B12 deficiency

[Alfabeta]

Hi

I am a vegetarian verging on vegan and was put on omaprezole by my various doctors to counter acid reflux. I had a 10 mg tablet every day for quite a few years at least six years without a break and, previously, after a break of several years for around three years.

I had found for several years that I was becoming inarticulate and having severe memory problems as well as bouts of extreme fatigue. Then, out of the blue, I started to get blurred vision and what I call for want of a better name absence seizures during which I would get tinnitus - it was like a bad radio signal on an old valve radio - this would end in a sense of euphoria coupled with auditory hallucinations- a dream like sequence which seemed to make sense whilst in it made no sense afterwards - as with certain types of dream seem real while one is them but make no sense afterwards.

These events would last no more than 10 seconds.

I was diagnosed with very low b12 - my nurse gasped at how low it was but I do not know the figure!

I have been having injections for nearly three years now and, as reported so often on here, most of my symptoms disappeared immediately but the signature symptom - absence seizure, tinnitus, auditory hallucinations continued.

I would have no symptoms for about 6/7 weeks them they would recur and last for about 5 day’s then cease until the next injection. The fist day I would get around 5/6 events lasting about 10 seconds then they would reduce in frequency over 5 day’s.

This continued until around 9 months ago when the tinnitus and auditory hallucinations ceased and only the absence seizures occurred. In the last six months the frequency has changed. After the last two 12 weekly injections I have had the absence seizures occur soon after the injection lasting up to five days then they cease then recur 7/8 weeks later again for up to five days.

I’ve stopped telling the doctor and the practice nurse about them - my doctor has stated that my symptoms are categorically not symptoms that he recognises but takes no action - the nurses tell me that they inject lots of people with b12 and that I am the only one who has my symptoms.

My nurses have totally refused to increase my injection regime.

I think that the underlying problem is that both my doctor and the practice nurses think that b12 deficiency and PA are one and the same thing which is u true from what I have read.

PA appears to be caused by the inability to absorb b12 and, in some case b9 whereas my deficiency was caused by a lack of b12 in my diet combined with taking omaprezole- a drug which, in my opinion, should never be given to a vegetarian/vegan! I think such a prescription is verging on medical negligence.

I think I am getting better given that my symptoms have improved - although this might be akin to a fool’s summer when sunshine occurs between rain storms.

I understand the symptoms returning after 6/7 weeks when my injection has possibly worn off but I do not understand why The symptoms then stop until my next injection - one would expect them to continue!

I also do not understand why, after the last two injections, that the symptoms have occurred so soon after the injections

1

[Johnathan]

It has been noted that vegans suffered disproporitonatley from neurological symptoms and other physical disorders. I therefore do not believe that a vegan diet can have any serious claim to be a healthy diet.

That being said - it is a belief sysem akin to a religion and therefore held by its adherants without need of proof of validity. It's practitioners rarely like it being challenged as an unwise lifestyle. It is quite possible that you are now an "Obligatory Vegan" - that is your liver has shut down your ability to process meat by stopping production of the necessary enzymes. In these cases eating meat causes an upset in the digestive system.

Your acid refluxing sounds like a standing infection by Helicorbacter pylori which reduces stomach acidity by supressing the parietal cells. These cells also produce the intrinsic factor needed to absorb B12. Omaprezole is a Proton Pump Inhibiter. It reduces the acidity of your stomach by supressing the parietal cells further. This reduces the reflux-burn to your easophagus when you reflux stomach contents and therefore you feel the symptoms less. I doubt that it is having a positive effect on the actual cause, as a lower acidity regime is exactly what a HP bacteria needs to prosper. The combined effect would be to produce a stomach environment that will not strip B12 out of your diet. This is perhaps an academic observation as there is little - probably none - in your diet anyway as you are vegan.

With respect to your specific symptoms: it is possibe that your neurological disorders are becoming permanent - hence the recurrance soon after your injections.

I strongly urge you to take positive action to resolve this without delay. Firstly get tested for HP. The most effective remedy that I have found is Gum Mastic capsules available from health food shops under the trade name "Mastica". This is a food-grade gum in capsule form and completely non-toxic (it is used as a flavouring in Middle Eastern cuisine). Alternatively - you may wish to go down the antibiotic route in consultation with your doctor. (I will not comment on this).

