Finally

Finally I can see light at the end of the tunnel. For a few years I’ve been feeling “not right “ head mushy lack of anything. Regular gym goer to I can’t be bothered. Headaches etc etc. So after demanding a blood sample. My levels are 100 B12 and 4.8 Folate. Go has booked me in for a course of 6 in the next 10 days and then 8/10 weekly. I feel relieved already and haven’t had any jabs yet 😝

51 Replies

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  • All so easy to be fobbed off by a GP when you go in and try and get it across that you feel "out of sorts", "not right", "a bit weird", "not my usual self" etc. Good to hear that you'll be getting B12 injections. Good luck. Hope they help

  • I know at one point I thought I was going OMG mad. Thank you I hope I get my mojo back.

  • Found out recently too but now going back as if you've had neuro symptoms then you're actually supposed to have injections every other day until no further signs of improvement with checks every 3 weeks, not just the initial 2 weeks of 6 injections.

    My 2 weeks finished on 31 August and I crashed 2 weeks later so went back, they put me on another 2 weeks of which I've had 1 so far and cos of no appointments the next isn't until 3rd so going back tomorrow to try and get the doc to switch it to the proper loading dose as because it took so long to discover it needs a lot to recover.

    Usually someone comes along here and posts some links, here's the initial response I had from Sleepybunny to get you started:

    Hi,

    Thank you for sharing your story, I'm sure at lot of forum members can relate to aspects of it.

    I'm assuming you're in UK because 6 loading injections over 2 weeks followed by injections every 3 months is a pattern of treatment found in UK. It's given to those with B12 deficiency without neuro symptoms.

    "I asked one of the nurses who injected me what happens next and she said you get injected every three months "

    What the nurse doesn't appear to know is that in UK people with B12 deficiency with neurological symptoms should have the following pattern of treatment....

    A loading injection every other day for as long as symptoms continue to get better then injections every 2 months

    Do you have neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues?

    See lists below of B12 Deficiency Symptoms

    healthunlocked.com/api/redi...

    I gave my GPs a copy of PAS Checklist above with all my symptoms ticked

    healthunlocked.com/api/redi...

    healthunlocked.com/api/redi...

    "read about the guidelines which say they shouldn't stop if there's neurological issues until improvements stop so I was going to mention this to the doctor on weds"

    GP can find the info about treatment for B12 deficiency with neuro symptoms in

    1) BNF British National Formulary Chapter 9 Section 1.2

    GP will very likely have a copy of BNF on desk or bookshelf.

    healthunlocked.com/api/redi...

    healthunlocked.com/api/redi...

    2) UK B12 treatment info also in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

    healthunlocked.com/api/redi...

    Flowchart from BSH Cobalamin and Folate Guidelines

    healthunlocked.com/api/redi...

    Flowchart outlines when PA (Pernicious Anaemia) and Antibody Negative Pernicious Anaemia can be diagnosed in UK. Flowchart makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment.

    Have you had an Intrinsic Factor Antibody test?

    Do you have a diagnosis of PA?

    PAS (Pernicious Anaemia Society)

    If you have a diagnosis of PA or suspect that PA is a possibility , might be worth joining PAS. They can offer support and info on PA. You might be able to speak to them before your appt on Wed.

    healthunlocked.com/api/redi...

    PAS tel no +44 (0)1656 769 717 answerphone

    PAS members can access details about PAS support groups.

    healthunlocked.com/api/redi...

    PAS website has a section for health professionals which might be of interest to GP.

    healthunlocked.com/api/redi...

    Unhappy with treatment (UK)?

    Link about writing to GP about B12 deficiency

    healthunlocked.com/api/redi...

    Point 1 in above link is about undertreatment of neurological symptoms.

    Untreated or undertreated B12 deficiency can lead to permanent neurological symptoms including problems with spinal cord.

    PAS news item about neurological consequences of PA

    healthunlocked.com/api/redi...

    B12 blogs

    There may be stories on Martyn Hooper's blog that are relevant to you including how PAS has supported people seeking a diagnosis and correct level of treatment.

    healthunlocked.com/api/redi...

