Advice

[Spring11]

I had my blood test results back and apparently my b12 levels are normal and the dr said I do not need any more b12 injections even though I feel So poorly. Has anyone else had this ?

[fbirder]

Yes you are not the only person with a stupid doctor.

Ask him if he has ever said "Your blood sugar levels are OK now, so you no longer need insulin" to a diabetic.

Ask them why your B12 levels dropped, even though you eat lots of meat/fish. Ask them how they know your levels will not drop again. Demand to have the correct treatment for your B12 deficiency - injections for life.

[Spring11 in reply to fbirder]

Thank u

[Narwhal10]

Hi Spring11,

Sorry to hear you are unwell. Ask for a print out of your results, put in writing what symptoms you are having, look at Tracey Witty’s Vitamin B12 site for further information and guidelines. But do not accept this poor treatment.

Take care.

[Sleepybunny]

Hi,

Have you been at least tested for PA and Coeliac disease?

There are many other causes of B12 deficiency.

What does your GP think caused your original low B12 levels?

Have you considered joining PAS who can offer support and info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

NICE guidelines Coeliac Disease (UK document)

nice.org.uk/guidance/ng20/c...

Some UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK

BNF Hydroxycobalamin

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

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

Two B12 books I found useful

"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 up page for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

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

healthunlocked.com/pasoc/po...

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

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.

[Spring11]

Thank u

[Madge1984]

I had a similar problem with my gp. I asked for the actual blood test results and it turned out although I was ‘normal’ I was as low as you could possibly be in the range. I ordered injections and have been doing them myself and it’s only been about three weeks and I feel soooo much better. I say just order them yourself and give it a go. If they don’t make you feel better, stop.

[EllieMayNot]

Blood levels don't mean much once you have started injecting as the levels are simply reflecting the fact that you have been injecting B12. (Some doctors can't quite grasp this fact.) If you know that you need the B12 injections, then you may have to consider self injecting, as many here do. For many of us, it is the only way that we can guarantee that we get enough B12. While there are many fine medical professionals out there, there are also very many ignorant ones. Highly trained does not necessarily equal "good doctor".