Intrinsic factor etc

[Soundwell1]

Can anyone advise me..

My vit b12 is 145. Vit D 60 folate 8

Intrinsic factor negative.

Mother had pernicious aenemia and developed dementia in her seventies. She didn't and nor did I realise that she needed to have regular shots by gp. I feel so guilty and wish I had known more about this awful disease and if only she'd had the shots she would probably be ok.

Now I am feeling ill and don't know if I've I've inhereted it or not.

What can I do.

[wedgewood]

Your vitamin B12 reading is low , and I would expect you to have some symptoms of B12 deficiency at that level . . How does “feeling ill” manifest itself ? A negative result for Intrinsic Factor Antibodies cannot be relied upon . It is a very unreliable test if it comes up negative ( about 50% apparently ) You can have Pernicious Anaemia even if you get a negative result . P.A. can definitely have a genetic link .

I’m surprised that your G.P. hasn’t given you loading doses of B12 injections given your mother’s history . You must go back to your G.P. and get treatment . I hope that he/ she is aware of the latest guidelines , issued last year . Best wishes to you .

[Soundwell1 in reply to wedgewood]

Thanks for your advice. I will go back to gp. She was going to offer me one but I asked for intrinsic factor test. Didn't know then it was so unreliable.

[Soundwell1 in reply to wedgewood]

I also had methylmalonic test and it showed I had no problem.

[wedgewood in reply to Soundwell1]

I was concerned because your mother has P.A. Reading all the information on P.A., you will find that a negative Intrinsic Factor Antibody test is about 50 % inaccurate . If it tests positive , it is accurate .If you have P.A. symptoms, ( and there are a lot - they manifest themselves in so many different ways , but you usually get a choice pick and mix medley of 5 or 6 ). exhibit symptoms , and have a low B12 reading , then it’s good to get treatment . If your B12 deficiency is caused by P.A. then oral supplementation will not help . PLUS , you have a close relative who has P.A, your mother , and you have witnessed what can happen if it’s not treated properly . The great thing about B12 injections is that even if B12 deficiency is not the problem , no harm is done by the injections . It cannot be overdosed .

If you read the posts on here regularly , you will have gathered that the medical profession in general is very ignorant about Pernicious Anaemia, and many of us cannot get sufficient injections to keep symptoms at bay . This means that we then turn to self - injection . Because B12 ampoules are only obtainable on prescription in U.K. , we have to get supplies from very good reliable online German pharmacies. They are obtainable there OTC

I hope that you get a good outcome .

[SunnyWorld]

145 is pretty low. You say you feel ill what symptoms do you have?

[Soundwell1 in reply to SunnyWorld]

Brain fog , fatigue. And dizziness.

[Sleepybunny]

Hi,

Have you considered joining and then talking to Pernicious Anaemia Society?

They can offer support and direct you to useful information.

You do not need a confirmed diagnosis of PA to join PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 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.

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

b12deficiency.info/what-to-...

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...

Two useful UK B12 documents/articles

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

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

Useful B12 book

"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.

I wrote a very detailed reply on another forum thread with links to more B12 books, b12 websites, UK B12 documents and other B12 info which might be of interest.

healthunlocked.com/pasoc/po...

I hope you find some useful info in above link.

May also be worth searching for some of my other long replies on other threads on this forum.

A warning .....

B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

I sometimes say to people, "Do plenty of B12 homework." as sadly some GPs don't do their own homework on B12 deficiency and PA.

I am not medically trained.

[fbirder]

Your level of 145 may, or may not, be low. It's not possible to tell without the units and ranges.

What are your symptoms?

[wedgewood]

I note from reading your history , that you have Diabetes type1 — This is an auto-immune condition , just like thyroid problems which you also have . It is very common for P.A. patients to have other auto- immune conditions , thyroid being the most common . P.A. is an auto-immune condition . These condition rarely come alone .

Read up all you can about P.A. Martyn Hooper, our founder , has written good books about P.A. ( Amazon ) Use Amazon smile , as then the P.A.S. gets .5% from many purchases if you opt for that charity .