'The noise in the wind', the good, the bad and the ugly: where I'm at with B12 'toxicity'

Hello All.  I first logged on here two - three weeks ago after my GP diagnosed me with B12 toxicity and stopped my B12 treatment, after which I discovered that I had been diagnosed with PA four years ago, but not told. I was in a bit of a state!

Arriving here is one of the best things that could have happened to me. The amount of advice, support and information offered has been just astonishing so I thought I'd just let you all know  how much difference you've made to me or, to put it another way, 'where I'm at' so far.

Firstly, I was told that there were no NHS gastroenterology appointments available: I had to go on a waiting list to be put on the waiting list! So... I booked a private appointment (which I hated having to do) and was there in three days! To cut a long story short, treatment offered for gastric parisis and intercostal neuralgia, aychlohadia identified. When we moved on to B12 deficiency, the opening sentence was 'well if we ignore the noise in the wind...' Bet you know where this is going! I asked about intensive B12 therapy, as per NICE guidelines, and was told 'that's only for people in wheelchairs. You walked in here unaided! Enough said about that! He did say he would write to my GP and ask for three monthly B12 to be re-started, despite 'supra normal' B12 levels.  How kind.

Next: went along to see the practice nurse, armed with loads of highlighted information (gleaned from you lovely lot) and an email from the Head of Clinical Neurosciences at one of the top Uk universities stating that 'there is no such thing a B12 toxicity. The high levels are simply an indication of treatment'. That got her attention PDQ!  Short version again - the idea of toxicity came from the patient information leaflet inside the box of hydroxycobalamin in the side effects section!!!

Now the goods news: an apology followed by listening (end of surgery, I talked for an hour, not sure what I said). Another apology and promise to speak to one of the more forward thinking GP's).  He called me in the next day and is looking for an appropriate neurologist and gasteroenteroligist with a specific interest in B12 deficiency / PA (I'll hope for a little expertise, as well). On the issues of alternate day injections - not entirely adverse but wants to take advice to make sure he doesn't do me any damage (fair enough, but it's a shame he doesn't know)!

And then: the private gastroenterologist wrote to the surgery to say in his expert opinion, intensive B12 therapy will not help because the problem is long standing and is likely to be permenant. He might be right BUT I don't accept that, at least not yet! And I'm waiting to see what impact that little sentence will have on the GP's newfound desire to help!

So - after being here, this is what I think. I've probably been undertreated with B12 all along (enough to tick along but not enough to repair), may have a problem with methylation, I need to consider cofactors as well, self injecting is the way to go (can't do any harm).

This is what I hope - extra B12 and a careful balance of cofactors may just make a difference and allow me to recover at least a little health.  

I know it might not be quick and I've got so much to learn...but I'm not done yet!

An apology: lots of question still to ask (there's one brewing at the moment) so please bear with me.

A thank you: to all of you here. I've come to think of you as my 'stranger friends' and I really don't know where I'd be if it weren't for your support (oh the positive power of a like!).

Finally, the best thing I can say is, let's have more 'noise in the wind'. MUCH MORE!

Oops, sorry. I've been very loooong...again!


59 Replies

  • And then: the private gastroenterologist wrote to the surgery to say in his expert opinion, intensive B12 therapy will not help because the problem is long standing and is likely to be permanent.

    Well, of course it's permanent. Did he mention anything about Autoimmune Gastric Atrophy? Because that's almost certainly what you've got. It causes the achlorhydria and the B12 deficiency.

    With a bit of luck the NHS gastroenterologist will be a bit more savvy.

    One thing I did that seems to have worked well was to buy a copy of Martyn Hooper's latest book and give it to my GP. He read it pretty darn quickly and it's not doing the rounds of the rest of the practise members!

