B12 results: Hey so I've just come back... - Pernicious Anaemi...

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B12 results

Nathan12345 profile image
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Hey so I've just come back from the doctors with an updated b12 level count, it's at 546 now, 7 weeks ago it was 179, i still have symptoms of low b12 and was wondering if this is normal (no problem with me absorbing it so i don't have P.A)

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Nathan12345
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Polaris profile image
Polaris

B12 deficiency symptoms are very subtle to start with and take years to manifest. They are often the result of an inability to absorb B12 through the small intestine for diverse reasons, coeliac disease, a family history of Pernicious Anaemia or other autoimmune disease, etc. I notice you are on vegetarian diet and this may also have left you you deficient in B12.....

Your neurological symptoms should, therefore, be treated urgently and adequately with injections as defined by the BNF 'until no further improvement'.

Once b12 treatment is started, the test results don't mean anything (bottom of page 4 of the BMJ document below) and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

*It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

The above UK research document is supported by many research papers and is peer reviewed.

b12deficiency.info/b12-writ.... (templates and an excellent film)

Nathan12345 profile image
Nathan12345 in reply to Polaris

Thanks for the reply, i asked her about injections but she said keep supplementing and the symptoms should evetually go on their own

Polaris profile image
Polaris in reply to Nathan12345

Adequate treatment with injections and supplements from the outset is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this:

My vegetarian relative's surgery failed to treat her B12 adequately with injections and later admitted that the Cyanocobalamin they had been prescribing were useless! She did find that Jarrows methylcobalamin 5000 mcg. taken sublingually helped neurological symptoms (available from Amazon).

stichtingb12tekort.nl/weten...

"The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Nathan12345 profile image
Nathan12345 in reply to Polaris

Hi Polaris I've put in an order for the methylcobalamin 5000 mcg tablets from amazon (jarrows) so just waiting for them to turn up, did your relatives neurological symptoms dissapear eventually with taking the 5000mcg?

Polaris profile image
Polaris in reply to Nathan12345

It was complicated Nathan. Unfortunately her B12 deficiency was not discovered until late in life after years of misdiagnosed ME and the surgery failed to treat urgently and adequately with injections.

I hope you feel better soon.

Nathan12345 profile image
Nathan12345 in reply to Polaris

Ahh, sorry to hear that hopefully he/she is feeling somewhat better and thank you

Twench profile image
Twench

For the purposes of repairing nerves, 546 is still on the low side and it would be preferable to have a course of loading doses. However it sounds like you will hit considerable resistance so you could try high dose sublinguals instead to get the levels higher. I take 3 x 5mg a day in an effort to keep my levels >2000. Any less on the tell-tale tingles just roll right on back.

Nathan12345 profile image
Nathan12345 in reply to Twench

Yeah i had a feeling if it was high they wouldn't give me any injections (not even loading ones), i guess I'm going to have to be one of the many on here and treat my symptoms myself, i have noticed some difference but it's only slight so fingers crossed with supplementation i can get better and put this behind myself as its been one hell of a rocky adventure

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