fobbed off by Drs

[Bumblebee02]

ok, so wrote letter to practice manager quoting and linking the NICE protocol for B12…get a call from a dr saying

“Your B12 is in range and take supplements not retesting you til october”

I tried to explain my intrinsic factor was 2.2Au/l The reference for positive PA is 1.53 Au/l but not according to the Dr. Their normal lab ranges are 0-20au/l

I’m not taking any supplements from now on as obviously they’ll boost my B12 along with liver/nutritional yeast etc.

i feel at the end of my tether because they’re NOT listening.

[Bumblebee02]

lab results then one week later

Lab results

[Bumblebee02 in reply to Bumblebee02]

Folate has dropped again. I started the supplements and folate rose. It’s now back under 3.

[Bumblebee02 in reply to Bumblebee02]

dropoed

Results

[Zac2022]

I had similar experience. Folate that low will also be stopping methylation causing the b12 level to look artificially high. Despite formal complaints the NHS still refused to treat me and I became VERY seriously ill. In the end I had no choice but to learn to self inject. I recommend joining the PA group on Facebook. Very helpful.

[Nackapan]

You don't mention symptoms.

Don't take folic acid before b12 is sorted .

Get a consult with another Gp in the practice

Thd IFAB test only picks up 50% of pA patients anyhow

[Bumblebee02 in reply to Nackapan]

tiredness, brain fog, extreme bone/muscle pain, restless legs, pins and needles in extremities. Disturbed vision. Mouth ulcers and sore tongue…to name a few 😩

[Nackapan in reply to Bumblebee02]

Low folate caused my dsuhter to have mouth ulcers and z sore tongue and mouth .Infact now on b12 injections 10 weekly her tell tell sign nof enough folate is her mouth .

After a high 5mg prescription of folic acid fof on month she needs the minimum of 400mcg folic acid dskkg .

Eats loafs of greens ect.

Restless legs i got with low ferritin as well as the shakes and hair loss anc pins shd needles.

Fatigue such a difficult one.

I'd call it exhaustion like I'd never experienced before with leafrn legs and vertigo .

I also had / vision difficulties with light snd noise sensitivity.

Tinnitus .

Head pain / migraines

Pattern glare .

Still csnt use s landline or computer but can now watch TV after 3 yesrs .

When telling your gp your symptoms dwell on not able to do ordinary daily activities.

Explain like i had to that it the sort of exhaustion that hinders digestion.

If it does.

To make them listen.

Some of the symptoms cross over with many othef things.

They work on s process of elimination.

Hood you get somewhere .

Push fof every test.

[Hedgehogs15 in reply to Bumblebee02]

I have pernicious anaemia and had to fight to get my B12 reinstated after 5 years without them. I have all your symptoms too made worse when I’m due my jab.I wake up in the night with bleeding gums and suffer mouth ulcers so painful I can’t eat.

You need to fight like the rest of us have to do and you have come to the right place for solidarity. All the very best.

[charks]

The problem is that while you're having a 'mexican standoff' with your GP - i.e. not supplementing to prove you need it - your health is suffering. Sometimes you have to accept that you will get no help from a GP that doesn't understand anything about PA and B12D and help yourself instead.

[Nackapan in reply to charks]

Yes I agree .Although a g.p if pushed can and will work with you to test and eliminate other things.

Gateway fof referrals ,blood tests ,MRIi s ,x-rays

You then have more confidence to self treat by trial and error.

Also on your medical notes .

[Sunshine1932]

I agree it's best to help yourself. I tell my Dr that I self inject and they seem fine with it. I still get my 3 monthly injection from my doctors. Before I got told I had a b12 deficiency they thought I had lymphoma as I was that sick. I even had a PET scan. I never tested positive for PA but I was given information from my GP about PA.

I think until Dr's know more about B12 it is best to self inject as it removes all the stress that you definitely don't need.

[FlipperTD]

Scientist, not medic.

Sorry, but from the information you've given us, I tend to support the GP this time.

However, it's confusing when the GP claims a 'normal range' that's different from the lab's 'normal range'. I wonder what the reasoning is behind that?

Normal ranges for IFAb tests come down to someone at the lab end making a decision, and calling it 'NEGATIVE' [like, I suspect, yours is] or 'POSITIVE' and actually quoting a 'normal range' for something that shouldn't be there is passing the buck. My assumption is that these 'low level positive results' are simply 'noise'. It's a test but it's not the best test in the World. However, in this case it's the only one we've got.

I hope you get the help you need.

[Bumblebee02 in reply to FlipperTD]

Reference rangesLess than 1.20 AU/mL: NegativeResults are considered negative for the detection of intrinsic factor antibody. Samples with ratios less than the negative cut-off are reported as negative.1.21 to 1.52 AU/mL: EquivocalResults that are above the negative cut-off and below the positive cut-off are regarded as equivocal and are reported as equivocalGreater than 1.53 AU/mL: PositiveResults are considered positive for the detection of intrinsic factor antibody and are reported as positive.

