GP refusing to listen regarding NICE guidelines for pernicious anaemia

Hi there can someone please give me advice.2 years ago I was suffering symptoms which made me feel as though I was going mad.

Fatigue,electric shocks all over body,numbness in left arm and leg,muscle spasms,tinnitus,brain fog,feeling of nettles when clothes touched skin,insomnia,twitching face severe hair loss and depression.Eventually I lost the feeling in my left leg and collapsed.This resulted in hospitilisation under the care of a professor of neurology who seen me for a year with no diagnosis.I ended up 2 years down the line practically bed bound and my GP noticed my B12 had never been checked.When my results came back it was so low 79 it was dangerous and I was diagnosed with pernicious anaemia.She treated me with 3 injections over two weeks and then once every 3 months.

It took about 4 months for me to start feeling better but the benefits only lasted about 6 weeks then symptoms came back.Another year down the line I after being refused by 2 GPs who said it would do no good,I managed to get my injections 2 monthly.

The problem is after 6 weeks my neurological symptoms return and even after showing 2 doctors the NICE guidelines they still say further doses would do no good.

What can I do to convince them they just think I'm a nuisance but I feel I,m being denied treatment I need.Can anyone please help.

77 Replies

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  • Hi margareta12321 If both doctors choose to ignore the N.I.C.E guidelines it's unlikely they will take note that the British National Formulary (B.N.F.) guidelines say exactly the same.

    I suggest you join the Pernicious Anaemia Society and put your case to them. It costs ยฃ20.00 for a year's membership and they have been known to intercede on behalf of members.

    I wish you well

  • Thanks for responding I will join them.I feel like my doctors don't want to know.

  • It happened to me margareta12321. I hadn't discovered the PAS then and I struggled with the GPs, to no avail . So I found out how to self-inject , and I haven't looked back . It's marvellous being in control . But clivealive is right - join the PAS , and then they can intervene on your behalf. And how do the docors know that extra injections would do no good if they haven't tried? There is no danger of overdosing on B12 . Do not give up !

    Very best wishes .

  • Thanks Wedgewood, how do you get the serum to self inject?I offered to pay for it at GPs but they said it wasn't allowed.

  • Yes it's a good idea to perhaps get some , in case you don't succeed with your GP . In the UK B12 ampoules are only obtainable on prescription. In many countries they are obtainable over the counter . Germany for example ..I get my ampoules from a good online German pharmacy .

    versandapo.de in English

    Type that in and you should get the English site , otherwise scroll to the bottom and click on the Union Jack .

    I believe you have to register before your first purchase .

    If you search for Vitamin B12 you will have to wade through all their B12 items. I

    f you put in the following reference nos , you will get straight through to the ampoules I buy , namely 1mg/1ml Hydroxocobalamin , which is the kind of B12 injection that the NHS uses .you can get 1mg/2ml ampoule as well. But always make sure that it is Hydroxocobalamin , although some people do use Cynocobalamin.

    10 ampoules PZN 3862297 costing 8.99 Euros

    100 ampoules PZN 3862305 costing 55 Euros

    Courier shipping 8 Euros irrespective of how many you order .

    You can pay by PayPal or card . Takes about 4 days

    Needles , syringes swabs and snaps disposal box from Medisave uk . You will have to decide how you will inject

    Sub-cutaneously ( sub-cut ) or into the muscle (I.M. )

    Look on u tube for videos . G.Ps use I.M. You need to decide . Needles are different sizes depending which method you use . Just message us if you need to know anything else ! Don't forget a large gin and tonic for the first time !!!!!!!

    Well it's given you something to think about !!

  • Thanks again Wedgewood I volunteer in my local hospice and the nurses there said if I could track down a safe supplier they would inject it for me.

