Symptoms returned, but no treatment?

(Little background since it's been a while since I posted: I had a loading dose of B12 injections (3x a week for 2 weeks then 1x a week for 4 weeks) in Dec 2015 after finding out my B12 levels were around 90. Come March, they retested my bloods and my B12 levels had somehow dropped to the 80's and, so, once again, I had another loading dose of injections and seemed to manage ok after that until...)

I had my blood tested in October to check my b12 and folate levels after my symptoms returned (tiredness, pins and needles, headaches, loss of concentration, fatigue) and I was told I was fine. I tried to move forward and convince myself I was alright, but it got to the point where I insisted on another blood test, only to be told that "patient is ok".

I phoned back to ask for the exact number and was told that my B12 levels are currently at 395, which is quite high considering how bad I feel and how low they have been in the past. I'm not being offered any treatment even though my headaches come daily, I'm sleeping 12 hours+ a night, bruising really easily, getting strange tingling sensations in my back and hands etc.

Is there anything I can do?

6 Replies

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  • Hi KCxo do you know what your Folate level was in October as this gets "used up" processing the B12?

  • I don't, I only remember my GP saying that my folate levels were low and to continue taking folic acid daily. However, they haven't renewed my prescription for it this time around so I'm confused as to what to do now?

  • There is a spray which I use called "BetterYouB12Boost" which costs around £12 from Holland & Barratt (or get it online) and you can get 400μg folic acid tablets from any chemists. Give them both a try.

  • Hi KCxo. Grief..your B12 was very very low. And a level of 395 is very very low for someone who has been having injections - in other words, it's not okay, as your GP seems to think.

    B12 levels following treatment with B12 injections are meaningless - unless looking for low levels, in which case more frequent B12 injections are needed. To put this in context, B12 levels after injections are usually very high (mine run at 2000 - we've seen higher here - above 5999) and effect neurological repair requires levels over 1000). Neurological symtpoms can occur at levels below 500.

    Although some people do use B12 sprays, oral supplements or sublingual lozenges between injections for a boost, these are not recommended for themselves with neurological symtpoms.

    You have neurological symtptoms so you should have been having the intensive B12 regime of treatment. That is, after loading doses - 1mg of hydroxocobalamin every other day until no further improvement - for up to two years.

    Don't know how much you know about B12 deficency and its treatment but I'm going to post some links to information that will help you to understand what treatment you should be having...and also debunk some of the things that your GP may think they know about B12 deficency (incidentally, have you been tested to see if you have pernicious anaemia?).

    It will help,you to,understand the treatment you should be having (and why you're not getting it) so it's a good pace to start.

    When you've read the information you may have more questions so,please post again if you do. And likewise, post again if you need more help with getting appropriate treatment from your GP.

    Good luck and here's the links (but please excuse if it's stuff you already know 😄).

    LINKS TO INFORMATION AND GUIDELINES

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    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)

    stichtingb12tekort.nl/weten... (B12 Deficiency and/or Neurological Symptoms Can Present Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

    👍

    P.s. GP's often say that blood results are normal when they're not. If you want to get copies of your blood results (you are entitled to these) and post them, together with the reference ranges, we can help with interpretation.

    Also worth getting ferritin and vitamin D checked - low levels of these often go hand-in-hand with B12 deficency and can make you feel very ill indeed 👍

  • Hi, thanks for all the info! It's late so I skimmed through a few of them and will give the others a proper read tomorrow.

    I had a look at the pernicious anemia symptom list and alot of these resonate with me and most I didn't even know were symptoms of this illness - (I thought it was just me)

    So on the check list we have;

    Shortness of breath - this happens a few times a week and it goes on for a certain period of time then will go away.

    Brain fog - poor concentration, short-term memory loss, nominal aphasia... all of it.

    Clumsiness/bumping into things - all the time!

    Loss of balance - this will mostly happen when I'm bending over to put on shoes and I'll get a bit dizzy, but it has happened when I've been completely upright and I just get light headed for no reason.

    Tingling - I get this in my hands and back mostly, but I have had a few experiences of an almost painful tingling sensation on my scalp and tongue.

    Sleep disturbance - I love sleep, but I do get restless and find myself unable to sleep at times when I'm completely exhausted... and other times, I can fall asleep and wake up 10-12 hours later and still feel tired.

    Palpitations - not as frequent as other symptoms, but it does happen.

    (not listed, but...) Twitching - I get this annoying twitch either in my eye, eyebrow or thumb. I find it occurs at the same time as the other listed symptoms so was worth noting.

    Again, I'm finding that i'm beginning to bruise quite easily. It's not due to the clumsiness because 99.9% of that is just me bumping into things (upper body), but almost all of the bruising I get appears on my thighs, calves and even my feet. The bruising on the feet is odd to me; they just appear as small (5p coin sized) bruises on the knuckles (if that makes sense?) and I do occasionally get them on the same area of my hands as well.

  • If you have no joy with the doctor , I can only suggest that you learn to self-inject . I think it's something that you have to have in mind , because you do need treatment asap. I was forced into this action. Bought in bulk , it is not an expensive solution- about £1.00 a time for ampoule, syringe , needles and swab. It is great to be in control, and you know that you cannot overdose . Because my correct treatment was delayed , I have an irreversible symptom which I have learned to live with . But in myself I am a different person since getting sufficient B12 and folic acid . So do try to get treated at your sugery, and failing that , come back here, and you will find out how to DIY . Very best wishes to you .

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