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Ekkie12 profile image
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Hello. On here to find out more about B12 deficiency. I've just findished a treatment of injections. My blood serum level was 130 - I've no idea if that's bad or just ok!

Not had any info from my GP about it.

I also have CFS and other stuff!

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Ekkie12 profile image
Ekkie12
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5 Replies

Hi Ekkie12,

Firstly welcome here! Your serum B12 levels depends on the ref range of normal used by your lab, but low is low and treatment has started, which is good.

Take some time for your self now, its taken years to become B12 def, it will take some time to undo damage done by lack of B12. Sleep as much as you can eat well, no or little alcohol etc, it will all help you. Also make sure serum folate and ferritin (+iron storage) are tested as its not uncommon to find these two deplete once B12 treatment has started. taking a multi vitamin can help. Get copies of blood tests so you know what has or not been tested and what changes over time with treatment.

Learn as much as you can about PA, some links that you may find interesting, see:

patient.co.uk/doctor/pernic...

emedicine.medscape.com/arti...

bcshguidelines.com/document...

Remember it can take a bit of time to actually feel the benefit of the B12 injections (took me 3-4 months), hope you will feel a lot better soon,

Kind regards,

Marre.

Ekkie12 profile image
Ekkie12 in reply to

Thank you ever so much for your reply.

My ferritin levels are also low and I'm using Spatone sachets as I don't tolerate iron tablets.

All I know is my B12 was 130mg. Apparently less than 200 is a severe deficiency.

With my CFS I'm used to the idea of resting but I'm on my own with three kids so am like the living dead most days!

I really do hope these injections kick in soon. Blood test in 3 months time and will get a record of the results :)

Ekkie

Secondchance profile image
Secondchance in reply to Ekkie12

Hope you start to feel better soon. If you have neurological symptoms push for at least 2 monthly injections as per BCSH guidelines. Also get copies of blood results to check your folate and blood count etc.

Gambit62 profile image
Gambit62Administrator

It isn't uncommon for GPs not to know much about B12 ... and to have a load of misconceptions ... I wasn't told anything at all following a diagnosis in a teaching hospital ... and my GP was clueless and not prepared to listen when I'd finally figured things out about 15 months later.

There are some good books out there - Could it Be B12? by Sally Pacholok is a good starting point.

Hope you have a GP that is prepared to listen and work with you to get the treatment that you need.

pvanderaa profile image
pvanderaa

Keep a log of your meds, food, drink and exercise and your symptoms.

Some symptoms will result from the jab as you detox. Also as you improve you will probably unconsciously become more active and you may get symptoms from over doing it at first.

Here is the USA some labs add a caveat to B12 results under 400 pg/ml that 10% of the population exhibits neurological symptoms.

This is more than just tiredness. I.e. Confusion, brain fog, depression, anxiety, pins and needles in fingers and toes. The log will help identify which symptoms are food related and which are more permanent.

Also the log will be a memory to assess your improvement so try to make an estimate of the severity of the symptom (I.e. 1-10 or high, Ned, low ) that you czar look back and compare to.

Your symptoms will be different from other people but you can get confirmation here as someone will have had a similar symptom.

Food related symptoms do not appear until 6, 12, 24, 48 hours after you eat something due to the gut and hepatic loop recycling toxins through the gut.

You are on a roller coaster ride of highs and low. The log helps you sort them out and regain some control and stability.

Thanks,

Paul

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