What was your b12 level that led to t... - Pernicious Anaemi...

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What was your b12 level that led to treatment?

Ohhello profile image
8 Replies

5 years ago my level was 350 but it was possibly falsely elevated due to taking L-methylfolate (deplin) per the pharmacy provided literature.

In April my level was 250 despite taking b12 pills almost on a daily basis.

I am 13 months post partum and still breastfeeding. Started having tingling in my arms and legs and my doctor mentioned ms. I think the b12 and kiwis have iron are the culprit! My mom and grandmother have pernicious anemia and do injections. I forgot to tell her this but she did say I probably have PA

Curious what your levels were. I know 250 isn't low according to lab values, but she called it low. Is that low?

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Ohhello profile image
Ohhello
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Ohhello profile image
Ohhello

Everything but ferritin and mma was tested for. All normal What are those?

Folate normal

B12 256 pg/ml

Reference range is 180-914

Ohhello profile image
Ohhello

B12 serum test is inaccurate how?

I don't think my mom showed enlarged red blood cells until later on. Bc my Mcv, mch, Mchc are normal does that mean I don't have PA?

Mom, grandmother and great M mother have PA who knows who else does in the family.

Gambit62 profile image
Gambit62Administrator in reply toOhhello

serum B12 test isn't 'inaccurate' but the results require interpretation because the normal range is based on averages and people aren't averages - and serum B12 is one test where there is a lot of variation from person to person (partly because it is an indirect measure of what is happening in your cells which is where B12 counts). This means that applying the averages and using them as a single indicator of B12 deficiency will result in missing 25% of people who are B12 deficient but also picking up 5% who aren't so evaluation of symptoms is important.

It sounds as if your GP has been on the ball in terms of knowing that the tests need interpretation.

Macrocytosis - larger rounder red blood cells - is a common symptom of B12 deficiency but is not present in around 25% of people who have a B12 deficiency.

I have absolutely no idea what my B12 levels were when I was first identified as having low B12 - it was done whilst I was in hospital and unfortunately although I obtained a copy of my records from that time the results were electronic and weren't printed out.

Gambit62 profile image
Gambit62Administrator

sorry - forgot to mention - there is a risk that your baby will not be getting all the B12 they need to develop properly if you are relying solely on breast feeding and you may need to consider introducing some formula to ensure the baby is getting enough B12.

Would recommend contacting the PAS and asking to speak to nupernicious-anaemia-society.... there as you are deficient and breast feeding - they will be able to provide you with much more specific medical advice than you can get on this forum.

You may need to join before they can actually provide you with specific advice

pernicious-anaemia-society....

Ohhello profile image
Ohhello in reply toGambit62

Thanks. She's 13 months now and nurses for comfort. She eats table food and cows milk. But I'm going to ask her pediatrician about it.

MariLiz profile image
MariLiz

My level was 176 on diagnosis, and I felt awful.

Ohhello profile image
Ohhello in reply toMariLiz

What were your symptoms?

MariLiz profile image
MariLiz in reply toOhhello

I felt terrible, and thought I must have something terminal. I ached all over, kept getting infections and had multiple courses of antibiotics. I couldn't think straight, my brain was like mush, trying to organise anything even housework or a shopping list was beyond me. I had numbness, pins and needles, muscle weakness, and I was permanently exhausted. I would sleep all night, and then if I sat down in the daytime I would sleep again.

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