High B12 Level: Hi my Practice Nurse... - Pernicious Anaemi...

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High B12 Level

lorikelly profile image
8 Replies

Hi my Practice Nurse told me today that my B12 levels were high on my last blood tests. Can anyone advise as to why this would be? I was in the middle of my 12 wk jag cycle. I haven't been feeling particularly energised..... so am a tad confused??

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lorikelly profile image
lorikelly
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SusieHaigh profile image
SusieHaigh

The more jabs you have the higher your level will be but this does not mean you have high levels of usable B12. Did she say what yours were?.

Gambit62 profile image
Gambit62Administrator

One shot is about 800 x normal RDA but a lot of this is lost in the urine in quite a short space of time. How quickly varies from person to person and the same person can also have different loss rates for different forms of B12.

Presume you are based in the UK where NICE guidelines are that monitoring of B12 levels after initial loading shots isn't considered necessary unless there is a suspicion of non-compliance. High levels of B12 from shots aren't an issue - it's not toxic or harmful - low B12 levels are a huge issue.

There's a thing called 'functional B12 deficiency' which occurs in some people - possibly 30% of population based on one study in denmark of people receiving B12 supplementation - basically the body tries to shut down the mechanism that transports B12 to cells when the levels in the blood get high - so plenty of B12 in blood but not a lot getting through to the cells. This may be why you are still feeling symptoms.

Symptoms will go away for a while whilst levels in your blood are so high that they are beating the immune response but once the auto-immune response starts to win there will be very little if any B12 getting through to the cells.

From what little I have seen in the literature the only treatment where there is a B12 absorption problem is to keep B12 levels so high that there is more B12 being transported than the body can create anti-bodies to.

Unlikely that GP or nurse are going to be aware of this phenomenon and I haven't come across a really good summary of it in any of the medical literature - though I'm sure there is one somewhere. You could try talking to them but suspect, as with a lot of B12 that it would be a very frustrating exercise

Suggest you keep a diary of symptoms to try and identify how long it is before the symptoms start to come back and then start supplementing as soon as that happens. Supplementation doesn't necessarily mean injections - different people find sublingual tabs and sparys, nasal sprays and skin patches work for them. I mainly use nasal spray

lesbud1 profile image
lesbud1

the tests they use are out of date. Anyone who should know about health (your gp surgery) knows that the levels they test are in the blood and not in the tissues. there is a new expensive test but not widely available yet that we are all hoping will be! you need to look up the pernicious anaemia society and b12d.org websites to understand the position most of us find ourselves in with the medical profession. They do not take on board how tired we feel and all the symptoms we have. I take b12 sublingual (under the tongue) everyday to be able to function with the b12 jabs that we get. We are hoping that soon someone will listen to us all and we will have greater access to b12. why are you having b12 levels tested? they mean nothing! if you suffer with b12 deficiency or pernicious anaemia you will be on b12 jabs for the rest of your life (they should at least know that at your gp surgery)

shamballa profile image
shamballa

Be sure you look at the whole spectrum of your supplementary requirements.....

Wienke514 profile image
Wienke514

I too went to a very high level. From what I've read here is you can't go to high but I disagree. When mine went to high I was so dizzy I couldn't stand up for three days. Stomach was awful with diaherra. Wasn't fun! Doctor backed me down to half of a shot per month and keeps me at the 500 range in my B12. So I do think you can go to high. Even found a video on line where another person said she went to high to fast and got very dizzy. I know everyone says you pee it out but where is it till you do that. I feel as if everyone is different and maybe some of us need to start with less and work up. Doctor takes blood test every third shot to see where my count is at.

shevie profile image
shevie

with jags every 12 weeks you are keeping your levels artificially high, because you need to ensure that just enough gets through to your poor starved blood cells and flooding is the only way. (I am presuming you have PA or are B12d and its not a dietary problem) Tell your practice nurse to read the BMJ article and the BCSH guidelines as they both make it clear that blood tests are a waste of time once treatment has begun. I spoke to the secretary of a prominent neurologist this morning, whilst engaged in the search for a knowledgeable one to help me. She mentioned these articles to me and quipped 'you know doctors do get told and they are capable of reading'. I couldn't help myself, I replied 'are you sure?'.

patryk97 profile image
patryk97

You may have high B12 because your blood is producing high amount of iron in the blood cells and blood vessels

Stroodsue profile image
Stroodsue

"They" should know not to test levels once on B12 supplements.. whether that be injections OR pills!

It will give a ... falsely high reading!

After my 6 loaders in January (original result that had me diagnosed 172...) 858!

Our levels for "normal" are 211-911... ridiculously low. Japan I think it is have 500 as their low... which is SO much better.

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