Help : got a worrying letter from haematology to GP and appointment Tuesday

Have tried really hard to send the letter from library scanner with help but no luck so will cover some main points as I haven't got much time left:

"...We are unable to recommend B12 treatment at intervals of any greater frequency than that stated in the British National Formulary, which states loading patients with neurological symptoms initially until symptoms resolve, the only question here is if the neurologist opinion is that her symptoms are likely to be due to B12 deficiency, in which she needs to remain on loading (usually given for a maximum of 3 weeks) till they resolve if however it is not his opinion that these are likely to be related then it would be of little value to give a therapy which is not effective...."

"....We certainly would not be able to recommend weekly or two/three weekly injections once loading doses are completed as there is no proven data for this. Although there is little evidence for the harmful effect of B12 injections in the literature, there is some animal data that seems to suggest this..."

"....I should like to be very clear here that we will not be able to recommend any higher dosaging of B12 than that recommended by the British National Formulary...."

As you can imagine, I am quite worried by what has been written and apprehensive about Tuesday's early appointment. Not really sure that they have not already made up their minds, or that my later neurology appointment will change anything here. Please please can I have some advice as soon as possible, have only just received this letter ! I know it's Easter weekend, but I'm just hoping someone is around.

PS: brain not great at the moment, which is good in a way but also bad in terms of confusion.

15 Replies

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  • TRY not to worry please. I know exactly where you are coming from. I am not an expert but from what I have gathered on here and elsewhere I would definitely put that letter where it belongs, have u got a waste paper bin?

    BNF.I have evidence that the BNF gets it wrong.

    I cannot say much more publicly.

    However please be assured that the official guidance gets it wrong not just about B12 either.

    Try to put this out of your mind for the moment anyway, enjoy Easter as much as is humanly possible. There are other roads to go down as we know with SI.Take care.

    xxxx

  • Hi Cherylclaire I'm not medically trained but my first thought is about the phrase "the only question here is if the neurologist opinion is that her symptoms are likely to be due to B12 deficiency,"

    If the neurologist says that your symptoms are due to the B12 Deficiency then the writer of the letter agrees that your injections should continue "till they resolve".

    I think the comment about "higher dosaging of B12" is not to do with the frequency but rather the strength - i.e not more than the 1mg of Hydroxocobamalin as recommended by the BNF.

    As for the comment that the writer is "not be able to recommend weekly or two/three weekly injections once loading doses are completed as there is no proven data for this" that seems to completely contradict the agreement that if your neurological symptoms are due to the B12 Deficiency "injections should continue "till they resolve".

    It is virtually impossible to overdose on B12 as any excess is excreted via your urine.

    I guess it all comes down to what the neurologist says when you see him/her later. I can only suggest that you make a list of all your symptoms and present this to the neurologist. Also write down all that you want to say about yourself as it is often difficult to remember everything when face to face with someone asking lots of questions and keep to the script. Take a few deep breaths and try to keep calm. If possible take someone who can validate your symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I do hope everything goes well for you.

  • Hi CherylClaire. Oh dear oh dear...sounds like you're going backwards, not forwards πŸ˜–.

    Last I recall, you had a supportive GP who was allowing frequent B12 injections because you had been diagnosed with a functional B12 defiency, confirmed via high serum B12 levels together with high MMA and homocysteine levels? And you were awaiting an appointment at Guy's for further investigations?

    Then - your GP was becoming worried about the frequent B12 injections and was considering reducing them?

    And this is what the the haematologist came up with (was it the one from Guy's?).

    So...first to the letter...playing a bit fast and lose with the guidelines, I think.

    Here's what the BSCH guidelines say about alternate day injections for B12 deficiency with neurological symptoms:

    Treatment of cobalamin deficiency

    Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn... Standard initial therapy for patients without neurological involvement is 1000 ΞΌg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 ΞΌg i.m. on alternate days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternate day therapy after 3 weeks of treatment.

    Note: This says review after three weeks...it does not suggest only give for three weeks (the 'usual' suggested by the haematologist).

    The BNF states 'pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1mg on alternate days until no further improvement, then 1mg every two months'. No qualification here about only giving for a maximum of three weeks.

    So, the haematologist can't recommend intervals greater that suggested in the BNF. Seems to me that they can't even recommend what is recommended in the BNF. Your are not asking for high doses than recommended in the BNF (as the haematologist suggests)...you're just asking for the right treatment for your proven B12 deficiency (with neurological symptoms). Bet you're very cross - I am, on your behalf).

