GP surgery decides to reduce my injection frequency

Hi everyone

I have lived in fear of this! I suffered for 10 years with stomach trouble, and 3 years before diagnosis with all the usual symptoms PA sufferers have from fatigue, breathlessness, pins and needles ,palpitations, muscle aches, hair loss and memory loss and mental fog.I had to ask for a B12 test and my level at diagnosis was 75 ! Since August 2012 I have had injections, first the loading dose , then 3 monthly , - couldn't cope so got them 2 monthly - couldn't cope so went to 6 weekly then finally monthly. For 11 months I have been doing fine and coping just beginning to feel human again and have enthusiasm and energy. Now a doctor in the surgery reviewed my medication while my own GP was away and I am informed I am to go back on 3 monthly jabs. I feel so anxious and tired and the thought of having to do battle all over again and it fills me with dread. I have been fine so why not leave the regime as it is. I am nearly 61 but very physically active and also care for elderly relatives . I will not cope on a reduced level.

Help help please.


51 Replies

  • Hi Gilllsie

    I have travelled an almost identical path. I was first diagnosed with PA at 42, I am now 61 and have been giving myself injections 6 weekly for years but recently my GP said my count was high and I needed to have them two monthly. My count has always been high, the specialist was not concerned about the count at all. I, like you know when I need an injection. I liken it to feeling like a motor vehicle thats run out of gas. I am lucky enough to be able to administer the injection myself whenever I need to. I keep a record and it averages 4-6 weekly. I have tried going two monthly but I'm like a zombie and barely function, so have gone back to what works for me. Gillsie with PA you know your body better than anyone. I wish you well for being able to have your shots when you know your body requires it.



  • Hi jan

    how did you persuade them to let you self inject or do you go private.

    ii may have to find out about this but I worry about security of supply.

    thank you for listening. It is comforting to know you are not alone.


  • I have always been able to get a supply of methylcobalamin ( 5 mg /ml ) without prescription from email this company

    Syringes can be bought online in UK I suck up the liquid with a 23 gauge needle and swAp to a 30 gauge needle to inject either iM or subcutaneous .if you only need one injection a month it will all in cost aprox 50 pounds per year but then your own boss .the Methylcobalamin comes in ampules and ten ampules make up one box

  • Thanks the more info and alternatives the better

  • Hi Jaybo

    I had a look at the German company's website last week, but they don't seem to have an online payment facility. Am I missing something?

    Why do you use one size needle to empty the ampoule and another to inject? How do you transfer from one syringe to another? Sorry about all these questions, but there are several practical steps in this process that I can't find online. It's a bit scary to start self-injecting without medical support, but I'm having to go down this route too.

  • One emails them with your credit card details and billing and delivery address and what you want.

    They do methylcobalamin 1 and 5 mg per ml and same for adenocobalamin .The delivery charge for 10 boxes is 15 euros I order a lot !( I inject 5 times a day -I have a different use for b12 in that I have an inoperable intramural spinal tumour and I use b12 to carry nerve signals etc and regeneration and to protect my axons besides just needing b 12 plus I order for people in my area ! They are completely legitamate .a lady their called Katharina writes great English her email is

    I like German products because of sterility and they don't cut corners .

    Re needles it's hard to suck up the liquid with a 30 gauge needle . one other thing if you do get the ampules remember immediately before breaking ampule flick the top of the ampule to drop the fluid down

  • I forgot to add that the best way to learn to jab is do you know a diabetic who injects themselves if so ask them to show you its same principal except b 12 not insulin !!! Always remember sterility sterility sterility with needles ie they don't touch anything apart from the injection site and NO reusing needles or syringes !!!

  • Thanks for all that info, Jaybo. I know the firm is highly recommended, but but I don't have a secure email service so I can't send them my card details that way. Thanks for the email address though - it's preferable to address queries to a specific person.

    I have extensive neuro problems, some of them very longstanding, so I want to try the methyl via subcut injection. I don't know a type 1 diabetic, so I'll just have to work it out. I'm sorry to hear you have a spinal tumour. I take it the methyl makes a significant difference to nerve conduction?

