Suspect B12 and folate deficiencies. - Pernicious Anaemi...

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Suspect B12 and folate deficiencies.

BarefootHelen profile image
3 Replies

Hi,

My name is Helen and I am 47 years old. Long term vegetarian (since 19) and raw vegan now (which includes about 20% of my diet as cooked).

About 2 years ago my eyesight, which had up until that time been perfect, began to deteriorate. I put that down to getting older!

Other symptoms have been niggling away for the last year or so but I didn't really put too much thought into them.

We have in the last 4 months returned to the UK (after 5 years away) and we now have a rather different lifestyle to the one we had in the sun.

I am working long days and weekends and my energy has plummerted. The most worrying symptom is that I know has numb toes - one foot more than the other.

If I get really tired then I get very breathless (literally can't catch my breath), and my fingertips also tingle.

So, obvious research points to a B12 deficiency and I am currently taking 10,000mcg of B12 (whicn includes Chromium and Creatine. I take it in powder form that I let dissolve under my tongue.

I haven't noticed any great change yet - been taking it two weeks probably.

i can up my intake of folate rich food to help that side of things but if anyone has any good suggestions as to a supplement please let me know.

Any advice/thoughts/other experiences welcome.

Thanks in advance,

Helen

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fbirder profile image
fbirder

Go see your GP ASAP. Arm yourself with the BCSH guidelines and ask him/her to check the BNF for how to treat B12 deficiency with neurological symptoms. You may be told that you need to have your B12 levels checked. Explain that you've been taking sublingual supplements which would make the test pointless and that you can't wait 3 months for the supplements to clear.

Tell the GP that you want to start B12 injections, three times a week until your neurological symptoms stop improving, then every 2 months. Also ask for a test for intrinsic factor antibodies, to see if your problem is PA or just a lack of B12 in your diet.

Gambit62 profile image
Gambit62Administrator

Whilst being vegetarian and vegan does put you at higher risk of a dietary deficiency in B12 it doesn't rule out an absorption problem.

Dietary deficiencies can be tackled with oral supplements.

An absorption problem can be treated with very high oral doses but this doesn't work for everyone (1% is absorbed outside the ileum), so generally the treatment is injections. Supplements for those that have absorption problems are aimed at absorption through other membranes - such as tongue, nose or skin - and again these work for some but not for everyone.

Unfortunately there does seem to be a correlation between vegetarianism and absorption problems as opposed to just dietary deficiency - though causal mechanism hasn't been established.

Sleepybunny profile image
Sleepybunny

I have spoken several times to the PAS. They are helpful and sympathetic. My personal view, based on the experience of vegetarians I know, is that GPs sometimes assume that B12 deficiency in vegetarians and vegans is just diet related when of course it may be due to PA (Pernicious Anaemia) or other forms of B12 deficiency.

If you leave a message they will get back to you. The library section on the PAS website is useful.

pernicious-anaemia-society.... 01656 769467

Other useful info

b12deficiency.info/

b12d.org/

Books "Could It Be B12" by Sally Pacholok (very comprehensive and informative), Pernicious Anaemia by Martyn Hooper, Living with Pernicious Anaemia by Martyn Hooper.

Martyn Hooper is the chair of the PAS.

martynhooper.com/

Recent documents articles about B12. I gave copies of these to my GPs.

bmj.com/content/349/bmj.g5226 (useful summary)

ukneqas-haematinics.org.uk/...

fbirder mentioned the BCSH guidelines which are well worth reading. There is a summary of these guidelines in the PAS library section.

pernicious-anaemia-society....

I found page 29 which is a diagnosis flowchart useful.

Be prepared for a fight as some GPs are not aware of recent documents and guidelines.

Do you have someone sympathetic, supportive and well-informed about recent articles/documents on B12 that you can take with you when you have a dr appt?

There are other tests that can help to diagnose a B12 deficiency eg MMA, Homocysteine and Active B12. These tests would very likely be compromised by the fact you are supplementing though.

Another test which is rarely done on NHS for B12 deficiency is a "blood film" aka "blood smear". B12 deficiency can cause shape changes in some blood cells eg red blood cells and I think neutrophils. This test is available privately.

Have you had tests for B12, folate and ferritin? You need good levels of iron and folate to maximise uptake of b12.

Have you had a FBC (Full Blood Count) recently? There can be useful clues on a FBC. High MCV and high MCH can indicate the possibility of a macrocytic anaemia. Low iron makes red blood cells smaller, low B12 and/or low folate makes red blood cells larger. If you have both low iron and lowb12 and/or low folate then your red blood cells can appear "normal" and a GP may miss problems.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

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