confused but mostly about intrinsic factor antibodies.

[lesbud1]

I am a little confused about intrinsic factor antibodies. How do they test for these? when I was diagnosed with b12 def they did not find antibodies. can they look for them now?

[fbirder]

They look for them using a test called ELISA - enzyme linked immunosorbent assay.

The problem with the test is that it's not very accurate. About half of people with PA test negative.

If you test positive it means you almost certainly have PA. If you test negative it doesn't mean that you don't have PA.

Unfortunately a lot of doctors thing a negative result rules out PA. Indeed, my idiot haematologist ruled out PA because I hadn't had the test done!

[lesbud1 in reply to fbirder]

thanks. it is possible to still have the test having b12 injections for a long time? I have been reading the leaflets on PAS and if only the doctors complied with the guidelines of still treating b12 def with neg intrinsic factor this would not be a problem. my GP said something to the effect that injections can just be a placebo effect. are they allowed to give placebos?

[fbirder in reply to lesbud1]

In the olden days you had to leave quite a long gap between an IFAB test and an injection. But the newer (i.e., about 10 years old) tests will be Ok with just a week gap.

Doctors should treat a B12 deficiency. Whether or not you have PA should be irrelevant. When my idiot haematologist said I didn't have PA I asked him what caused by B12 deficiency. He couldn't answer.

Besides, the very first entry in the BNF for hydroxocobalamin injections is about their use as "Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency". So if you have a B12 deficiency then they need to treat you to stop you from getting macrocytic anaemia.

It's a big problem with B12 deficiency - the fact that there's no objective measure for how a patient responds. It would be so different if they could use a crapometer to accurately determine how bad one was feeling. Then there would be less of this placebo rubbish.

Yes, they can give placebos. They can work very well.

[lesbud1 in reply to fbirder]

Thanks, that is worrying. How are you supposed to make a trusting relationship with your GP if they can prescribe placebos and they don't adhere to the guidelines for b12 def?

[lesbud1 in reply to fbirder]

how would you know if they gave you placebos?

[Gambit62 Administrator in reply to lesbud1]

this article covers situations in which placebo might be an ethical treatment - see the conclusion section

jme.bmj.com/content/30/6/551

To be honest B12 fails the definition of a placebo in the sense that a placebo is something that is completely inert and could not possibly have an effect.

This isn't true with B12 but most medics appear to be totally unaware of this part of the definition.

[lesbud1 in reply to Gambit62]

yes but they could prescribe a b12 and it could be coloured saline? that would be a placebo. surely this would contravene informed consent?

[Gambit62 Administrator in reply to lesbud1]

as below it would most definitely be unethical for your GP to be prescribing pink saline in place of B12.

[fbirder in reply to lesbud1]

You look it up on the internet. The prescription will tell you what you've been given.

Some GPs will give patients placebos if they ask for them - homeopathic 'remedies' are a good example.

[lesbud1 in reply to fbirder]

all I am finding is that it doesn't happen in the UK? although gambit62 has sent me a link to a bmj article so I assume it does but still no clearer how you would know. do I have to be told if I ask the GP?

[lesbud1 in reply to lesbud1]

Like I asked gambit62 what about informed consent where does that come into a placebo?

[Gambit62 Administrator in reply to lesbud1]

my understanding is that it would be unethical (outside of a clinical study which would require informed consent) for a GP to prescribe a placebo unless prescribing there is no appropriate medication that could be given and it isn't possible to explain this to the patient, or the drug requested would be harmful and it isn't possible to explain this to the patient.

Lesbud - your GP hasn't said that they are giving you or would give you a placebo - which would be unethical in these circumstances, ie substituting a necessary medication with a placebo.

They have just said that they believe (incorrectly) that reported effects are an example of the placebo effect. The reason why they aren't examples of the placebo effect is that B12 isn't an inert substance. This doesn't negate the possibility that the placebo effect may be at play - just that it is actually impossible in the case of B12 to prove that the placebo effect is at play or that it isn't at play.

[fbirder in reply to Gambit62]

I think I've seen plenty of examples of the placebo effect with Vitamin B12. Just scroll through some of the reviews on various supplements on Amazon.

[lesbud1 in reply to fbirder]

I know this is a strange question but as you seem so knowledgeable any idea why I get protein in my urine with some antibiotics (BP extremely high and really bad headache) and also when I was on thyroxine.? this only happened after I was on these meds for some time. I had low dose antibiotics for acne for years and then thyroxine obviously for underactive thyroid which I was stopped once this happened and never replaced as at the time my GP thought my thyroid was borderline normal.

[lesbud1 in reply to Gambit62]

yes thanks. I was just thinking about future prescriptions and I have been having meds for my anxiety lately.

[lesbud1 in reply to Gambit62]

really appreciate you taking the time to reply with support. thanks again.

[lesbud1 in reply to Gambit62]

Hi Gambit62 I have been directed to a german website to order hydroxycobalamin 1mg/1ml vials. Would you know how I convert the website to English text? I sort of managed to order this via amazon but would appreciate being able to read the information on this site. thanks Ihre Bestellung bei versandapo.de ist eingegangen

[Gambit62 Administrator in reply to lesbud1]

many of the german pharmacies have a union jack flag towards the top of the page - if you click on this will translate to English though it may be a partial translation only. the other thing you could try is running things through google translate - though it's not something I have used.

[lesbud1 in reply to Gambit62]

thanks will try these.

[SouthSounder in reply to lesbud1]

It's important to realize that a placebo effect can be triggered by an "active ingredient" not just something inert. It's the process which triggers the effect, not the ingredient itself. As was mentioned, the pseudoscience of homeopathy is an example, it can also occur with things like acupuncture and chiropractic.

[lesbud1 in reply to SouthSounder]

thanks for your reply.

[Sleepybunny]

Hi,

Some links that may be of interest..

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

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

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.

Both these tests can be unreliable.

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.

B12 Deficiency Info website

b12deficiency.info/

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...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

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 does not show updated BNF info.

"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".

The doctor associated with B12d.org has recently had a book about B12 deficiency published but I have not read it yet. The book is mentioned on the B12d.org website.

b12d.org/index

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

[lesbud1 in reply to Sleepybunny]

Thank you so much for the info. I have just received the book my Martyn so am about to read that.

[FlipperTD]

There are numerous different laboratory methods. ELISA methods have been around for a long time. Radioisotopic methods were popular too. Some methods were 'home-brewed' which resulted in variable reliability and sensitivity. Another, later development is a fully automated IFAb test that runs on the same instruments that are used to measure Serum B12. One particular problem with any method is that the 'antibody' isn't a single entity. There are different types; blocking antibodies, and binding antobodies. The method used for detection may not be equally sensitive to the different types, so variable sensitivity is an inevitable problem. I wish it was simpler!

Functional tests such as the Schilling Test were more use but technically far more invasive, considerably more expensive and time-consuming, but [as far as I'm aware] they are no longer available.

[lesbud1 in reply to FlipperTD]

Thanks.