Pernicious Anaemia Society
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Started B12 injections, What else can I do to help?

So, about 2 months ago now I finally got blood work done and my b12 is extremely low, 132 ( I don't know the range but will get it from my doctor soon) My doctor said shes never had a patient with as low b12 as me, so she's a little unsure of what to do as well. My iron as also low, but not as bad. and my thyroid is just a little bit low. I've done a month of weekly b12 injections, now I'm on once a month injections. I definitley started to feel quite a bit better for a week or so, and couldn't believed I suffered so long! My charts show this has been an issue for 7 years and no one treated it or mentioned it.(ive had a few different doctors prior to this one) Over the years I've been treated for depression and anxiety. I have one more week till my next injection and I'm back to feeling horrible, tired,sore,mood swings, head aches, dizzy,numbness in hands and feet. I've read quite a bit that it can take time to level out, but I'm wondering if there is anything I can take supplement wise to help the process ? Also, I'm not vegeterian or vegan, since I get asked that alot. I eat well and don't think thats a problem. Any help is much appreciated! also trying to figure out why I'm not absorbing it.

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How people are treated from one surgery to another baffles me . My level was 137 and I was given 5 loading doses and am now in process of waiting another two weeks until first of 3 monthly. I was prescribed 5mg folic acid as folate was low . I knew nothing about b12 b4 and came out of surgery none the wiser . As doctor just said loading then 3 months for life I said is there anything I can eat to make things better and he just said won't make any difference you don't absorb b12 . I've been eating bananas as potassium can be depleted, nuts , porridge and yogurt everyday . Coconut water is meant to be good but don't feel that rubbish to give it a try. Have a spray which seems to be perking me up at moment . Other people are much more informed on the good stuff. Also have a berocca tablet too

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kindly tell me detaily about the injection dosages you received for vit b12 deficiency ....because even mine is 136pg/ml ...I'm planning to take renerve plus injection (methylcobalamin 1000mch) daily for 7 days then once in a week ...what is ur opinion ...kindly reply

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where are you based - treatment protocols vary from country to country - and monthly B12 sounds more like you are based in the US.

trying to figure out exactly what the absorption problem that has lead to a B12 deficiency can be a lesson in searching for the impossible. The current test for PA - which is the most common cause is - is prone to false negatives 40-60% of the time depending on the assay method - so a negative is a long way from ruling out PA.

Unless the cause is treatable - H pylori infection or tapeworm - the treatment is going to be the same - maintenance doses for ever.

Having said that though, if you can identify the cause that is a good thing as different problems have different consequences so you are aware of which ones to look out for.

B12 is used by a lot of systems in the body which is why the symptoms are so varied - it also means that one symptom can be an interaction of several different processes. The consequences of effects on different processes take different times to heal - anaemia takes a few months - nerve damage can take longer - but other processes will tend to recover quite quickly.

Definitely worth keeping a diary of your symptoms and monitoring how they vary in relation to symptoms. People vary a lot in how they respond to the injections and how frequently they need them as a result - and the normal range really can't be used as a guide to whether you need more once you have started on injections (unless your results are coming back very low) - symptoms are a much more effective way of monitoring when you need more B12.

Hoping that your doctor is prepared to look at more frequent injections. If not there are somethings that you can try - mainly high dose oral/sublingual tablets and sprays, nasal sprays and skin patches. The tablets need to be at least 1000mcg and possibly a lot more - they work mainly because although most of your B12 is absorbed in the ileum some is absorbed elsewhere in the gut - averages 1% - some will be better and others will be much less. However, there are no guarantees that any of these options will work for you.

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Also Ashley193 please ask your doctor to check tour Folate level as this and B12 helps your iron to make red blood cells and function properly in your body.

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Good advice from Gambit to keep a diary. I'd also suggest you take someone who can help during your next appointment. A B12 deficient brain has trouble keeping up and someone who knows you well will be able to offer excellent responses to the doctor.

B Complex and B6 (in moderation) are also very important.

I was on 3 monthly injections and it was impossible as I'd be so sick for 2 of the 3 months. Now, I self inject with the knowledge of my GP, although she is not thrilled, but recent research showed her that more frequent injections are required for patients with neurological symptoms.

So, good luck. You may need to be your own advocate.

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Hi,

If you're in US, you may be interested in

1) Book "Could It Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart

Very comprehensive book about B12 deficiency with lots of case studies.

2) B12 Awareness website

b12awareness.org/

UK B12 websites

b12deficiency.info/

pernicious-anaemia-society....

Symptoms of b12 deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you had an Intrinsic Factor Antibody test? This can help to diagnose PA but is not always reliable and it is still possible to have PA even if IFA result is negative/normal range.

I am not medically trained.

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