Thank you all: Just to let all you... - Pernicious Anaemi...

Pernicious Anaemia Society

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Thank you all

Suzie0505 profile image
5 Replies

Just to let all you lovley people know armed with all the information provided from the members if this forum i presented my GP with nice guidlines on B12 deficiency and finally got my loading B12 injections started.

Thank ýou all fingers crossed it works.

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Suzie0505
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5 Replies
Nackapan profile image
Nackapan

Good for you x

Sleepybunny profile image
Sleepybunny

Hi ,

Glad to hear GP listened to you.

Some b12 info that may be of use.

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

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 is up to date with most UK b12 guidelines.

"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.

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....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

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

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Coeliac Disease

In UK, two first line tests are recommended. UK GPs sometimes forget to do second test Total IgA

1) tTG IgA

2) Total IgA

NICE guidelines Coeliac Disease (2015 version) recommend that anyone with unexplained b12, folate or iron deficiencies should be tested for Coeliac disease.

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

Total IgA test checks who has IgA deficiency, these patients need different tests for Coeliac disease .

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection

patient.info/health/dyspeps...

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

B12 treatment

How many loading injections are you having? What B12 treatment will you have after loading injections are finished?

Do you have any neuro symptoms?

Recommended UK b12 treatment for those with B12 deficiency without neuro symptoms is...

6 B12 jabs over 2 weeks followed by a jab every 2 or 3 months

Recommended UK b12 treatment for those with B12 deficiency WITH neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to get better ( could mean weeks even months of loading doses then a jab every 2 months.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

It's vital that you get second pattern of treatment if in UK and you have neuro symptoms. Untreated or under treated B12 deficiency can lead to further deterioration.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Best piece of advice I ever got was to always get copies of all my blood test results.

Lots more B12 info in pinned posts on this forum.

I am not medically trained.

clivealive profile image
clivealiveForum Support

Well done for persevering Suzie0505 but you may find typing quite difficult with your "fingers crossed" :)

Let us know how you get on.

Suzie0505 profile image
Suzie0505 in reply toclivealive

Thank you clivealive I will 🤞

Quest2019 profile image
Quest2019

Hi. Is it possible you could refer me to the info? X

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