  • No. He never mentioned autoimmune gastric atrophy!  Something else for me to research, I think. When you say it's permenant, do you mean that its probably too late to get any recovery with B12 treatment? Or just that the condition is permenant and will require life long treatment? I'd love to be able to believe  that some of the neuro symptoms and 'the fog' can be damped down a little! I have Martyn's book. It's excellent. Good idea - I'll get one for the doc (and hope he doesn't throw it at me). Thanks fbirder 

  • The gastric atrophy is permanent, as is the Pernicious Anaemia that causes it. So you will require treatment for life (or until somebody finds the gene responsible for the autoimmune response and the technique to edit it - CRISPR).

    Symptoms should improve to varying degrees as long as you've got enough B12 floating about inside you.

  • Thanks fbirder. The thing I am fighting with is that a) my GP stopped all B12 treatment and b) the consultant decided that I have permenant  neurological damage that will not be helped by more frequent B12 treatment (i.e alternate days until no further improvement). Not to mention the continued symptoms of B 12 deficiency.  So...As you say, I need to be awash in the stuff. So...I'm going to start self injecting...with finger crossed, I think. Thanks again for your input. Much appreciated.  Oh and, I've started reading about gastric atrophy and yes, may history fits!

  • If you have confirmed PA, you need B12 life long in order to make RBC's, without it you would eventually "pop your clogs". I find it astonishing that any Dr would say you don't need B12 supplements.

  • Hi fbirder just looked at books on Amazon - in your opinion is the Martyn Hooper book the best one to give to my Doctor as I am having blood tests this week and seeing him the next so I want to give it him before I see him as he has said he doesn't know anything about B12 defiencey and I am feeling too rough at present to go in with facts and figures. I just cannot retain them at the moment so giving him a book seems a good idea. 

  • Hi Blackstar. I loved it! It's very accessible for a non medic but also contains more complicated information that a GP will (or should) understand. It also outlines some real patient case studies and goes into some of the problems we 'deficients' have with accessing treatment (I.e.. Getting enough B12 to make the symptoms go away). Often this means that we require much more than is proposed in the BNF or NICE guidelines.  Also, it's underpinned and referenced with medical research papers etc. so hopefully will be seen as 'creditable' by other medics.  So yes, I think it would be very useful.  Having said that, I'm really new here and it the only one I've read so far. Another book recommended by others here is called 'Could it be B12 Deficiency' by Sally Pacholok - that's next on my list of things to buy.

    Sorry you're feeling so rough. I know exactly what you mean about not retaining anything. It's not much fun is it!

    Don't know if you've had any other advice from people here but if you click on my user name it will get you to my profile.  Have a look at my first post. It contains some very good links to reference sources (i.e. BNF and NICE guidelines and other links to information about treatment with B12). I printed off some of these, highlighted the bits that were relevant and took them in to the surgery.  A very concise way of getting them to read as much information as possible in a super quick way.

    Hope it goes well - would be interested to hear the outcome. Will keep fingers crossed for you.

  • THANK YOU so much Foggyme. You are very kind as are the rest of the lovely people on this site! I will read your post and I will print off guidelines as you suggest. Normally I can go anywhere and hold my own but at the moment I feel quite unwell so it is easier to give my GP the facts rather than me having to learn them all. However having said that if I don't get the treatment I want and need I absolutely will challenge him as nobody is going to care about my health like me. For years now he has put this down to the menopause after me telling him it's not. Thank you once again and I will post the outcome. 

  • I know how you feel. This nasty little disease makes you feel most unlike yourself. Some days I can barely remember who I used to be! And yes, for years my doctor has simply been saying that she has 'nothing to offer me', so I know how you feel about that, too.

    I'm new here too and not very knowledgable yet but it's been really nice to offer something to somebody, a small way of paying back the kindness I have received from others. 

    Oh, and I think I forgot to say (but maybe not), I'm also going to take a copy of Martyn's book up to the surgery.

    Anyway, good luck Blackstar, I'll look out for future postings.

  • Thank you Foggyme. I am going to buy a copy now and give it to him on Thursday. Thank you for the good luck - I'm thinking I may need it!!

  • "This nasty little disease makes you feel most unlike yourself. Some days I can barely remember who I used to be!"