  • You can rest assured . The German online pharmacies are very professional and are controlled by the German Health authorities . One PAS member said those very same ampoules are used in her/ his surgery . I have used versandapo for over 2 years . They are great . I am pleased that you will have someone to inject you . You may well want to do it yourself eventually . I would now rather do it myself ! I use I.M. and use my thighs ( middle outer third !

  • Thank you its nice to know someone has used them and that they are reputable.I have ordered some even if doctor bows down I can use them when I feel I need them.

  • Quite a lot of people on this site use versandapo .de . Goldpharma .de are also good . along with mycare.de .It will give you confidence to know you have a way out if your GP lets you down . All the very best .

  • What type of needle and syringe should I use?I know its 1ml but what length etc?

  • I don't know about sub- cutaneous injection needles .

    You can use either 1ml or 2ml syringe for a 1ml ampoule .

    For Intra - muscular (I.M. ) injection into my thigh I use 2 needles . One to EXTRACT the liquid from the ampoule -- namely

    Terumo Agani needle 21GX 1 1/2 "

    To INJECT I use -

    Terumo Agani needle 25GX1"

    This is a really fine needle..

    You can get these from Medisave.uk and other suppliers

    I use the middle outer third of the thigh, where the muscle is nearest the surface .

    I alternate thighs.

    Keep a note of when you inject .

    I'm sure you will get some more information from other members .

    Best of luck !

  • Thanks,I will order them today.Im handing letter and relevant literature in to GP who deals with complaints.Ill hand it in tomorrow morning and I've got appointment with her on Tuesday.My son will supervise me self injecting for first few times.I don't want him to do it as he doesn't live near me.The hospice nurses have offered but I wouldn't want them to get in trouble for it.So I think I should bite the bullet and do it myself.I wont lie I'm a wee bit apprehensive.

  • Yes it's good to have someone with you for the first time . You might need a little gin and tonic ( I did) You will find loads of videos on U tube.

    First wash your hands and swab injection area . Take care when breaking open the ampoule. Wrap a swab around the neck . Break It away from the little dot . It is the weak part of the neck . Put the withdrawing needle onto the syringe and put it on the bottom of the ampoule . You want to extract every last drop of the precious liquid! Turn the syringe upwards and flick it till all the liquid comes together . Remove old needle and replace with injection one . Press on plunger till a little drop of red appears on the tip of the needle . You are ready to go ! 3 cheers .Look I don't know if what I do is 100% correct . I taught myself , but it works ! Best wishes ' ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ‘๐Ÿ‘๐Ÿ‘

  • I'll let you know how I do.

  • Yes please . I'm rooting for you !

  • I had appointment with doctor who deals with complaints and she left me in tears.She was really intimidating and said if I was complaining she would need to start an investigation that would take months.She said all the information gathered was irrelevant as they follow local health board guidelines and angrily handed me a copy.

    I told her my symptoms were nearly as bad as when I was first diagnosed and that I was only given loading doses for 2 weeks then 3 monthly.I managed to get a doctor to reluctantly change it to 2 monthly.She asked if initially I got better and I said after 3 or 4 months it got better for a while after my injection but never fully but now it was full blown.She said I was given the loading doses for 2 weeks and if I felt better then that's why they stopped.I reminded her that it was her I seen after 3 months still feeling terrible and she said then it would take time and increasing jabs would be of no benefit..

    I asked if I could get the injections every other day as was supposed to happen and she got really angry with me she said "You just told me you did get better so we done the right thing"I said no I got a bit better after a few months.

    She then said "Look I'm not here to argue with you you've got lots of irrelevant opinions everybody has got an opinion and you've presented them all"

    I said that I had spoken to the Pernicious anaemia society and she said"They want everyone to get more frequent injections and that cant happen."All this was said in a very intimidating way.

    I told her about my sons friend who is a haematologist and what he said he would do in my instance.She retorted "I go by Forth Valley guidelines not your sons friend.

