New to this

[katyjoa]

Hi so I'm new to this. I've started haven b12 jabs they say I only need them for 12 months. I'm just curious on wat symptoms do people get?

[Sleepybunny]

Hi,

Have your Gps explained why you need B12?

A person who has PA (pernicious anaemia) would need B12 injections for life. There are other causes of B12 deficiency that would need B12 for life.

In the UK, people with B12 deficiency and neuro symptoms are supposed to get extended loading doses and then maintenance injections at closer intervals than those with b12 deficiency without neuro symptoms.

Causes B12 deficiency

b12deficiency.info/what-are...

Symptoms B12 deficiency

b12deficiency.info/signs-an...

PAS

pernicious-anaemia-society....

Library section has a Symptoms checklist

The PAS website is not available at moment due to being redesigned but should be soon.

UK B12 treatment

patient.info/doctor/pernici...

See Management section in above link.

BCSH Cobalamin and Folate Guidelines page 8

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with UK guidelines.

"Could It Be b12" by Sally Pacholok and JJ. Stuart

Other UK b12 websites

martynhooper.com/

b12d.org

[pvanderaa in reply to Sleepybunny]

Symptoms are usually unique to an individual. Because B12 is used by so many parts of the body,

Start a logbook of all your symptoms and try to assess your own severity score.

[Gambit62 Administrator]

Unless your GP is sure that your deficiency is dietary then injections will be for life.

Generally the body is quite good at storing excess B12 so you don't need much. However, if you have an absorption problem your body will no longer be able to store B12 in your liver because the mechanism that releases it back into your blood for transportation to cells relies upon B12 being absorbed in your ileum - at the very best it will be hugely inefficient but in general it just doesn't work at all - hence the need for injections for life.

If you don't have an absorption problem and the deficiency is dietary then it would be corrected with loading doses and you wouldn't need anything past that - so just a couple of weeks and then improved content in your diet or oral supplements if you are determined not to have meat/dairy/fish.

I would seriously ask you doctor why they think you will only need injections for a year.

The only reason I can imagine for not needing it for more than a year would be a medical condition that gave you just one year to live - and I'm presuming that isn't the case.

[katyjoa in reply to Gambit62]

They done a blood test and said my b12 was low then done another to see if it was my stomach lining but all was fine and said I'd any need them for 12 months so started on injections I had my first 6 and last week had my first one off 3 months

[Gambit62 Administrator in reply to katyjoa]

okay so sounds like the second test was to look at your gastric parietal cells to see if there was sign of atrophy as a result of PA - however, absorption problems with PA can develop before atrophy (death of the cells) becomes pronounced ... and it is NOT the only reason for an absorption problem.

Where are you based?

In any case you will need either injections or some other form of high supplementation that works for you (and there may be some for whom injections are the only delivery method that works) on a regular basis as you are no longer able to store B12 - it can take a while to clear from your blood but it will go eventually and you will become deficient again, and that is a life threatening situation. You really need to find out exactly why they think you will only need shots for a year ... and you may well need to correct some common misconceptions in order to make sure you get the treatment that you need.

[katyjoa in reply to Gambit62]

They think it's down to my diet. They say I'll get another blood test soon to see of my b12 levels are going up then once I've finished my injections I'll Av another blood test to make sure it's staying up.

[Gambit62 Administrator in reply to katyjoa]

are you a vegan? there can be a tendency to think that if there isn't obvious gastric problems then it must be diet but that isn't necessarily the case.

B12 is only found in animal products - meat/fish/dairy so if you have very little in your diet then that could be the cause. However, even if you don't have much B12 in your diet that doesn't rule out an absorption problem as well.

[katyjoa in reply to Gambit62]

No I'm not vegan but I don't really eat a lot of meat fish or dairy but I have started to eat more now. I don't really under stand it all tbh I thought I would get these injections and everything will be back rite but are you saying I'll just become definecy again?

[Gambit62 Administrator in reply to katyjoa]

the amount of B12 people who don't have absorption problems need is very small as the body is very good at recycling any that isn't being used. If you have an absorption problem however, that doesn't apply and you would need very large doses of B12 because most of it will leak away.

It is generally quite rare for a deficiency to be purely dietary except in vegans or people who eat practically no meat fish or dairy.

What exactly were your symptoms and how have these responded in the last 3 months?

This is a link to a list of symptoms

pernicious-anaemia-society....

Loading shots on their own should be enough if the cause is dietary as that will have given your body enough to rebuild its stores. You would also be able to take B12 orally so further B12 injections wouldn't be necessary.

It is quite possible that any blood results now after loading and one maintenance shot will still be very high. A low result would be significant but a high result at this point won't mean that everything is okay...

If the problem isn't dietary - then it is an absorption problem and in that case you will become deficient again if you don't get the right amounts of B12 by non-dietary means.

At this stage what really matters is what is going on with your symptoms (as these indicate what is happening to B12 at the cell level) rather than the amount that is in your blood, unless the amount in your blood continues to be low.

By the sound of it you are now 3 months in to treatment. If your symptoms aren't significantly improved, and particularly if you have felt a recurrence of your symptoms then that would be a much stronger indicator that the problem isn't dietary and you need to push back on that assumption.