  • I will ask them for a phone number for you ? Re nerve conduction yes methyl does . I have being doing intravenous Vit c in mega dose.lipouc acid msgnesium chloride thiamine etc I use to do IV ultra high does of methyl for 5 yrs now . They all help nerves etc ESP thiamine . Magnesium helps nerve velocity - I learnt a lot from my dear friend Dr Riar .( he would not mind his name being mentioned )

  • A phone number might be best. That's a very kind offer, thank you! Perhaps you could PM me when you have it?

    I'm interested in your supplement regime. I know of one doctor who can show patients how to manage an IV Vit C regime if she thinks the situation warrants it, but she got into trouble for saying so online and had to retract her comments. Medics are all about turf wars, aren't they? Never mind the patients...

  • Ok will email them for phone number thanks re Vit c I was lucky I got taught well and do my own iv s I have a hickmanline ) and am going to write a book about what Dr Riar achieved and what we did together over a 5 yr period I have had over 750 IV s !!!

  • Sorry about the delay I got their phone number "We have a telephone number for taking orders or answering any questions: 0049 89 425 468 468

  • Thanks for that Jaybo. I got a good A-level in German, but that was about a hundred years ago. Luckily, many Germans speak excellent English!

  • If you have any problems let me know also you mentioned a Dr re Vit c can you give me their name as I always get asked for this information for people wanting Ivs

  • Hi Jaybo, I'll PM you.

  • I've tried to PM you, but the system isn't working for some reason. It won't recognise you as a recipient!

    I don't really want to mention the name of the doctor on the forum, as she might not thank me for it, having had several run-ins with the GMC (although she won each one). I'm not sure that she has ever used IV as a routine therapy, just when individual circumstances warrant it. However, I do know she isn't taking on new patients at the moment because of a heavy workload. I suggest having a look at the practitioner list on

    Hope that helps.

  • I know who it is from the info provided


    Hope you sort your own jabs out ok .

  • Hi Jaybo - I self inject. I draw up on a 20gauge needle, remove airbubbles, then with the sheath or cover over the needle remove the 20 gauge and replace with 25gauge 1" needle. If you remove the air bubbles on one needle and replace it with a fresh needle (usually a finer needle) before administering it is less likely to sting.

  • That makes things clearer for those of us who are working up to self-treatment. I'll be using a shorter needle for subcut injection - the idea of using a 1" needle for IM on myself doesn't appeal!

  • Yes that's kinda what I do except I use a half inch 30 gauge needle as its thinner for subcutaneous ( I wouldn't use a 30 gauge for IM for those I would use a one and 1/4 inch I am thin 23 gauge .IM I used to use for magnesium

  • Google have a very good site for instructions on giving Intra muscular injections. It's a God send being able to administer the injections yourself.

  • Thanks for that info, Jaybo! I can't get methylcobalamin ampules in Israel. Good to know where to buy them.

    You're spot on about self-injecting. I STRONGLY advise anyone here whose supply has been arbitrarily cut by their GP to simply go online and order the shots themselves! There are plenty of good YouTube tutorials available to help guide you in the beginning. After a week or so you'll be able to do it with one hand tied behind your back and blindfolded ;)

    If methylcobalamin gets too pricey, cyanocobalamin works just fine too. Speaking from experience...

  • Hi Gillsie - Some GP surgeries dont like people self injecting but I think its more that they miss out on the dollar. I was fortunate enough to work at a hospital who provided me with syringes and needles. One of the Drs also taught me how to draw up usually on a 20gauge needle, release any air bubbles, then transfer to a 25gauge 1" needle to inject. (b12 injections are intramuscular hence the 1" needle ) I give it to myself in the upper outer area of my thigh. I've been doing it over 10 years now and wouldnt have it any other way. I usually get 6 ampoules at a time on script and store them in the fridge. I no longer work at the hospital after having major surgery for cancer 12 months ago, my husband insisted I retire. GP said he can provided needles and syringes when I need them.

    At the moment GP thinks my count is too high, but I shall put up a fight to keep having them 6-8 weekly as I know it works well for me.

    Interesting my GP also admitted he didnt know much about auto immune diseases. I have learnt so much from functional practitioners like Amy Myers etc. Very encouraging.