    She then said that every doctor I had ever seen regarding this would have to be investigated unless I withdraw the complaint She said all the doctors in the practice had got together and said my treatment was right.I was so overwhelmed I said I'll just inject myself if its that much bother as I am worried about permanent neurological symptoms.

    She said she took offence to me suggesting that if it was down to costs then I would self inject she then said this medicine costs pennies.I asked why it was such a problem and she said there would be no one able to see me on such a regular basis to give injections and that there were cutbacks all across the NHS.

    She then said to me again really intimidatingly that she would speak to a haematologist at NHS Fort valley as to whether it would be of any point giving me more loading doses but she doubted it.I got up to leave and she snapped are you happy now?.I said bye and she ignored me.

    I walked out the room and burst into tears.I can't bring myself to go back to that doctors as I've never been so humiliated in my life.Oh and when I read the guidelines she gave me they were the same as the ones I gave her.

  • I am so upset for you . That was a terrible experience . I have never confronted my doctor . It would have been better to take someone with you . That vile doctor would never have treated you so badly if a witness had been present . We tend to think of all doctors as being benign , where in fact they are just like any other body of people with their share of " nasties" Someday , PA patients for whom the 2 or 3 monthly injection is insufficient, will get the correct treatment , thanks to Martyn Hooper who founded our society .

    I am convinced that my mother died of PA now that I know so much about it .It is a very slow horrible death. I've read every book, read so many case histories on this site , and experienced PA myself . The fight to try get treatment has honestly scarred me . The attitude of doctors is truly shocking . Self injection has saved me as it will you . You know that you have friends here , which I hope will give you some comfort , although you can not get to know us as you would conventional friends .

    One day this OUTRAGE will be resolved . IT WILL. I'm convinced . It must cost the NHS millions dealing with such sick people , all for the want of cheap B12 . We could be taught how to self -inject ,then that would save on nurses ( though we do know that some surgery nurses salaries are paid for by pharmaceutical companies !. Interpret that how you like !) This is all in the not too distant future I hope . In the meantime save yourself by self injecting ! Very best wishes .

  • Hi Wedgewood supplies are all here.Think I've ordered wrong syringes though they say for insulin use only.Do you know if they will work.I'm clueless

  • No, you're fine with those . They are the ones I use ! All is well . I don't know why the 1ml syringes are labelled as insulin only . They hadn't used to be !

  • Whew!Thought I was getting another disappointment there.Have to admit injections don't phase me but looking the needle in the face is rather daunting.Son was going to supervise first one but I think I'll need several southern comforts to pluck up courage.(kidding)

  • Nothing wrong with having a southern comfort ! I had a large gin and tonic the first time !After a few times it's just routine! Look at a few u tube videos ! Practise on an orange ๐ŸŠ ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ‘

  • I manage it myself by topping up Sub-cutaneously , I inject in my stomach. My usual monthly, now 3 monthly at surgery and my top ups done at Doctors Inc., in arm muscle.

    It takes a day or two before I feel the benefit of my injections. It's not a wonder cure as such, you have to manage all the other vitamins and minerals that play an important role in this, but when you are in balance , you almost forget you have the problem. I get my ampoules from Germany as was mentioned above.

  • I'm so pleased that you have taken matters into your own hands . I do I.M. injections

    Of course the only draw-back to this , is , that if you don't tell your G.P. , he/she thinks that their treatment is adequate . I told my GP that I was self - injecting , then heard her say that she had patients for whom one injection every 3 months was sufficient . I was supplying 2 of her patients with B12 for self -injecting. ,but could say nothing . That was frustrating I can tell you !

  • I quite understand. This is a new GP surgery and I have only just start using it to get my B12 injections, ( we moved) GP will not see me anymore, very patronising! I will try a female colleague if I have other issues in future. I have put it my medical history on my phone for emergencies ( also about this GP being patronising and not being up to date with his information about B12 )

    I can't be bothered to spend my good time on fighting with this man. I sorted my problem out, cost sometimes a bit of money, but I think if we can afford to eat out or shop occasionally then I had rather spend that money on my health.

