B12 deficiency

[Alfabeta]

Hi All

I was diagnosed as b12 deficient over 6 years ago. I have been reading blogs and their answers for most of that time and I have not found any correlation between my symptoms and the symptoms regularly reported on here hence I can only assume that I do not have pernicious aenemia!

Is b12 a deficiency a condition in its own right rather that a precursor to other diseases such as PA? My GP and the nursing staff have automatically assumed that I have PA and when I tell them about my symptoms they say I am the only patient with such symptoms and continue with the injections.

I no longer discuss my symptoms with them because some members on the site have reported horror stories of being assumed to have psychological problems and taken down the mental health route. Indeed, on speaking to an ‘expert on b12’ on the Benenden site, I was asked about depression etc and had to end the call before telling the expert that that had hearing deficiency linked to an inability to listen.

On the b12 deficiency site, my symptoms are fully recorded but doctors just seem ignorant of it being a condition in its own right rather than a condition that either leads to other conditions or is caused by another condition such as cancer.

I am physically well and have been for six years. The majority of my symptoms ceased very quickly once the injections started and those that remained have diminished significantly over that time.

My recurring symptom was a sequence of events:

1. I would get a pins and needles sensation mostly on my right side and in the front part of my brain leading to a semi conscious state similar to the stream of consciousness episode in films where the character is considering the situation while the situation is still visible and audible.

2. Tinnitus would occur - a loud sound like static on the old radios.

3 auditory hallucinations which, like in dreams, seems to make sense whilst occurring but make no sense afterwards.

Over the six years 2 ceased after two years and 3 after about 4 years part still occurs occasionally but in a much shortened truncated way.

Symptom 1 persists but very briefly lasting about 5 seconds.

Once I receive my b12 injection, I am perfect for 6/7 weeks then I get about 6 days of the symptoms recurring - up to 8 events on the first day then diminishing over the period to 1 or 2 recurrences.

I then tend to be okay for the rest of the 12 weeks. However, in the last three 12 week cycles, I have started to get 1 or 2 episodes days before and sometimes on the day of the injection. I have put this down to running low onb12. I supplement with 10mg b12 tablets and a multivitamin daily.

I am just finishing week 6 of my present cycle and had 8 attacks on Thursday however, this time I bought a b12 spray and have been using it as well as my tablets and, for the first time, I have not had any further attacks in Friday although I kept feeling the attacks seemingly wanting to start but drawing back. Today, Saturdays, the same.

Bit of a novel but I hope it helps someone who is feeling similarly isolated and suffering alone like me.

[clivealive Forum Support]

Hi Alfabeta the BNF guidelines have changed recently regarding B12 injections - see link below:

bnf.nice.org.uk/drug/hydrox...

Indications and dose

- For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Alfabeta in reply to clivealive]

Thanks, Clive, you’re a saint. However, I might as well talk to a tree as my doctor and nurses.

[wedgewood]

P.A. has so very many symptoms . It affects the myelin sheath that covers the nerves , so that is why there are so many different symptoms . We usually get a pick and mix selection of about 5 symptoms , but it varies very greatly from person to person . Also the regularity of injections required to keep the symptoms at bay also varies from person to person ( medical profession does not acknowledge this unfortunately. ) May be to do with how long it took to be diagnosed and treated , but we don’t know .I know people who are fine on a 3 monthly injection, but also know people who need to inject twice daily ! I need one a week. I only benefit from injections. No amount of sprays or patches help me one iota . So you see what an amazing spread of different amounts of treatments are required . Unfortunately the medical profession is not knowledgeable about PA , so we often have to be responsible for our own treatment . Many of us have to self-inject. ( it’s easy and cheap luckily) It’s great if sprays help . But if you do have PA , then normal oral tablets would not help at all , only possibly sub-lingual lozenges .( The pareital cells in the stomach are attacked by antibodies . The pareital cells produce stomach acid and the Intrinsic Factor , both of which are required to extract and absorb B12) The usual test for P.A is the Intrinsic Factor Antibody test , which is notoriously unreliable if you test negative . If you had that test and it was positive , then it’s more or less certain that you have P.A. , which is an auto-immune condition , and seldom comes alone . Some PA. Patients have a thyroid condition . I have very mild Rheumatoid Arthritis. But there are many more.