    I have learnt to be proactive in looking after my health. I wish you well and hope you can find a Doctor who will support you self injecting, its a Gods send to be able to give it when you need it. Regards Jan

  • Thanks for this. It is good that your GP facilitates you with a prescription to obtain your drugs. Hope you stay well.

  • Hi Gillsie,

    I am terribly sorry to read your post and it will help you in to learn to self inject, its the only way to get what you need, with out ever having some other interfere with what you know works for you and keeps you well.

    Gambit uses a nasal spray that helps her, it is a matter of trying what may help you perhaps, but learning to self inject is the best way forward,

    Kind regards,


  • Hi marre

    I am so worried and hardly slept last night. It is like mental cruelty to mess about with your injection routine. If you self inject do you go to a private doctor for the prescription ordo you go abroad or risk the net which I know many do not recommend. I will have to do something.

    at the outset when I had a battle with the gp I also wrote to my MP and health secretary. I got a standard blurb back and he was no help at all.

    even if there is a protocol all be it outdated gps should still treat patients as individuals.

    I just feel exhauted and depressed but then my gp will bang on about antidepressants rather than give me the b12 I need.


  • Gillsie - really sorry to hear about what has happened.

    Have you talked at all to your normal GP? may be they would feel comfortable changing back, though strictly speaking all the advice to GPs (eg NICE) seems to say that hydroxocobalamin is only licenced to be administered once every two months - difficult to see why as the instructions that come with the phials that are used at my surgery state monthly as the normal regime ... but its in german so probably doesn't count.

    There is an EU regulation that allows you to import medications that are needed for your health but which you are unable to get in your home country. There are a number of reputable suppliers in Germany that you can order on-line from and the service is very good. I think most of the worlds hydroxocobalamin is probably manufactured in Germany. In germany B12 is available over the counter - in the UK it is caught up in some legislation that means, because the phials are an injectible form - they can only be issued on a prescription.

    There are also other ways of taking B12 though there hasn't been that much research on which was work and even if there were the chances are that, like everything with B12, individuals vary so much that it really wouldn't be useful to generalise (though medics don't seem to be capable of realising that). Forms to try include sublingual tablets and sprays - the nasal sprays that suit me, and skin patches - just something that uses another membrane to get the B12 into your body. All are available without prescription because the format isn't injectible.

    You can also buy dry methylcobalamin, but because of the injectible= prescription only rules you have to buy the saline from outside the UK!

    As Marre says I use a nasal spray that seems to work for me - but even so I'll occasionally top up with an injection if things are really stressful for me, or I have a heavy cold. I need to use about 3 times the dosage on the spray but I just seem to need an awful lot of B12 to keep me functioning properly.

    You can do injections either intra-muscular (which you really need to be shown) or sub-cutaneously - which is what I do - just need insulin needles (possibly some guidance on getting into the phials) and there are plenty of you-tube clips on how to inject subcutaneously - either in the stomach or in the top of the thigh (I prefer top of thigh). For intramuscular you need a much longer needle and generally two are used - a thicker one to get the B12 into the syringe and a thinner one for the injection ... I did notice a clip on you-tube on doing an intra-muscular injection but haven't looked at it and all the swapping of needles just seems to me to be too much pfaff ... though I think that the loss rate (ie how quickly your body loses B12 through urine) is probably better with the intramuscular.

    Really feel for you - but sure that you will find a solution that works for you.

  • Hi Gillsie,

    There are many that have been in your shoes, and its not a nice time. I asked my GP to learn to self inject, mentioned the savings for NHS, convenience for me (no appointments, sitting and waiting for what is just an injections etc), it still took some time to convince him, agreement ended with OK but I can not be responsible for what you do at home and come in yearly for blood tests so we know you are compliant. Most of the nurses were very supportive.

    That is the first, and best, route to try.

    I buy my B12 abroad (Spain) as I know what I am buying and it's what my father got prescribed, its easy for me as I have family living in Spain and go regularly.

    Many buy at safe sites on the internet, here you will find a list what many others use safely see the old PAS forum for loads of info:




    It may well help you to read more on the old PAS forum, self medicating is unfortunately the only way for a lot of people to get what they need, its sad, it should not be like that, but it is what it is; and if you want to stay well then self medicating is most probably the only way.

