b12: hi, im new to this. My gp as... - Pernicious Anaemi...

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b12

katbalou profile image
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hi, im new to this. My gp as tested my blood for b12 it as come back as 188 and said its normal...im suffering really bad with sweating,fast heart,shaking,pins and needles,weak legs,palpetations ,tiredness etc.........just dont know what to do, i get rushed to hospital with fast heart and weak legs but just get sent home. Any advise plz?

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Gambit62 profile image
Gambit62Administrator

you could try going back to your GP after giving him this information which was put together by another member of this forum

frankhollis.com/temp/Summar...

it goes through a number of issues around B12 diagnosis - including going by numbers when the B12 serum test is known to be flawed and needs to be looked at in conjunction with symptoms

You could also try joining and contacting the PAS on their website - they may be able to intercede and talk to your GP for you - I think there are also some resources including a letter that you can print out and take to your GP about diagnosis and treatment

pernicious-anaemia-society....

188 is usually considered as low but labs have different ranges. It might be helpful to get a printout of your blood results from your surgery so that you can see where your result is within the range. It should also show your folate level. If this is low or near the bottom of the range you will feel awful with that b12 level.

Polaris profile image
Polaris

Your B12 is low and I'm so sorry that you're having such a struggle to convince your GP to treat you on your symptoms as there is no reliable test for B12 deficiency.

The main thing to concentrate on is getting enough B12 quickly (even if you have to self inject) as you already have neurological symptoms. You probably already know that adequate treatment as defined by the BNF 'until no further improvement' with injections and supplements from the outset is essential but many doctors fail to realise the importance of this:

Here is the latest BMJ research document with a useful summary in case GP won't read the full text:

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)

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."

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