    Also a blog about b12 issues on "B12 deficiency Info" website.

    b12deficiency.info/

    CAB

    citizensadvice.org.uk/health/

    HDA patient care trust

    UK charity that offers free second opinions on medical diagnoses and medical treatment.

    hdapatientcaretrust.com/

    I am not medically trained just someone who has struggled to get a diagnosis.

  • btw Rheadster72 & Lockett72 is 72 as in 1972 or 72 yrs old? I was born in 72 too!

  • As in 1972 😜

  • Huh, guess there's gonna be a whole generation hitting these forums by the looks of it!

  • Yeah def possibility.

  • I was born in 73 :-)

  • Some days I feel like I am 72!! Today being one of those days

  • i find it so appallng that they dont know this info and when you go in andtell them they dont want to hear it- i had to fillin a form for somethingelse lastmonth at hopsital and the question was do have this what ever it was < times or > times i couldnt remember what was over or below and the nurses didnt know either- i gotquite ratty and said you should know- you are nurses- what the hell do they know??? sod all!

  • Yeah it takes a bit of having to ignore their attitudes and persevere. The silence I had from the nurse when I went back for my 1st jab of my 2nd loading dose was deafening!

    That's after I'd battled through the wall of receptionists who had to double-check with the doctor that I could have more.

    Ugh, people. :D

  • Oh dear sounds like a complete mind field as if it isn’t hard enough. I do hope they get yours up to scratch and you start feeling better. I’ll have a read of the link. Thank you for sharing.

  • "mind" field indeed lol! Yeah, I'm wading my way through the kindle versions of the B12 books now, made an amazon list for ease:

    bit.ly/b12-kindle-books

    Do make sure you get proper treatment though as effects can be irreversible, and that sucks big time, now you know this has to be priority #1!

  • I was born 1975 ever think we got the dud decade !!just want to add I felt terrible after initial loading for ten days then marvellous. am starting to go down a bit now heart palpitations in morning and sweating but have got spray and it's stopping ants taking over my brain so getting on and only have two weeks until next jab . Nearly three months gone . My level was 137 though but for me so far not too bad ! Good luck . It's a scary ride.

  • :( Did you push for the NICE guidelines "inject until no further improvements & check every 3 weeks"? Sounds like the gaps elongate the process. I've just printed out the NICE guidelines for my appt tomorrow, highlighting the important bits.

  • but yeah, dud decade but good disco tunes ;)

    Also pretty glad we have the interwebs when I found out, although much earlier would've been better of course.

  • I’ll think I’ll take them too for my first set. 😋

  • Lol yes sounds like we did. I was thinking of spray for top ups. I’m kinda worried and excited but so can’t wait to feel better. I know what you mean about ants in your brain it’s so frustrating as last year I had an amazing memory. Here’s hoping for early shots all round (the sharp kind ). Do you find the injections hurt?

  • "Nerve damage takes a long time to heal that is why there is no limit on the administration of B12 injections in those suffering neurological symptoms. Four injections per year will not heal nerve damage, they will keep you alive but deterioration will continue!"

    b12deficiency.info/what-to-...

    (7. Your doctor should adhere to these guidelines but sometimes this doesn’t happen.)

  • So I should really push for more. They do have on my records a visit for brain fog headaches etc. I will have to gauge the reaction of the nurse when I start them. Can the jabs be done by yourself? Do you hurt?

  • They.

  • YES! It's your brain! And body! Well they're the same thing!

    I'm gonna push as it's their duty to follow the guidelines and if there's any neuro symptoms then it should be every other day until no further signs of improvement, none of this waiting around crumbling into zombie states.

    Do the research, everyone's going to be different, I'll paste below the original reply Sleepybunny sent me. My one's next week and I'm already worried as there's a small window of opportunity to reverse the effects, how small - well I haven't found that specific detail yet :(

    Plenty of people on here self-inject, I really don't want to, I've gone my entire life saying I don't know how people can inject themselves, well that one looks like it might boomerang on me!!