Lastly - and probably most difficult - consider whether your diet has improved or degraded your health. In this case the proof of the pudding is very much in the eating!! If you are able you may wish to consider that in your particular case, veganism has been a resounding failure and that organic (grass fed) meat should therefore be gently and progressively re-introduced into your diet. I have said this to many vegans and thus far has always been unwelcome. Nonetheless it is well-meant, not without foundation and from someone who wishes you well.

[Alfabeta in reply to Johnathan]

Jonathan, thank you for your response. I am not a vegan either in the proselytising sense or in my diet! I disd stop eating cheese for a while which, more or less, made me a virtual vegan because the cheese caused my acid reflux - at least I think so.

I could argue about a number of things that you say about a vegan diet but you forget that b9 - folic acid is also essential and the lack of this vitamin in modern diets is as serious as b12 depletion!

Other than liver (which few people eat) I do not think folic acid can be obtained from meat and dairy - but I am not an expert on this so I accept that I might be wrong and stand to be corrected.

Many of the men that I know (not so many women) eat excessive amounts of meat and do not eat the vegetables especially those that contain the most folic acid. This is not a healthy diet.

I do agree with the diet that you suggest which I think is becoming very popular - its got a special name which connects vegetarian with part meat eating but I forget it’s name.

Thank you for your response and advice.

[Johnathan in reply to Alfabeta]

I did not mention B9 because it is very unlikely that a vegetarian is deficient in folate as it will be present in significant amounts in the bulk of your diet - and the post was already a long one. There is no argument that eating excessive meat is not good for you. I totally accept this. But that is not the issue here. There is a world of difference between "sufficient" and "excessive".

The ball is in your court. Perhaps it is time for quiet reflection. Best of luck.

[spacey1 in reply to Johnathan]

Johnathan, this isn't a forum for presenting criticism about dietary choices.

I think it is fair to suggest that a vegetarian might take the option of introducing meat, but entirely reasonable of them to decide not to do so, if they wish. Veganism is not a religion, but it can be a philosophical and ethical choice. It isn't your choice, but that isn't to say it's wrong. Any diet may include or exclude particular nutrients, and there are plenty of dietary choices out there which could be far more unhealthy than vegetarianism /veganism.

[Johnathan in reply to spacey1]

This is a forum for B12 deficiency and a vegetarian diet is germain to the issue.

[spacey1 in reply to Johnathan]

Criticism is not generally the most helpful way to approach a difficulty. This forum is notably extremely supportive, and very helpful for being so.

[Gambit62 Administrator in reply to Johnathan]

johnathan, this is NOT a forum for B12 deficiency

- it IS a forum for people who suffer from specific problems absorbing B12 from their diets, to the extent that the presence or absence of animal products in their diet is totally irrelevant.

Strictly speaking discussion of dietary choices is off topic.

[Gambit62 Administrator in reply to Johnathan]

I think that Folkestone actually meant to refer in the reply to B12 - the remarks made fit with B12 deficiency rather than folate deficiency.

Personally I suspect that Folkestone's deficiency is not dietary and the acid reflux could well be a symptom of low stomach acidity - which is a consequence of PA rather than high stomach acidity.

[Alfabeta in reply to Gambit62]

HiGambit thank you for your response - I felt Jonathan’s response was unhelpful to say the least!

I have been a vegetarian for over 25 years but became largely vegan for about three years prior to my b12 being tested and found to be very low - the practice nurse told me this but I did not ask for the number so I don’t know how low.

I had been on omaprezole for around six years on six monthly repeat prescriptions- my doctor never asked me about my food orientation nor did during all that time test my b12 levels.

When the NHS site names omaprezole and ppi’s generally as potential causes of b12 deficiency it does appear to be medical negligence on my doctor’s part - and this scenario must be occurring all over the country!

But I think that, as yet, I do not have PA as there is enough evidence to suggest that the lack of b12 in my diet coupled with the omaprezole caused the deficiency.

Either way, it doesn’t really matter as both illnesses require b12 supplementation.

Jonathan’s involvement has rather got in the way of my questions at the end of my initial posting and I wonder if you could help me with my questions.

Imy signature symptom was an absence seizure (for want of a better name) during which tinnitus occurred - like the interference on an old valve radio caught between stations - followed by a sense of euphoria and an auditory hallucination like a dream - the events lasted about 10 seconds. I no longer have the tinnitus or auditory hallucinations just the absence seizures hence it could be assumed that I am getting better or simply entering another phase of the illness.