    I read this last night and it made me cry because that was exactly how I was feeling after snapping at my partner and then wasting the afternoon sleeping instead of enjoying the sunshine with my children.

  • Oh Jenni. I wish I could make it all better for you. I snap and sleep too. And most days I hate myself for the way I am. I wish I could give you a hug. Hope you have some better days soon x

  • Thank you. My B12 has been ordered, so hopefully some better days are on their way!

  • Oh that's good news. I'm new here but many have posted to tell me that you also have to keep vitamin levels right so that the B12 can be metabolised properly in the body (i.e. Serum ferritin over 100, likewise D12 over 100) and lots of other things to (can't remember quite what- foggy!). If you click on my username and have a trawl through my posts ( there are only a couple) you'll see what others have passed on to me. Hope it goes well. Post again so we can see how you are x

  • See my post below. Here's something that will help with vitamin information. Go to b12deficiency.info click on b12 treatment and at the bottom of that page click on the link for key vitamin information compiled by Pat Kornic. Just take that to you GP ask for your levels to be tested and monitored.

  • Thank you.

    My doctor has refused to do anything other than every three months (I had 6 loading doses in March). My symptoms were back after 5 weeks so, after begging my doctor, I've ordered my own. I started a good multivitamin when I had my loading doses as I had read about needing all the other vitamins too.

    Thanks for your info.

  • There were three reasons I went for Martyn's book - It was the most up-to-date; it was British; it included info from the survey results that were published in a journal.

  • Thank you fbirder  very much for your expertise - I will order one now and give it to my Doc on Thursday. 

  • Hi fbirder,

    Just a small point - did you mean  "He read it pretty darn quickly and it's now doing the rounds of the rest of the practice members!

    I'm thinking of doing the same with my own copy

  • D'oh!


  • I really like the "high levels are just an indication of treatment" if only all the medical profession would take this statement onboard.

    Would You have a medical negligance claim because they knew you had PA and did little to rectify it.

    Re martyns book- it is the most up to date and informative book and relevant as it deals with uk based sufferers.

  • Couldn't agree more about your high levels comment.

    And yes, I probably would be able to make a claim. But I haven't got the energy. It'd probably be better for me if I focused on getting appropriate treatment and tried to educate 'them' on the way so anybody coming after me will get better treatment than I did! And if I can't get it from them, I'll get the B12 and do it myself.

    But I know where you're coming from.  It's difficult - I don't for a minute think anybody intentionally meant to harm me but  they have certainly been negligent!

    Onwards and upwards, I say.

  • Hi Foggyme,

    I had two thirds of my stomach removed 57 years ago in 1959 but didn't actually get diagnosed with P.A, until 13 years later in 1972 and have lived in ignorance of what it's all about until I "discovered" the P.A.S. plus this community and started leaning

    I too have bought both books mentioned here and you can probably understand my "disquiet" when I read On page 56 of “Could it be B12” (Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.) a case was recorded part of which reads:- 

    … He (the doctor) wasn’t surprised: The woman’s history included a gastrectomy twelve years earlier that inevitably results in severe B12 deficiency if patients don’t receive compensatory B12 injections”. 

    I got my first B12 injection on 10th May 1972 - 13 years later and 44 years ago tomorrow.

    Should I have not been warned of this back in 1959 after my gastric surgery and given B12 injections instead of just being advised to “get a sedentary job”?  Would I have had grounds for a claim?

    Well it's all a bit late now and I guess I must be thankful that I'm still "clivealive" coming up to 75.   

    I wish you well for the future.

    (You can read my P.A. Story by clicking on my name at the top.)

  • Thanks clivealive. Isn't if awful how long this has been going on!  So much living needlessly wasted through lack of something so simple and cheap to deliver.  You're an inspiration to us all, I think. I'll read your PA story - it's surprising how much it helps hearing of others who have struggled and survived, in spite of the medics! Thank you for your best wishes.