    Next - it appears that your haematologist is ignoring all the guidelines - treat the symtpoms...especially important when neurological symtpoms are present.

    Your haematologist appears to be ignoring the fact that you've already been diagnosed with a functional B12 deficiency (blood tests confirm this).

    Prof. K Talbot, Head of Clinical Neurosciences at Oxford University, wrote a research paper on this - the conclusion being that in the presence of functional B12 deficency, the only treatment option is frequent high doses of Vitamin B12. The haematologist appears to unaware of this research paper. (As far as I am aware this has not been further contraindicated by firer research).

    Here's an abstract from that paper (it's behind a paywall - but I think I mailed you a copy before - shout if you want it again and I'll PM it to you).

    pn.bmj.com/content/9/1/37 (Functional B12 Deficiency - High Doses of B12 Required - Talbot & Turner - Abstract)

    And to hedge my bets (πŸ˜„)...if the haematologist did a further MMA which now returned a 'normal' result (which would indicate the absence of a functional deficency)...not matter. You have a proven B12 deficency with neurological symptoms...and should have access to the neurological regime of treatment.

    (Sincerely hope that the haematologist didn't test your serum B12 level, see it was high (as it should be following injections) and declare that you do not have B12 deficency).

    As to the animal studies...well...I'd really like to see these. Wonder what variables and controls were in place? Also wonder why vets treat B12 deficent animals with weekly B12 injections, if this is the case.

    Whilst it's known that in certain medical conditions (i.e. kidney disease, cancer etc.) treatment with B12 deficency has to be undertaken with care...there is no evidence that treatment with B12 is harmful. There's lost of evidence that not treating with B12 is harmful...strange that this was not mentioned in the letter! Especially as the letter implicitly implies the presence of neurological symptoms.

    Also - it's also well known that on the absence of B12 supplementation, high levels of serum B12 can be indicative of underlying health problems (some serious)...wonder if your haematologist is perhaps a little confused? (Link to a paper about this just below - though note, functional deficency and the high levels of B12 associated with it are a subtle but different thing to the high B12 levels found with underlying health conditions).

    Hope the longer letter detailed tests undertaken (with results and reference ranges), range of symptoms your having, potential causes / treatment plan (!)...sound like the majority of the letter may have been focused simply on why you cannot have treatment for your proven B12 deficency πŸ˜‘πŸ˜–.

    So...what to do...well, I'm tenacious (b****y minded sometimes) so I'd be tempted to write back to the haematologist, ask for copies of the animal studies, outline your concerns about the conclusions made in the letter (challenge the the 'usual three week' thingy, etc.etc. ask for comments about the Talbot and Turner paper (unless functional deficency disproved) and point out exactly which guidelines are being ignored (until no further improvement / treat the symtpoms etc.). If you can be bothered. Or have the energy πŸ˜–.

    Most certainly, it would be a good idea to discuss this with your GP - taking evidence with you (along the lines suggested above). If your GP is reluctant to treat you with the neurological regime (which I sense might be the developing case), then you could always put this in writing (to a named GP).

    Look on the Pernicious Anaemia Website in the library section - document called subacute degeneration of the spinal cord (I for on the internet if you're not a member). Print and include in your evidence 'wadge'. Not suggesting you have this but GP's (some haematologists and neurologists too) are often unaware of the neurological havoc that B12 deficiency can wreak on the body and this might just sharpen the thinking a tadge.

    Ask you GP (and the haematologist too, if you write) to confirm, in writing, that you are not at risk of developing this due to your ongoing neurological symptoms and potential under treatment of a proven B12 deficiency (functional or otherwise). And ask that if they feel unable to prescribe the neurological regime of treatment, please can the provide medical,evidence to support that decision. They won't be able to, there isn't any.

    Here's a couple more links to information that might help, from an evidence point of view:

    academic.oup.com/qjmed/arti... (High Serum B12 Levels: Functional B12 Deficiency)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    CherylClaire, I read the extract from your letter and I was fuming...so I can imagine how you must be feeling. Been there too...and it's horrible. Frustrating. Humiliating. Depressing...and so so much more. I just wanted to stamp on every single letter, word, sentence...and a haemo head too (joking...non-violent person - but you know what I mean πŸ˜‘πŸ˜–).

