b12 deficiency need advice

Hello Everyone, I am in need of some advice because my doctors seem to not know much about B12 deficiency recovery. I want to know if anyone else is going through what I am because i'm starting to wonder if I have the right diagnosis. It all started in December 2014,I started experiencing nerve pain behind my left knee then within a month it moved to the right knee, then the right foot began tingling, followed by the right hand. Then within 2 weeks I was so fatigued I could not stand long enough to wake up my children for school in the morning. I was given a brain MRI which was norma and a ton of blood work. The only thing the neuro came up with is my B12 level was 280 which is the low end of normal. My regular doctor started me on 2000mcg of b12 pills every day. My B12 level raised to 1000 within a month. I have continued to experience strange symptoms since, it has been almost 4 months now. I am no longer as fatigued after one month of pills but, the tingling has changed and I feel numbness almost all the time now on the palms of both my hands and bottom of feet . I experience occasional muscle twitching and even some ringing in the ears, even nerve teeth pain. The nerve pain behind the knees still comes and goes every day, I really don't feel like any of the nerve issues are getting much better. The Neuro told me the other day that it could still be B12 but, I am worried I have been misdiagnosed. Has anyone else experienced anything like this? I would truly appreciate any advice. Thank you for your time.

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  • Hi Lyssaone,

    I have to confess to not being very sure about your diagnosis and treatment. If you are being treated for B12 neurological involvement then tablets is not the way to treat that, this is, see:

    patient.co.uk/doctor/pernic...

    Management[2]

    •For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]

    And:

    cks.nice.org.uk/anaemia-b12...

    Treatment for B12 deficiency

    How should I treat a person with vitamin B12 deficiency anaemia?

    • For people with neurological involvement:

    ◦Seek urgent specialist advice from a haematologist.

    ◦Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

    ◾Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

    ◾Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12. It is available on an NHS prescription only for a person who is a vegan, or who has a proven vitamin B12 deficiency of dietary origin, and the prescription must be endorsed 'SLS' (Selected List Scheme).

    And:

    bcshguidelines.com/document...

    C. 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, medicinescomplete.com/mc/bn... Standard initial therapy for patients without neurological involvement is 1000 g intramuscularly (i.m.) three times a week for two weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative 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 alternative day therapy after three weeks of treatment.

    So from the above your treatment seems odd.

    I'd ask your GP why you are not getting the recommended treatment and what is it you are diagnosed with, and why you are getting the treatment given.

    I hope this helps you a bit,

    Kind regards,

    Marre.

  • Thank you for your response Marre! My GP said the current recommendation is large doses of pills. I will seek the advice from a hematologist immediately, maybe they can help because my GP is not being very helpful, she has basically made me feel its in my head and its anxiety. Do you think this is really a b12 deficiency?

  • I'm very impressed that your neuro still said it could be B12 deficiency - that one's a keeper!

    I'm going to provide you a link to a PDF. Download it, read it, come back if you have any questions. Then take it to your GP. You should be having injections first, not tablets.

    cmim.org/pdf2014/funcion.ph...

    This gives reasons why the tablets might not work. And why you still have remaining damage. It is a British Medical Journal paper so of the best quality.

  • I bit difficult, as "B12 level was 280 which is the low end of normal", is not that low, but it depends what ells has been tested (MMA, Homocysteine, antibodies?) and what other results on our blood tests may have indicated a B12 def.

  • Personally sounds like the neuro is spot on with diagnosis though everyone seems to be wrong on treatment.

    If your diet isn't devoid of B12 then deficiency occurs because you develop a problem with absorbing B12 through the normal mechanism - in the ileum - various possibilities including autoimmune, changes in stomach acid levels (lowering), gastric surgery affecting illeum and drug interactions including some anti-acid treatments, some painkillers, some anticonvulsants etc etc ... a very long list really.

    About 1% of B12 is absorbed passively outside the ileum so it is possible to flood the gut with B12 - your dose is about 1000x rda so in theory it could work - however it really isn't very efficient, not least because a problem with absorption means you also have a problem with the mechanism by which your body stores and recycles B12 it doesn't needed - via the liver with reabsorption in the ileum ... so basically you have a tap running into the bath with no plug in the plug hole. Unlikely that you are actually going to manage to get the bath refilled.

    As Marre highlights recommendation by NICE and BCSH is treatment by injection where the problem isn't your diet.

    I know there was some trouble at end of 2014 because of claim that a new oral supplement could sort out B12 deficiency and that the PAS had endorsed it - neither part of which is true.

    pernicious-anaemia-society....

  • Thank you so much Poppet, Marre, and Gambit for taking the time to help me. I have felt so alone and scared. I agree the neuro is a keeper but, unfortunately he isn't very supportive with recovery symptoms, I guess you can't have it all! He did tell me you never want your B12 level below 400. Has anyone else experienced muscle twitches and spasms all over, difficulty writing, and unsteady gait?