  • Hi Foggyme "in spite of the medics!" I really like that although I have to say I have every respect and admiration for Dr Wool who "sorted" my young wife's heart problems out, was our GP through the births of our two daughters in 1967 & 1969 never "gave up" on me until she got the diagnosis for my P.A. in 1972.

    Sadly she left General Practice shortly afterwards  eventually to become "Director of Prison Welfare Services" and "Head of Prison Psychiatry Unit" - works for which she became a Dame in the Queen's Honours list.

    In 1988 Dr Wool kindly agreed to play the church organ at the wedding of our younger daughter and in a letter thanking us for the "privilege" she commented (rather sadly I thought) on her time in General Practice "I think they were the happiest days of my life and I now wonder why on earth I moved on"

    She must be in her late 80s now and as far as I know still lives locally as one of our neighbours goes to the same church and sometimes makes mention of her having attended.

    None of the doctors which succeeded her ever aske me how I was coping with my P.A. - well I was having the injections every four weeks wasn't I - what could possibly be, or go wrong???

  • Getting well again should be your priority and the sudden interest in your condition could be interpretted as the Dr's knowing that you could if you want to, take the matter further. If I were you I would maximise on their eagerness to help and get them to check you out for other auto immune disease with similar symptoms such as Hashimoto thyroiditis (thyroid disease) or auto immune arthritis.

  • Thanks Granny66. Good idea. I've already started a list of blood tests I'd like them to do so will also start thinking about the possibility of related conditions. My goodness, they're not going to like me much, are they!

  • Hi,

    I don't know if you have ever spoken to Martyn Hooper but he might find your story interesting.


    01656 769 717

    There might be case studies of people with similar experiences on Martyn;s blog.

    See this recent blog post.


  • Thanks sleepy bunny.  I've spoken to Martyn a few times and he's offered lawyers,if I want them. Note to self - must apologie to Martyn as I think I had the same conversation twice over - oh the fog! There's a similar case study in Martyn's book but I'll also take a look at his blog. Isn't it terrible that so many people are suffering the same appealing treatment! More noise in the wind, I say.  Oh, here's a thought, do you think the consultant was referring to people like Martyn when he talked about 'noise in the wind'. I do hope so.

    Thank again sleepy bunny.

  • I started treating myself after trying to talk to my GP and being told that the symptoms I had were nothing to do with B12.  I had had loading shots 15 months earlier and was on maintenance shots every 2 months and was just getting worse and worse - sometimes high dose B12 just kicks of a cycle of functional deficiency - plenty in blood but not enough getting through to the cells where it is needed - and I'm one of those people.

    I started using a nasal spray at much higher frequency than was recommended and for me that was enough - I had also ordered some injectable B12 on line so was using the spray as a stop gap whilst waiting for it to arrive - inject occasionally but still get most of my B12 from nasal sprays - and I get through a lot of B12.

    Anyway, 3 weeks of the nasal spray (3-4mg a day) and I went from struggling to feel steady walking to being quite happy going up to the top of a ladder and perching their to prune a grape vine.  3 months later I realised that the anxiety and depression that had dogged me for 40+ years were no longer there.  I still have a few issues but have basically got a life finally rather than an existence which was what I had before.  I had been thinking I would need to reduce my working hours because I was struggling to cope and couldn't see any way out of a job that was making me very unhappy.  I've now managed to increase my hours and move to another job that I really enjoy.

    Recovery is more than possible.

    Inclined to think that your gastro should have prefaced his letter with 'in my INexpert opinion'.  shame there are so many out there that are unaware of their levels of ignorance ... too arrogant to even consider that they might not know everything - let alone admit it and do something about learning more.  May be you should send the gastro a copy of Martyn Hooper's book as well as passing one on to your GP  

  • Hello Gambit.  Thanks so much for sharing your B12 deficient story. Sounds like you've certainly managed to get your life back, with style. You've managed to instill a little of that thing called 'hope'.