    Please don't despair. Many here turn to self-injection to top-up between medically sanctioned doses (sic) once it becomes obvious that insufficient is forthcoming from a doctor. (Some self-inject because they are simply refused any treatment at all).

    If you are unable to 'secure' enough B12 to get and keep well, then this is an option that is open to you, if it's a route you want to go down. And if you (still) have a functional deficency, it may be your only option. It's actually quite easy to do and not at all scary (once you've done it a few times). We can always provide information about safe sources of B12/syringes etc., together with advice and support, if necessary.

    So for now...so sorry about what I think is a rather hostile (and nasty) letter...not to mention a little misguided (sic...sad, sad, bad).

    Try to park it for now, have a few days break in the sun, rain, wind, whatever...and then get back to the fight for treatment.

    Please do post again if you need any more help or advice, or perhaps more evidence (think I've sent you links before but can't recall quite what πŸ˜„).

    Good luck and take care πŸ˜„x

    P.s. Wouldn't it be refreshing (to say the least) if we could hear of doctors who looked for reasons why they should treat with B12 rather than reasons why they should shouldn't!

  • Foggyme

    This article Functional B12 Deficiency - High Doses of B12 Required - Talbot & Turner - Abstract can be read in its entirety here :

    sci-hub.cc/10.1136/jnnp.200...

  • Thanks for this humanbean. It'll be good to be able to include a link to the full paper.

    Very curious...available on Russian site...but not here! Guess it must be to do with copy-write.

    Thanks again, much appreciated πŸ‘

  • Yes , I think it might have something to do with copyright, in that I think the Russians might not care about it if it isn't a Russian paper!

    Edit : It might be a Kazakh initiative.

    en.wikipedia.org/wiki/Sci-Hub

  • Additional to above :

    Anything you really, really want a full copy of I would suggest downloading. It may not be permanently available.

  • And yet more...

    How to use Sci-Hub to find full papers :

    forums.phoenixrising.me/ind...

  • Thanks for all this human bean...there's nothing more frustrating than not being able to read research papers because they're tucked away behind expensive firewalls. Will make the site a regular port of call.

    What I'm really not sure about is where this leaves 'us' in terms of liability if 'we' then distribute papers (for instance, here in the forum) that are still subject to copy-write in the UK (perhaps a different issue than simply downloading for personal use).

    Know that when I was at uni there were very strict guidelines (and sanctions) in place with regards to use of material still subject to copy-write...so...

    Hmm...wish I knew the answer...no time to research this at present but if anyone out there knows the answer...πŸ˜„πŸ˜„πŸ‘

  • Hey, lovely Foggy, thanks for your response. Firstly, got the day wrong: am going tomorrow morning (Wednesday). Secondly, that's not surprising as I haven't had an injection since March 27th! Hair has started falling out again, gums bleeding, sore mouth, dizzy, confused, moody, tingley, exhausted..... how sad that I'm a bit glad about that?

    By the way, I never did have homocysteine tested, since "Functional B12 deficiency" confirmed on MMA levels. Should I ask for this? Is it too late now I've had 2 injections a week since last October ?

    Yes, it's very worrying that Guy's (you are right) seem to know so little while I've learnt a lot and remember nothing. Yes, my GP was doing really well, but I think she got frightened about what she was doing: think the haemos got to her! Wonder if the neuros are any better? THEY must know how long nerve repair takes (not , I'm only guessing, a maximum of 3 weeks).

    Very downhearted today, and can't expect much from tomorrow, so just very, very relieved that you are all here- with your info, your anger, your support....

    Can I ask you something else? I've got an injection due on April 21st, and neurology appointment on May 5th: should I have that injection in the pursuit of coherence and a bit more brain function, or postpone it in order that they are testing the "real" me?

    (...and how awful is it that we have to think along these lines ?)

  • Hi Cherylclaire. Oh dear oh dear...no injection since 27 March...and all your symptoms returning, including the neurological ones. πŸ˜–. You should still be on every other day injections...as per all the guidelines for treatment of B12 deficency with neurological symptoms. The dignosis of a functional deficiency makes this all the more important, since the only way to treat this (at least as far as currently know) is to give frequent doses of vitamin B12.