    If they don't tomorrow then as far as I'm concerned they're not following official guidelines and I'll have to take it from there.

    ---8<---

    Hi,

    Thank you for sharing your story, I'm sure at lot of forum members can relate to aspects of it.

    I'm assuming you're in UK because 6 loading injections over 2 weeks followed by injections every 3 months is a pattern of treatment found in UK. It's given to those with B12 deficiency without neuro symptoms.

    "I asked one of the nurses who injected me what happens next and she said you get injected every three months "

    What the nurse doesn't appear to know is that in UK people with B12 deficiency with neurological symptoms should have the following pattern of treatment....

    A loading injection every other day for as long as symptoms continue to get better then injections every 2 months

    Do you have neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues?

    See lists below of B12 Deficiency Symptoms

    healthunlocked.com/api/redi...

    I gave my GPs a copy of PAS Checklist above with all my symptoms ticked

    healthunlocked.com/api/redi...

    healthunlocked.com/api/redi...

    "read about the guidelines which say they shouldn't stop if there's neurological issues until improvements stop so I was going to mention this to the doctor on weds"

    GP can find the info about treatment for B12 deficiency with neuro symptoms in

    1) BNF British National Formulary Chapter 9 Section 1.2

    GP will very likely have a copy of BNF on desk or bookshelf.

    healthunlocked.com/api/redi...

    healthunlocked.com/api/redi...

    2) UK B12 treatment info also in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

    healthunlocked.com/api/redi...

    Flowchart from BSH Cobalamin and Folate Guidelines

    healthunlocked.com/api/redi...

    Flowchart outlines when PA (Pernicious Anaemia) and Antibody Negative Pernicious Anaemia can be diagnosed in UK. Flowchart makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment.

    Have you had an Intrinsic Factor Antibody test?

    Do you have a diagnosis of PA?

    PAS (Pernicious Anaemia Society)

    If you have a diagnosis of PA or suspect that PA is a possibility , might be worth joining PAS. They can offer support and info on PA. You might be able to speak to them before your appt on Wed.

    healthunlocked.com/api/redi...

    PAS tel no +44 (0)1656 769 717 answerphone

    PAS members can access details about PAS support groups.

    healthunlocked.com/api/redi...

    PAS website has a section for health professionals which might be of interest to GP.

    healthunlocked.com/api/redi...

    Unhappy with treatment (UK)?

    Link about writing to GP about B12 deficiency

    healthunlocked.com/api/redi...

    Point 1 in above link is about undertreatment of neurological symptoms.

    Untreated or undertreated B12 deficiency can lead to permanent neurological symptoms including problems with spinal cord.

    PAS news item about neurological consequences of PA

    healthunlocked.com/api/redi...

    B12 blogs

    There may be stories on Martyn Hooper's blog that are relevant to you including how PAS has supported people seeking a diagnosis and correct level of treatment.

    healthunlocked.com/api/redi...

    Also a blog about b12 issues on "B12 deficiency Info" website.

    b12deficiency.info/

    CAB

    citizensadvice.org.uk/health/

    HDA patient care trust

    UK charity that offers free second opinions on medical diagnoses and medical treatment.

    hdapatientcaretrust.com/

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Nope all good for me .

  • Locket. I have found them to be a bit stingy I inject myself and am glad I do as for me it is a bit like removing a plaster, or brushing my thick knotty hair. I can do it at my own pace and I am in control. Not sure what the do in GPs surgery as I treat myself but I use insulin syringe so needle very small.

  • Yes I like the idea of at your own pace. I’ve heard that if it’s rushed it’s quite painful. We have an abundance of insulin syringes at work so maybe the way forward. Thank you.

  • Good luck with your appointment hope all goes your way and it gets sorted. I can’t thank you enough for all the help you’ve given me. I’ll be printing all the guidelines off and take them on my visit.

    I don’t like the idea of injecting myself we have a vets so may rope a vet in to jabbing me. I’m sure it’ll give them great pleasure haha.