    I will sit down and write the practice a letter about this issue later in the year when I can find the time. As you say if people not spell it out nothing will change. Thank you for you comments, also all the good advise on the site!!!โค๏ธ

  • I've had more help here in one day than a year from my doctors.I will be telling them Im going to self inject as I feel the need to treat myself properly.Even the advice from my sons haematologist friend isn't moving them. I'm getting armed with all the information I can and this along with the advice from my sons friend are being written down and I'm asking for it all to be put in my records in case something happens to me because of the wrong treatment.

  • I'm really pleased to hear you sounding so positive ! Excellent ! This is such. a hard fight when you feel so unwell . Thank goodness for this site and Martyn .

    But I do worry about the PA folk out there who have no computer or internet . They don't know about this site . It's really terrible for them .

  • I know bet there are people who just as accept that they are going to feel terrible for the rest of their lives because they blindly accept what their doctor says.Even I was unsure about how to get B12 to self inject until I spoke to you.Especially. Older people will be suffering in silence.

  • I always buy 100 because it's so much cheaper . The use-buy date is usually 2 years hence .

  • That's what socialized medicine is good for. B12 is a harmless medicine and people should be allowed to get it especially if they are willing to pay. Get ot over the counter in a sublingual form. Hopefully 5000 or higher to take daily under the tongue. keep it there for a couple of minutes before swallowing.

  • Where do you get this?When I get the stuff to self inject I was going to do it every 2 weeks.Do you think I should use this as well?

  • I take shots, but I also take sublingual because sometimes I forget to take the shot now that I only take it once a month. Sublingual will work in very large doses but I am just fearful of only using it. Where do you live? In America? You can get 5000 strength at RiteAid or another pharmacy, maybe even Walmart. Do not trust taking it by pill form. I had a very severe case, "NO detectable b12" by the time they figured it out. I was accused of needing counseling etc because i had so many symptoms. None of the doctors I saw had ever seen a case like mine or even close to it. B12 is used as a placebo so much, if you mention it to a Dr. they think you are whining. Not fair, I don't think most men would be treated this way.

  • I live in Scotland.Ill have a look but no doubt it wont be available here.

  • My goodness I thought my levels were low in the 70's you must have been really bad.Do you have a good improvement?

  • I'm not gonna lie or exaggerate, I was a mess by the time they (one Dr) figured it out. I was lucky that my bishop and his wife (I'm a member of the Church of Jesus Christ of Latter-Day-Saints) had known me for 30 years and knew I didn't have any history of mental illness and spoke to his wife's Dr and ask if she would take me as a patient. She did the extensive blood tests right away and we began the shots. She called me and said she had good news and bad, the good news was I wold not die, the bad news was I had symptoms for so long we couldn't be sure how much permanent damage was done. I am very blessed to have a normal life actually. But healing to this point took me about 1 1/2 years. The last things to go were the vibrations in my body and my nose would twitch, then the very last thing was the funny sensation when I took a bath and rubbed my arms it felt odd and there was weakness in the muscles. Good luck to you. We are hoping to get rid of Obama care here. Trump is a jerk in a lot of ways, but he is trying to do the right thing for America. Please Pray for America, the people just want to live in a free country. We have been awakened to a terrible truth that evil people are running the world. I am blessed with a good doctor, If I tell her I want a certain test done she orders it. I have to pay, but I can get it. She trusts me to tell her the truth and listens to me when I tell her what's going on. I do not want socialized medicine here. Everything our government runs they ruin it. Take care.

  • At least you were listened to.If you pay you will be listened to I suppose.I can't afford private treatment but we are lucky to have NHS and I'm not running it down but its hard to get the message across regarding treatment fo r PA.I am happy now that I now know a trusted source and am looking forward to self injecting.