And mine are 2.2 so based on that I’m

Positive!

[Nackapan in reply to Bumblebee02]

They should be treating your symptoms and trying to find s cause. I didn't even get an IFAB test to argue about.

I really hate tests that the result is either mis understood.

Not believed

Ignored

Of simply not good enough to use as a reason not to treat .

I posted some months ago about sn awful letter sent out asking all those on b12 injections to have a blood test for levels and an IFAB test .!!

I told them his wrong at every level.

As if it's as easy as that lol

Just shows the lack of training on this.

Im in a new practice now .

So in your shoes to find the One that listens.

I know not easy .

They need statistics from all of us .

[Casasue]

Hi im in uk and in same situation gps are pathic as they have too fund too medicines infact I know more about b12 than the gp theres two different types and level normal 1.25 normally but it not for all

[palmier]

So what reference range for IF antibodies did the labrapport give? If it says 1.53 Au/l I suppose you have to show it to the gp.

[Bumblebee02 in reply to palmier]

Reference rangesLess than 1.20 AU/mL: NegativeResults are considered negative for the detection of intrinsic factor antibody. Samples with ratios less than the negative cut-off are reported as negative.1.21 to 1.52 AU/mL: EquivocalResults that are above the negative cut-off and below the positive cut-off are regarded as equivocal and are reported as equivocalGreater than 1.53 AU/mL: PositiveResults are considered positive for the detection of intrinsic factor antibody and are reported as positive

This is from every search I have found while looking for intrinsic factor levels.

My level came back as 2.2.

It should be recorded as either positive or negative. I’ve decided to pay privately for the full range of B12/IF bloods.

[palmier in reply to Bumblebee02]

Table 2 in this paper shows that there are many different tests and reference ranges for IF antibodies. Searching online may not give the right range for the test you used. sciencedirect.com/science/a...

[Dee011960]

I told gp that I would commit suicide as I don't want to have all the symptoms returning and as they don't want to give me my injections that worked and the tablets don't then my death would be their fault and put the phone down! I don't believe in suicide but it was the only way to get them to listen to me, as they believe they know what's best for you, but each person is different! Loads of GP surgeries are passing the B12 management on to their Senior nurse, who just believes that B12 is a vitamin that can be taken by tablets and doesn't realise that people with PA cannot absorb! I hope your gp changes their mind for you soon.

[FlipperTD in reply to Dee011960]

Scientist, not medic.

It's bizarre that you can't get a B12 jab without a prescription if you're deficient. However, if you're not deficient and don't need B12 injections you can get them in a 'beauty salon' or such place. Just don't tell them you're deficient. A very odd state of affairs indeed.

My niece, who is otherwise quite wise, told me that she'd booked in for a private B12 injection 'to boost her immune system'. This wasn't one I was going to argue about. Harmless, but expensive. At least someone benefitted.

[helvella in reply to FlipperTD]

I agree about B12 usually being harmless.

But am very concerned about the widespread use of terms like "boost the immune system" - especially in the context of autoimmune disorders. (Which might, or might not, have been diagnosed in the individual.)

When it appears that the immune system is damaging part(s) of the body, boosting it might be the worst possible approach. (Yes - well aware that the immune system is so complex, the bit being boosted and the bit doing the damage might be somewhat separate parts.)

[FlipperTD in reply to helvella]

Nicely put! I'm happy to say that my niece has no autoimmune issues. As yet...

[Sleepybunny]

Link to thread I started about Patient Safety, has some links for people having difficult health experiences in UK.

healthunlocked.com/pasoc/po...

[LittleA]

If your GP will not help you, ask your doctor to refer you to an endocrinologist. They specialise in b12 and other hormones and vitamins.

If you are really low/ having these symptoms the endocrinologist will be able to tell your doctor to give you the support and treatment you need

You can also write to the practice manager and complain about this as it is affecting your quality of life.

I had to do both of these things to get my injections. You have to sadly fight what you need with your health.

Please do not give up or give in.

[Jillymo in reply to LittleA]

My endocrinologist has taken no interest in my B12 deficiency what so ever! Another of my consultants a top lead heamatologist in London tells me she knows nothing about the deficiency or PA !

It's very frustrating to be so poorly and not get the proper care we deserve. It is like a postcode lottery as to who your seen by and what knoweledge they have - from my experience most have no nutritional training what so ever. My gp after two years of being on injections has just rechecked my serum B12 ? They will be wanting to stop my injections because my levels will be high. Now I wonder why that would be. 🤔

[MrJustatip]

We have booted drs out of our lives. We were recently kicked out from a drs office for requesting a b12 shot.