  • Huh, I'm not holding out much hope to be honest but I'm big bald and scary looking apparently so you never know ;)

    Srsly though, I noticed the previous doc I saw 'resonate' more when I said NICE guidelines and he saw the logo on the page as opposed to the other ones which just had the text so I've printed out the whole 29 pages this time & marked off the relevant paragraphs (all the info on b12deficiency.info/what-to-...) and I've chosen the relevant sections for me from the letter writing page (http://www.b12deficiency.info/b12-writing-to-your-doctor/) - 1, 12, 11, 9, 7, 10 now I've got to tidy it up tomorrow & print it all out. I also got all the B12 kindle books, they're a fiver each bit.ly/b12-kindle-books but only been through bits so far.

    For me I can trace issues right back to my mother saying whereas my sister was always mega-energetic I was happy just to lay in the cot, to (embarrassingly) bedwetting till I was 10ish or older, to being 19stone at 19 and, well, basically everything, so if there's the slightest chance of any of this getting fixed then perhaps I won't be the bedridden mess I've been for the last couple of years now 45 and staying in my poor 80 year old dad's spare room cos I thought I was sh*t when actually my body just doesn't convert fat and carbs into protein very well!

    Good luck on your journey of discovery and recovery, glad to have been of some help - makes a change lols!

  • You are a star and keep fighting 😊 I wish you well.

  • oh and I've seen some references to 'autoinjectors' - not sure if they're better or worse, to be honest I've fainted before seeing needles stuck in me, I can't imagine I'll be able to do it myself but I'm gonna have to if that's what it takes - I saw a glimpse of 'the good life' the other week after a couple of injections and I want it back, can hardly stand up at the moment & walking into walls but heard that's also part and parcel of the recovery process - I do hope so!!

    Reversing out syndrome I heard someone say - went to the supermarket today and second time the fluorescent lights made me feel weird over the last week, only ever had that before when I was a kid & remember my dad driving me up to Brum for the car show & me having to leave after half an hour cos of the lights. Weird, but I'm not hanging around for months for single jabs, they can think again about that one for sure, thanks to this forum for the pointers and all who are doing such stern work here.

    I think I may be a little emotional lol ;) Good luck!

  • If you had a glimpse of what’s it like to feel well keep going and don’t give up. The doctors have a duty to help you and hey I hate needles but like you said if they fix you it’s all worth it. Good luck.

    I’m glad I was pointed in the right direction to this forum too must helpful and friendly.

  • Dear Steve, I presume you have spent some time on thyroid uk if not they may well be a great help in you quest to get fixed. Also I have found out about something called 'direct health payments' I am investigating but it seems some people can have direct payments for health (not care) to pay for health treatment. Just telling everyone because CCgs are keeping quiet for some reason. Imagine no more having to argue with GPs and self reffer with budget

  • Hi mandyjane! Thanks for your reply - I've signed up to it but not spent much time there yet, my #1 priority is to get my doctor to treat me as per the guidelines so prepping stuff for my appointment tomorrow.

    Then I get onto the thyroid as I asked about my recurring neck lump / goiter(maybe) issue which I've a feeling comes from wheat/gluten/etc. issues as did lose a lot of weight previously when I gave up wheat & carbs, and I see they often go together but I believe the PAS predates that a lot.

    My mother's spent what seems to me her whole life 'battling' the health system and I don't want to end up in a similar situation so keen to get it sorted as we all are. Her symptoms seem very B12 - even things like Parkinsons misdiagnosis, now blood platelet level issues, bit of paranoia chucked in.

    I can certainly see a pattern throughout my life of the issues, and if my body can't properly convert fat + carbs into protein then a lot fits into place. I think the thyroid stuff goes on top of that figuratively and literally lol, but I don't know it's the 'main' issue, of course I could be totally wrong, but whether I am or not, I should still be treated as per the guidelines hence my current plan of action.

    Interesting to hear about the payment plans - I had no problem paying for anything a few years back before I descended into flat-dwelling zombie too anxious to turn up to networking meetings & holding out hope if this works I can get 'back to normal' & continue the business I've put many years of work into. Argh, I hate being ill!