    Still try your GP first, you never know, some have had very co-operative GPs!

    I hope this helps you to see there is a way, and it is not as difficult as it may seem to you now, I used to faint when I saw a needle, now self injecting is like brushing my teeth, over and done with in no time.

    Kind regards,


  • Hi

    You poor thing.I also have had a battle with my gp because mine ran out after 8 was and I just could not cope.He would not let me have them 8 wkly so for four was have been using an oral spray which really worked for me.Ihave just had my 12wkly jab and feel great at the moment.I will see how long this lasts and if necessary top up with the spray until my next injection is due.

    Good luck

  • I've said before that it's not just the physical aspects of this illness which are the problem - it's the emotional trauma patients suffer when they are disbelieved as to how the illness affects them.

    The complete lack of support, dismissive attitude, lack of understanding, patronisation, and general ignorance (and I can't think of a word with enough impact!) of the people surrounding us, who are dismissive.

    Humanity is lacking.

    It's all founded in ignorance, badly practiced medicine and the lack of observational skills.

    What most patients want, like other patients, is to get their illness acknowledged. They don't want to be treated like lazy, whiny fools - yet no matter what their past history - no matter how fit, hard working, driven or dedicated they have been - it all counts for nothing and they are lumped together as hysterical hypochondriacs.

    As an aside - I mentioned a few years ago that I noticed on the boards that the people who were hardest hit by this illness seemed to be people who were fitter than most - it was purely an observation.

    Since that time I have seen in two neurological illnesses - Motor neurone and Parkinson's - that there is higher proportions of 'ex' fit people likely to contract them. Quite a bit of work has been done on this with motor neurone - I think with Australian footballers - who are seven times more likely to contract MN.

    Hmm, I find this correlation between fitness and neurological illnesses interesting.

    Anyway, know that you are not alone in being treated like dirt by a bunch of smug lard a....

  • Hi

    thank you for replying and your support. I will try a letter to the gp but suspect it will get no where. Must try but I know I cannot face going back tohow ill I felt before.

  • Trouble is, you need more than support. You need practical help - and we can't provide that. And the people that should be providing it, who have a duty to provide it, are failing consistently to help people who are ill.

    It's a disgrace.

    I would love to be in a postition where I could get one of them, just one, in a face to face confrontation in a public arena and outside the comfort zone of their consulting room.


    I would love to see them demonstrate their knowledge in respect of b12 or lack of it, where we would be on an equal footing.

  • I'm so sorry Gillsie, especially as you need all your strength with elderly parents to care for. I would certainly go back to see your usual GP and say this. My experience was that, when I told the GP how B12 symptoms affected the whole family, this tipped her into agreeing to trial injections.

    Meanwhile, this was posted by Rod on the thyroid UK site a while ago. He refers to drug switching but, I would think this also applies to reducing medication for no reason. Your surgery has not consulted you or considered your best interests in reducing your medication when you are obviously doing well on monthly injections:

    "BMA GPC - General Practitioners Committee - Prescribing in General Practice

    I was looking for some information about the legal and ethical duties of everyone involved in prescription medicines and found this document:


    GPC - General Practitioners Committee

    Prescribing in General Practice. May 2013

    Or, in short form:

    It refers to many of the issues that have arisen here on HU/TUK.

    Drug switching would appear to include changing a patient from T3 to T4. Which can ONLY be done in the patient's best interests. So how come we have seen so many stories of patients being denied T3 and effectively forcibly switched when it has been purely a funding issue?

    Drug switching

    The GPC is aware that in some areas practices are being encouraged by their PCO to switch patients from one drug to a less expensive drug. The prescriber must assess each patient individually when taking the decision to change a patient’s medication. Any changes must be made in the patient’s best interests and must be fully explained to the patient.

    We have also seen quite a number of cases where an endo has prescribed something (T3 or even desiccated thyroid) but the GP has refused to prescribe it. Clearly it is the duty of the GP to refer back to the specialist. And absolutely NOT to point blank refuse the patient without doing so.

    Non-GP prescribing

    When a non-GP prescriber initiates a new drug they accept responsibility for that prescription, but they usually have no method of reissuing repeats and that responsibility invariably falls on GPs. When faced with a request from the patient for a repeat prescription, GPs should review the patient and set up a repeat prescription if appropriate or refer the patient back to initial prescriber.

