A little help...

[B182]

Would just like to start by saying I don’t have PA. I found this website through google when I was looking at all my symptoms. So just hoping someone could help a little!

I was first told I had a B12 deficiency 5 years ago. Only found out as I was pregnant and when the bloods came back I had a phone call from my midwife saying I needed to make an urgent appointment with the nurse for a B12 injection and to carry on every 3 months. I’ve never spoken to a doctor about this and I’d never heard of a B12 deficiency before then. Just before I’m due an injection I’d have bad fatigue as a symptom and that was it and it was only ever a few days before I was due one. When I was due my last one though my symptoms started around 3/4 weeks before. This time I had pins and needles, slight numbness in hands, lack of energy like never before, headaches, fatigue and palpitations. It was such a struggle to function and get through the day! When I had my injection I asked for a blood test and it came back that I was anaemic and prescribed iron tabs for 3 months. I’ve had problems with anaemia since my late teens. Doctor said after I’ve finished the iron tablets to go back for another blood test and they’ll look into my haemoglobin I think he said? Could I have PA?

Any replies are are appreciated! I’ve never gone into any depth with anyone about this as I just did what I was told by the midwife! It’s only concerned me this time round because of all the symptoms I experienced!

[Nackapan]

Hello

I would find out what your b12 level was at the start . You can get print offs.

Also see if your vitamin d folate and what else was tested.

Your iron levels are always tested after 3 months of taking iron to make sure your levek raises as taking too much iron if not needed is not good for you.

Alot of people need b12 more than 3 monthly so you've managed well up to now with fatigue as your only symptom when injection was due. Your symptoms may be now the iron deficiency. ??

I imagine your doctor looking for reasons which is good.

What you do need is a double appointment so things can be discussed and explained. You could have PA. Treatment is the same.

I'm amazed a doctor has never discussed this with you in 5 years .

See how you feel after iron. You are able to get at least 2 monthly b12 injections if your symptoms dont improve after the iron and you know whars causing what.

I hope you feel better soon.

[B182 in reply to Nackapan]

Hi, thanks for your reply. I think you’re right about the symptoms this time round being to do with my low iron as they seem to have died down a lot since I started the iron tablets.

My doctor also said my b12 levels were ok so not to book in for next 3 months but wait 6 instead!

I think when I go back for my iron blood test I’ll ask for my b12 too and see what that is and then speak to my doctor. Fortunately my doctors are great (at least I thought they were but since no ones spoke to me about this b12 deficiency maybe they’re not 🙈) so I’m hoping I’ll get some answers!

[Sleepybunny]

Hi,

Have you been tested for PA and Coeliac disease?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

If you suspect PA, have you considered joining PAS?

PAS can pass on useful info and offer support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

b12deficiency.info/what-to-...

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, other useful blood tests, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

A Warning

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

I am not medically trained.

[B182 in reply to Sleepybunny]

Thank you for your reply! I’ve been tested for coeliac but it was negative. I haven’t been tested for PA. I’d never heard of it until I googled the symptoms I’ve been experiencing this time around! From first being told about the B12 I’ve never really spoken to anyone, I’ve just had my injection then booked in for my next one 🙈 I’ll have a read of all these links, that’s so helpful thank you!

[Sleepybunny in reply to B182]

Hi,

"I’ve been tested for coeliac but it was negative"

When you were tested for Coeliac disease, did the GP

1) Do both recommended tests, tTG IgA and Total IgA?

2) Ask you to eat plenty of gluten in more than one meal per day for several weeks before the blood was taken?

If the answer to either question is No then your negative result may not be reliable.

More info in links below about Coeliac testing/

NICE guidelines Coeliac Disease (UK document)

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

Coeliac Blood Tests

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

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.

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.

Tested for H pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Exposure to nitrous oxide?

Nitrous oxide is in gas and air mix used as pain relief in labour.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Do you ever uncooked fish eg sushi, smoked salmon etc?

Diet?

What's your diet like?

Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12 ?

If yes to B12 rich diet then diet as a cause is less likely and it becomes more likely that there is an absorption problem in the gut.

Pregnancy

Pregnancy can lead to B12 deficiency but the fact you are still experiencing symptoms years later suggests some ongoing issue.

Drugs/Medicines

Some drugs have been associated with b12 deficiency in some studies; some also with folate deficiency.

Metformin, a diabetes drug and PPI drugs used for acid relux are two I can think of that have been associated with low B12. There are others.

BSH Cobalamin and Folate Guidelines (published 2014)

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

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).

BNF treatment has been updated since this book was published.

See BNF link below for up to date info.

BNF

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

Lots more info in the link to another thread in my first post.

More B12 info in pinned posts on this forum.