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Pernicious Anaemia Society
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B12 levels of 32, need some advice!

Hi,

I’m new to the forum and wondering if anyone can give some advice as I just got blood test results back and my B12 level is 32 pmol/l . I’m feeling horrendous and my GP isn’t forthcoming in offering injections so I’m looking to buy them myself to self administer. Can anyone tell me where I can buy them online and is my B12d level particularly low?

Many thanks

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Are you in the U.K? Laura74-max

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Hi,

Yes, I’m in the UK. I’m going for more blood tests on Monday and think will ask to see another GP as I believe I should be offered injections...

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Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Your doctor should be treating your symptoms not just looking at the computer screen.

You could also ask to be checked for Intrinsic Factor Antibodies to determine whether your B12 deficiency is caused by Pernicious Anaemia.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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Many thanks for your advice also, I will go back to see another GP next week....

Thanks again!

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Yes, your B12 level is very low . I’m surprised you are capable of sending your message. You must be feeling terrible . I had to resort to self injection , after a terrible fight with my GP . I get my ampoules from versandapo .de. a very good German online pharmacy . You get straight through to their website in English if you google “ versandapo “ I believe you need to register the first time you use them . Then search for Vitamin B12 . I use the 1mg x 1ml ampoules from Rotexmedica costing 8.99 Euros for 10 or 55.90 Eurosfor 100 ampoules . You can scroll roll through and see that they also offer 1mg x 2ml ampoules from Hevert . These are all Hydroxocobalamin , which is the B12 that is used in the UK —8 Euros for courier delivery no matter how many you order .

Then you will need to decide if use sub- cutaneous injection or Intra -muscular . So I would goggle these methods , and make your decision . Then we could tell you which needles you need . All other stuff ,needles ,syringes , swabs and sharps disposal bin, can be bought from Medisave here in the UK. or Amazon . You can take charge of your health . It’s changed my life! All the best .

Also after you have started injecting , make sure that you are getting plenty of folate in the shape of drenched leafy veg . Or take it as a supplement called folic acid ( vitamin B9 ) It works with B12 and is very important .

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Thank you so much for all that advice! Very much appreciated and I’m going to order them up. How long did you wait until you checked your B12 levels again after the injections?

Thanks again

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I suggest you don't start self injecting until you have had the further blood tests on Monday. Ensure your Folate is included and also the Intrinsic Factor Antibodies (if the doctor decides to go down that road).

Supplementing before the tests will "skew" the results.

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Thanks Clive, I’m going to ask them to test for IFA to rule out pernicious anemia...I haven’t been taking any supplements for a while. I have awful pins and needles constantly in my arms and legs so hoping I can get injections from the GP initially...

Many thanks for all the advice.

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I felt so well that I've not had my levels checked in 2 years . There is no need really . You will have very high levels once you start injecting !

I would give myself loading doses initially like you would get at the GPs That is 6 injections over 2 weeks . Then you will eventually find how often you need to inject . If you still have neurological symptoms then every other day till no improvement .

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Not drenched veg but GREEN ! The gremlins got in !

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Your levels are horrendously low Laura and it's totally negligent of your GP to ignore this result!

You'll see lots of information in the pinned posts on the right hand side of the forum, as ultimately it would better in the long run to be monitored by your surgery and be able to get to the root cause:

bmj.com/content/349/bmj.g5226

In the meantime, you probably realise and will see from the BMJ latest research summary (GP should be able to access full document), that low B12 left untreated or inadequately and without delay can lead to permanent neurological symptoms:

healthunlocked.com/pasoc/po...

I've been self injecting for six months and, although progress can be slow and symptoms may get worse to begin with or come and go, I feel very much better.

Very best wishes for better treatment.....

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What was the range associated with the test? was it private or done by GP

I think these must be the results of active B12 rather than serum B12 as I don't think the serum B12 would be able to pick up levels that low.

If that is the case then you will actually be in the normal range, though a little on the low side.

Unfortunately the symptoms of B12 overlap with a number of other conditions. Have these been ruled out?

Think clivealive has probably covered the bases in terms of tackling your GP

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