Gp and Intrinsic Factor testing..

[mistygrey]

So I have just been to my Gp due to still feeling extremely unwell and almost nearly passing out. She did bloods for me and said she would retest B12 and I asked for the Intrinsic Factor to be also tested and she said to me 'the intrinsic factor is automatically tested if your B12 levels are low, which at 217 they are normal.....' I despair honestly it's like talking to a brick wall every time time. She also said as I kept asking her that she'd make a note that they wanted to check the Intrinsic Factors but couldn't guarantee the lab would check it? I think that is extremely negligent, that they can just act like that when they know that's low and I need treatment?

[Sleepybunny]

Hi,

"she also said as I kept asking her that she'd make a note that they wanted to check the Intrinsic Factors but couldn't guarantee the lab would check it?"

If you're in UK, might be worth putting following info in a letter to GP or discussing it with GP.

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 intrinsic factor Antibody test even if B12 is within range. Flowchart outlines when Pernicious Anaemia and Antibody Negative PA can be diagnosed.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat people who are symptomatic for B12 deficiency even if b12 is within range, in order to prevent neurological damage.

I prefer letters. In UK, my understanding is that letters to GPs are filed with a patient's records so are harder to ignore (in my opinion) than something said during an appt.

Link about writing letters to Gps about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic with an in range b12 result.

Other UK b12 documents

BNF

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

NICE CKS

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

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). Book is up to date with UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

If you suspect PA, it may be worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Lots more b12 info in pinned posts on this forum.

I am not medically trained.

[Sleepybunny in reply to Sleepybunny]

More B12 info

Link about What to Do Next if b12 deficiency suspected

b12deficiency.info/what-to-...

Most important thing I learned was to always get copies of all my blood test results. In relation to B12, I look particularly at B12, folate, ferritin and full blood count.

Access to Medical Records (England)

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

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

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

There are other reasons besides PA for B12 deficiency.

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Diet

Has GP excluded diet as a possibility for symptoms?

Being vegan or vegetarian can be a risk factor for developing B12 deficiency. Are you eating plenty of B12 rich foods eg meat. fish, dairy, eggs, shellfish?

Have you had tests for

Coeliac Disease?

Nice guidelines on Coeliac disease suggest testing anyone with unexplained b12 deficiency, folate deficiency or iron deficiency.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood tests

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

H Pylori infection?

H Pylori may lead to b12 deficiency because there is an association with gastritis (inflammation of the stomach).

patient.info/health/dyspeps...

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/

UK b12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Neuro Symptoms

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus. memory issues, balance problems plus other neuro symptoms?

If you are symptomatic for B12 deficiency with neuro symptoms, my understanding is that GP should seek advice from a haematologist. See NICE CKS link in my first post.

If you have neuro symptoms, have you been referred to a neurologist?

Sadly B12 deficiency is not always as well-understood as it could be so it pays to do some B12 homework in my opinion.

If you have gastro symptoms, may be worth asking for referral to a gastro-enterologist as they may be able to spot gastritis due to PA, H pylori or damage to gut from Coeliac disease.

[eleos]

I have higher b12 than you(231) but i was feeling like a dead man. Fatigue , depression, eye problems(blurry vision, twitching etc) and apnea etc. Just after 2 injections(yesterday and today) i feel much much better. Maybe the injections are expensive there and doctors don't want to prescribe them. Here in Greece they cost 1euro per 1g/2m.

I do them alone.

[Sleepybunny]

Hi again,

it's possible to have IFA intrinsic factor Antibody test privately. Search on internet for "UK private blood tests"

If finance means this is not an option then HDA patient care trust may be able to help (see link in post above).

[toph]

Get your b12 ACTIVE level checked first at https: //nutris.viapath.co.uk an NHS LABORATORY 0costs £40?. ?best £40 quid you will ever spend

[mistygrey in reply to toph]

Hi Toph

Is this the same as the Gps B12? Should I not get the Intrinsic factor B12 done first so I know if I can supplement with B12 asap as I need it? Thanks!

[toph]

It is definitely NOT the same. B12 testing from your gp measures b12 blood SERUM level. B12 has ACTIVE and inactive elements. Research has been done showing only 10-30% is active if you have ileum absorption issues.. Nhs drs do not understand this. Pls get tested

Do not inject b4 testing

[mistygrey in reply to toph]

Hi Toph

The link for the test didn't work can you possible send me it again?

So is the test you have mentioned better for me to get than the Intrinsic factor test? I am going to order which ever one is the best this morning

Thanks

[toph]

nutris.viapath.co.uk

Nutristasis Unit at St Thomas '

02071886815