the log book will work for you.

[Alfabeta in reply to pvanderaa]

Thank you for taking the time to respond I find your advice and support very reassuring.

[pvanderaa in reply to Alfabeta]

I used the logbook tool to get more frequent injections from two different GPs. One in the U.K. got me to monthly hydroxocobalamin injections and the second here in the USA to get me to weekly cyanocobalamin injections.

I also convinced my GP here to let me start self injecting. This worked well as he wants annual blood tests to renew my prescription. The insurance allows me the get 4 weeks at a time. A couple of times I've also bought an extra vial if I'm going on a trip and will be running out during the trip.

To stabilize things further I take 0.5 ml twice a week and supplement daily with methylcobalamin sublinguals as needed to keep a clear head during meetings.

I spread 4.8 mg of folic acid into three doses of 1.6 mg (2x 800 ug) each day.

[Pixielula]

My own GP absolutely point blank refuses to increase my shots from 12 weekly, so during my last visit I told her I was going to start self injecting. I need to inject once a fortnight to keep myself completely symptom free, I have gone through the frustration and the unfairness and have just taken my health into my own hands.

[Alfabeta]

It's unbelievable! My practice nurse has, behind my doctors back, agreed to 10 week injections but have had repeat symptoms 5 weeks after my booster. I am using pills and sub lingual to fend off the auditory hallucinations. But what I found most worrying talking to the doctor was his view that the hallucinations are not a symptom of b12 deficiency which is just not true. I think it's a case of professional intransigence - who are you, a patient, to tell me what I need to do. We cannot expect gps to know everything but, if we do point them in direction of knowledge, they should at least bother to become better informed - they are scientists after all!

[BirgitteG]

Hi Folkestone

I have had auditory hallucinations as well - not often, but I had it a few times before I started supplementing. It was like hundreds of voices shouting inside my head, very disturbing (I knew it to be a symptom, though, so it didn'the freak me out).

Some of my symptoms were enhanced for some days each during a couple of weeks when I started supplementing, but that were some of the symptoms I have had for a longer period.

I take b12 sublingual, and a good vitamin B complex with folate (not folic acid, as I've read that some of us can't convert it) as well as a good multi vit/min and other supplements, eg magnesium. When I started taking b12 I needed potassium as well (I am hypothyroid and easily get low in potassium), and I took extra folate.

I am 66 like you, and I am so happy that I found out about my low b12 (from symptoms, as my GP only said that my blood cells were OK - maybe because I had taken a lot of vit B and the excessive folate can have masked the beginning of a PA, as I was hardly able to get around....) Now I just have to find out how much b12 I need to take to keep up the new life I have been given 🌞🌞🌞

I send you all my best wishes 💜

[Alfabeta in reply to BirgitteG]

Thank you it's reassuring to know I am not alone.