Your thoughts please

I am B12 deficient and ferritin deficient - diagnosed 2 years ago. I also have occipital neuralgia cause by upper spinal problems and I have a tethered spinal cord (a form of spine bifida). My Nan, mom, and 3 sisters all have the same B12 issues. I don't have PA apparently, but I also suffer with chronic diarrhoea and lost 20cm of my colon to acute diverticular disease in 2013 - so it's probably an absorption issue.

I suffer with neurological symptoms like mental fog, jumping nerves in my legs etc. Not to mention the continual pain from my neuralgia.

To get to the point of my post, I have been treated with initial loading dose and then hydroxocobalamin 1mg every 12 weeks. For a few weeks after the injection I notice an improvement in pain and some of my other symptoms. However, after reading posts on here and doing my own research I decided to visit my GP for further advice and to ask him to treat me as per the NICE guidelines for someone who is B12 deficient with neurological symptoms.

This is what he said:. He doesn't treat B12 unless it's under a 100 and as my level was 112 when I was diagnosed I shouldn't have any symptoms (a different doctor at the practice diagnosed me). He believes it is GPs over prescribing meds that causes people who are deficient to become dependent on higher levels of B12 so they can't manage without it!! Also, there is no point having a level over 1000 because it's no more beneficial than a higher level and the scale doesn't measure above 2000 anyway. I did manage to get him to agree to 6 weekly injections because I wasn't leaving until I got something more.

Apologies for the long post: my questions are,

1) could my occipital neuralgia be caused by B12 deficiency - does anyone else suffer with this?

2) is my GP right?

3) any advice or thoughts on my situation and what I could do next?

Many thanks in anticipation and again apologies for such a long first post; I am desperate for some input from people who know what's what and understand the complexity of this issue.

10 Replies

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  • Hi Ree2705 Im not a medically trained person but the following might help with how treatment should be given:

    False normal B12 results and the risk of neurological damage.

    (U.K. N.E.Q.A.S Haematics.org.uk)

    In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment"

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

    Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment "

    Testing your serum B12 after you've had injections is pretty meaningless unless it comes out LOW and you cannot overdose on B12 as any excess is excreted via your urine.

    Do you know what your Folate level was when you had the loading doses and what it is now? It is essential to have a healthy level of Folate as this gets "used up" processing the B12.

    As I say I'm not medically trained but there are otheres on herfe who will be able to give you good advice.

    I wish you well

  • Thank you clivealive for your response...I have no idea what my folate levels are - I shall ask at my next appointment- I do take several supplements daily and one is folic acid.

    I went to my GP armed with the information you've supplied, to little avail. I feel under the circumstances it would not be unreasonable for me to see another GP within the practice and return armed with this information.

    Thanks again, I hope to hear from others on this website - all contributions are valuable and so very much appreciated.

    Marie

  • Hope you dont mind my posting for next step, above, to follow on from this, Ree?

    Regards

    ⚽️🎅

  • Please do Footygirl - thank you

  • your GP is sadly very out of touch with current guidelines - meaning NICE and BCSH. Sounds pretty much of a 'nanny knows best' type who doesn't keep up to date with current developments.

    If you are a member of the PAS I'd recommend contacting them about the situation - you could also write to the practice manager pointing out that your GP appears unaware of current guidelines - though glad that you did manage to get better treatment by being obstinate.

    Not beyond the bounds of possibility that occipital neuralgia could be result of B12 deficiency given the causes listed here

    webmd.com/migraines-headach...

  • Yes I have to say if I'd listen to this particular GP on a previous occasion I wouldn't be here to post a question in the first place!! However, his attitude did surprise me this time - he seems to disagree with the guidelines and not be unaware of them; we had quite a debate about the matter...

    Thank you for your response, advice and the info - if I could just find something to alleviate the neuralgia I would be a happy lady - I shall indeed be following your advice.