  • lyssaone

    If it helps settle your anxiety, yes to: Labyrinthitis so feel like spinning all the time, fall over/trip up on nothing loads, funny walk, nerve pains hot and cold patches restless leg syndrome and odd jerks, Tinnitis. Neurolgist sounds ok too. I had to pay privately for haematologist and demand to see a neurologist through my GP. Good luck!

  • Poppet, Thank you for the very informative article. Do you have any advice on how to convince my GP I need injections as my B12 serum is 1013 now. As I mentioned earlier, my neuro symptoms haven't improved much though.

  • The only thing which seems to be affecting doctors at the moment is that article. It is still being read frequently on the BMJ site itself and the numbers are remaining consistent. That means mainly doctors are reading it (it's behind a paywall and so costs to access) so the word is getting out.

    Your GP should be acquainting himself with research like that. Send him and the neuro a copy. The neuro in particular I would focus on saying how helpful they have been already.

    I cannot stress how important this is, if indeed it is related to the original B12 deficiency.

    When I was first diagnosed people kept telling me there was a point of no return. But no one actually explained any further.

    I thought, more or less, that I had got treatment before that point. I worked hard for over a year getting my physical fitness back up. I was on a roll. And then it all started to go wrong. I overworked the damaged muscles.

    I sit here now, as I do every morning, knowing that when I get up my legs are going to wobble.

    For the first time in a long time, I stood at the sink and cried this morning. I'm supposed to be moving house, I've got nowhere to go to & I can't even f****** walk properly. And this is because for the last few days I've been walking carrying boxes etc.

    Completely messed me up.

    Don't let it ride and don't get lulled into a false sense of security.

  • Poppet11

    Thinking of you!

  • If, as I suspect the tablets you were given were cynacobalamin, they are not easily absorbed and would probably have just raised your serum levels without being taken up by your cells and they need to find the reason for this. This happened to my relative and only injections made the difference.

    As others have already advised, all the latest research and guidelines indicate the neurological symptoms, which you already have, should have been treated with injections to avoid permanent damage as your serum b12 test results were low when compared with this extract from the book, "Could it be B12?", as well as ranges in Japan and many other European countries.

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550 pg/ml.

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

  • Hi Polaris, yes they are Cyanocobalamin! I have an appointment with my GP Friday, I will ask for the injections. Thank you!

  • Good luck lyssaome. If they won't' look at the whole BMJ research document that Poppet11 has given above, try and show them the summary at least, and maybe take someone with you for support to emphasise how serious the consequences for you and your family of not treating urgently with injections.

  • Ps. My relative is finding that supplementing injections with Jarrow Methylcobalamin B12 5000 mcg sublingually is also helping with her neuro symptoms. Some people find oral or nasal sprays, patches etc useful too. (Sally Pachlok, author of 'Could it Be?" believes in covering all bases!

  • lyssaone

    I have found in past experience if you state that your work attendance rather than family life is affected and as a last resort you are not being listened to may help however it would appear from most posts on this site that GP's are blinkered when it comes to treating B12/PA.

  • hi lyssaone, im sorry you are going through all this, i was diagnosed july lasy year so im fairly new to all this b12 illness, i really hope you get the answers you need take care. x

  • Hi Lyssaone,

    Good luck with convincing your GP.

    The chairman of the PAS is helpful to talk to. He sometimes intervenes on behalf of sufferers and would probably be interested to hear that you are treated with oral B12 rather than injections. Contact tel. no. on PAS website.

    pernicious-anaemia-society.org

    Useful books/websites/documents

    ukneqas-haematinics.org.uk/...

    b12d.org

    b12deficiency.info This website has examples of possible letters you could write to unhelpful GPs. The person who runs the website can be contacted by e-mail.

    Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok

    Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency by Martyn Hooper........... I'm going to give a copy of this to my GP.

    Living with Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

  • I have had very similar symptoms and like u Mri normal. What freaks me out the most is that I wake up with one pupil bigger than the other every morning??!! But I recently found out I also have a vitamin D deficiency - have they checked yours? So have supplements for that now and I've gone gluten free. Symptoms have improved and after loading dose of b12 my reading is 1800. But still have much of the tingling in feet first thing and periodically in face and arm. Biggest challenge just now is trying to drive. I feel the car pulling and like I have to really concentrate- feel exhausted after a short journey! Hoping this too will improve. Keep us posted of how u get on

  • Hi P101. The eye pupil thing is an odd symptom and I know I read something about it VERY recently and I can't remember where! But it was either Cushing's Disease/Syndrome or Addison's disease. Either way, I believe dilated pupils are a cortisol problem. If they haven't tested your cortisol that would definitely be a must. With Cushing's Disease, in particular, the symptoms you mention are a good fit, BUT, and it's an important but, there are some important symptoms that stand out - like central body obesity, purple striate on the body, a hump on the back of the neck, sudden weight gain, high blood pressure. You DON'T have to have all of these, but one or two certainly. Google it if you think it might be relevant and you'll get a better picture. It's a rare disease, so very easily overlooked, even by consultants, so it is worth checking out if nothing else fits.

