Pernicious aneamia test: On reading... - Pernicious Anaemi...

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Pernicious aneamia test

Nackapan
Nackapan

On reading posts it seems to be common that doctors don't give us reasons for B12 defiency. I understand about absorption problems.

I've been told I've not got megoblastic aneamia Hb 13 folate 9 ferriton level 60.

No antibody to intrinsic factor . Thyroid ok. Not got celilac disease. When I asked for more frequent injections I was refused on the above grounds. As in the NICE guidelines . I'm confused though as the test is only 50% accurate. It was the neurologist that stated I am to have 2 monthly injections. So how apart from the few who have antibodies how do you know why they are B12 defient or indeed have pernicious aneamia?

Also is it safe to take a multi vitamin with iron in if you don't think you need the iron?

Thanks if you can help with this confusion

5 Replies
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Hi Nackapan.. Been reading your posts and I am so sorry to read of your problems just wish I could help you. Someone more experienced and knowledgeable will be along soon I'm sure and I hope you get answers and the treatment you need. j x

Nackapan
Nackapan
in reply to jib70

Thank you x

Hi,

"No antibody to intrinsic factor"

I've probably asked on an earlier thread but is your GP aware that it is possible to have Antibody Negative Pernicious Anaemia?

A person with Antibody Negative Pernicious Anaemia will not have any Intrinsic Factor Antibodies in their blood but still has PA.

If you're in UK, have you shown/put in letter to GP the following...

1) Copy of this flowchart from BSH Cobalamin and Folate Guidelines which outlines when PA and Antibody Negative PA can be diagnosed in UK

stichtingb12tekort.nl/weten...

2) Copy of whole BSH Cobalamin and Folate Guidelines with relevant bits highlighted.

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

3) Antibody Negative Pernicious Anaemia is mentioned in the book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper. I gave a copy of this to my GPs.

If you are a PAS member, you could ring and ask them about Antibody Negative Pernicious Anaemia.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS membership

pernicious-anaemia-society....

"Not got celilac disease"

Did you check what tests you had for Coeliac disease? If you have not had both these tests below then I don't think GP can be sure you do not have it.

1) tTG IgA

2) Total IgA

NICE guidelines Coeliac Disease (2015 version) UK document

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

I am not medically trained.

Okay thanks. I did go back to the gp to ask for another injection. He convinced me I dud not need it as there was plenty in my body already. Also as I reacted badly to the injection to wait. So hard getting an appointment too

jib70
jib70
in reply to Nackapan

Oh Nackapan I am so concerned for you but this B12/PA business is so confusing for me so I'm not much help.

Isn't the fact your B12 is 'normal' because you had injections and it is just serum B12 NHS tests?

Can't your GP see how unwell you are and something certainly isn't right?

Surely others will be along with better info. I understand you aren't comfortable with self injecting - but I'm sure someone posted about an almost automatic process injection system - a press and click thing that took away all the worry about SI ?

With all the Bank Holidays causing difficulties with medical care coming up you need support.

All the very best. j

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