    About the homocysteine - little point in this now as the results will be skewed due to the B12 treatment. In any case, you already have the MMA result and this is a more reliable indicator than homocysteine anyway (both test can be high due to,other factors but homocysteine is also affected by deficent or low folate levels).

    Nerve repair - yes - a lot longer than three weeks - many months in some cases - up to two years. And with the functional deficency it's likely that you may need to stop on the frequent injections much longer than two years - perhaps long term. Only way to know is by stretching out the frequency slowly - if symptoms return then it's an indicator to increase frequency of injections again.

    The neurologist - bit hit and miss, I think. Just depends on how knowledgable about B12 deficiency the Neuro you see is. Might be worth highlighting and taking all your evidence (about trewtment of neurosymptoms and the info about functional deficency (especially the Talbot and Turner research paper). You could also take a B12 deficency symptoms list with all,yours highlighted (the one from B12deficiency.info is more comprehensive, so,suggest you use that one). So...best go,prepared with evidence, just in case.

    Might also be worth making a double appointment with your GP and taking along the evidence -again πŸ˜–. Perhaps by going through it again - in particular the neurological regime for Neuro symptoms, evidence of safety, long term treatment requirements...and the research paper from Turner and Talbot...and most importantly....your ongoing symptoms...

    Also...(and not sure if I've mentioned is before) go to the PAS website (library section) and download the document called subacute degeneration of the spinal cord, which outlines the damage that can occur when B12 deficency is under treated. Not suggesting you have his but many doctors (consultants included) are unaware of the neurological havoc that under treated B12 deficency can wreak on the body...showing this to your GP (and perhaps having handy for your neuro appointment) might serve to sharpen their minds a little. This is a members only document...if you're not a member, you can find information about it on the Internet (but take care - if it mentions treatment details do not include these - a lot of the availabe information is from American sites and the treatment regimes there are different - so it would only confuse your GP further so...best remove any details about treatment...

    If a face to face consult with your GP does not work....might be worth putting everything in a letter...and include all,the evidence. Tell your GP that in view of your ongoing neurological symptoms and proven B12 functional deficency, you are worried that you are at risk of developing subacute degeneration of the spinal cord due to under treatment with vitamin B12 - treatment which is not in line with any of the current guidelines. Ask that if she is unable to treat you according to one guidelines (with the neurological regime) please can she put those reasons in writing - and provide medical evidence to support that decision (she won't be able to - there isn't any).

    About the injection...if it was me I'd have it...any blood tests they might want to do will already be affected by your previous injections. If you have neurological deficits, then these will still be present...and the rest of the symptoms...well they only know what we tell them since most are not visible (and what a shame that is since a lot,only seem to believe what they can see with the naked eye or produce through blood tests πŸ˜–πŸ˜–.

    Think if I was you I'd ask the neurologist to do a head and spine scan (to check for SACDSC or other potential neurological damage) and also nerve conduction tests (to check for large cell neuropathy). Again, not saying you have his but it would be reassuring for,you to be able to rule it out.

    And I agree...it's so terrible that we are forced into feeling that we have to be as ill as possible when we go to these appointment...just so someone will believe us and take our symtpoms and terrible terrible health seriously. Sad. Bad. Disgraceful.

    Very good luck tomorrow Cherylclaire...be brave, and keep strong...I'll be keeping everything crossed and thinking of you... and more besides.

    Let us know how you get on...πŸ‘

    And if all else fails...there's always self-injecting to supplement whatever you're able to squeeze out of your GP.

  • I'd be really interested to know what the animal data is that is referred to above - not aware of anything but that doesn't mean that there isn't anything - and not having any success trying to find anything.

  • It certainly isn't anything that I can find referred to in standards for treatment of B12 deficiency

  • Hi,

    I can't really add any advice but wanted you to know that people on here care about what happens to you.

    My experience is that I need far more B12 than is suggested in BNF. My symptoms return within a few days.

  • Thanks Sleepybunny, in need of both advice AND kindness.

    Me too, used to feel a bit like the last kid in the class to learn to read: I just wasn't getting what the others got , wasn't happening for me - so the confirmation of Functional B12 deficiency was a relief (sort of). I would have started to think it was something entirely different, if the symptoms weren't so obviously B12 deficiency.

    Still can't convince GP that any of my symptoms are related, and now probably never will. Shame. Maybe someone else will come along and do that, or maybe too many coincidences will eventually change her mind. Let's hope.

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