Neurology letter and advice on plan of action please to get some B12 treatment or a diagnosis

Hi Everyone,

Hope you are all well today. I've just recently had a neurology appointment that the GP referred me to about my B12 deficiency diagnosis. The letter says I have cognitive decline of uncertain cause. The physical exam says I have brisk but symmetrical reflexes but also some upper limb dyspraxia. They are repeating a B12 serum test and intrinsic factor again which already came back negative before. To me this letter is further proof I have neurological symptoms but they just want to see me again in 10 weeks.

I recently also had a GP appointment where I tried to bring up the subject of a B12 deficiency this GP at the moment just wants to concentrate on treating my Hypothyroidism and is leaving the B12 diagnosis up to the neurologist. I was told by the neurologist they only diagnose a B12 deficiency by using the serum B12 or IF test.

I even wrote back to her and outlined my improvement that I had in April after some B12 loading injections which the GP stopped as he couldn't find supporting evidence from my blood tests. I've already given this GP practice an update for health professionals from the PAS which I am now a member of.

I think the GP and neurologist is getting me nowhere they are not taking notice of what I'm saying and now I am seriously worried about permanent neurological damage. I am thinking of getting an active B12 and MMA test at St thomas's hospital myself as this seems to be the cheapest option and also being NHS the GP should take notice if the results do show a deficiency.

I just don't want to be waiting around and getting worse. Would anyone have any further advice or am I doing the right thing. I would appreciate any input please. Thanks.

16 Replies

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  • Hi,

    Sorry, only time for a short reply.

    I was highly symptomatic for B12 deficiency with various neuro symptoms for years but most blood tests were normal range/negative.

    When I had exhausted every option of getting NHS B12 treatment I chose to self treat. It really was a last resort for me. I was scared of further deterioration.

    Have you considered

    1) contacting HDA patient care trust?

    hdapatientcaretrust.com/

    2) writing a letter to neurologist?

    b12deficiency.info/b12-writ...

    I am not medically trained.

  • Hi Sleepybunny ,

    Thank you so much for your reply. I think I am nearly at the stage of self treating now too. I have given these GP's so much information from the PAS society but they still are looking at my blood picture and not symptoms.

    I did write to the neurologist with help from you and others in my last post I made it clear in my letter about the improvements I had while on the B12 loading injections. Nothing I say seems to make a difference to these people. I also mentioned about problems with the spine if a B12 deficiency goes untreated and undiagnosed.

    Thank you for the link about HDA I will have a look and decide about doing that. I think I might go ahead with the tests myself anyway and look into self treating too. I am also scared of further deterioration now and can't wait around for 10 weeks.

    I'm very grateful for your advice thank you.

  • Hi Carmel13n. Just a quick comment about the active B12 and MMA testing...

    As your serum B12 is within 'normal' range, your active B12 is likely to be in range also.

    In addition, as you’ve recently had B12 injections, your MMA level is likely to be normal too (it reduces very quickly once B12 has been injected or supplemented).

    It can take many months for a B12 deficiency to appear in blood results after injections (three and possibly up to six months-or longer for some people).

    So not sure how beneficial getting these tests will be.

    It’s often very difficult to get a definite diagnosis of B12 deficient, based on blood tests alone, especially once supplementation with B12 has started.

    I’ve said it before but I'll say it again...goodness only knows why your doctors will not accept evidence from the successful therapeutic trial...and you previous medical history!

    So...many here do resort to self-injection, especially once options with doctors have come to a dead end...and I think from what you've been saying for a long time now...you may be at that point.

    If that’s a direction you choose to go in, people here can help with advice about where to get supplies etc. Just put up a new post if you need help with that.

    So sorry your doctors aren't listening to you and treating you in accordance with the guidelines.

    Take care x

  • Hi foggyme,

    Thanks for your reply. That is very disappointing about those tests. I was thinking of doing them next month which would be 7 months since taking any B12 but like you say they may come back normal and it would just be a waste of money.