    Good working practice would advise that anything prescribed for long term prescription should be notified to those likely to continue the medication (i.e. the GP). The responsibility for checking interactions remains with the prescriber who should take a full drug history if they do not have access to the main clinical record.

    And this old chestnut. In the example they even mention thyroxine specifically as being suitable for 6 month prescribing!

    • Is there a standard prescription interval?

    Doctors provide prescriptions for intervals that they feel are clinically appropriate, taking into account such factors as possible reactions, a possible need for a change in prescription and consequent waste of NHS resources, patient compliance, and any necessary monitoring. Sometimes a doctor may give six or even twelve months supply on one prescription (for example the contraceptive pill, or thyroxine with a regular review in surgery once the patient is safely stabilised). This is cost-effective and patients often prefer it. A recent report on prescribing durations recognise that blanket instructions to only give 28 days supply are associated with significant increases in dispensing and other transaction costs, together with reductions in compliance in previously stable patients, and an increase in dissatisfaction amongst patients because of travel costs and time to obtain regular medicines. It can also place significant and unnecessary workload on the doctor and surgery staff.

    I do wonder how many GPs have even read this document? Or followed the links from it.

    Rod "

  • That information could come in very handy, Polaris. Thanks.

    The problem is that ultimately there is no agency to which anyone can go to and get these issues considered in a fair and reasonable manner. The buck is resolutely passed down the chain of sociopathic imbeciles employed by the NHS and usually kicks off with the 'pratice manager.' We start with the lowest of the low and from thereonin it goes downhill!

    If there is no one to enforce these regulations and guidelines effectively apart from courts, what the hell are patients supposed to do?

    Rely on doctors training and their code of professional ethics.....falls about laughing.

  • I agree frustrating. They could though be jogged into a fear of under dosing, therefore, causing harm and being sued, I say this since hearing from a friend's GP daughter that the reason they are so reluctant to prescribe B12 injections is that they fear overdosing and being sued!? Being sued seems to be their main preoccupation - never mind actually causing the patient harm and to suffer unnecessarily.

  • I've said this before Polaris - if they understood what damage b12 deficiency does, they would be a lot more afraid of under dosing than overdosing.

    I've had it said to me by an expert (in fact I've got it in writing) The risks of not giving enough b12 far outweigh the risks of not giving enough.

    The huge problem here is understanding the illness and also understanding how most things connected with the illness ie test levels, testing methods, doseage etc, are also wrong because they were based on the assumptions of what the scientists believed was correct.

    It's wrong from start to finish - and trying to explain it to anyone is a nightmare never mind trying to get doctors to believe it!

    What really gets my goat is that if you look at the film shot in the 1920s of the b12 deficient patients, you can clearly see how the neuro damage progresses and how patients today are affected - but how those same patients are told they are a bit crazy!

    This is neuro damage and patients are being sent home and managing it themselves.

    It's not acceptable at any level.

  • You can't explain it to them.

    I've now developed personal issues with nurses on this subject.

    Nurses are not doctors and they need to come to terms with that fact. Nurses are carers. When it comes to medicine they are not trained in diagnostics, they are trained in how to care for patients and take orders from the medically trained.

    A good nurse however should be highly skilled in observation. They should notice issues and problems - which leads me to wonder why there are nearly 150,000 nurses in the UK, many of which give b12 injections, and none of whom seem to have noticed that patients on 3 monthly maintenance jabs have symptoms reocurring long before their jab is due.

    So, from where I'm standing they aren't doing that bit of their job right either.

    It's rare there is any point in talking to a nurse about b12 deficiency - because they have been trained to give injections every 3 months - and that is exactly what they do because they have been told this is what works.

    Shame they aren't noticing en masse that it doesn't - because I happen to think that IS part of their job.

    The other bit I have trouble coming to terms with is that in gaining such advances in technical medicine, doctors appear to have decided observational medicine is no longer required in their particular field.

    They haven't really any need to actually see patients - just get everyone to queue up for a blood test. If the tests they happen to do don't throw back any positive results then, obviously, the patient is not ill.

