Pernicious Anaemia Society
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Palmed off for too long....I am not going into 2016 without injections!

Hi everyone,

I posted in here a few months ago and cannot thank everyone who replied enough for there kind words and support.

Unfortunately even with the multitude of guidelines presented to my GP he decided I was actually still "pretty much within range" with a B12 level of 140 and sent me away to go buy oral supplements.

I saw a private specialist which cost be alot of money and he said to me after i explaimed i had only started oral supplements the week before, "well that will be nice and high now!"

It feels like I am trying to make baboons understand about nuclear physics.

I would appreciate some advice...

I have to admit I have felt better in some ways since starting the B12 supplements but the improvement stalled pretty quickly. I stopped the oral pills 2 weeks before a B12 blood test (annoyingly I am sure it will show my levels are high and fine) and by the middle of the second week I was seriously unwell again, pains in limbs, bad memory, brain fog, tiredness to the extreme. I have started the B12 pills again but I know I need the injections as even at my best I am pretty bad.

Any advice for how to broach this with my doctor would be greatly appreciated.

Also should I prepare for a high B12 result for my bloods....and could it be right?!?! I am not sure how long you have to go without supplements to get an accurate reading...but I couldnt last more than two weeks at this rate.


5 Replies

Have you thought about the other tests that can indicate B12D ? Like Homocysteine and MMA - which is a urine test. Having your anti-bodies tested for PA could be helpful and will not be affected by taking B12.

Are you taking a GOOD B complex to keep all the B's in balance. One that contains either Folic Acid or Methyfolate which works within the body to hold onto B12 longer.

Taking supplements can skew your results for B12 for months - so yes prepare for a high but possibly meaningless result.

If you haven't seen the above website - it can help you with everything you need to about B12D.

Do you have neurological symptoms ? - if so then the GP should treat based on those alone - with injections until the symptoms subside. Can you walk heel to toe in a straight line without being wobbly - if not then you have neurological damage. Ideally you should be able to close your eyes too :-)

I cannot even start the heel to toe and have to hold onto something :-(



I havent had the urine test.....i didnt even know about that one.

I have had the PA antibody test which was negative but alot if people on here enlightened me to the fact you can still have PA and have a negative test.

I have had thyroid, diabetes and a load of other blood tests ruling out other causes.

I am taking a good complex thanks to my mums intervention :) and am on iron and vit D supplements too as those were deficient as well.

i just tried the foot to heel and couldnt get past first two steps without wobbling and nearly falling over.....for a 28yr old I am not sure whether thats particularly good.

I am just sick of feeling awful all the time and the tingling in the little fingers of my hands is constant atm. Plus I have recently had little patches of tinitus...dont even know if that is related.

the ironic thing is my short term memory was so destroyed earlier this year I cant remember the majority of my interactions with doctors and work colleagues.

i am just so annoyed that even pesenting with neurological symptoms my GP didnt offer loading dose injections.

thats why I want to make sure I get them soon.

Thanks for the help!


Time to read Martyn Hoopers book - Pernicious Anaemia - The Forgotten Illness - and B12 Deficiency. He is the Chairman of the PAS. I read in the book that a questionnaire was sent to 1000 PA sufferers asking them their biggest problem symptom. Almost everyone answered - tinnitus.

Could you contact PAS - contact details on their website. Leave a message and someone will get back to you.

Do you have all the latest Guidelines for the treatment of B12 and Folate deficiency ?

PLEASE try to read the link I gave you - the MMA is a urine test but not the Homocysteine. The website will tell you far more than I can - or any GP come to that. Information is power :-)


At the end of the day you do have the choice of walking away from the baboons and just get on with doing the nuclear physics for yourself.

Its not ideal but it can be a hell of a lot easier.


Do you keep a logbook that you can use as evidence about what symptoms and how severe each one is?

Monitor these along with your food and drink in order to eliminate any new allergies that are showing up.

The log also serves as your short term memory. It also helps to validate that you are not a total hypochondriac. This may be part of the issue with your GP.

Some testing labs here in the USA (not that this has ever held sway with any medical person in the UK) add a caveat to B12 test results that 10% of the population exhibit neurological symptoms when the results are less than 400 ng/L.

The Japanese have adjusted their minimum to 500 ng/L.

Your results are at the minimum and your GP should stop faffing about and start you on B12 injections based on your neurological symptoms.


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