    I am finding out how hard it is to get a diagnosis. I'm very confused as to what to do now.

    I did have a letter in the post today to arrange an MRI of the spine so thanks to you and Sleepybunny the letter to the neurologist seems to have worked. I did try to talk to this GP who I've only seen twice so far who seems to want to leave any B12 diagnosis up to the neurologist. I don't really know if there is any point writing to the GP practice again as they are very insistent on going by the blood picture and saying my results are "normal".

    It doesn't seem that they are following the guidelines either. I think they didn't accept my trial was successful as the GP at the time didn't believe what I was saying and he ruled out a B12 deficiency because my Intrinsic factor was negative and there was no macrotyic anaemia.

    Might have to self treat then. Hope you take care too. x

  • Hi Carmel13n. After seven months, your B12 levels may (or may not) have dropped enough to show a deficiency. Unfortunately, the only way to tell is to have the test and see.

    It might well be worth writing to your GP to make a B12 treatment appeal ...and include evidence which they will have to read (because it goes in your notes). It’s more difficult to dismiss a treatment appeal made in writing when it’s supported by evidence from reliable sources, than it is to verbally dismiss patients sat in front of them. Sadly.

    It will be difficult for them to continue to insist on interpretation of the blood picture only when the actual evidence (in the form of guidelines etc.) is put in front of their noses.

    And nothing sharpens the mind like the thought of evidence which can be used against them...if they choose to ignore it.

    Make the points I outlined in a reply to you about 10days ago and proceed with the letter as suggested in that reply 😉.

    If you’re feeling brave, you could also say (in the nicest way possible) that you will hold them accountable if you are unfortunate enough to develop subacute combined degeneration of the spinal cord due to a failure to treat or under treat B12 deficiency.

    Note: GP's who understand B12 deficiency treat it (immediately when neurological symptoms are present). Your GP is putting you st risk by leaving treatment to a neurologist when appointments are often weeks apart and progress is slow...you could also point that out...again, very very nicely 😉.

    So...give the letter a go. Formal written applications for treatment often get the best results in the forum, so nothing to lose...👍

  • Hi Foggyme ,

    Thanks so much for that great reply. I'm very grateful for your help and support. Yes you're right I should put everything in a letter as especially this different GP at the practice does not know the full history of my B12 problems. The only reason I have been a bit reluctant is she is the only GP so far at the practice that seems to be treating me with any respect and I didn't want that to end I suppose! It sounds awful I know but the 2 other GP's at the practice were awful to me.

    Well thinking like that is getting me nowhere I suppose so I will follow your advice and put everything in a letter. I don't know if I should make an appointment to then discuss it or should I say at the end for them to reply to me in writing with the outcome.

    Is it allowed for me to put in the letter that I am getting advice from the PAS as they may take more notice of this.

    Thanks so much for all your advice I will be busy writing today and I'll let you know how it goes and thanks to Sleepybunny for the link about writing letters too.

    xx

  • PAS (Pernicious Anaemia Society) is separate to this forum.

    Have you spoken to PAS?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone

  • Hi Sleepybunny ,

    Sorry I didn't make that part of my post very clear. Yes I am a member of the PAS and they have given me help in the past. I had given a copy of the update for health professionals to the GP practice in the past although not in the form of a letter so was just wondering if I should say I'm a member or maybe just include that information again to this different GP.

    I had phoned PAS recently and they said it does sound like I have absorption problem and were also wondering why this GP practice does not seem to be listening to me.

    I'm just wondering about the best way to word this letter. I will look at the link and my previous post.

    Thank you.

  • Hi again,

    I do know someone who included in their letter that they had spoken to PAS and it had a positive result but I have also read stories where mentioning PAS provoked a negative comment from doctor.