    No matter what the patient says or their physicial condition.

    Their reliance on mechanical medicine is somewhat touching but very stupid. Because they decided decades ago that they no longer needed to listen to patients, then they have made a pig's ear of treating most neurological illnesses for the last...70 years or so.

    I've seen it in the CME section of the BMJ article. You get doctors coming on who still don't 'get it.' You get others who are starting to 'get it' but still can't quite believe it. Then you get the few that actually make the brilliant leap that most patients are being undertreated (like the one that I saw that said, "we are undertreating neurological damage."

    And you can smell the fear.

  • Spot on - observations skills are paramount, as well as symptoms and taking a full history.

    My relative - vegetarian - almost vegan, drastically deteriorated after dental injections. There followed a complete change of character - psychosis, loss of memory, unable to walk or lead a normal life, confined to a wheelchair and diagnosed with ME and dementia, even though a scan ruled out Alzheimer's.

    After a few months of regular B12 injections, she is now enjoying a normal life and walking for up to two hours a day! Memory still not back and maybe never will be, thanks to incompetent medical practice, but quality of life is now much improved.

    In hindsight, the problem was that, in 30 years, no history was ever taken and there was a complete reliance on flawed tests and diagnosis of ME (nothing can be done so go away - it's all in your mind).

  • I'm very pleased to hear she did improve!

    But look at the diagnosis - ME - but it is a diagnosis even if they don't do anything. And there is no test for ME!!!

    Back in the 1980s when it was Yuppie Flu, everyone was told then it was in their mind. Then when 'they' finally got it recognised as an illness it is acknowledged.

    Yet B12 deficiency and neuro damage isn't - heck, half the people on here go to doctors with neuro symptoms and the doctors tell them they haven't - They don't even know what symptoms are neurological.

    One of the sadder stories I ever read - although she did delete it - was of a girl who'd had a terrible time living with a violent, alcoholic mum with 'mood' swings. The mum died and the girl, in her teens was left alone. She was diagnosed with mood disorders. She then got a flat - a home of her own but couldn't understand why her moods were getting worse. Then one day she got an urge to throw herself out of the window - she knew it wasn't rational and that there was no reason for it - but she couldn't stop it.

    In the end she stabbed herself in the leg to stop herself from doing it!

    She then called the emergency services, they came and sectioned her.

    At the hospital they tested her b12 and it was through the floor. They gave her a few injections and she couldn't believe the difference - then they stopped it because her levels were in the 'normal' range.

    She ended up self medicating.

    Now we know that most of us on here suffer the physical effects of b12 deficiency but that's an example of the extreme effects on psychological matters.

    ... and nobody is doing a thing!

    That girl found out what was wrong with her and told them what put it right - and they still ignored her.

  • Such a terrible and sad story Poppet.....

    Good point about ME diagnosis not dependent upon a test. Finding the cause of ME in the eighties defied some of the best brains. The following is a really interesting article called 'Battle Fatigue' I read back then, which mentions research by Prof. Malcolm Hooper :

    Extract: "He outlined for me just a few of the physiological changes in the bodies of CFS patients. For instance, some CFS patients - it is always "some", which is a large part of the problem - have been found to have lowered levels of sulphate. This makes sense of a problem that many CFS sufferers share: being unable to tolerate normal levels of certain drugs or foods. The link is that drugs and foods have to be broken down in the body, and sulphate plays a vital part in this process, especially for handling a class of chemicals called phenolics. Three substances that "some" CFS patients become abnormally sensitive to are: paracetamol, citrus fruits and the adrenalin that comes with an anaesthetic injection at the dentists - all three are phenolics."

    I am now struck by the last sentence about abnormal sensitivity to, amongst two other substances, the adrenalin that comes with an anaesthetic injection at the dentists - all three are phenolics." ! Eureka moment?

  • Yup. Except my attention was, at first, caught by the mention of paracetamol. Says she, who reported to her GP that it 'sent her daft and made her throw up!'

  • Another extract:

    " A growing body of scientific literature clearly shows that there are profound disturbances of, and damage to, the neuro-endocrine-immune systems of these patients. All that evidence was just being ignored."


