Feeling So low

I am new here and was given the site name by a friend of a friend also a sufferer.

I have had lots of different symptoms since I turned 50 (i'm 57 in Feb) I firstly had a balance problem, continual discomfort in my head like a headache but not a headache, head feeling too heavy for neck, so discomfort in my neck. Ringing in my ears all this 24/7. Also memory lose.

Last year in Jan my right foot and toes would go numb which I ignored to start with but weeks later the left one joined in. Again I didn't really think anything of it, but at the beginning of June my fingers on both hands went numb, I made a Dr's appointment on the 2nd June and the earliest I could be seen was the 25th June, the next day my fingers hands and nearly up to my elbow were numb, so I phoned the Dr's again and was referred to the hospital, the day after I had a phone call to say that I was extremely low on B12 and had pernicious anemia. So at last I thought I knew what was wrong and something could be done. I had my initial 6 injections but there was no improvement so I had another 6 injections, but even months later no improvements. I am now nearly due for my 3rd top up.

But now my memory seems to have worsened and so now I am worried. Upset most days as have seen no benefit to date.

9 Replies

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  • You need a full blood count plus all the B's plus antis plus D. You should be taking B12 per guidelines and supporting Folic acid. Any medicines you are taking may affect. Your thyroids may be involved. All are grist to the mill.

  • Thank you very much for your help, it is useful for me to know and I appreciate it.

  • welcome lotusblossom.

    what exact regime of treatment have you been given - it may be that it just isn't enough for you - people vary very much in terms of how much B12 they need.

    also, as Dulaigh says there may be more than just B12 going on. At the very least it would be good to check that you aren't now folate deficient - which would mean your body wouldn't be able to process and use the B12 it now has.

  • Hello. Thank you so much for your reply, your comments are very interesting, and I am due to speak to a consultant soon so it is some questions I can ask.

  • Hello Gambit62,

    I forgot to say on my earlier reply that I have only ever had the first initial injections for the B12 but I had 12 instead of 6 and I am on my 3rd 2 monthly top up and that is it, I basically have not had any other advice or guidance .

  • thanks - does sound as if you have been getting the recommended treatment per NICE and BCSH guidelines which is 3xweekly until symptoms stop improving (with a review at 2 weeks) followed by maintenance every 2 months.

    However, B12 is a very individual thing and that doesn't mean it is the right treatment for you.

    Definitely look at folate.

    You might also want to look at different types of cobalamin/B12 as people respond differently to different types - there are some genetic factors that are likely to be involved but also could be interactions with folate and ... basically it isn't something that is particularly well understood. Methyl might work better for you than hydroxo but unfortunately it isn't available on prescription in the UK.

    First step though would be to establish what is happening with your folate levels.

    Also to look at other possibilities, ie not just B12 involved.

  • Thank you so much if gives me more information to take with me.

  • Sources of B12 info

    1) PAS (Pernicious Anaemia Society)

    PAS tel no +44 (0)1656 769 717 office open from 8am till 2pm every day except Sundays and some holidays.

    pernicious-anaemia-society....

    Some people on this forum join the PAS.

    pernicious-anaemia-society....

    They are a source of support and information and in some cases can sometimes intervene on behalf of members by writing letters. There are also several local PAS support groups eg Gloucestershire, isle of Man, South Wales, Berkshire, Anglesey and North Wales, Worcestershire.

    There may be stories on Martyn Hooper's blog that are relevant to you.

    martynhooper.com/

    2) B12 Deficiency Info website

    b12deficiency.info/

    3) b12d.org website

    b12d.org

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. the book is up to date with current UK B12 guidelines.

    5) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart

    6) Pinned posts on this forum

    I found the summary fbirder compiled helpful to read. link to summary in third pinned post (last link in list)

    7) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    8) BNF (British National Formulary)

    evidence.nhs.uk/formulary/b...

    9) BSH Cobalamin and Folate Guidelines. These UK guidelines came out in 2014. They give recommendations on the treatment and diagnosis of b12 deficiency/PA.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency"

    Link to a flowchart in BSH Cobalamin Guidelines

    stichtingb12tekort.nl/weten...

    I am not a medic just someone who has spent years trying to find answers.

    "only ever had the first initial injections for the B12 but I had 12 instead of 6 and I am on my 3rd 2 monthly top up"

    I am wondering if you had had enough loading doses to start to show improvement. My personal experience is that improvement is not immediate.

    It took weeks for me to show any improvement and I had multiple neuro symptoms typical of b12 deficiency...I was self treating as I was unable to get NHS treatment.

    UK B12 treatment for someone with b12 deficiency with neuro symptoms is loading doses every other day for as long as symptoms improve then injections every 2 months.This could mean loading doses for weeks or even months although the BSH Cobalamin guidelines mention the possibility of a review of loading doses after 3 weeks of every other day injectons.

    Was there any gap between the first six loading doses and the next six loading doses?

    Did the GP explain why your loading doses stopped after the second set of six and you went on to injections every 2 months?

    Think the PAS might be able to point you to info on loading doses. PAS contact details at top of this post.

  • Thank you so much Sleepybunny I think you have to me more than I have ever been given.

    When my B12 was diagnosed on a Friday by the following Monday I had the first injection. then Wed and Fri followed by the same the week after when I was at injection 5 I said I felt no difference was told it could take time, but after the 2 weeks they agreed to give me another 6 starting the Monday so there was no gap as such. Then 2 months later had the first top up was telling the nurse I was still feeling no benefit, but was to it could take at least 6 months to feel better. When I was tested I was so low I could have been at zero because the low level is set and if you are below that you wouldn't know. So I asked if I could be re-tested to see if what they were giving me were actually doing anything at all. they were not keen to do it until I got upset then it was done. I was told my levels had gone up, but I asked why I didn't feel any better only to be told oh well at least you don't feel any worse.

    But as I feel pretty bad nearly every day that was not a bonus for me. Basically after leaving the Dr's it's like you are on your own to get on with it, not told if I should be taking or doing anything to help myself in the dark basically, it's only because I feel like my memory is getting worse that I am now really worried. So I have been told nothing really. :(

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