    I think I may be one of those people, like you, who has lots of B12 sloshing around doing very little at a cellular level. I'm going to do what you did and load myself up with plenty of B12 and hope that it's not too late to do some good.  Like you, my maintenance three monthly dose did little to improve my symptoms and I have become worse, over time. But this falls on deaf ears.

    I agree wholeheartedly with your comments about the 'gastro' I saw.  When I explained about how quickly the B12 ran out, he even had the gall to tell me that 'a lot of my patients tell me that'. How on earth can he not look into that!

    Send him a book? Good idea and I'll think about it. Perhaps I could put it in with a copy of his very large invoice!

    Your comment 'recover is more than possible' and that fact that you've done it helps enormously - I'll do my best to beat this thing!

    Thanks again Gambit.

  • Really hope things work out for you.  Lucky that you can't overdose on B12!

  • Yes it is. But I'm going to give it a good go!

  • The only way to know if the problems you have due to B12 deficiency are permanent are to give a good treatment trial- I.e. alternate day injections. That's what I'd do. Good luck!!

  • Thanks Secondchange. That just about says it all! Going to do my first self injection today (fed up waiting for a response from my GP). Fingers crossed - I'll let you know how it goes.

  • Pardon my language but what the h--- is B12 toxicity? It is a water soluble vitamin and you pee away any excess. You cannot overdose.

    To repair nerve damage you want your B12 levels high. 

    To better utilize the high B12 you should also be supplementing with folic acid, B6 and a daily multivitamin to provide the minerals and metals used up when your metabolism kicks into high gear.

    If you have been very low on B12, it can lead to apparently "new" symptoms.  These will repeat after each B12 injection until you are no longer deficient.  Someone may interpret these "detox" symptoms as "B12 toxicity".

    Start a logbook of all your symptoms along with the time of your food, drink and meds.   Because the gut is involved there is a delay of 3 to 48 hours for a symptom to show up or reappear.  May may also notice that a sequence of different symptoms reappear the same time after the jab or after certain foods.

    You may also have new food tolerance issues like dairy or gluten.

  •  I developed peripheral nerve symptoms after approx two years of three monthly B12 injections. I requested the recommended treatment of alternate daily injections until symptoms improved. The head of practice told me B12 was toxic and prescribed just 1 extra injection.  I knew this was absolutely incorrect but was ignored and  treatment denied for weeks,  I have permanent damage as a result. Regarding legal action maybe this would improve standards of treatment, insurers would ultimately have an input into this issue to protect themselves from claims if numbers of people affected potentially very high . Has anyone asked NHS England or any other relevant organisation if they issue protocols for treatment of PA . The chaos many of us encounter suggest guidelines are either lacking to a considerable degree or ignored.

  • There are guidelines from the National Institute for health and Clinical Excellence (NICE) and the British Committee on Standards in Haematology (BCSH). They both recommend the treatment protocol outlined in the British National Formulary (BNF).

    6 loading doses over two weeks followed by one every 12 weeks, unless neurological symptoms are present when it's loading doses (3 per week) until there's no further improvement in symptoms, followed by one every 8 weeks.

    However, that is obviously insufficient for a significant minority of PA sufferers.

  • fbirder I gave my GP the British Committee on Standards in Haematology briefing in 2014 but this was ignored for weeks whilst I continued to sink, memory awful, burnt everything I put in the oven, numb feet, dizzy etc . Eventually guidelines were followed and I now have 1 injection a month. I wondered if any NHS guidelines  included information regarding levels of minerals required to support B12 injections, some are essential for tissue uptake, in my case low iron/deficient iron  was ignored for years. 

  • I was interested in your comment onyx33 that you have permanent damage. What has led you to that conclusion? I am asking because I am having nerve conduction tests and an MRI scan later this week after 5 years of 3 monthly injections and nearly 3 months of self injecting every other day. I am terrified that my Neuro symptoms will leave me permanently disabled.

  • Sweetnessandlight. Can't respond to your question but I just wanted to wish you luck with the tests. Hope all goes well.

