Banging my head against the wall

So my GP was going to check with the haematologist about giving my B12 shots every 8 weeks rather than every 12. Apparently the haematologist said " it's very common for people on B12 shots to experience a return of symptoms before the next shot is due" but that in its self is not sufficient to increase the frequency of shots!!!!!! I would like to be able to say " this is the craziest statement I have ever heard from a medical professional" unfortunately it's not, I've heard much worse. So I asked her if she felt it acceptable to lose 5 weeks out of every 12 to debilitating fatigue, I know I'm not the only one who feels like They are banging there head against a brick wall, do you think if we all marched on Downing Street and banged our heads against the wall they would listen to us? Or would we all be commited? ................ 

68 Replies

oldestnewest
  • Look what the Icelanders have achieved by banging pots and pans outside their parliament! I would  join you at Downing Street,but somehow I double if we could get very close. So many of us have horror stories to tell about misdiagnosis and treatment. Think how many people who have P.A don't have access to a computer or even know that there is a Pernicious Anaemia Society! I eventually gave up on my G.P and now I self inject. It's marvellous. I inject when I feel I need it. Perhaps you will have to do the same?

  • I am so fed up with feeling wretched.... My next shot is not due till the 25th and they won't give it to you a day early. I have been using sublinguals twice daily for last two weeks. Daughter is a midwife will get her to show me how to inject. I used to inject insulin but I know that goes into fat rather than muscle. Presumably it's the same but deeper? 

  • When you go for your next jab ask the nurse to show you how to inject in your thigh muscle. Tell her you're thinking of doing your 12 weekly jabs yourself to save you the hassle of traveling to the clinic, and saving the NHS some money.

    If you need more advice just ask in here.

  • Hi wedgewood 

    I would join you on your march but somehow I think it will sadly need a P.A. sufferer in No. 10 with an obstinate GP before we would see any action being taken.

    Having  "lived" with P.A. for 39 years in total ignorance of what it's all about and never being asked by any succeeding doctor "how are you coping with the injections" on any subsequent visit to one after the original diagnosis, I determined to find out more by joining the PAS six years ago and with their helpful advice eventually won a "concession" from my then "one size fits all" GP to vary the interval between injections "when I feel the need".

    However, I "feel the need" for this reluctant "concession" to be firmed up in my records to read a "definite" reduced timescale so I'm not quite ready to give up on my new GP yet (who at the moment is only "willing to discuss the subject" when current issues I have with diabetes and low vitamin D have been resolved) as I feel that if I am successful in making her "see the light" I will be helping the next patient who presents the same set of P.A. "between injections" symptoms.  

    To this end I have recently bought both books - "Could it be B12?" and "What you need to know about Pernicious Anaemia & Vitamin B12 deficiency" which, when I've finished reading may well "donate" to the surgery's library.

    I wish you well for the future,

    Clive (still alive) at nearly 75.

  • It's good to hear that you have had some success.All the doctors at my surgery present a united face where P.A. Is concerned.That's why I have had to resort to self-injection. But without the P.A.S. I really don't know what my life would be like. Very unpleasant I believe. I have also read all the books,which are really marvellous. I believe that one day Martyn Hooper will be honoured for what he has done,and still does for us.Thanks for your input. It helps to make this site such a wonderful one.All the very best to you.

  • Anyone in no.10 Downing Street with P.A would not be going to a NHS GP.They would have private healthcare,and get all the treatment they needed. When I went privately to Nuffield hospital( doc £90 blood test £70) the doc said he would give me a b12 injection whenever I needed it. But I was so worried about the cost that I couldn't take him up on it, so I self inject.  

  • Hello Clive, you are so right not to give up on your G P it is all very frustrating but it is the only way forward at the end of the day. I have just seen a haematologist today and he has agreed to weekly injections for 6 weeks and then a further blood test to see if my level have gone up. I am currently on monthly injections but still have neurological symptoms and my levels are 750 which is in the normal range but very low for someone on monthly injections.

    To be honest I have already decidedto self inject I have my ampoules already but waited until after the blood tests.

    PS. I am also still alive at 71.

    Best wishes.