    Right, I'll add that info to yet another evernote, thanks again & wishing you well!

  • Steve. Hope you done mind but i think your B12 issues could be secondary to thyroid. Thyroid issues are often caused by autoimmue response and it is thought by many that it is triggered by gluten. Lots of people with thyroid issues find giving up gluten very helpful. Lump in neck probably goiter.Also thyroid issues reduce the absorbtions of all kinds of vitamins and minerals in the body and B12 issues are common as a result. Also thyroid issues are just as systemic if not more so that B12. B12 primarily affect the brain which affects lots of other things. Thyroid hormones are or should be in every cell in your body so lack of thyroid hormones and anything can go.

    As a miserable foot note to this is that getting diagnoses and treatment as hard as it is for B12.

    It might however be worth you getting your neck felt by GP tommorow and ask for copies of any previous thyroid blood tests and for god sake dont belive GP if they say nothing wrong with thyroid.

  • Hi mandyjane - of course I don't mind, this is how us humans learn and progress, something perhaps the 'industry' will learn at some point - open sharing better than closed, patented, sold, etc. Anyway I digress..

    /if/ it is thyroid, should I still be pushing for the 'correct' treatment of injections every other day until no further signs of improvement?

    From my research so far, I think it's either hereditary pernicious anaemia or pernicious anaemia from diet from birth as there's just too many things that match up to say it's just X or Y.

    So I think my body has an issue converting fat + carbs into protein, which I've compensated via diet, and when I do things now like eat wheat or drink too much cider (can't drink beer) it makes my levels drop too low.

    Or is that all attributable to thyroid issues? I guess it could be, as said I haven't done enough research into that yet as been kinda keen to ensure I don't get irreversible issues as had enough of those with my brain from a young age.

    Thanks for your time and attention!

  • oh, and the doctor said the lump was nothing to worry about, and would go away in time but booked me an appointment at ENT clinic for 10 oct 'just to put my mind at rest' cos I thought it might be something to do with smoking.

    It's definitely been worse since I've been back at my dad's as he eats wheat and as I guess my body looks for more b12 I end up eating the stuff.

    Also gave up dairy years ago as was bunged up a lot but had bits here and there of late, probably why my b12's gone so low.

    So that's all thyroid stuff I guess...

    So much to learn!

  • I dont know how many times people have come on the thyroid forum with doctors not recognising a goiter. If you are lucky ent doctor might.The training for thyroid issues is limited to a couple of hours for junior doctors these days and there have been petitions ask for them to have some training. A doctor near to retirement can be better at stuff like goiters as will have been trained properly. Bunged up is classic thyroid.

  • Oh, that's nothing - when she was talking about giving up smoking she said it was just a case of replacing it with something else, like eating cheerios... I just smiled sweetly and said my cheerios!

    Did go to the stop smoking clinic and took champix which I hadn't before cos I'd hear some mental issues but it worked amazingly and I stopped smoking for about 6 weeks... until yesterday and had 'issues' so ended up cycling 12 miles and buying some baccy. Am sure it didn't do my B12 levels much good but been stuck in my old man's house for so long I had to get out. I know, 1st world problems and all that but annoying when no-one 'believes' you. Still, at least I think I'm getting there now, and I did make some rather tasty ribs tonight - I think he's understanding a little, and am sure he could use some B12 oral spray too!

  • oh lols yeah I forgot, the other doc I saw last week said the wheat test came back ok and I said I don't eat wheat, he said am I likely to eat it in the next two weeks I said well a couple of times when I get the munchies as where I'm staying there's wheat but I gave it up years ago cos it doesn't do me any good. He said ok well we won't bother with that test then.

  • Yes definalty still push for getting your B12 jabs really important to get those.You may find that some issues do not improve as much as you would like however many jabs you take. Problems common to thyroid that overlap with B12 include poor memory and fatigue.

