B12 : Hi i had a positive IFAB test and... - Pernicious Anaemi...

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B12

Hi i had a positive IFAB test and have since been on B12 injections my next one is due in feb .but today i spoke to doctors to book it and was told they are no longer doing B12 injections and to buy 1000 mg b12 tablets ? but i thought the point was i do not absorb b12 though the stomach so i am now confused ,also i read that its a autoimmune problem so should i be higher on the covid vaccine list

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CrazyboyDave

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fbirder3 years ago

Write to your doctor demanding that you be treated in accordance with the recommendations in the British National Formulary. Say that you are experiencing a return of your symptoms (as you do before each injection) and that you're worried that you may suffer irreversible neurological damage if not properly treated.

Keep the letter short and sweet.

Dear Dr Death

I have been told that you are no longer doing injections of Vitamin B12 for people with pernicious anaemia. I insist on being treated correctly, in accordance with the recommendations in the BNF. Some of my symptoms are returning, as they do shortly before each injection, and I am worried about permanent nerve damage.

Yours

Your Patient.

Don't include anything else. Make your case and explain what you want.

You might like to cc: your MP, the Practice Manager, local press, TV and radio.

strazzin in reply to fbirder3 years ago

This is great! I have the same problem but my doctors are from the United States and would not a knowledge the British formulary. Does the United States have the same guidance for treating pernicious anemia that I can cite? I once brought research with me and was referred to a psychologist, so I want to make sure I am citing the right guidance.

fbirder in reply to strazzin3 years ago

Ah! No, as far as I know there are no centralised guidelines for treatment in the USA.

You may like to take this Special Article from The Mayo Clinic. reader.elsevier.com/reader/...

Table 1, on page 201, has a list of misconceptions and misbeliefs that you will find interesting.

strazzin in reply to fbirder3 years ago

That’s the one I brought and he referred me to the psychologist. I now have a new doctor and will quote the British guidance. They want to give me 100 mcg a month instead of 1,000 because they said my pernicious anemia is “mild.”? I don’t think they tested it before and I think they find the 100 mcg a month recommendation online on Web MD as that’s what it says on there.

MoKayD in reply to strazzin3 years ago

I'm here in the US. As far as I know there are no national guidelines for B12 treatment. I would suggest finding another doctor. It would probably be easier in the long run. I was lucky with both of my GPs. My first GP didn't diagnose me, but when I asked for a blood test he was very willing and when my results were very very low, he started me on loading doses right away. He retired shortly after that and my current GP is supportive of his patient's B12 needs. Shop around and find someone who understands B12 deficiency.

fbirder3 years ago

Forgot to answer the vaccine question.

No, having PA does not bump you up the list.

CrazyboyDave in reply to fbirder3 years ago

Thankyou for the quick response

CrazyboyDave3 years ago

Hi i wonder if i can get some advice after talking to my gp again today i was told that a positive ifab test does not mean i have pa .i then explained that i believed it did and that for months before i was walking like a man in hes 80s or 90s with a gate and walking stick and in pain but since the b12 injections i am much more mobile my dr then said its the placebo effect and i do not agree with my gp he claims my diabetes is to blame any views people on this

Gambit62Administrator in reply to CrazyboyDave3 years ago

Hi CrazyboyDave. A positive IFAB test is good evidence that you do have PA unless the blood sample was taken very close to an injection. The problem with IFAB is actually the high incidence of false negatives (40-60% of the time - exactly what percentage depends on the test methodology) - in lab speak the test is quite specific but not very sensitive.GPCA tests are more problematic - and no longer recommended by the WHO because of the risk of false positives.

This is covered in the discussion of various diagnostic tests relating to causes of B12 deficiency in these standards that I think have already been shared with you

onlinelibrary.wiley.com/doi...

These guidelines are actually referenced in this AAFP article

aafp.org/afp/2017/0915/p384...

if your doctor wants to check that it has some validity and isn't just a random google

FoggymeAdministrator3 years ago

All - some responses on this thread have been deleted so others may look as if they appear out of context. I'm leaving these for the benefit of the poster who may have already read the now deleted responses and find it useful to reflect on wiser words.

👍

Gambit62Administrator3 years ago

CrazyboyDave - I see that there has been some discussion around whether oral can be used to treat a patient with PA. Reality is that the situation is far from clear cut - some patients with PA do respond well to oral but others don't and the one's that don't can be quite vociferous. We have at least one member of this forum who was diagnosed as having PA in the days of the schilling test who finds sublingual sprays works for him.There are a few quite old studies looking at effectiveness of oral in relation to patients with a number of different absorption problems and in respect to all of the causes there were significant numbers of patients who didn't find oral helped them (20% to 40%). These included patients with PA and other conditions that would mean they don't produce intrinsic factor.

The biochemistry of B12 isn't 100% understood - far from it.

The argument for high dose oral relies up a mechanism called 'passive absorption' occurring in the gut as a whole - seems to average about 1% based on relatively small studies but also seems to have quite a wide variance in how effective it is.

There are studies that show that high dose oral can raise serum B12 levels in patients with absorption problems but this doesn't necessarily mean that B12 actually gets into cells where it is needed - and patients still show elevated levels of secondary markers of cellular B12 deficiency (raised MMA and homocysteine levels).

Whilst there is an argument that the B12 molecule should be too large to pass through the gut wall without help (classical osmosis), biochemists are increasingly finding that quantum effects apply in a lot of biological processes. It may not be quantum effects that are involved in passive absorption and 1% actually sounds a bit high for quantum tunnelling on a molecule as large as B12 but I just use it to illustrate that arguments that are based on classical physics might not be entirely appropriate.

There is some evidence that for oral therapy to be effective for patients it needs to be started immediately after an injection rather than being used on its own.

Personally I find that I can get a very long way with oral supplements (though in doses rather higher than 1000mcg a day).

All of which is a very long way of saying that high dose oral does work for some people but it doesn't work for others - nobody knows why that is the case at the moment - but if it doesn't work for 20-40% of people then there is a real risk, if presenting it as the only option, that a substantial number of patients won't get the treatment they need.

On the other hand it could be worth trying it because if it does work for you then it is a lot easier than injecting all the time, but do listen to your symptoms.

The other downside to oral doses is that they aren't always available as supplements of pharmaceutical grade which means that you may not always be getting the 1000mcg dose. Controls over exact dose are much less strict when it comes to supplements, though given the mode of manufacture for B12 supplements there should be less variance than is found in supplements that are made from refining natural extracts (eg kelp extracts).

To avoid arguments I am going to close this post to further responses as the issue of high dose oral can get very heated but please feel free to post any further questions as a new post.

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