  • Clive you are an inspiration, I can't imagine how hard it must have been getting a diagnosis 39 years ago. That's almost the medical dark ages!!! Well done to you. . .

  • Pixielula 

    It is now nearly 45 years ago since I was diagnosed with P.A , following two "Schillings Tests" and innumerable other blood tests and I was "threatened" with having to eat raw liver three times a day (whether before or after meals I cannot now remember) or alternatively an injection of b12 (cyanocobalamin) every four weeks for the rest of my life.  I chose the latter.

  • Is it something that gets progressively worse? ie the amount of time between shots shortens or symptoms get worse. I have only been having the three monthly shots for a year. First couple were fine but then by week 8-9 I started feeling bad this one it was week 7 I'm not sure if this is because I noticed them earlier as I was looking for the symptoms or because they are actually coming back sooner? 

  • Hi Pixielula ,

    I can only "speak" from my own personal experience as we human beings are all different.

    As I've said above I have "lived" with P.A. for (now 45) years with most of which in total ignorance of what it's all about and never being asked by any succeeding doctor "how are you coping with the injections"  and it's now too long ago to remember how long it took for my "Zonbie" symptoms to go away - that's if I was even aware at the time what was going on.

    I'd had two thirds of my stomach removed due to a perforated peptic ulcer in 1959 when I was 17 years old and this is what eventually led and contributed toward my P.A. diagnosis 13 years later. 

    I seem to remember I also had to have iron injections at the start and through the early years I kept becoming iron deficient until I was sent to a haematologist who said I should be on permanent iron supplements - as I still am today - Ferrous Fumarate 210mg.

    After things had "settled down"I guess I started to "feel the need" for an earlier injection about 25 years ago shortly before my wife died and as I was (and still am) on my four weekly Cytamen (cyanocobalamin) injections I began to slip in the odd three week appointment at reception for my next one.

    Remember, I had and knew no-one else to "compare notes with".  This was OK until I made the mistake six years ago of saying to the nurse "see you in three weeks". 

    Oops! She looked at her screen and saw the instruction "....every four weeks" and said she would be unable to give me my next injection in three weeks and reported me to my doctor who "summoned me in to see him".

    Sadly he was a "one size fits all" guy and said I must "do what it says on the tin" and that's why and when I joined the PAS.

    It took a couple of years before I managed to "persuade" my GP (I towered over him at six feet four inches tall and then weighed thirteen and a half stone) using all the arguments and advice I'd gleaned from the PAS to allow me to have the occasional early injection "when I feel the need" - he reluctantly agreed and my prescription now reads "... use as directed".

    So to answer your question - No! It is not uncommon to "feel the need" in the run up to your next injection which is probably why you will read of many in this community who supplement.  We each need to find our own "comfort zone" and no two people are the same.

    I guess I've been blessed in that I've mainly been able to keep my P.A. under control for all these years and I hope you too will be as fortunate.

  • Thank you Clive........ And I'm very glad your still alive at nearly seventy five

  • Hi, I'm in the same boat, I was told I needed injections in August last year, had the loading dose and felt so much better but like you after 9 months I'm so desperate by the time I have the next one it's untrue, I made an appointment with the nurse, it happened to be 5 days earlier than it should be, receptionist called me back and said I wasn't aloud to do it!!! Unbelievable, told her I was going on holiday the next day so she left it how it was! I thought it was me being paranoid about my symptoms but clearly I'm not, this site is an eye opener and I'm sure il be joining many more of you by obtaining my own medication before too long.

  • I use a high dose methylcobalamine sunbilgual for in between times it is a crazy situation.... The subs do seem to work ok I always know if I have forgotten them as the following day I have a "crash" day not ideal but better than nothing. I've got my jab on Monday and even my husband is excited for me ...... :-(

  • Thanks for the advice, where to you get them from ?

  • Amazon.... Some people use nasal spray I prefer the sublinguals  

  • Thank you, hope you get some success soon too 😃

  • Bearing in mind that there are 4500 followers on here, if the majority of them have some form of b12d then that is a huge number already that have it, and as you say what about the ones who have no pc access or knowledge of the damage b12d can and does do.