    It is not a case of it being thyroid and not B12 it will be both and this is very common

    People with thyroid issues do struggle with muscle mass, they tend to become less muscular, weaker and generally more soft and food they eat tends to just get stored.

    Thyroid issues can be inherited and it may also be that your mum was unwell during pregnancy and you were born with health issues as a result. I had 2 children with an untreated thyroid issue and untreated B12 issue and both boys have special needs and my youngest is not a well boy. I am sure my youngest will have not had enough B12 in the womb as I was been given nitrous oxide about weekly during the pregnancy and was not told that it wipes out B12. He used to lie quietly in his cot not bothered by anything and at the time I was really grateful because I had no energy either.

    I hope it goes well for you at the doctors.

  • Thanks mandyjane - I think I'm more worried about things getting worse but hopefully the wobbly walking and stuff is the effect of the jabs, not deterioration!

    But here's me moaning, I can't imagine giving birth... did hear my mum had 'complications' between my older sister and myself, I thought she'd had a miscarriage, asked my dad today but he wasn't sure, guess that's one reason they're not together any more lol.

    Food definitely gets stored more, my sis can eat like a horse and not put on weight, I spent years trying various diets but was only when I cut out the carbs & wheat & dairy I lost lots, guess I'll have to do that again!

    Sorry to hear your kids have been affected - when I was a naughty boy as a kid (personally I think more signs of this illness) I did community service at a home for severely mentally handicapped kids and whilst not easy I do think it's very rewarding, 'normal' people mostly take way too much for granted.

    OK, well that's changed my schedule slightly for tomorrow, was going to just mention the neck thing but I think you're right, it needs to be pushed more, have compiled some notes so far - am thankful for my long-suffering family, otherwise I'd be out on the street no doubt - annoying when I know I can achieve so much when not blighted by this stuff!

    Thanks again for caring and sharing!

  • Mandyjane...just a small calarification...you say that:

    'B12 primarily affect the brain which affects lots of other things'

    This is not quite accurate...B12 is required by every single cell in the body and B12 deficency affects every system in the body, not just the brain.

    So, whilst B12 deficency can cause neurolgical symptoms, it causes many other symptoms too...throughts the entire body...and untreated B12 defIciency (from whatever cause) is ultimately fatal if not addressed appropriately (hence the name pernicious anaemia (pernicious meaning destructive death - literally. Though of course 'anaemia' is a bit of a misnomer because not everybody with B12 deficency or PA has the large red 'macrocytic' blood cells - macrocytic anaemia - that can sometimes be present in PA).

    In this sense, B12 deficency is a total systemic condition, not just a neurological one.

    👍

  • Thanks foggy for clarification. I wasnt meaning to underestimate effects of B12 deficiency. I think there is a lot of overlap between B12 and thyroid probably then because they are both needed by all cells. I have tended to find for myself that B12 has helped with neuro stuff and thyroid with issues like weight gain and constipation. It seem I need to be treated with both together and some homeopathic stuff for fatigue.

  • Yes...there are many cross-over symptoms between B12 deficency and thyroid conditions.

    It's often very difficult to sort out what's going on when you have both. Sadly.

    I suspect that B12 might be helping with more than you think 😀

    Good luck.

    👍

  • Hi Stevepurkis. Just a thought...have you seen these guidelines from the British Committee for Standards in Haematology (now called British Standards in Haeamatology)...

    onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    More comprehensive than the NICE guidelines, more up-to-date, and show clear pathways for diagnosis of both PA and other causes of B12 deficiency (including when a diagnosis of antibody negative PA should be made)...

    Apologies if you've already seen them 😉

    Good luck

    👍

  • Hi Foggyme! Thanks - I have seen them and printed out the relevant pages but the last doc didn't really bat an eyelid at them but did at the NICE ones when he saw the logo.

    So I was gonna print out these ones but couldn't figure out how many pages it was/is so clicked the PDF icon to the left and it loads up a screen but it's just blank, it fails generating the PDF :(

    But thanks for the heads-up on the date and relevance of them, I'll have another go tomorrow as sounds like they're important too!