    Many thanks

    Marie

  • Hi Ree2705. Your GP sounds a gem! We hear a lot of nonsense here but this just about takes the biscuit.

    To say that he never treats anybody with a serum B12 unless it is below 100 is well, quite frankly, horrifying.

    To put this in context - neurological symptoms can be experienced at levels under 500, when on injections levels can rise very high (to no detriment) - mine are always over 2000 and we have seen them here much higher than that. Patcholok and Turner suggest that B12 levels should be 1000 or over for good neurological function and repair.

    And as you probably know by now, all the guidelines say treat the symptoms, not the blood results - and you certainly have symptoms.

    Did you actually show the guidelines to your GP - I just wonder if he's actually read them or if he's 'daft manning it'.

    You could try printing out the pinned posts, highlighting anything relevant to your case (particularly NEQAS guidelines, treatment and diagnostic protocols - and here's a good one - the document about subacute combined degeneration of the spinal cord (from the PAS website or the Internet) - this will show him precisely what can happen to patients who are untreated with B12 injections. (Not suggesting you have this but more that it. If hit be a wake-up call for him).

    You could also try keeping a symptom log. List you symptoms and rate them all on a scale of 1 - 10. Record daily and also note down when you have your B12 injections. Over time, you should be able to identify how long your jabs are lasting and at what point you symptoms return. You could then use this evidence your need for more frequent B12 injections - though I have to say it sounds like your GP will take absolutely no notice.

    But if you ask for it to be put in your medical records, perhaps with a letter stating your concerns and asking him to write to you providing medical evidence to support his refusal to treat you, you may (but only may) get a better response. In particular, I would outline your neurological symptoms, include the treatment guidelines relating to these, and ask him to outline his reasons for refusing treatment - with evidence.

    It's worth noting, as you are aware, you should be having every other day injections until no further improvement. And the though of B12 being somehow addictive or harmful is absolute nonsense (see the Stichting B12 Tekort document in the third pinned post - perhaps he would like to have a read of that too).

    Or...is there another GP you can see at the surgery....or just change surgeries completely?

    And about the neuralgia - has he offered anything for this (amitriptyline, pregabalin, gabapentin)? Also - if it's localised in one particular spot (as opposed to generalised throughout) as in trigeminal neuralgia, a pain block may help (injection of steroids into the nerve - usually done via pain clinic).

    Whatever you do, please persist and get the treatment you need to make and keep you well. All here know how difficult that can be so if you need any more help or advice, lots of people here to pop along and help.

    Very good luck and let us know how it goes 😀 x.

  • Thank you for the very in depth response Foggyme - it is very much appreciated...

    Yes I guess upon reflection this GP is a potential danger. The GP I generally see is much better informed. I went with the goal of getting injections every other day but he was appalled at the thought of doing that.

    I intend to go and see the better GP and discuss the information you have given me, and the daily log is worth doing in the longer term if I can't get the correct treatment, along with following your advice regarding putting my request in writing.

    I have tried several different Meds but the only one that helps a little is amytriptyline - my pain management consultant won't do a nerve block because of my tethered spinal cord - he wants advice from a neurologist; this of course means a wait on the NHS for an appointment before this becomes an option. Interestingly the neuralgia and the B12 diagnosis happend almost at the same time. However, I'm 49 and I believe I have been deficient for many years and like many others I have had lots of different diagnoses and some medical head scratching.

    I have read all the attached document you suggest and am grateful for the clear and concise way they are written - it helps to understand this very confusing issue.

    Once again, many thanks for your input.

    Marie

  • No problem Ree2705. I, like you, was undiagnosed for many years with lots of pretty useless diagnoses 😖. And so I know how very frustrating is all is...and how complex it can be.

    But it does get better....the information sinks in a little at a time, so you will get there.

    In the meantime, good luck and ask as many questions as you need too...always someone dodging about to help 👍

  • Thank you for your time and input - having this support makes me feel more confident about getting the right treatment...

    Marie

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