Advice for my dad please... - Pernicious Anaemi...

Pernicious Anaemia Society

32,058 members23,206 posts

Advice for my dad please...

LornaAnne_X profile image
4 Replies

Hi all, going back a little while my dad started being poorly all the time it was quite severe for about 3 months mouth ulcers fatigue diarrhoea dizzy spells acne shortnes of breath ECT.. so eventually the stubborn old stick went to the doctors & blood results came back with b12 deficiency that was causing him to be anaemic doctor put him on supplements for a while until blood results came back ok but still his symptoms continued on a lesser scale. I got the impression that his doctor was really rubbish & had told him that b12 deficiency didn't cause all of the diarrhoea ECT but on reading information about pernicious anaemia on another site I don't think what the doctor told him was true. Also I mentioned to dad that I'd been reading up on all of his symptoms online & that I thought he had pernicious anaemia his first words in response was that his dad had it. Now my grandad went full on crazy before he died & I've also read information about how this condition can really mess with your head (amongst other things) if not treated properly so I'm very worried about him. I keep telling him he should go for his nhs check or book a doctors appointment & have more tests but his response is always no the doctors are crap. =/ Is taking over the counter b12 going to be enough for him or should i push him to seek further medical advice? He's so drained all the time any advice is appreciated, thank you in advance. =)

Written by
LornaAnne_X profile image
LornaAnne_X
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Gambit62 profile image
Gambit62Administrator

You can get oral supplements and you can get really high dose supplements. It would be useful to know what was the strength of the supplements supplied by the doctor and continue with those if they were working - and sounds as if they did however,

a) really need to have the test results before and after to know if they really did have an effect - the serum B12 test is only accurate to 20% so possible that going from just under to just over means absolutely nothing

b) if your dad has an absorption problem with B12 (which is what PA is) then tablets aren't a very efficient way of restoring levels to where he needs them to be so he would really need injections.

Your dad doesn't need to see the doctor to get a copy of his blood test results - he should be able to get hold of a copy by speaking to the receptionist - and he should not be charged for this.

fbirder profile image
fbirder

If your dad has Pernicious Anaemia then tablets will do nothing for him (otherwise we would all be taking them instead of injecting).

PA is caused by the immune system attacking stomach cells. These cells produce a protein (Intrinsic Factor, IF) that is needed to carry B12 from the gut to the blood (it is too big to go across on its own). These cells also make stomach acid, the lack of which (achlorhydria) can cause problems - like diarrhoea.

A B12 deficiency can cause mental problems - mental confusion, memory problems, mood swings, depression, irritability and paranoia.

It certainly sounds like he needs a trial of injections.

LornaAnne_X profile image
LornaAnne_X

Thank you for your replies should he be tested for the Intrinsic Factor then also could you recommend a gp information print out he could take along to an appointment that may be helpful thank you again =)

Sleepybunny profile image
Sleepybunny

Hi lornabunting ,

I've just written a very long, detailed reply on the thread "B12 Tablets " by Blackradish which may have some useful info for you and your dad.

healthunlocked.com/pasoc/po...

Sorry but too tired to do another detailed post today.

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).

"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".

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...

"could you recommend a gp information print out he could take along to an appointment"

"I thought he had pernicious anaemia his first words in response was that his dad had it"

If you suspect PA then worth joining and talking to PAS who can pass on useful info. See blog post below about how PAS can support those seeking PA diagnosis.

martynhooper.com/2017/06/24...

Costs about £20 for basic PAS membership.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number for PAS members to ring.

PAS support groups in UK

pernicious-anaemia-society....

There may be a PAS support group close to you.

B12 Deficiency Info website

b12deficiency.info/

There are many other potential causes of B12 deficiency besides PA. Have a look at my detailed post on Blackradish's thread.

I am not medically trained. More B12 info in pinned posts.

You may also like...

Next steps on my GP journey - advice please!

any B12 in tablet or injection since 5th Feb.) 3. I want to ask for a therapeutic trial of B12...

some advice needed please

signalling intracellular B12 deficiency despite normal serum B12 , Current serum B12 levels are...

Blood Test Advice please

by my GP - not his fault, think it's the lab being funny for some reason). Came back as negative but

Need a little advice please

was diagnosed 4years ago with b12 pernicious anemia and I'm folate deficient to...I was originally...

advice please regarding my 14 year old granddaughter

of b12 deficiency also. Rang for the results of her bloods and they told me they have come back...