  • Hi Sleepybunny,

    Thank you I'm not sure where I would be without the help of this forum. Well going by my past treatment at this GP they don't take kindly to me giving them any information whether it is from PAS or anywhere else. I'm not sure I'm really up to the stress of challenging them again. I think I might be at the point of self treating now or at least getting it ready so I have that option. I just think from my experience at this practice they won't go by symptoms only the blood picture. I have mentioned my improvement after the B12 injections to the neurologist so maybe they might even agree to treatment at my next appointment. I will probably bring this up when I next see the GP and let her know about this fact. I'm just a bit reluctant to write in case this GP starts being nasty to me too. Self treating might be a lot easier!

    Thank you so much for your help.

  • Hi,

    "mentioned my improvement after the B12 injections to the neurologist so maybe they might even agree to treatment at my next appointment. I will probably bring this up when I next see the GP"

    Might be worth listing improvements in symptoms after B12 injections in letter so there is written evidence in your medical notes. This helped me. If you are no longer having any B12 from GP or self treatment, are you keeping note of the return of any symptoms that disappeared/improved while on B12?

    I understand the reluctance to write as I had some very unpleasant experiences at one GP practice. I wrote things in one letter not expecting any reply but purely so there was something on record.

    "I'm not sure I'm really up to the stress of challenging them again"

    I used to feel like this and for a while I would feel very upset then I'd start to feel angry at the way I'd been treated and decide to have another go. For me I felt I had nothing to lose because I felt it was a choice between risking annoying the GPs or descending into dementia and spinal problems. In the end pressure was put on me to leave...I wished I'd changed practices sooner.

  • H Sleepybunny ,

    Thanks for your reply so sorry you also had a problem with GP's. I would love to find a GP who actually understands B12 deficiency but it seems there are very few of them around. And yes I do also get angry at the way I have been dismissed and talked down to.

    I need to be more assertive and not worry about annoying them I suppose. Surely if I am polite in the letter it shouldn't make a difference.

    So I will follow both of yours and Foggyme 's advice and start to write the letter today. Thank you for all the pointers in the other post I will follow those suggestions.

    Thank you both so much.

  • Hi,

    I always tried to be polite in letters to GPs but some GPs find it difficult to cope with patients who ask questions and query decisions. I guess you just have to weigh up the pros and cons.

    I do feel that writing letters avoids face to face confrontation and tried to get letters to GPs before my next appt.

    Links about GP/patient relationship breaking down

    nhs.uk/chq/Pages/2556.aspx?...

    medicalprotection.org/uk/re...

    NHS complaints

    GPs cannot remove a patient from lists purely for making a complaint.

    citizensadvice.org.uk/health/

    "he ruled out a B12 deficiency because my Intrinsic factor was negative and there was no macrotyic anaemia."

    Antibody Negative Pernicious Anaemia is mentioned in flowchart below. If flowchart is part of any letter to a patient's GPs it should be filed with medical notes, especially if a request to file letter with notes is included in letter.

    stichtingb12tekort.nl/weten...

    There should be extracts from UK b12 documents about B12 deficiency occurring without macrocytic anaemia in

    1) Summary of B12 documents in third pinned post on this forum..it's the last link in third pinned post.

    2) BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    3) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Article from Dutch b12 website (english language)

    Misconceptions about B12 deficiency

    stichtingb12tekort.nl/weten...

    Good luck.

  • Hi Sleepybunny ,

    Thanks so much for your reply. I think I have weighed up the options now and I think it is worth writing the letter so at least there is proof on my notes that I had improvement while on the B12 injections. Those links are very useful and I am definitely including the Guidelines in my letter. I will try to make it nice and polite.I do have an MRI of the spine coming up also. I think it is worth doing this letter so I have nearly done everything possible to get them to listen to me as really I am certain I have a B12 deficiency.

    I am also going to ask that the reply be put in writing to me and then I can have proof that they are not going to treat me. The funny thing is the letter back from the neurologist even says previous diagnosis of B12 deficiency and we know it doesn't go away.

    I think I'll definitely need the good luck. I'll keep you updated. Have a great day. x

  • I tried to make any letter as concise as possible and I always kept a copy for myself.

  • Thanks Sleepybunny.

    I should be sending off the letter today and I'll let you know how it goes.

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