  • I was not listened to, I went through 5 doctors before I got diagnosed. 4 of them told me I was depressed and needed mental health / counseling. If it weren't for our bishop our friend speaking for me, even the doctor who figured it out said she might have thought the same thing because as soon as she asked me "what's up" I started crying, I stuttered, I twitched and rocked. My nervous system was shot and my symptoms were so numerous. And the funny part is, I didn't even tell her all the symptoms because I thought many of the symptoms were unrelated, like bladder infections, vertigo, vision changes, etc. I was mostly concerned with the numbness and thought I had MS.

  • Wow glad its sorted must have been horrific

  • Many Pernicious Anaemia patients are not able to get benefit from sub-linguals unfortunately . It's the injectable form that can only be obtained by prescription that they need and can't get. Thank goodness for German online pharmacies .

  • I cant wait for mine to arrive.Even if they agree to loading injections I'm still going to self inject.

  • Yes there's no harm . You cannot overdose !

  • "She treated me with 3 injections over two weeks and then once every 3 months."

    Do you mean you had 3 injections the first week then another 3 the second week , making 6 loading injections in total, followed by one injection every 3 months?

    The recommended treatment regime for those with B12 deficiency without neuro symptoms is 6 loading injections over 2 weeks then an injection every 3 months.

    Those with B12 deficiency with neuro symptoms (eg tingling, pins and needles, tinnitus, memory problems, balance issues plus other neuro symptoms) are supposed to get a loading injection every other day for as long as symptoms continue to get better then maintenance injections every 2 months.

    UK b12 treatment info

    1) BNF British National Formulary Chapter 9 Section 1.2

    All UK Gps will have access to BNF. Probably a copy on their desk or bookshelf. It's possible to get own copy from good bookshop or internet retailer.

    bnf.nice.org.uk/drug/hydrox...

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

    2) BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that PA should be treated according to treatment pattern laid out in BNF....eg loading injections every other day for as long as symptoms get better if neuro symptoms present.

    Your list of symptoms below contains several that would normally be considered as neuro symptoms.

    "Fatigue,electric shocks all over body,numbness in left arm and leg,muscle spasms,tinnitus,brain fog,feeling of nettles when clothes touched skin,insomnia,twitching face severe hair loss and depression.Eventually I lost the feeling in my left leg and collapsed"

    See lists of B12 Deficiency symptoms below

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Have you discussed with GP that in UK it is recommended that people with neuro symptoms should have loading injections every other day as long as symptoms continue to get better not just 6 over 2 weeks.

    Although GP has said no to maintenance injections more often than every 2 months, perhaps they would be amenable to giving loading injections again, this time using the regime for those with neuro symptoms.

    SACD

    Some people on forum have discussed the consequences of undertreating B12 deficiency with their GPs. Inadequate treatment of B12 deficiency can lead to permanent neuro problems including problems with the spinal cord.

    There is an article about SACD, sub acute combined degeneration of the spinal cord on PAS website available to PAS members. Some forum members have showed this to GPs.

    pernicious-anaemia-society....

    Story on Martyn Hooper's blog about PA and B12 deficiency which mentions SACD.

    martynhooper.com/2010/09/21...

    News item on PAS website about neurological consequences of PA, mentions SACD.

    pernicious-anaemia-society....

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    Unhappy with treatment (UK info)

    Link about writing to GPs about B12 deficiency

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/health/

    HDA pct

    UK charity that offers free second opinions on diagnoses and treatment

    hdapatientcaretrust.com/

    PAS

    pernicious-anaemia-society....

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

    I am not medically trained.

  • Yes sorry it was 6 in 2 weeks.I have found that they don't seem to understand the guidelines as this is the third doctor I've seen and although they know how serious my neurological symptoms were and sometimes still are I was treated the same as someone with no neurological symptoms.I had to fight to get 2 monthly injections as I was getting all the symptoms back after about 6 weeks.I went to my doctor today with a printout of the recommendations from NICE and he said that once you have had an injection there would be no point in injecting more as it would make no difference.I'm fed up with it all and now feel embarrassed to go back to them.Thanks for your help I am going to print it all out and send it to doctors.

