Frustrated don't understand B12 - Pernicious Anaemi...

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Frustrated don't understand B12

Klk777 profile image
3 Replies

I am a 25 year old women!!

A week and a half ago I went to the doctor with tingling in the legs and feet and hands shortness of breath and was told by the doctor that because of the DraStic events that are going on in my life for example getting married in four weeks running a wedding venue and my parents Divorcing does work due to anxiety. I demanded a CBC and thyroid check she went ahead and ordered some blood work and my MCV came back slightly elevated 101.4 she called me back and asked me to come in and grab some more blood work which included liver function AST white blood cell differential B12 and folic acid as well as another CBC. My new CBC came back normal and my MCV went down one point to 100 .6

All the rest of my results came back normal but my B12 was 292 I was just called from a nurse who told me to take oral B12 supplements and then my level 292 would not present neurological symptoms....

So frustrating what do I do any opinions?

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Klk777
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Sleepybunny profile image
Sleepybunny

Are you in UK?

In the UK, people with the symptoms of b12 deficiency but with b12 levels that are normal range are supposed to be treated but many still have difficulty getting treatment. In the UK, these guidelines give recommendations on treatment and diagnosis of B12 deficiency

"BCSH Cobalamin and Folate Guidelines"

If you are not in UK, can you find out if your country has B12 Deficiency Guidelines?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12awareness.org/about-b12/... USA website

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

Martyn Hooper is the chair of the PAS (Pernicious Anaemia Society) and has written several books about PA and B12 deficiency. The PAS has members from around the world and there are some local support groups including two in USA.

pernicious-anaemia-society....

Gambit62 profile image
Gambit62Administrator

LOL re nurse but never mind. She means well.

You need to get hold of a print out of the actual blood tests if only for reference - including the reference ranges.

You may or may not be B12 deficient - people vary so much that the (statistically) normal ranges certainly don't tell the whole story and it is symptoms that really count.

Although low B12 can be caused by lack in the diet (would usually mean a vegan or virtual vegan with no breakfast cereals as most are fortified with B12), generally it is caused by an absorption problem in the illeum. This has a knock on effect on the mechanism that the body uses to store and recycle B12 so it can take a very long time for an absorption problem to manifest in a deficiency.

I doubt the chance in MCV is really that significant and is probably within the test tolerances anyway - not sure if fbirder can clarify on that.

I would not take the oral supplements recommended by the nurse. If you have an absorption problem and if you are deficient it needs to be treated properly. You might give the nurse a copy of this article if you see her again - but do it in a nice way as she sounds quite sweet if a bit misguided

b12researchgroup.wordpress....

Instead I would read through the materials in the pinned posts - get together a list of symptoms that you have - and copies of relevant pages from BCSH guidelines (which is probably the summary page and p8) ... and also the alert on importance of evaluating clinical (symptoms) not just looking at the results

pernicious-anaemia-society....

then go back to the GP

fbirder profile image
fbirder

Before you start the tablets go back and ask for an MMA test. Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If there isn't enough B12 then the MMA levels will rise.

A high MMA result will show that your B12 isn't high enough - and that you need injections to fix it.

As soon as you've had the blood taken for the MMA try to persuade the doc to start you on a course on injections. They're safe and cheap - and treating a deficiency early is the main priority.

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