    And whatever you do, don't apologise, you're saving lives on a daily basis here, I've only been around a few days and it's just one after another - shocking!!!

  • Shocking indeed. But then we do get a skewed picture here as people who arrive in the forum are those who are having trouble getting treatment!

    On an optimistic day, I like to think that there are thousands out there, who we never hear from, who are getting the right treatment 😉.

    Sorry, can't help with the printing.

    And it's quite astonishing that a GP fails to recognise the most up-to-date and relevant guidelines for the treatment of cobalamin and folate deficiencies, published by the British Committee for Standards in Haematology - hmm...shows how much this GP is likely to know about B12 deficiency or PA (how's that for optimism 😇).

    👍

  • "On an optimistic day, I like to think that there are thousands out there, who we never hear from, who are getting the right treatment"

    ROFLMAO, that *is* an optimistic day - make sure you go by a lottery ticket when you that way!!

    The whole system's astonishing, but I'm glad we have it. Being a Free/Libre Open Source Software geek I get annoyed they're all sold expensive software which does the same thing over and over again and is insecure and when it gets hacked it's the hackers that get the blame cos it's the wrong word for a start, they're crackers, I'm a hacker, and it's Bill Gates who's the criminal and every time I talk about free software's not about price but freedom people just think I'm some kind of hippie and think it's substandard or insecure and all that. So I've got a long journey ahead trying to get people like the NHS to understand they could be saving millions, they're all too busy siphoning off data so people can sell them back apps. It's a mess - talk about people fighting with guns in wars for freedom and that's fine and dandy, talk about using freely available, commons based peer produced products and people think you're trying to screw them.

    That's my rant for the day, thanks for watching ;)

  • If you struggle to print off the whole BSH Cobalamin and Folate Guidelines, you might have more luck with printing off the BSH flowchart in link below.

    stichtingb12tekort.nl/weten...

  • Thanks Sleepybunny - it worked in a different browser (didn't work in Chrome, did in Safari) so I printed off the PDF but I don't think it's as clear as the NICE guidelines are, in fact when I read it I imagine the doctor saying well that's what we've done as your Intrinsic factor came back in range and you're not PA, whereas the NICE guidelines say any neuro issues then it's continuous.

    Unless I'm missing something?? I was going to take the printout for them to keep, but highlight the NICE guidelines here - you only get a few minutes in there so it needs to be clear and simple for them to grasp and get!:

    Referral

    When should I refer a person with vitamin B12 or folate deficiency anaemia?

    * Seek urgent advice from a haematologist if the person has neurological symptoms, or is pregnant.

    * Refer to a haematologist if the cause of vitamin B12 or folate deficiency is uncertain following investigations, or the suspected cause is haematological malignancy (urgently refer) or other blood disorder.

    * Refer to a gastroenterologist if:

    - Malabsorption of vitamin B12 (other than due to pernicious anaemia) or folate is suspected.

    - The person has pernicious anaemia and gastrointestinal symptoms, especially if there is a suspicion of gastric cancer (for example co-existing iron deficiency). The urgency of referral will depend on the nature of the symptoms.

    - The person is folate deficient, and antibody testing suggests coeliac disease (positive for anti-endomysial or anti-transglutaminase antibodies).

    ---8<---

    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.

  • Hi Lockett72

    I well remember "walking on air" 46 years ago after my doctor had finally got a diagnosis of P.A. for me, by which time, 13 years on from major gastric surgery at the age of 17, I was like a "walking Zombie and (like you) that was before I'd had my first B12 injection.

    Do you have any idea of the cause of your deficiencies?

  • I have lots of gastric issues I put them down to ibs and food intolerances. At least that is what I was told. Didn’t sit right as one day I could eat a certain thing the next day it crippled me. Also I was very young when I had a full hysterectomy so was left with no hormones and couldn’t have hormone replacement. Apart from that I have been a regular gym goer and physically fit. I feel like a weight has been lifted already and not started then yet. It’s just a relief in knowing you have a problem and not falling apart.

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