Pernicious Anaemia Society
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Help please

My ongoing battle with my GP continues.

My latest blood results are: 3.5 folate and b12 1745. When it's good for me it's around 545. My GP said b12 is high so I don't need injections. I was so shocked as my understanding is a high reading means b12 is not being absorbed. I am running out of fight and think I will go back to self injecting when I actually felt reasonably well.

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realenejones, have you either had loading shots or are you self injecting prior to the results ... or using a high dose oral?

If you have an injection this will raise you levels of B12 in serum well over the top of the scale and it will then drop over time - how fast varies from person to person but most is going to be removed from your blood by your kidneys - much more than you will use at the cell level.

Levels in serum aren't a good guide to what is happening after you have had an injection - its a measure of what is happening in your blood not what is happening at the cell level.

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No I'm always careful to only have a blood test at least a month after a b12 injection. That's why I don't understand why reading high. I don't take oral b12.

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you need to wait at least 3 months to stand a chance of getting a decent base line for serum B12 - often much longer.

An injection raises your levels well off the top of the scale and then it gradually drops as your kidneys remove the B12 from your blood and some is used by your cells ... but most is removed by your kidneys. How fast your levels drop varies a lot - quite rare for levels not to be very high a month after an injection.

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Yes I've had PA since 2007. I have moved 3 times in this period and each new GP seems to take a different approach.

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Hi raelenejones your folate is pretty low.

It is 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.

Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and I have B12 injections every three weeks.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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I am new to this group and have very high B12 as well (1999 in serum) I was told it wasn't getting into the cell and I do have this confirmed through spectracell lab test. I was also told that lithium helps transport B12 into the cell. Sure enough my lithium test just came back and I have none. Jury is still out wether I officially have PA or not.

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Check out b12deficiency.info website. Lots of info for different aspects. You need to get your vit d3 levels to top range. Over 200 is toxic. Mine is adequate at 104. DOCTORS are advised that the normal ref of serum in tests be 180-1000 pmol and that only deficiency needs to be treated. Research from Oxford Uni suggests 300 pmol might be a more accurate lower level.Some suggest ranges are not accurate and that levels need to be at least 500 pmol. The british society of haemotologists state 'serum cobalamin level of greater than 148 pmol/l (200ng/l) in the presence of a strong clinical suspicion of cob. deficiency should be evaluated further.'. B12 'active 'blood test is far more accurate but you have to do it yourself as not on nhs and GPs are not interested in private blood tests. Mine on nhs is normal but active needs further investigation as blood tests can be normal but some dont absorb it at the cellular level there is a high usage into cells.Thyroid uk has got good info on b12 too as some of symptoms can overlap for thyroid and b12.you perhaps need to see about homosysteine and MMA investigation as it shows whats happeni g at cellular level.

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