I cannot discuss any of this with my doctor or the nurses as my symptoms do not relate to PA - they relate to b12 deficiency and I have come to the conclusion that they know nothing about b12 deficiency as an illness it itself without PA even though the NHS site recognises both it and folate deficiency and describe my symptoms- I have told them about them - the doctor said my symptoms were not related to b12 the triage doctor said the same and the nurses said none else had my symptoms this includes one of the nurses who is being treated foe b12 deficiency. In fact she told me that b12 deficiency is nearly always symptomatic of an underlying illness.

I had my b12 injection on Wednesday last and yesterday had 9 absence seizures- today I only had a partial seizure. The last injection 12 weeks ago, I had seizures over five days two days after the injection.

Previously I only had the seizures six to eight weeks after the injection.

Sorry for writing so much but, unlike most of the PA posters on here, I haven’t suffered from exhaustion since I started my injections in this respect at least one aspect of my cloud has a silver lining!

[Gambit62 Administrator in reply to Alfabeta]

Folkestone, I don't have an answer to your question - the only thing that comes to mind is that the seizures may be due to the interaction between B12 and some genetic variants that are affecting some of the processes used for regulating nerve signals - eg a COMT variant. However, this is clutching at straws and is not an area that I would expect any GP to be familar with, given that they are generalists.

I still suspect that the reason you were prescribed omeprazole was actually the result of an absorption problem and that the omeprazole has then amplified the underlying problem rather than either the vegetarianism or the omeprazole being the causes themselves.

Unfortunately GPs are generalists so things do, inevitably get missed. Recent reviews have shown that the whole set up really doesn't work for patients with chronic conditions as a result - not least because the lack of continuity of care increases the risk of overlooking things, along with the whole culture of 5 minute consultations where you can only discuss one symptom.

[Alfabeta in reply to Gambit62]

Thank you, Gambit sleep well.

[Marybrown06]

Hi Folkestone,

If you think your deficiency comes from diet, maybe oral supplements would be efficient? Have you already tried?

I have noticed that I have some B12 symptoms when I take too much B12 (tingling and numbness for instance).

Johnathan, when you became vegetarian for ethical reasons, I think it is almost impossible to eat meat again. But oral supplements can give you the same B12 amount as meat

[Alfabeta in reply to Marybrown06]

Thank you for your response, Mary. I take a multivitamin daily and a 1mg b12 tablet daily and I use an oral spray and have an injection every 12 weeks. I accept the point that this might be overdoing it but so many people on here self inject daily and twice and thrice daily at times.

I have read on numerous occasions from the administrators that some people get a reaction to the substances in the tablets which may what causes your symptoms.

I found Jonathan’s points singularly unhelpful and stating facts which were really opinions and surmises.

As I understand from the administrators the symptoms are the repairing of the myeline sheath on the nerve endings throughout the body which were damaged by the b12 deficiency. However, it could be equally as Jonathan states that my diet has shut down my liver in response to b12 and, as such, the b12 is poisoning me. I think that was the gist of what he was saying.

[SusanLMckinney]

You have two strikes against you. Being a vegan and using acid blockers. You should have had large loading doses. I had one shot a day for a month, 2 shots a week for a month, 1 shot a week for a month and then 1 shot a month for life. My levels were undetectable and I was a total mess. Too many symptoms to list here. When your nervous system is dying anything can happen. You need to have levels tested, when you get them on high normal, then continue shots once a month for life. Although I have been mostly on the sublingual (Natures Bounty liquid 5000mg) for a year and was tested at a little high. God must have meant us to use animal products because there is not other way to get B12 naturally.

[Alfabeta]

Susan, it is hard to see how your response to my problem is helpful! I am not a vegan - a stopped eating cheese because it was causing my acid reflux and this enabled me to stop dozing myself with omaprezole- unfortunately, not knowing anything about b12 or b anything else for that matter I became deficient and I am suffering the consequences of my ignorance.

In this respect, I cannot see how your response is in any way helpful. I have never entirely been without b12 as I have soya milk and yoghurt daily and other foods that have b12 added to them. I was simply not getting enough and the omaprezole wiped out the little that I was getting.

As for God intending us to be omnivores perhaps you would like to explain how the vast majority of posters on this site are omnivores yet, because of illness or low stomach acid, they cannot extract b12 from the animal products that they consume?