Loading injections finished - unhelpful GP

[Pagey70]

Hi all. I got my blood test results back on 1st June and started loading injections the following day. B12 at 94, everything else apparently ok

Blood test was requested by one of GPs after I made appointment due to tiredness, fog, balance issues, pins and needles. Family history of pernicious anaemia with maternal great aunt.

GP was running late so didn't get chance to go through all symptoms which i'd written down as memory not great (I'm a 46 year old female).

Called following week for results and told by receptionist what I needed to do - one of doctors had written prescription - and booked me in with nurse.

Nurse printed out some info on B12 and said I should feel better soon after I told her I didn't even know what my level was when I went for first injection

Just finished today - no improvement in balance, pins and needles, burning feet, fog etc

Asked to see a GP who suggested I needed counselling - explained no one had talked to me about deficiency or other symptoms. She told me it was my diet so maybe look at that - explained I eat meat, fish, eggs, dairy etc - she came back with well I don't see what else it could be. Told her about great aunt (again) - now I've been referred for PA tests but she won't continue the injections despite no improvement

I thought I had a good surgery because they acted so fast - now I feel diminished and a 'problem' because I'm asking questions

I'm lucky that I get private healthcare through my employer do I'm going that route to speed up referral to specialist, but what if that shows up as being nothing wrong? Where do I go from here? I just feel so worthless and as if I'm making a fuss about nothing

Sorry this is so long and thanks for staying with it if you made it to the end

[Shattered-FedUp]

Experts here will respond more fully, hang in there, stay on this site & I'm sure you will get help - your gp experience you will find matches that of the vast majority of us. You're by no means alone but it blooming well feels like it! I'm 15 months into SI every other day & feeling nearly back to normal!! Whatever that is!

[clivealive Forum Support]

Hi Pagey70 your loading doses should continue "until there is no further improvement" Go back to your surgery and ask them to follow the N.I.C.E guidelines on treatment of B12 deficiency.

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

Click on the above, then on "Management Scenario" and scroll down.

This is the pertinent part as you have neurological symptoms.

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

Do you know your Folate level?

Your diet includes the right food so you may have an absorption problem and your Great Aunt's P.A. needs to be taken into consideration. Ask for your Intrinsic Factor to be tested.

You are not worthless or making a fuss - this is your life and health they are playing with.

I'm not a medically trained person just one who has had P.A. for over 45 years.

[Pagey70 in reply to clivealive]

Thanks for replying - I did ask them to follow the NICE guidelines but they have refused. I have complained to the practice manager and am awaiting feedback. In the positive side my private health benefit finally came in useful and I have an appt with consultant gastroenterologist and hepatologist on Saturday morning.

[clivealive Forum Support in reply to Pagey70]

Whatever sort of "quackery practice" is that?

Do you think they may have heard of the British National Formulary (BNF) guidelines or the British Society for Haematology (BSH) guidelines which say the same things about how B12 deficiency should be treated?

I despair... but wish you well for your appointment on Saturday.

[Pagey70 in reply to clivealive]

I have a spare copy of the most up to date BNF through work - maybe I should highlight the relevant paragraphs?!

[clivealive Forum Support in reply to Pagey70]

What a good idea - that's if they can read that is...

[Gambit62 Administrator]

test for PA - IFA is prone to false negatives so can be a bit conclusive - there is some evidence that looking at gastrin levels may provide a much better test for PA but not sure how widely that is known.

Other causes of B12 deficiency are

- lowering of stomach acidity as you get older - which is why B12 deficiency gets more prevalent as you get older

- other absorption related problems such as coeliacs and crohns

- drug interactions (PPIs, metformin, NSAIDs .... a whole raft of them.

- h pylori infection (which can be treated)

- tapeworm (also treatable.

All you can really do is ask for things to be investigated. Can be useful to know what the cause actually is as each cause can have other consequences

personally, I haven't bothered to investigate the cause - just focused on making sure I'm in a position to have the treatment I need.