Inherited PA? Should B12 and Folate d... - Pernicious Anaemi...

Pernicious Anaemia Society

31,918 members23,047 posts

Inherited PA? Should B12 and Folate deficiency be treated together?

clapic profile image
4 Replies

Hi

I'm suffering with B12 and folate deficiency and have recently had my first loading shots. My grandmother had pernicious anaemia and had monthly injections. My own mother was recently in hospital with Guillain Barré syndrome, and now has chronic neurological symptoms/damage in her legs. After reading many things here, but still being a newbie, I need some advice for my mother. I had read somewhere that PA can be inherited I think. So I told my mum to go see doc and get her B12 levels tested. Low and behold, they phoned today (she only went there two days ago) and said she needs to start a course of folic acid immediately. They said she would not need any B12 supplement as her level was 269. Whatever that means? They also said they would not treat B12 deficiency if her level was over 211. I'm wondering if her B12 level is still quite low and am worried that by treating only the folate deficiency that her neuro symptoms may get worse again. I don't think she could handle that again. Should I be fighting her case at the docs or get her a few shots from a private nurse before she starts on the folic acid? Many thanks for any advice here!

Written by
clapic profile image
clapic
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Nackapan profile image
Nackapan

I would find out the lab reference ranges. By testing both which is correct the doctor would not treat low folate first if she was b12 deficient. As you quite rightly say the b12 is treated first if needed.

Get your mum to get her blood results printed off

clapic profile image
clapic in reply to Nackapan

Will do! Thankyou for your advice!

Gambit62 profile image
Gambit62Administrator

If you are based in the UK then I would be inclined to throw the BCSH standards on diagnosis and treatment of cobalamin and folate disorders at them pointing out firmly, though politely that the standards say

a) patients can be B12 deficient well into the normal range - supplemental tests for this (in the present of folate deficiency) would be to look at MMA

b) it is important that a patient with neurological symptoms is treated promptly and that symptoms in this instance trump a strict interpretation of ranges

c) serum B12 test is only accurate to within 20% anyway so the test result you have is just withing the range of being deficient anyway.

d) if a patient has a folate absorption problem then it is more likely than not that they also have a B12 absorption problem.

e) in the presence of a B12 deficiency (or a possible B12 deficiency) and a folate deficiency, the B12 deficiency should be treated first

(There is a very small risk of irreversible nerve damage if the B12 deficiency isn't addressed first). Practically that means starting folic acid about 24-48 hours after first loading shot.

onlinelibrary.wiley.com/doi...

If you are in the US then the AAFP guidance also cross-references the BCSH* standards.

BCSH = British Council for Standards in Haematology

clapic profile image
clapic in reply to Gambit62

Thankyou for your advice, that is invaluable. She has an appointment soon so I will go with her to the appointment and try to sort this.

You may also like...

Vitamin b12/Folate deficiency

issues I’ve had with my health recently. I’ve recently been diagnosed by my GP with b12 and...

B12 and folate deficiency

179 serum B12, 2 folate and 103 mcv. Also had intrinsic factor result of ok no further action but...

B12 deficiency genetic? Is it PA?

year old grandmother for mothers day and found out she almost died in her teens from B12 deficiency...

Low 'normal' B12 and high folate - B12 deficient?

I possibly had B12 deficiency, although no-one in my family has pernicious anaemia. I had a blood...

Could it not be PA/B12 deficiency?

are also low. B12 is 1470 (range 189-883), but seems useless. Now I think my B12 deficiency is not...