What comes next?

My GP was quite sympathetic to my list of symptoms but has said she cannot make a decision about further treatment at present and has requested that I attend the hospital tomorrow to have bloods taken (I swear they forget some of us work for a living)!!! Anyway... She has said she needs to see blood results as if my levels are normal there may be a different problem that they need to treat.

I have a few questions...

1) if my levels are "normal" does that mean I will have my injections stopped altogether? Or does it mean they'll continue at 12 weeks.

2) I have read somewhere (more than once) treatment shouldn't be based on results and should be based on treatment, is this correct?

3) She's requested FBC, TTG, B12, IFAB and folic acid be tested, what does this mean she is looking for? Is it likely I may not get more frequent treatment?

3 Replies

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  • In terms of the tests - full blood count is pretty standard - looking for signs of anaemia and a few other potential nasties (think it includes Thyroid). B12 will be serum B12 - which is now recognised as not being a gold standard for detecting whether someone is actually deficient in B12 (hence new guidelines encourage treatment on the basis of symptoms rather than test results).

    IFA is intrinsic factor Anti-bodies - ie looking for a specific reason why you aren't able to absorb B12 through the gut ... but there are lots of other possibilities that could cause a malabsorption problem, which then leads on to deficiency.

    Folic will be folic acid - deficiencies in folic acid can affect B12 levels and can also cause anaemia.

    If you have been receiving injections then these should be for life - there are horror stories about people being told their levels are okay so they don't need any more injections so it does happen but it shouldn't. NICE guidelines quite clearly state (talking about instances where there is no neurological impact) that maintenance shots are required FOR LIFE

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

    in terms of guidelines saying that treatment should be on basis of symptoms not test results the following might be a good starting point

    pernicious-anaemia-society....

    The actual guidelines can be found

    bcshguidelines.com/document...

    On one level, even though it really doesn't feel like it, your GP is doing the right thing in as much as she is investigating the possibility that there is something else going on - which given the overlap between symptoms of B12 and thyroid and a whole host of other things is a wise move ... just frustrating that it is being done at the expense of actually trying B12 more frequently and seeing what that does.

    I'm one of the many that has given up on getting as much B12 as I seem to need (seems to be about 3mg per day so injection every 2 months really wasn't doing it for me) ... but that may be because things are righting themselves as only been doing this level since May. I find a nasal spray supplemented with sub-cutaneous injection work when I have a cold and nasal route isn't going to be as efficient works for me.

    Hope that this doesn't drag on too long for you.

  • Hi,

    Re:I have a few questions...

    1) if my levels are "normal" does that mean I will have my injections stopped altogether? Or does it mean they'll continue at 12 weeks.

    I can not know what your GP may do, it is more likely that he/she is just checking, but who knows. If you are off B12 treatment then you can wait to then have active B12 tested (and MMA if required) to then (depending on that result) be back on treatment (if required).

    2) I have read somewhere (more than once) treatment shouldn't be based on results and should be based on treatment, is this correct?

    No Treatment is unfortunately not based on much, only neurological damage offers a chance to have more frequent B12 jabs in UK, but individual GPs can have different ideas and they are the ones that decided (in UK).

    3) She's requested FBC, TTG, B12, IFAB and folic acid be tested, what does this mean she is looking for? Is it likely I may not get more frequent treatment?

    She is looking at how your blood is, if any other issues arise I suppose such as possibly high MCV etc, how high your serum B12 is and if you have antibodies to IF, which would give you a 100% diagnosis of PA, but is not conclusive if negative. If your GP decides to give you more frequent B12 injections is up to her, she is the one who decides, possibly depending on the results and possibly more tests to exclude other issues perhaps.

    I hope this helps,

    Kind regards,

    Marre.

  • I think you mean should treatment be based on symptoms?

    The new article out in the BMJ is highlighting numerous problems with the issue of b12 deficiency.

    Not least in that it is not primarily a blood disorder and that the serum b12 test is woefully inadequate at all levels.

    The 'new' guidelines which have come out are really already out of date (it's taken them years to put them together) - the good news is that far more doctors read the BMJ than the BNF or any of the other guidelines (because they don't think they need to)

    Of course the likelihood is your blood levels will be normal - if you are getting injections - but it means nothing if you still have symptoms. These symptoms could be resulting from when you were untreated or they could be because your treatment regimen is rubbish and the neurological degeneration is continuing. Three months indeed. If all of us self injecting tried to go three months many of us would end up in hospital.

    As Marre said, it is good that the doctor wants to rule other things out - but don't let them overlook the fact that the b12 problem is a primarily neurological one, not a blood condition. Putting the bloods right means you won't die of anaemia. Zippydeedoo - doctors are somehow proud of the fact they manage to treat the easiest illness known on the planet. It does not mean you won't get further injured by neurological degeneration because the neuro damage occurs before the blood test results show it.

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