Advice needed: Hi, I’m currently on b... - Pernicious Anaemi...

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Advice needed

Nikib12
Nikib12

Hi,

I’m currently on b12 tablets, I started in dec and was last on them in April time, I get neurological symptoms when my level drops but go will only prescribe oral not injected. I don’t know if I have PA but I am a risk for it as I also suffer from Psoriasis, here are my results

My folate is so high I presume because I’m on 5mg of folic acid a day due to my treatment for psoriasis

Should I be on injections?

6 Replies
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Looking at your results from taking the b12 tablets last April you had a good response to the oral route which I guess would imply you don't have an absorption problem.What dose of B12 did you take then?

What is your diet now are you vegetarian?- as this could impact your levels as it does with me.

Hopefully an expert will advise very soon here for you.

If I understand your post it looks as though tablets did increase your B12 levels but then you stopped taking them. So it appears you absorb from food but not enough? Why don't you supplement all the time? Much better than injections if you can keep away symptoms with diet and the right disease of a b13 tablet. Sorry if I've misunderstood. Check with G.p about folate as supplement is a high dose but you might need it.

I am not vegetarian and eat meat daily, so I can’t understand why I wouldn’t be eating enough of it,

My folate is a high dose supplement due to me injecting methotrexate.

Hi!

Not all the numbers of your test results or ranges have come through to me so it's hard to say.

They should always test your B12 and supplement that if required before they give you B9 to balance the methotrexate. I wish they would read the NHS guidelines!

You sound better informed than they are. Trust yourself and try to get them to listen to you.

See posts by Sleepybunny for help.

Hi,

I've been offline for weeks due to computer problems so sorry for not commenting sooner.

I am not medically trained.

If you're in UK, recommended treatment for B12 deficiency is B12 injections unless B12 deficiency is proven to be due to diet and even with dietary deficiency if neurological symptoms are present , injections are recommended.

Link about "What to do next

" if B12 deficiency is suspected

b12deficiency.info/what-to-...

More B12 info

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA?

In UK this would be an Intrinsic Factor Antibody (IFA) test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

UK B12 documents

I suggest reading all of these documents if you're in UK.

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...

NICE CKS link recommends that GPs should seek advice from a haematologist for anyone with B12 deficiency with neuro symptoms. Has GP done this?

Have you been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

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

NICE guidelines above suggest anyone with unexplained B12. folate or iron deficiency should be tested for Coeliac disease.

Coeliac Blood Tests

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

Have you ever been tested for H Pylori?

patient.info/health/dyspeps...

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

If you suspect PA is a possibility then worth joining and talking to PAS.

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/

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...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link including letter templates.

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/

Referrals

Have you been referred to a neurologist?

If you have gut issues, have you been referred to a gastro-enterologist?

A gastro specialist may pick up signs of gut damage from PA, Coeliac, H Pylori etc

Best advice I ever got was to always get copies of all my blood test results. Some on forum get copies of complete medical records.

Perhaps you could check records to see if you've been tested for PA and other causes of B12 deficiency eg Coeliac etc

More B12 info in pinned posts on this forum.

Good luck

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