Predictable disappointment

[JustLanded]

Hi again! I posted on here when I got diagnosed with PA in August, and have found a very supportive community- thanks to all users, as every bit of another person's experience is useful to someone.

Update - I have now experienced the predictable disappointment of visiting the undereducated GP. Having researched my symptoms here and elsewhere, I went to see my GP yesterday to ask for more b12 injections (finished loading doses 5weeks ago) as I also have neurological symptoms (burning feet, pins n needles in arms and hands at night particularly, and new problem of pain in right hand and not being able to write neatly any more). She was not the GP who diagnosed me (b12 was 104) but is a partner in the practice so can sanction more frequent b12 doses. Apparently not - after telling me that 'we don't want to poison you with too much b12' (I corrected her nil knowledge of said vitamin) , she said that she'd have to email the neurologist as she can't make that decision to give me more, he has to. She assured me he'd reply quickly. He did. Today I got voicemail from her saying neurologist says I can't have extra b12, to wait 6-8 weeks as symptoms take time to improve. So, she and he have fobbed me off, and there was I thinking if I did my homework and quoted bnf and BCHS guidelines at her that my GP would at least help me, if not thank me for educating her. She refuted what I said were bnf guidelines, and never once said she'd look into it all. Like so many on this forum I am left exhausted by the amount of doctor's work I have had to do for myself, and am now preparing, in between working and resting, to draw up battle lines.

Sorry for the whinge, but I guess I just wanted to add my voice of disappointment and disgust at the medical profession's lack of education( which all us patients seem capable of acquiring) to this long-suffering group of lovely people!

[jillc39]

oh poor Justlanded - what are we to do. As if we would be asking for b12 injection for fun - I am SO tired to the battle to get this vitamin - and this on top of feeling the way we do. See my post 'update with gp'. yes, thank goodness we have each other here - on my own I would think it was only my problem.

[JustLanded in reply to jillc39]

jillc39

Thanks for your reply jillc39! I have read your post, I see what you mean! Short of the self-injecting route we are all doomed. Lucky we have a sense of humour, eh?!

[clivealive Forum Support]

Can you not seek an appointment with the original doctor by name or do you just get who's on duty on the day JustLanded ?

[JustLanded in reply to clivealive]

Hi clivealive , yes I can see the GP who diagnosed me, but she directed me to this other one as she is a partner in the practice. The GP who diagnosed me has no power to give me more than the 3 month guidelines for b12 injections. I'm now thinking of going in to see any GP in the practice and methodically hitting them with each of my associated ailments, starting with pulsatile tinnitus. If they want to go the long way round...

[Kenbowns in reply to JustLanded]

Hi justlanded

Snap, a very similar thing happened to me yesterday, gp dismissed all paperwork I presented ' I have access to all that information' .

I showed him Martyn Hoopers book that I am currently reading and told him that he could borrow it when I have read it, he said ' we gps already have enough to read '

I have already had 10 loading doses, during the last one with the practice nurse I asked to see my most recent four b12 and folate test results, the last one was 179 b12 and just 2 folate which triggered the loading jabs but the 3 previous ones.... b12 highest was 471 and the other 2 in the three hundreds and folate was 4.5 max over the past 18 months, of course I was told that this is within range and normal, I have been telling my gp for a long time that something isn't right and this may well be it.

He wants to do another blood test (cant get in for over a week ) which I have no problem with as I need to know where my folate, ferritin and macrocytosis levels are but I suspect he will also come back with the red herring of your b12 is now well in range.

He says that when he has seen these he will refer me to a neurologist for an exact diagnosis, sorry no faith in that.

I also showed him my many symptoms again on the pas checklist and told him that I was seriously concerned about long term damage if I did not receive the bcsh guideline treatment for b12 deficiency with neuropathy of every other day until there is no further improvement.

I have also had a negative anti intrinsic factor result but I informed him that this was an unreliable assay and that I could still have pa, he replied that he has to follow the advice given of no further action required.

I think that I have covered all the bullet points recommended from the guys on here and went in there fairly confident that I could convince him to treat me as per bcsh, I am no shrinking violet either, an ex steelworks trades union official, the arrogance of these people is unsurpassed, good luck with your fight.

[MariLiz]

This is so very frustrating, and unfortunately happening far too often. I wish there was a magic wand we could wave to make all GP's aware of the risks in under treating low B12.

Maybe you could contact the Pernicious Anaemia Society? They do have literature for GP's, but if they're ignoring the guidelines that are already in place, will they take notice?

I'm afraid this is why so many are resorting to self treatment, either with injections, or sub lingual sprays and lozenges.

I sympathise with your situation completely. Perhaps if you pester each individual GP with a symptom of your low B12 it might open their eyes?

Good luck with feeling well again.

MariLiz x

[Sleepybunny]

Hi Justlanded,

Are you a member of the PAS? They can sometimes intervene on behalf of members who are not getting the correct treatment for PA by writing letters.

pernicious-anaemia-society....

PAS tel no 01656 769 717

Phone messages can be left.

There may be some blog posts on Martyn hooper's blog that are relevant to you.

martynhooper.com/2016/09/23...

"after telling me that 'we don't want to poison you with too much b12' "

If you are getting comments like that you might find it helpful to have fbirder summary with you as it has quotes from b12 documents that have helped me to argue against some of the misunderstandings about B12, doctors have.

Link to fbirder's summary on his profile page or in one of pinned posts on this forum.