  • sweetnessandlight answered you a little while ago but lost post somehow so will try again. Prescribed usual loading dose late 2012 when B12 (ng/L) was 196 (-) and then 3 monthly injections. Around beginning 2014 level had risen to 845 and by June was 2000(+)  but around this time I developed nuero symptoms and asked for alternate day treatment. This was denied for weeks, doctors ignored  British Committee on Standards in Haematology briefing supplied by PAS  told me B12 was toxic etc. Finally I was told to inject myself every other day and did this for weeks until no more improvement, left with tinnitus and feet symptoms. Since last summer despite B12 (ng/L) of 1,500 (+) feet symptoms worsening, mental fog, insomnia pain walking and so on. This was despite monthly B12 injections during 2015. This year getting dizzy again, vision affected, couldn't shake off respiratory infections  etc. I recently learned that since 2012 my iron level  has been low, serum ferritin level (ng/ml) 15 in Feb 2014 but not tested again until March 2016 found deficient at 10(-) . Prescribed iron,  level tested again late April had risen to 27. To metabolize B12 and thyroxine a level of 100 is required. I think that despite good blood test results for B12,  my tissue uptake is poor, due to low iron. I'm hoping that neuro symptoms will improve as GP has agreed to now get iron level to 100 and this will hopefully improve B12 and thyroxine tissue uptake, time will tell but worried long delay in efficient treatment has caused permanent damage. Worth asking for blood test results as GP's seem to know little about how to treat, especially when faced with a patient citing PA symptoms despite good B12 blood test results.  Wish you well with your recovery, I think even the small increase in my iron level is helping me, maybe inadequate iron is a common factor when symptoms remain despite what seems to be adequate B12.  We encounter difficulties with doctors when B12 blood tests look normal but we have symptoms, when I asked for the alternate day injections guidelines direct, one practice members response, they knew of a patient who went blind because of PA but he was alright on one injection every three months. It gets very frustrating I know.

  • Love the language! Just about hit the nail on the head!

    Just trying to sort out supplements and thanks for the warning about 'new' symptoms appearing when B12 levels go up - I'll watch out for that!

    I like the idea of a logbook. It'll help me to keep track of what's going on, especially in light of my tricky memory! Will also keep an eye on the food tolerance issue.

    The practice nurse got the idea of B12 'toxicity' from the patient information leaflet in the box of hydroxocobalamin, listed under side effects. Didn't like the idea that I'd asked for more and was predisposed to think that I'd simply had too much - and told my GP so! Not good.

    Perhaps we should have a new syndrome. The Oliver Syndrome, for all those who dare to ask for more!

    Thanks for all your advice. It's very useful and will help me to not worry when I feel worse after self injecting.

  • Love the language! Just about hit the nail on the head!

    Just trying to sort out supplements and thanks for the warning about 'new' symptoms appearing when B12 levels go up - I'll watch out for that!

    I like the idea of a logbook. It'll help me to keep track of what's going on, especially in light of my tricky memory! Will also keep an eye on the food tolerance issue.

    The practice nurse got the idea of B12 'toxicity' from the patient information leaflet in the box of hydroxocobalamin, listed under side effects. Didn't like the idea that I'd asked for more and was predisposed to think that I'd simply had too much - and told my GP so! Not good.

    Perhaps we should have a new syndrome. The Oliver Syndrome, for all those who dare to ask for more!

    Thanks for all your advice. It's very useful and will help me to not worry when I feel worse after self injecting.

  • If you feel your B12 is stuck in the blood then make sure (a) your folate level is high in the range and (b) consider low dose Lithium Orotate 5mg which aids transport into the cells.

  • Thanks lilniki.  Is the lithium folate  something I can but over the counter?

  • Do you have any evidence for lithium orotate aiding transport into the cells? Orotic acid is mutagenic - sciencelab.com/msds.php?msd...

  • Hi lilniki. I'm new to all this and Its very tricky trying to sort out what I should and should not be taking to get this pesky thing under control. Can you point me to anything that would help me to understand how this 'works' at a cell level as I'm reluctant to simply 'tip more things in' unless I know what they're 'doing'. Many thanks.