    P.S. Maybe if you try Googling 'Cortisol, pupil dilation' it will bring something up!

  • Thanks, Helvella, I had no idea that had a formal name! I can't see any mention of Cortisol or Addison's or Cushings, but, of course, the thing I read was about unnatural dilation of the eyes in the morning, not about unequal pupil size, so I imagine they are two different things.

    Maybe unequal pupil size AND dilation in the morning is something different from any of them yet again!

  • I knew it existed and must have a name - but a search is what found it, it was not something I had ever seen before.

  • Me too, but I didn't realise it was 'a thing'. I think David Bowie suffers from this, doesn't he? Or does he have two different coloured eyes? No, I think it is different pupil size, but I have a feeling his might stem from a childhood injury.

  • Seems neurosyphilis can cause aniscoria:

    ncbi.nlm.nih.gov/pmc/articl...

  • Argggg... a long article on dementia, which looks interesting, I must admit, but I'm in the middle of a doctor & withdrawal precipitated migraine so it just looks like gobbledegook to me right now. Is the aniscoria buried in there somewhere?

  • Very many thanks Helvella for this link - reading it made me wonder why our family had to fight so hard for relative to get B12 testing and treatment after a wrong dementia & ME diagnosis ?!!!

    According to these extracts from the link, B12 deficiency should have been considered earlier, especially with a history of vegan/vegetarianism and ME, yet our letters and pleas, with guidelines and information on B12 def. diagnosis and treatment, were ignored and obstructed time after time.

    "Evaluating cognitive dysfunction requires involvement of family or other independent observers (not just the patient).

    "In our practice, we approach MCI patients in the same manner described earlier. We attempt to define and quantify the cognitive impairment, identify any potentially reversible conditions and address comorbidities, such as vascular risk factors in hopes of preventing progression. Much of our effort is oriented towards education of patients and their families". (Ha, ha - the other way round)

    "Lab testing B12 levels - Methylmalonic acid/homocysteine levels (confirm vitamin B12 deficiency)

    Potentially reversible syndromes

    - Depression

    - Medication induced

    - Metabolic derangements

    - Vitamin B12 deficiency

    - Thyroid disorders

    - Thiamine deficiency

    - Chronic disease (e.g., renal failure, hepatic failure, malignancy)"

    I am amazed and angry that surgeries are allowed to get away with murder - their arrogance and ignorance causes delay, worsening symptoms and permanent damage. Why is this information not getting through to them or ignored?

  • Thanks for your reply Chancery. I'm trying not to google anymore for a few weeks! I suffer from migraine so I was told it could be that. I guess I worry it could be a sign of Ms - I really want to try and get some normality back and aim to get back to work even just part time. I'm a little under weight (54kg - approx 5ft 4inches), my blood pressure tends to be on the low side rather than high not sure what the purple striates means? I had an Mri recently which was normal - would that not show the cortisol issue? I'm not too sure what qualifies as a hump on the neck? I have really poor posture and years of bending incorrectly and working with infant classes hasn't helped! Getting hypnosis from a properly qualified person at the end of the month - hoping that will help some of the remaining symptoms. Give anything a try!

  • Hi p101. It's definitely not Cushing's then. No way you could be underweight with Cushing's. I'm honestly not sure about Addison's - that might show weight loss. That produces low cortisol, I believe, but I haven't studied that so much because it's not relevant to my investigations, so I wouldn't presume to say.

    But how about coeliac disease? If you're underweight that might be a way to look, if you haven't done that already. It produces all the exhaustion, pins & needles type symptoms, plus it definitely brings on migraines in a lot of people.

    Coeliac is a nice easy test/tests, and plenty of info on the net.

    P.S. No, MRI wouldn't show cortisol levels.

  • Yeah I've had coeliac test but it was inconclusive. (I was struggling to eat as my stomach was in so much pain so unlikely that I'd had enough gluten the 6weeks before test which is needed anyway). It showed gastritis in stomach and lymphocytes which indicate auto immune disorder - I believe? But the villi were totally fine from the biopsies taken. So my next step is waiting on my appointment at gastric dept. They thought I had reflux originally but my esophagus is totally fine. Been to see dietician who thinks the stomach symptoms, b12 and vit d are classic coeliac symptoms - she can't understand why I wasn't tested years ago and thinks it's strange that my bloods always in norm range despite such deficiencies. She says usually the routine bloods would be out prompting checking b12 etc. but I had to push for further tests as I'm sure they thought it was mental health rather than physical.

