B12 Levels

[Cakebake]

Hi there, I am new here. I have almost all the PA symptoms and have done for many years since my 20's - I am now 52. I have had many neuro investigations over the last 5 years because of unexplained numbness in my left side: mostly my left foot. I have only just found out about PA as my niece is being treated for it. I have approached my GP about it and have felt quite discouraged. I had a B12 blood test last Nov and it was 279. The GP said that this means the levels are good and it means I am absorbing B12 as it is in my blood so it isn't PA. She is repeating the B12 test and wishes to do another full neuro exam - I tried to explain that I did not think this would show anything but was willing to do this again. I am thinking I will need to seek out a private doctor.

[Sleepybunny]

Hi,

If you suspect you have PA, I suggest you consider joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

My understanding is that it's possible to have PA with normal range serum B12.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

There are other causes of B12 deficiency symptoms eg diet, coeliac disease, H Pylori infection, fish tapeworm infection etc.

I think it's more effective to put concerns about treatment into a letter to GP. In UK, letters to GP are supposed to be filed with medical records.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.

UK B12 document

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link below.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, more B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Cakebake in reply to Sleepybunny]

Thanks Sleepybunny for this very comprehensive reply. I joined PAS as soon as I heard of P.A., I am based in South Wales.

[Sleepybunny in reply to Cakebake]

There is a PAS support group in South wales although sadly no meetings during pandemic.

pernicious-anaemia-society....

PAS office is in Bridgend.

[expandingways]

Hi Cakebake, this can also be a menopause symptom.

[Hidden]

A level of 279 for B12 doesn’t actually rule out a deficiency. I really recommend Sally Pacholocks book “ could it be B12?”

Will be interesting if your B12 levels are decreasing on your next test.

Also what about your folate and iron, vit D?

[Cakebake in reply to Hidden]

Thanks DebraNL I will check out that book. I have had low vit D levels for a few years and sometimes have to supplement to increase iron and folate levels but as soon as I stop the supplements they fall again. I think I have trouble absorbing these elements. I am a healthy eater (including meat) and have normal BMI and keep fit etc, in fact I have done everything that we are advised to do to be healthy but I have all these misery-making symptoms and medics have left me feeling like I have health anxiety 😔

[Hidden]

I think you’ll find the book extremely informative and very interesting. From reading it, I have recognized B12 deficiency in many family members and friends, several who then received B12 injections, but if I hadn’t have told them To get checked, they would have never known. My own B12 was just over 200, so technically in range so my GP/ haematologist ignored it. It was only by treating myself that I got better. I’ve read lots of B12 books but I personally find this one the best. Gave a copy to my GP too 😜

[Cakebake in reply to Hidden]

I have bought it on Amazon thank you for the tip. I am realising from what I have read here that I will possibly need to go down the self treatment route.

[wedgewood]

There is a condition known as “Functional B12 deficiency” , where normal levels of B12 are found in blood serum . Have you tried oral supplementation ? If you have ,and it didn’t help , you need to try B12 injections . If they do the trick , you know you have Pernicious Anaemia.

[Cakebake in reply to wedgewood]

Thank you wedgewood that makes a lot of sense, hopefully my GP will agree!