New test results! And the GP said tha... - Pernicious Anaemi...

Pernicious Anaemia Society

31,756 members22,884 posts

New test results! And the GP said that is nothing to worry about...

Ioana_17 profile image
8 Replies

Hi all,

I have my new test results:

B12 - 233 (191-663)

Folate - 2.8 (3.90-26.80)

Ferritin - 73 (10-150)

Gastric parietal cell antibodies - positive

Intrinstic Factor Antibodies - negative

Coeliac disease - negative

The GP started loading dose of B12 shots every other day for 2 weeks and after one shot every 12 weeks, she started the injection because I literally implored her.

With B12 injections she gave me 5mg of folic acid for 2 month one once a day.

And she wrote a letter to the haematologist with copies of my results saying:

" parietal cell antibodies positive, intrinsic factor negative, B12 levels are normal"

She did not care about my folate being very low and even b12 is normal range she said the haematologist and the Gastroscopy will tell if I have an absorption problem and will see from there.

But she gave me the injections because I literally implored her, to see if it will relive my symptoms.

She order another blood test in 2 months for B12 and folate.

Thank you in advance.

Written by
Ioana_17 profile image
Ioana_17
To view profiles and participate in discussions please or .
Read more about...
8 Replies
KimberinUS profile image
KimberinUS

H pylori? It is a root cause of b12 deficiency and is associated with Gastric parietal cell antibodies.

Please get checked if only to rule it out.

Ioana_17 profile image
Ioana_17 in reply to KimberinUS

I already did from stool sample and come back negative for H pylori.

Sleepybunny profile image
Sleepybunny

Hi,

Are you in UK?

If yes, I suggest reading following UK b12 articles/documents.

1) BSH Cobalamin and Folate Guidelines

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

2) Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

"Gastric parietal cell antibodies - positive

Intrinstic Factor Antibodies - negative"

It's possible to have PA even if IFA Intrinsic Factor Antibody test result is negative. This is explained in BSH guidelines and flowchart above.

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

BMJ article makes it clear that in UK, people who are symptomatic for b12 deficiency should be treated , in order to prevent neurological damage, even if B12 is within normal range.

4) BNF British National Formulary

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

5) NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society) based in Wales, UK.

"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.

link about What to Do Next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Blood test links

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

"She did not care about my folate being very low"

Folate Deficiency

patient.info/doctor/folate-...

Unhappy with treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment

hdapatientcaretrust.com/

Symptoms

Have your GP, haematologist, gastrologist got a list of all your symptoms?

I always made sure every specialist had a list of symptoms (especially any neuro symptoms) and any relevant family medical history.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for B12 deficiency and PA

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

PAS offers support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

More B12 info in pinned posts on this forum.

I am not medically trained.

I hope your appts with haematologist and gastrologist are helpful but suggest being well-prepared.

Ioana_17 profile image
Ioana_17 in reply to Sleepybunny

Thank you for your response, I am trying to be well-prepared for these appointments.

I've tried to gave at every appointment that I had with my GP the list of symptoms but she refused to look at it or to add it to my medical records.

She just listen what symptoms and she made her own list.

She accepted to gave me the B12 shots but she have no clue what she is doing that's why she wanted to wait for the haematologist to say.

I will prepared myself for next app.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

"Coeliac disease - negative"

Which tests did you have for Coeliac disease?

NICE guidelines Coeliac disease (2015 version) recommends two first line tests

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

1) tTG IgA

2) total IgA

My experience is that the second test, Total igA, is not always done in UK. It's an important test in my opinion, as someone who is IgA deficient will not make the Coeliac antibodies tested for in tTG IgA test and will need different tests for Coeliac disease.

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

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

"I've tried to gave at every appointment that I had with my GP the list of symptoms but she refused to look at it or to add it to my medical records."

If you're in UK, have you considered putting all your concerns eg symptoms , relevant test results, extracts from relevant documents in a polite, brief as possible letter to GP? My understanding is that in UK, letters addressed to GP are filed with a patient's medical records so cannot be ignored so easily. I'm not sure what the situation is in countries outside UK.

See link in my post above about writing Letters to GP.

Ioana_17 profile image
Ioana_17 in reply to Sleepybunny

For Coeliac disease I've done just tTG IgA

But anyway I will have the Gastroscopy soon so I think that the gastrologist can tell if any absorption issues, like Coeliac or Chron..etc

I am in UK and no I did not tried to write any letter yet, but I will do it if she will not listen.

But I will try to look to another GP and take my health in my own hands.

Thank you so much for your answers.

I will updated soon after my other appointments with haematologist and gastrologist.

Until then I am having B12 shots M W F for 2 weeks and after that I will try to shelf inject and some sublinguals as well, but I will ask some advice when I will decide to shelf medicated.

Thank you again xxx

Sleepybunny profile image
Sleepybunny in reply to Ioana_17

Perhaps you could mention to gastrologist that you have not had a Total IgA test?

Ioana_17 profile image
Ioana_17 in reply to Sleepybunny

I will sure do.

But if the gastrologist find an absorption issue thru the gastroscopy I believe that my GP will act like should do and not refuse anymore B12 shots, or she could refused me the injections?

You may also like...

GP didn't order intrinsic factor test!

the IF test! Instead she did the gastric parietal cell antibody test (negative) as well as a number...

GP refusing to offer IFAB Test

this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in

Help interpreting B12/blood test results?

They've tested my intrinsic factor levels, my anti-gastric parietal cell antibodies as well as a...

homocysteine, intrinsic factor and Parietal cell antibody tests results?

Immunology Parietal Cell Auto Antibody - XE2pi) blood - positive gastric parietal cell antibodies...

New. Wondering about ongoing blood tests.

with low B12 via blood test (under 200) and positive Parietal cell antibodies. I self inject...