  • Ok so maybe we take pots and pans to Downing Street, those of us who still have enough energy that is!!!!

  • Yes let's do it. We could self inject when we get there if this is legal to do in public. Or just carry banners saying I self inject as my doctor refuses to treat my symptoms. Or doctors ignore current guidelines for B12 symptoms. Etc etc. I'm in. 

  • It would be interesting to know how many sufferers Martyn Hooper of the PAS thinks there are.

  • Let's arrange a March to downing Street to help all the people that can't get help from this site and let them know that they are not alone. 

  • do please sign the two petitions..... especially the one to Jeremy Hunt about frequency of injections.  Its just no right that so many of us have to beg....

  • I have signed the b12 one already......... 

  • Are most of you fellow b12 ers working? Cause today I really don't know how I got through it. When I finished Work I wanted to sit in my car and weep at the thought of my 15 min drive home. Had I allowed myself to weep I would still be sat in my car outside work too exhausted to do anything else!!!

  • Awful to feel so exhausted and have to hold down a job. If you like  I will send you the necessary  I.e. Hydroxocobalamin, syringes,needles,swabs. Message me privately with your address if you would like that.

  • Thank you for the offer it is so very kind of you, I'm not sure I'm quite at that point yet, but I'm not sure how long I can carry on like this either, "rock and a hard place really" my doctor seems ok but not willing to step outside any guidelines, I will have a conversation with her to tell her I'm thinking of self injecting, see what she says. 

  • That's fine,but if you change your mind,let me know. Best wishes.

  • Have you tried Sublingual B12 spray. You can get it from holland and barrett for about £12. Use daily, just 2 squirts inside each cheek and keep it there for as long as possible. It tastes alright as well. Something to try while you are thinking about self injecting and nowhere near as scary.

  • No not tried the spray, is it normal to feel progressively worse I have only been having the 12 weekly jabs for a year but each one I have, I seem to feel worse and be more desperate to have it

  • I empathise Pixie. I have wept before when exhausted and unsure of whether I am capable of work.

  • Hi there,

    I do work but am a TA at a school and I know if it wasn't for the 6weekly half term, fortnightly Easter & Christmas and long summer breaks I would not be able to cope. Anyone who can manage a full time job with only the normal amount of annual leave, and live with PA as well has my undying (and very exhausted) admiration! 

  • what CAN we do to bring this to a wider net.............  let alone GP's

  • I have no idea...... Before finding this site, two three months ago, l had never even asked for my blood results before. My only plan is to match on Downing Street banging my head or as wedge wood suggested some pots!!.......

  • I plan to March on downing Street for justice for my son. Will go on my own if I have to but I think lots of people would want to do this. When I say 'March' I mean stagger as my balance and dizziness is really bad at the moment.

  • Hi,

    Sorry to hear about the difficulty you are having in getting the treatment you need.

    PAS

    Are you a member of the PAS? They can sometimes intervene on behalf of members and hopefully could at least point you to useful information.

    Lifetime membership costs £20.

    pernicious-anaemia-society....

     01656 769 717

    Martyn Hooper is the chair of the PAS and has written several books about PA and B12 deficiency.

    martynhooper.com/

    Documents etc

    Have your haemo and Gp read the following?

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226 See Summary Points

    Google "BCSH Cobalamin and Folate Guidelines"

    Martyn Hoopers latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

     CCG/MP

    Your local CCG might be able to tell you if the BCSH Cobalamin Guidelines are being followed in your NHS area and your MP should be able to find out for you.

    nhs.uk/servicedirectories/p...

    theyworkforyou.com/mps/

    HDA Patient Care trust

    They are a UK charity that provides free second opinions on treatment and/or diagnosis. Think they may require a complete medical history. They are usually quite quick to get back to people.

    hdapatientcaretrust.com/

    HDA tel. 020 7935 8366

    HDA Online Contact Form

    hdapatientcaretrust.com/con...

    Local Guidelines

    It's possible that some areas of the NHS are following local B12 guidelines rather than the BCSH Cobalamin guidelines. I found it helpful to find out my local area guidelines on the "Management of B12 Deficiency" and then compare them with the BCSH Cobalamin guidelines. These local guidelines might be found by an internet search, a search on local NHS website or a FOI (Freedom of Information request) to local NHS website. Some local Guidelines have not been updated for a number of years.

