Parietal Cell - negative

[Betsy448]

Hi

Due to ongoing symptoms my Doctor recently ran a full blood test.

This came back that I was low in total B12 (140 in a range of 160 - 900) and low active B12 (23 - should be 35 at the lowest.)

I've battled for the past 2 - 3 years with mouth ulcers, vertigo, dizziness, tinnitus, nausea, clumsiness, fatigue etc. The list goes on. More recently (over the last month) I've suffered really bad memory loss, difficulty in concentration and severe 'brain fog.'

When the low result came Doctor suggested 5 B12 injections (one per week) and then to retest - I understand now that retesting will skew the result.

She did test for Parietal Cell antibodies before 1st injection though but this was negative. I have good diet so I cannot put the deficiency down to diet. Due to my ongoing symptoms I'm convinced it is PA - but is this possible with negative antibodies?

I'm just not sure what I should do next? Do I fight for more injections after the first 5? Do I ask for a referral to an immunologist?

Any advice would be most welcome.

Many Thanks.

[clivealive Forum Support]

Hi Betsy448 you might ask your doctor to also check your folate level as this is not automatically included in an FBC.

Vitamin B12 and folic acid help iron to make red blood cells and if you are deficient in one or other it affects "performance". I assume your Iron level is OK.

The NICE guidelines for B12 deficiency is below. Click on the link to open, then click on "Scenario Management", Look in the box at the top left of the screen for "Treatment for B12 Deficiency" and click on that and you will see that you should be getting B12 injections every other day until there is no further improvement.

google.co.uk/url?sa=t&rct=j...

I'm not a medically trained person but there are others on here who will be able to advise you.

I see that NICE say "Checking for gastric anti-parietal cell antibodies is no longer recommended to diagnose pernicious anaemia".

I wish you well.

[Sleepybunny]

Hi Betsy,

Are you in UK?

If yes, I'd recommend reading whole of "BSH Cobalamin and Folate Guidelines"

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA test and start initial B12 treatment.

Other UK b12 info

1) Pinned posts on this forum

2) PAS website

pernicious-anaemia-society....

PAS tel no [phone]

Martyn Hooper's blog

martynhooper.com/

3) B12 Deficiency Info website

Lots of B12 info and an interesting blog.

b12deficiency.info/

4) B12d.org website

b12d.org

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper.

Martyn Hooper is the chair of PAS. He has written two other books about PA and B12 deficiency. I also found "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful due to case studies in it.

6) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency, with lots of case studies.

7) BMJ b12 article

bmj.com/content/349/bmj.g5226

8) BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

Info on UK B12 treatment. A person with B12 deficiency with neurological symptoms is supposed to have more intensive treatment, see BNF link.

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society.... see PAS checklist

b12deficiency.info/signs-an...

I am not a medic just a person who has struggled to get a diagnosis.

Has she given you an IFA Intrinsic Factor Antibody test? Do you get copies of all your test results?

[Betsy448]

Hi Sleepybunny,

I'm in Australia now, originally from the UK.

Unfurtunately my doctor didn't do the IFA test, and I read that it shouldn't be done now that the injections have commenced?

I got copies of all my blood test results though, and I have requested copies from the doctor in the town I used to live to see if they ever tested B12 before.

I had a look at the PAS symptom checklist and I have around 80% of those symptoms. Unfortunately though medical staff tell me 'well it could be caused by anything' and don't seem to want to explore why I'm having these issues or Gi e any diagnosis.

I'll take a look, into the links you sent me as it look a like some useful reading.

Many thanks

[Sleepybunny]

Hi,

I think it's still possible to do IFA test while on injections as long as it's not too close to an injection but don't know what time interval it is wise to leave after an injection. hopefully someone else on forum might know.

Link below mentions at least 48 hours and possibly as much as two weeks...

labtestsonline.org/understa...

Perhaps you could contact PAS to ask if they have any info on this?

PAS

pernicious-anaemia-society....

PAS tel no [phone]

PAS can also be contacted by e-mail.