Advice : Hi, I’ve been feeling really... - Pernicious Anaemi...

Pernicious Anaemia Society

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Wwerty profile image
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Hi, I’ve been feeling really poorly of late at go said it may be down to b12 as my levels was in the lower end of range, 348, and said about starting injection, I agreed and had the injection and booked in for the rest of loading doses, day before my my second injection was due the dr rang and said she only wanted to give benone to see if it made a difference and I don’t need any more.

The only difference it made was it gave me some energy for a few days, my tinnitus calmed down and my palpitations got less, when I told her this she still says no more is needed as my levels have go to 1234, what I’m asking is how long after injection am I able to order an active b12 test as this was never done and I’m really suffering with some horrible symptoms

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Wwerty
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fbirder profile image
fbirder

Now that you've had one injection there is little point in having another blood test for several months.

I'm surprised you got a doctor to agree to any injections at all with a B12 level that is not in the lower end of the range, but is just about smack in the middle of the range for normal people.

Sleepybunny profile image
Sleepybunny

Hi,

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

b12deficiency.info/what-to-...

UK guidelines suggest people should be treated if they are symptomatic for B12 deficiency even if B12 levels are within range.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

NICE guidelines Coeliac Disease

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

Coeliac disease can lead to B12 deficiency.

Also H pylori infection, parasite infection eg fish tapeworm, other gut conditions such as Crohn's disease, damage to terminal ileum (part of gut where B12 is absorbed), exposure to nitrous oxide, certain medicines/drugs can affect B12 levels eg metformin, a diabetes drug.

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 process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Link about writing a letter to GP if symptomatic for B12 deficiency with an in range B12 result.

b12deficiency.info/b12-writ...

It is possible to have severe b12 deficiency with an in range B12 result.

I speak from personal experience of having typical symptoms for years with most results from 300 - 500 ng/L, well within normal range. In the end I had to resort to self treatment as NHS would not treat me.

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). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I am also going to order "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

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.

Both these tests can be unreliable.

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.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

There is more B12 info in a detailed reply I wrote on another forum thread. See link below.

healthunlocked.com/pasoc/po...

I am not medically trained.

Wwerty profile image
Wwerty in reply to Sleepybunny

Thank you for replying, I’m going to order the book, I’ve got the b12 from Germany ready to self treat, I’ve only just found out that you need to take folic acid for it to work, my gp never told me that, after I had the injection my hands stopped shaking and my palpitations calmed down but I’m still not sleeping and feel like my body is vibrating from my core, she just keeps saying it’s in my head, I’m just worried about having too much b12 in my system x

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