    Link about writing letters to GP etc when unhappy with treatment.

    b12deficiency.info/b12-writ...

    NHS England Complaints

    england.nhs.uk/contact-us/c...

    nhs.uk/choiceintheNHS/Right...

    seap.org.uk/

  • I feel like I have been completely shut down by my doctors now. The neurologist's secretary told me today that they can't authorise my doctor to give me B12 treatment as it's to do with the blood yet the doctor had told me I had to get the neurologist to do it. Quoted the bcsh guidelines etc to the doctor and they said they follow nice guidelines. Honestly you need a degree in how to get a B12 yet if you took heroine they would quite readily prescribe you methadone. 

  • If you look up NICE guidelines clinical knowledge summary you will see they have been updated based on BCSH guidelines!!!

  • Thankyou. I had a small stroke early hours of yesterday morning. So difficult to post now but will.x 

  • Oh you poor thing..... I had a major LACS coming up for two years ago and have pretty much made a full recovery so I'm wishing you all the good luck for a full and speedy recovery.....

  • 🐧🐧TY

  • Oh dear. I am so sorry to hear that. I hope you make a full recovery. If you are in hospital ask them to do methylmalonic acid and homocysteine. These go up in B 12 (and folate deficiency for homocysteine). They can be raised by poor kidney function and some other things but if kidneys are OK, low B12 and symptoms, it helps prove actual B12 deficiency. Homocysteine is a risk for stroke too. 

    If B12 has already been supplemented these will be more likely be normal though. Others on here have reported they felt they wasted money getting these tests privately after supplementing. I remember reading a case report though of someone with normal B12 who had just started supplements with high MMA and Homocysteine.

    This is a different article but shows B12 can be normal in B12 deficiency. 

    rossscience.org/ARTICLE/OJH...

    Good luck!

  • Hi B12Pleeeaaase,

    Sorry to hear about your stroke. Best wishes for your recovery.

  • I have joined pas today and ordered a copy of martins book, thank you for all the advice 

  • Not to mention damaging your body while it is short of a vital nutritient! 

    Argh!  You have my sympathy. 

  • You have my sympathy as well. Just got back from my eight weekly injection at surgery. Fortunately for me I have a lovely GP who when I visited armed with information and advice from Martyn Hooper who I had spoken to on the advice line earlier that day agreed to let me have them two monthly as I had neuro symptoms which had returned before the three monthly was due.

     How absolutely absurd that a Haematologist said that to you. When I said to my GP that if he knew how I felt when symptoms were bad and the improvement after an injection he was very understanding and just wanted to help me feel better. I had to tell him that you couldn't overdose on B12 though!!. 

    My symptoms do come and go and I take a boost spray some days but have cut down on that now. I do work a couple of days a week as a community nurse and can manage that but when symptoms at their worst as obviously yours are would find it very difficult.

    I would really try again with your GP to increase your injections. If not buy some and ask your daughter to give you them or teach you how to do it.

    What is the point of life if you feel so lousy and it could so easily be remedied. 

     I am willing to come with you to Downing Street and bang pots and pans. 

    Hope you feel better soon .

  • I think we should definitely arrange a peaceful March on downing Street and deliver a petition. In 1974 B12 injections were given every four weeks. Suicide is the biggest killer in young men now. Just wondering if there could be a link between this and B12 deficiency being treated as depression, ME, etc.

  • I have just returned from having a gastroscopy. I was asked if I was taking iron tablets for my anaemia!!!! Unbelievable that health professionals in a gastro clinic don't know what pernicious anaemia is.

  • I read on an earlier post about joining the pas ha, I thought that's what I had done being on here, will do it later as at work today and thankfully feeling better after 10 hours sleep and 4 sublinguals in my cheeks last night and this morning 

  • I know I could not survive on 2 or 3 monthly. My GP agreed to monthly to get rid of me I think. I feel best on fortnightly though. I take 5 mg sublingual and occasional Boost spray too. I recommend keeping a diary in relation to injections and going back to GP with a supportive relation or friend and the guidelines. I told the GP it was my health and that I wasn't going to take chances. It requires being assertive which I usually am not but there is nothing more important than your health. Especially if it starts to impact on your ability to function. One compromise might be to request a trial with keeping a diary of the impact of more frequently injecting, then GP review.

