Readings mean what?: Recently diag. as... - Pernicious Anaemi...

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Readings mean what?

jgm-44 profile image
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Recently diag. as PA but told my readings were just off normal. Had booster followed by 1st 3-monthly B12 injection. Got a print out which shows " B12 level as 159 ng/L (211.0 - 911.00) Cobalamin deficiency highly likely. Serum folate levels (42U5) 12.3 ug/L (.3.4). Recent folate intake may mask deficiency."

Also "HB 14.3" was hand-written on the print-out. Mentioned this to a friend in Sydney who knows more than me about PA and was told by their standards, my readings were very low & should be on supplement B12 lozenges or sprays. Any advice on what I should do - don't really understand these figures.

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Gambit62 profile image
Gambit62Administrator

First, there isn't a good test for B12 deficiency - Serum B12 looks at all of the B12 (cobalamin) in your blood not just the active forms - although there is another test that looks at just active B12 even that doesn't seem to be totally accurate - and large numbers of people show strong clinical signs of deficiency even when their test results come back as 'normal'.

Second, lots of medics still think that B12deficiency = a form of anaemia - it doesn't. If your folate levels are high this will mask the most common signs of B12 deficiency in your blood (enlarged and deformed red blood cells - smaller surface area so uptake of oxygen is not as efficient. The comment about masking deficiency on the tests is refering to the part folate plays in preventing the anaemia from becoming obvious.

The anaemia is a consequence of B12 deficiency (B12 plays an important part in cell reproduction) but not a defining characteristic and many people exhibit other symptoms long before anaemia - partly because of folate supplmentation in food or because many eat more folate rich foods than they used to.

B12 deficiency can either be caused by lack of B12 in your diet (eg Vegan) - or by problems absorbing B12 (very delicate mechanism). PA proper (an autoimmune problem) is one possible cause but others include drug interactions, gastric surgery and just changes in the acid levels in the gut as you get older. To add to the confusion - many people seem to use PA as a blanket term for B12 deficiency - it is just one possible cause.

Injections are probably the most efficient way of getting B12 into you if you have an absorption problem - but you can use other membranes (eg in the mouth - hence the lozenges and sprays). I use a nasal spray - some find skin patches effective but you do have to use very high doses.

Fortunately nobody has ever identified any harmful consequences of having high B12 and you can't overdose on it - though it can be difficult to get the doses high enough - people just vary so much in what they actually need - though treatments tend to assume that everyone is exactly the same.

Hope this helps a bit

jgm-44 profile image
jgm-44 in reply to Gambit62

Thank you, Gambit62, for the notes - but I'm still confused what the figures mean in relation to other suffers - mild, bad or serious? Or, is there a difference ? jgm44.

Gambit62 profile image
Gambit62Administrator in reply to jgm-44

mild bad or serious isn't a matter of test results it's a matter of clinical symptoms. These vary so much from person to person and don't necessarily bear any resemblance to the figures that come out in a test.

Providing you get the right amount of supplementation then most symptoms should disappear unless the deficiency has been going on for a very long time so some of the nerve damage has become permanent.

The amount of supplementation you need varies a lot from individual - the normal regime leaves me feeling quite dead - as it does for significant numbers of others but most of my symptoms go if I keep my B12 levels high by supplementing for myself.

You can't overdose on B12 so that isn't an issue - too much is better than not enough.

You may find the following sites useful

b12deficiency.info/

b12d.org/

cdc.gov/ncbddd/b12/index.html

pernicious-anaemia-society....

Some books that may also help

"Could it Be B12" - Sally Pacholok and others

"Pernicious Anaemia - The forgotten disease" Martyn Hooper

Others will no doubt have their favourites.

Once you have started supplementation the results don't really mean an awful lot unless they are continuing to show very low B12 levels.

Its advisable to take a good B-complex supplement as well as you need other B vitamins - particularly B9 - to absorb and fully use B12 to repair any damage that occured whilst you were deficient.

jgm-44 profile image
jgm-44

I'm grateful for your valuable information : thank you.

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