[katyjoa in reply to Gambit62]

I was shocked when they told me I wa b12 defiency because I didn't really have eney symptoms the only thing I got was pins and needles and now and again I feel breathless but I also suffer with anxiety as well and get a lot of symptoms with that

[katyjoa in reply to katyjoa]

After my loading shots also I felt great in my self. I had my first 3 month shot about 2 weeks ago but don't now if it's affected me as much as the 6 loading shots as I don't feel as great a I did with them but I'm just putting that down to have in a bad week of anxiety

[Gambit62 Administrator in reply to katyjoa]

I had 40+ years of anxiety and depression before I was told that my B12 was low - have never had any anaemia - I really didn't think the depression and anxiety could be anything to do with the B12 as they had been going on for so long but they went when I started treating myself with the levels of B12 that I actually need.

- from what you are describing it sounds to me as if you have an absorption problem rather than it just being dietary. However, I'm not a medic but I do know - as do most of us here - just how difficult it can be to get medics to listen.

[katyjoa in reply to Gambit62]

Thanks for all your information you have been really helpful I'm going to have a word with my doctor as he just likes to shove everything off with anxiety but wen I had my first 6 loading jabs I felt normal again was feeling great but things seem to be going back down again I'm thinking maybe I need them more then every 3 months as they are doing now

[Gambit62 Administrator in reply to katyjoa]

wish you the best of luck but I suspect that you will find the GP quite dismissive of the possibility that it is B12 and not 'anxiety'. However, you will get plenty of support here if that is the response. You may find it useful to look through these materials put together by @fbirder - another forum member - familiarise yourself with them and try to use them in educating your GP

frankhollis.com/temp/Summar...

[clivealive Forum Support in reply to katyjoa]

There are many reasons why B12 levels can be low but hopefully yours may only be due to a previously "poor diet" as you say you "don't really eat a lot of meat fish or dairy but I have started to eat more now".

Please make sure to eat plenty of green vegetables to go with your meals as Folate (B9) is important to help process the B12 you are having injected.

[Sleepybunny]

Have you had an Intrinsic Factor antibody test? This can help to diagnose PA but is not always reliable. People may still have PA even if IFA test is negative.

Link about b12 testing

b12deficiency.info/b12-test...

labtestsonline.org/understa...

Coeliac Disease

Have you ever had a test for Coeliac disease? It's possible to still have Coeliac disease even if Coeliac antibody test is negative...see link

coeliac.org.uk/coeliac-dise...

Inadequate treatment of B12 deficiency can lead to permanent neurological damage.

"They done a blood test and said my b12 was low then done another to see if it was my stomach lining but all was fine "

One thing I learnt from years of trying to find out what was wrong was that tests I was told were normal or fine over the phone or even face to face were not always normal when I got copies of the test results. I now always get copies of blood tests. I look particularly at B12, Folate, Ferritin and the Full Blood Count (FBC).

I am not a medic just a person who has struggled to get a diagnosis.

[Lily73]

Just some points to add, having read your posts, in case they are helpful...

Like you, I don't have an obvious reason for my b12 deficiency. All tests came back normal, and the colonoscopy and endoscopy showed no reason why I might not be absorbing it. The gastroenterologist told me it was just my diet, and went to discharge me. However I insisted there was no way it was my diet and luckily he listened. I had a further test (sehcat scan) that showed that, despite the fact there was nothing 'obviously' wrong with my gastro tract, I didn't absorb bile salts either. (Bile salts and b12 are absorbed in the same part of the gastro tract.) So they decided that I did have a problem absorbing b12 after all, possibly because of fast transit (everything goes through me too quickly). I do have quite bad IBS-Diarrhoea.

You said your diet has been low in b12, so that could be the reason you're deficient. But I thought it might be useful for you to know that sometimes you can't absorb b12 and they don't find a definite reason. My understanding is that diet has to be very low in b12 to become deficient. You say yours is low - how low?

Like you, I also suffer from anxiety. Anxiety is a b12 symptom, however I have had anxiety since I was an infant and as I wasn't diagnosed with b12 deficiency until I was 39, it's safe to say I have both an anxiety disorder and b12 deficiency. My anxiety got worse when I was deficient, but deficiency wasn't the only cause of it. It can be tricky working out what symptoms are due to your 'usual' anxiety and what are b12 deficiency symptoms. There can be a lot of overlap. I was probably ill for at least 5 years with low b12, but blamed in on anxiety. It wasn't until I had severe tingling limbs, started blacking out, half my hair fell out, had migraines four times a week and problems walking, that I finally realised maybe it wasn't my anxiety disorder causing it. And the downside of having an anxiety disorder is that doctors tend to blame everything on that. Just a heads up - you may need to fight your corner on the b12 front if you have a pre-existing anxiety disorder.

My GP tested my b12 levels a few times. He always tested them the day after he injected me and then told me they were ridiculously high (implying I didn't really need them). But they will always be very high just after the injection, because you've just had a massive injection! If your GP tests you to see whether you need to carry on having injections, make sure you get tested at least 3 months after your last injection. When my GP finally did that, he realised my levels were dropping dramatically and I definitely wasn't absorbing b12 from food.

Sorry that was long! I just saw a bit of overlap with my experiences so thought I'd share in case it helps. Good luck!