    Good luck! 

  • I get my injections every 3 weeks now after i provided my doctor with all the new guidelines etc which he forwarded (i think) to the consultant haematologist. She replied to him saying that they don't know why some people need them more frequently, possibly due to the placebo effect but that i could have a trial of every 3 weeks and then review after 3 months. I am now on injections permanently every 3 weeks and all symptoms have gone apart from pain, tingling, burning sensation, loss of sensation in finger tips and some joint swelling.

  • I am so jealous. I haven't even managed to get one injection yet. Have just injected myself and cannot believe i have been forced to do this. After nearly a year of practically begging the doctors for a therapeutic dose and after a small stroke on Saturday being the final straw. I will be injecting my son in the morning as he is having injections but they want him to have another blood test to see if he is now within range 😧. I have refused to get his or my blood tested as it means nothing and I just want them to treat the debilitating symptoms. I have really really had enough now. The treatment of B12 deficiency sufferers is barbaric and it must stop. I intend to arrange a date for a demonstration/March in London in the summer, is anyone interested? 

  • Me I will be there!!!

  • "as he is having injections but they want him to have another blood test to see if he is now within range"

    The "BCSH Cobalamin and Folate guidelines" make it clear on page 8 that further testing of cobalamin levels is not needed.

  • I am going to start self injecting to see if i can reduce the symptoms that i have left, i thought i would try weekly and see what happens. The only good thing about my GP is that he said checking b12 levels once treatment has started is pointless. I was diagnosed in 2008 so it has been a long journey. The GP diagnosed me through the b12 blood test, symptoms and the family history of PA. Have you given your GP all of the guidelines that are now available, I think this was the turning point for me. I am the only person in my GP practice that gets the injections outwith what the BNF says

  • I have just started getting these posts, and overall, I am grateful to be a rogue alternative self-medicater! I live in the states and have bemoaned the fact that Europe is so far ahead in its' approach to my rare blood cancer, Essential Thrombocythemia (non genetic mutation type).  After reading all these posts, I see that your docs are as blind sighted and frightened of B12 as ours are! I declined the chemo I was offered a year ago; it does not cure my cancer, does not slow it down, and has a propensity to cause it to morph more quickly into an advanced end stage. I treat my debilitating fatigue with a 5000 mcg B-12 shot a day combined with a B complex dosing.  I started on just 1250 mcg B-12 and then the fatigue returned. I then read that B-12 needs the B complex to support its absorption.  I have not lost a day to the fatigue or tinnitus, neuro symptoms, and other PA common maladies that my cancer mirrors.  I am finished with the medical community.  It is me and God alone now and we are both quite happy with my decision.

  • Well done ,fatcatmom! 3 cheers for you !

  • You're an inspiration and am going to order up whatever it is I need and be my own doctor. 

  • What an inspiration you are. God knows you shouldn't have to go through this. Keeping you in my prayers.

  • What is the common dosage taken by members on here?

  • One milligram. 

  • B12 pleeaase..... How are you doing now are you out of hospital? 

  • I went back in last Thursday by ambulance as bottom blood pressure figure 125!! And tingling and less of sensation down the left side of my body again. Has anyone else had small strokes because of the b12 deficiency. I hadn't managed to get any help for myself as am within 'range' my B12 is 220 and all my time has been taken up with getting treatment for my 18 year old son who was so fatigued he could hardly speak. Heartbreaking. 

  • thank you

  • Oh I have now joined the PAS properly... and purchased martins book and almost finished reading it 

  • What treatment are you having?

  • 12 weekly jabs of hydroxycobalamin then supplementing with a high dose methylcobalamine sublingual from week 7-8 till next jab, is that what you meant or did you mean for the stroke?

  • I will join the march..... so long as it is not in the dreaded wait and run up to next b12 injection............

You may also like...