  • Lithium decreases B12 in blood - ncbi.nlm.nih.gov/pubmed/995...

  • Read the information you sent. Good grief, shows how important it is to know what we're taking. Don't think this one's for me. Thanks fbirder. You are a mine of wonderful information. 

  • It's a Yasko's recommendation, and LO is fairly frequently suggested as a transporter aid on the MTHFR pages of FB. Yes I read a study that it lowers the serum B12 level, but that to me suggests that yes it works to pass  the B12 into the tissues. It's a very small dose 5 mg , nothing like the hundreds used for bipolar. I've been taking it almost a year now and for me it does seem to help.

  • Thanks lilniki.  This is all oh so confusing for a newbie! MTHFR - just trying to decide if it's worth getting tested for - but it's quite expensive! Would appreciate it you just let me know what FB is? Wouldn't mind having a read. I'm stuffing myself with information hoping that something 'sensical' is eventually going to pop in to my head! Thanks again.

  • FB is just shorthand for Facebook...... Do consider joining a MTHFR group on there.

  • Thanks lilniki. I'm just having a good laugh at how stupid I am! Good idea about the MTHFR group. I'll have a look. Cheers

  • I don't think stupid is the right word. Loss of short term memory is one of the first symptoms for B12D. Long term memory keeps working and somehow captures the information too.

    My wife has issues with my "forgetfulness". My way of handling this is to try to do her requests in order as soon as she asks. I don't think this is selective hearing but there may be some of that going on too which just complicates thinks.

    I can remember the conversation Later that I had with her but if I don't act on it straight away I forget at least one if there are multiple requests made in one conversation.

    My memory is better on jab day. Slightly worse the next day and noticeably worse the third day.

    I split my weekly dose in half and take 0.5 ml on Monday morning and Thursday morning. I found I couldn't last the work week if it took it all at once. I figure since the excess is peed away and my blood levels are high, cutting the dose in half and taking it more frequently would make it last longer.

    I used to self inject on Sunday night and sleep off the headache which was a detox symptom for me.

    Now things have changed slightly and I no longer get the headache but can still be a bit aggressive on Monday.

    All-in-all Tuesday and Friday are my best day.

  • Foggyme Wow! I admire your strength its fabulous! Well done! This is what is needed from all sufferers, we need to be stronger for this is a battle for us. I know Drs who have tried for years to get this out there, but they are being ignored and even ridiculed by there own community and they in turn are afraid to act upon it. We should maybe ask for the proof from the doctors when they say this is harmful or wrong, and ask for there evidence because you feel better taking it. Ask them how do we feel better taking it and then all worse for not, let them explain that! What do they have to prove what they are saying is right, ask where we can see what they read about it for not being right. After all we are the guinea pigs to the big drug industries who they support wholeheartedly, and I personally have ended up worse for taking there prescriptions with nothing said, not even an apology. Surely we have some rights. Warmest wishes x

  • Thanks for your lovely words Jay46. Have to say, some days I don't feel very strong! I think the thing that keeps me going is a determination to get well, in spite of doctors!

    Also, having had such wonderful support from this site makes a world of difference to me. Just knowing others out there are fighting the same battle makes it easier to carry on fighting.

    I'm hoping that as and when my health improves, I'll be able to do more to help all us B12 'deficients'. Not sure what that is yet, but I'm thinking!

    Again, thank you for your warm wishes. Really appreciated.

    Keep well.

  • Jeez! Well done you for persevering - what a shambles! 🍀🍀🍀🍀

  • Thanks Boozybird. A shambles indeed! GP's have not delivered following late impulse to help (no surprises there) so am now self injecting and waiting for further consultant appointments. I have low expectations of what I might receive from them! Being on this site is brilliant - so much help and information. I couldn't have done this on my own. Hopefully, better health will be along soon (if I'm lucky, it'll be like three busses coming at once!).


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