  • ... and don't forget the NICE guidelines which state that once a patient has a diagnosis of ME they shouldn't be tested for b12 deficiency!

  • Oh no....I hadn't known of that one. I say again, sinister or what !

  • gillsie, I feel for you and I am expecting the same thing may happen to me next week. I have had 8 weekly injections at Doctors for several years, started at my last practice in Dorset and then continued when I moved here 3 years ago. Not had B12 tested for years and no other bloods for 2.1/2 years., but having felt ropey for several weeks practice nurse did bloods and my b12 jab this week. B12 has come back at 2000 and MCV and MCG low. Have to speak on phone with a Doc on Monday, I am keeping fingers crossed, but fearing the worst. I have made up my mind to self inject if necessary. A lot of people from PA Society Facebook Group are self treating and have established reputable sources for everything necessary, so I have no worries on that score, but I am a complete wuss, so will need to get over that.

  • Low MCV could mean you are now iron def, that would mae you feel unwell, hope for you Monday's call is about5 getting your iron up, not B12 down!

  • Thanks Marre, that is the outcome that I need, but we will see what transpires. I have never met this Doc, only ever seen 1 other at the practice and for non-B12 related things. I know that the Society advocates it, but can I just emphasise to people to make sure that they get a printed copy or view on-line their test results. In May 2012 when last tests done I was totally diverted by the life threatening illness of a younger member of my family, and didn't ask for them, having signed up yesterday to on-line records I now see that MCV was very low, but just into the normal range, this of course, was not pointed out "normal" was all that they were interested in, not the numbers, I have a history of iron def, but was new to the practice and not seeing anyone regularly. If I had realised I could have kept an eye on things. Apologies for hi-jacking your thread gillsie, but is relevant I hope.

  • Yes it is relevant as I often get low serrum ferritin. Good luck.

  • Sorry Gillsie. I think I've put my reply to you in the wrong place and gone off subject. I hope you are able to get your monthly injections reinstated or replace them in some of the ways mentioned by others here. Very best wishes for a good result.

  • Hi Gillsie, everyone, Hope you got injections sorted out somehow. I'm in a similar situation at the moment as I have experienced lots of nerve pain throughout my body. Got my doctor to agree to injections every week for the time being to see how I go. I have significant improvement. I was worried in case I had damaged my hearing, still have concerns and going to see an ent specialist. I am trying to sum up the courage to do my own jabs soon so that I will have control over my own life. I saw a different new doctor in my surgery recently who agrees I need further assessment. See how that goes. However, they are threatening to make me have the jabs every three months a regime I cannot survive on and will severely damage me. Despite my saying that I got neuro damage despite my B12 levels. Have learnt a lot from the society and the books on p.a. over the last two years only. Wish I knew what I now know years ago.

    It is a great shame that people with p.a. get treated in such an appalling way. When you consider the great work that the scientists Murphy and Minot did to save people from this dreadful disease nearly a century ago. Yet the significance of p.a. symptoms is largely ignored by the medical profession today. Luckily I can access my own B12 here in Australia without a script but realize if ever I return to the UK to live I will have to do my own jabs. Everyone has the right to be healthy and well and we are all doing are best to do that. A pity that the medical profession can't see that. I wonder if they ever will? Barbara

  • I had a very sensible GP who would write out a prescription for several months supply and let me make my own arrangements with a fully trained nurse. This meant I was getting the B12 jabs regularly on the dot every month. My GP also said that he was up to the maximum allowed by the rules but that taking additional supplements of B12 (along with B6 and Folic acid) would not do any harm and would also be very beneficial. But then he retired and the new head of the practice puts ticking boxes ahead of actually delivering real care. (Probably something to do with CQC where ticking boxes on forms takes precedence over reality).

    So now I am down to 3 monthly (ish) with 2-3 week overruns trying to get an appointment with the practice nurse. So add a 3 week overrun then the next jab must be at least a full three months after the last, add the next overrun etc etc. I am now down to little over 3 jabs a year. Needless to say numbness in feet is returning.

    So I will be looking to follow my previous GP's advice and taking yet more supplements to the NHS regime.

    Why are sensible doctors with powers of observation and logic being replaced by those who simply tick boxes on magic forms on computer screens?

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