One does need to have the correct treatment ASAP , because , if delayed , irreversible damage can be done . Very best wishes to you .

[Alfabeta in reply to wedgewood]

Thank you for your response,Wedgewood. Pernicious aenemia is a consequence of b12 deficiency caused by the inability of the body to absorb it from foods or supplements containing it and the majority of correspondents on here record the consequences of that lack of absorbency. The vast majority of people describe the same symptoms but I have read of no-one with my symptoms.

My b12 deficiency was caused by being a vegetarian/vegan and being prescribed omaprezole daily for over 6 years. I have assumed that I can absorb b12 naturally although this is only an assumption on my part!

I certainly have damage to myelin sheath most likely in the front part of my brain as I get tingling here followed by the outbreaks of tinnitus and auditory hallucinations (the latter two, thankfully, having gone or diminished for the most part). This condition is recorded on the b12 deficiency site but I have read of no-one on this site with the symptom.

Thank you for your response, I find all your posts very kind, thoughtful and helpful.

[wedgewood in reply to Alfabeta]

Sorry , I didn’t realise that your B12 deficiency was due to diet and Omeprazole . Omeprazole alone can cause terrible problems when taken over several years . I know someone who got totally numb feet and numb legs up to the knees, from B12 deficiency caused by Omeprazole, taken for 10 years . Never diagnosed . Had 2 spinal ops -to no avail of course . Now has irreversible numbness . She is now in a wheel chair.

Well that means you can absorb b12 orally , if you can give up Omeprazole . But it’s much better for you to have injections until there is no further improvement in the symptoms. If you cannot give up Omeprazole, which would be advantageous for the absorbtion of other vitamins and minerals , it would also be best to stick to injections. Self Injections are the most efficient and cheap way to supplement B12. Buying in bulk, an injection costs me just over £1.00.

I also had hearing problems which have improved a lot over the 3 years that I’ve been self-injecting.. My numb feet have gone . I’m just left with feet that feel very very hot ,but are normal to the touch. I can put up with that . I’m even optimistic that they might normalise completely . I don’t know how long I was deficient. The first symptoms creep up insidiously .

I have read often on this forum of people having tinnitus and auditory hallucinations when they have PA . PA is an incurable B12 deficiency condition . No cure yet. You have every hope of being cured , if you can stop taking the Omeprazole . ( and any other Proton Pump Inhibitor or antacids . )

It’s lovely to have this site . It’s been great for me !Hope it is for you too . All the very best .

.

[MelanieV]

I am getting my first injection on Tuesday. I don't know if I have PA but I think it is some sort of b12 deficiency related to hashimotos, even though my blood work is in normal range. As I have learned on here, you cannot go by blood tests. I was wondering, did you notice a difference after the first injection or did it take more than that?

[wedgewood in reply to MelanieV]

I noticed a huge difference after the “ loading doses” ( 5 injections over 2 weeks ) But my symptoms returned rapidly before my maintenance injection was due , after 3 months . But my GP refused to give me more regular injections , so I had to self-inject to keep well . Yes thyroid problems often come with PA . If you read the messages on this forum you will know that . Both conditions are auto-immune .

[Alfabeta in reply to MelanieV]

Most of my symptoms ceased very soon after the injections began. Extreme fatigue stopped immediately, blurred vision ended within weeks but my nominal aphasia and memory problems started to improve and, after six years, are almost back to normal.

Good luck, it can be a long journey back.

[Cherylclaire Forum Support]

All of my symptoms seemed to get a lot worse before getting any better, and only stay mainly better if I self-inject every other day. Symptoms for me are always "waiting in the wings" and although I have been recording some of my symptoms for years, can find no pattern that sticks: activity, diet, etc. no real triggers.

I did not feel my injections, not for a very long time. Because I had the injections given to me in the back of my arm, could not feel anything at all and felt no better although people on this forum did, I started to think that maybe the nurses weren't actually injecting me at all! I was so happy when I finally felt a needle go in !

I have read many instances here of both tingling (or numbness, pins and needles, crawling ants under skin, etc) and tinnitus (or white noise), and have regularly had both these symptoms in the past.

People seem understandably more reticent about hallucinations, but I have read about particularly auditory, but also visual and olfactory hallucinations on here. Something most people don't choose to discuss with GPs, and so unlikely to be NHS listed !

Have sometimes had to check with others re. smells no-one else detected.