  • Hmm, that's a puzzler right enough. It has to be said that biopsies are not infallible, because even although they take five (six?) samples they could just take them from the wrong areas. A push, I know, but it does happen. And, of course, some people with late onset coeliac don't show the classic gastric symptoms - it attacks other areas first. You could be one of those unlucky souls.

    I'm guessing there's still some pieces of the puzzle missing here. Maybe a good search through past illnesses or writing down all your symptoms, no matter how trivial, might throw a new slant on something. Believe it or not I use 'the Google method', which I invented just to stop me getting bogged down in false diagnoses.

    I take any symptoms I have that strike me as unusual, like, for example, 'ringworm and hump on back of neck' and put them into Google to see what it turns up. I do it this way because things like fatigue and depression and indigestion are so common, and could apply to so many illnesses, that they throw up nothing but confusion.

    What you want to look for are things that are really strange, like dilated pupils in the morning or a butterfly shaped rash, things that wouldn't be normal for anyone, and put them in together. It's remarkably good at bringing up more accurate diagnoses, or at least giving you a damn good lead. Of course, you have to use some discretion and not diagnose yourself with cholera and hepatic cancer! It's not supposed to terrify you, just stop you getting boxed in by your own (limited) knowledge.

  • This has cheered me up. :-D I'm now contemplating which pair of bizarre symptoms to enter into Google.

  • Well, it helps if you put in your own bizarre symptoms rather than random ones, but hey, keep your doctor on his toes. You could even make a few up, like 'lilac dog-shaped rash' and 'inability to smell fish and chips'...

  • Actually, I think I had that dog-shaped rash, but it was more of a magenta... I tried chronic sinusitis and palpitations, but ended up with an awful species of cardiac condition. I'll keep having a whirl....

  • Yeah, palpitations would do that. But now you have me intrigued, thinking what the hell could be causing sinusitis and palpitations, other than a VERY bad migraine.

    Now you've started me off. Don't DO this to me, woman, I hate mysteries. I must solve it, I MUST...

  • :D

  • Hi p101, Thank you for your response. I did have my Vit D checked and I was deficient, my level was 23 so I am taking Vit D also. How long did it take for your neuro symptoms to get better once you started treatment for B12?

  • To be honest the improvement after b12 wasn't that great (but mb it just needed time). I found the biggest difference when changing to a gluten free diet. I am inconclusive for coeliac's but decided it was worth a try anyway. But seemingly cutting out gluten can improve auto immune disorders generally. Only time will tell if this works for me or if it's coincidence. I also had vitamin D supplements introduced in the last two weeks.

  • Hi Lyssaone. I assume they've checked your thyroid, because those symptoms all occur with thyroid too. If not, that would be one to do asap. And if you've seen a neuro they'll have checked for MS, which it does sound like, I must admit, but I assume they've already ruled that out.

    But for my money I'd say that your seriously underwhelming oral treatment could be a definite culprit. Either that or you have a dodgy thyroid!

    P.S. Great neurologist, who a) knows about B12 and b) knows it should never be below 400. You should either frame him or hire him out! Mine had never heard of it, let alone knew what its level should be.

  • Hi Chancery, I have been worried about MS but they did a brain MRI and evoked potential nerve testing, they were both normal thank God. How long does it take for these nerve symptoms to improve?

  • Hi I am late to this but just want to reiterate that you should be on injections. The NICE guidelines clearly state that the treatment of choice for neurological symptoms is injection.

    Please go back to your GP and neurologist with the guidelines and get injection treatment as soon as possible- you will see a huge difference.

    One of my symptoms was unsteady gait with foot drop and leg weakness, loss of vibration sensation in feet- all these improved within 2 months of alternate day B12 injections but I had to be very assertive to get the treatment. I did not know for sure it was B12 deficiency when I started but thought it was worth a shot. GP thought it was MS. MRI showed some abnormalities but not enough for MS diagnosis.

    My severe symptoms started with a B12 level of about 180 but it had been over 200 a couple of years ago and in retrospect I have had B12 deficiency symptoms for several years- just wasn't tested before. So, yes it could be B12 deficiency with a level of 280.

    It is a pity neurologist didn't do an MMA or homocysteine before supplements started but hey ho you are where you are. Next stage is getting an injection treatment trial. At least you have a neurologist who knows something about B12- mine wasn't interested cos I didn't have MS.

  • Lyssaone, i have ms and had it for 37 yrs if your mri scan is normal chanced are your clear for ms, nowadays i believe ms will show on a mri scan hope you get some answers soon.

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