  • "I am going to print it all out and send it to doctors."

    Might be worth doing this in letter form. My understanding is that letters to GP are filed with medical records so are a record of issues raised.

    b12deficiency.info/b12-writ...

  • I've written a letter outlining my concerns and put it along with all the evidence.I'm handing it in tomorrow and booked appointment for Tuesday to discuss it all.

  • I didn't fight, I was embarrassed and now my neurological symptoms are beyond help. Degeneration of the spinal cord, numb legs and no balance and problems with my arm.

    Take all the help you can get here, print out everything, get Martyn Hooper PAS to intervene if you can, and keep bothering them - or go the self injection route. Good luck.

  • I'm sorry to hear that.I know I should fight but the sad fact is we shouldn't need to fight its a disgrace and Im fed up being treated like an idiot.Wedgewood has given me the name of a site in Germany that he/she uses and I have ordered some.Shame on you NHS.

  • Trouble was , beginner1, when you were suffering badly with PA, you felt so unwell that it was well-nigh impossible to fight . I cannot for the life of me understand why the GPs behave like this to their patients . It makes me WILD with rage when I hear what you and others have gone through. Is it because it's mostly women who get PA , and the mostly male doctors think that they are being hysterical ?

  • Hi, I had a similar experรฎence at my Drs. I presented with neurological symptoms and was given 6 loading injections followed by 3 monthly ones which didn't really touch it, my symptoms came back quickly. The dr refused any different treatment. I joined the PAS and printed all the documents out and wrote a letter to the practice outlining what the guidelines say and said I was concerned about the spinal cord degeneration. They agreed to move me to 2 monthly but the problem was I had never had enough loading doses in the first place. I have bought sub linguals, patches, sprays a whole host of vitamins, I would rattle if I jumped up and down. I made another appointment with gp explained it was affecting my work and life and showed her a bag full of stuff I had bought. She agreed to another 6 loading Doses. This did start to work I was refused any more. About 5 months ago I was referred to a neurologist and because I explained that my symptoms were slowly improving a asked for a pilot treatment of one injection every 2 weeks. I backed this up with a diary I had been keeping from advice on here and the PAS and I was able to show that I went rapidly downhill after 10 days of having jab. I am now on 2 weekly jabs which has been extended 3 months at a time. I know I have not been treated in line with guidelines but know I am doing a lot better than a lot of others out there. I found the turning point for me, was putting it in writing and arming myself with the information for the dr to read. My dr seems to have come around now and she is really listening and trying to help.

    Sally

  • my symptoms were so severe I was seeing a professor of neurology for over a year but the one thing that wasn't checked was my B12.When I was eventually diagnosed a further year later I was given treatment for people with no neurological symptoms.I have told several doctors this but they fob me off.

  • I,m glad your doctor is listening at last Sally but its terrible the lengths you had to go to.Also guidelines are not set in stone but my doctors didn't even follow them.

  • As I've been reminded on here several times you CANNOT be overloaded with B12 !

    My GP has agreed to every two weeks (still not enough)

    Maybe you could change GP or try another one in the Practice - bit drastic I know ! I presented mine with a logic argument that it may be N.I.C.E. guidelines but that means diddly squat to an individual body - it's not a one size fits all solution. Their guidelines are questionable anyway !

    GP and I have already had the whole Hashimotos debacle so maybe he agreed just to shut me up that and the fact I'm red flagged for Neuro anyway ! I do hear you re all the Neuro stuff ๐Ÿ™ˆ

    Why oh why does it all have to be so challenging !

    SM

  • My sons friend is a blood specialist and he even said I wasn't being treated properly.He said doses every other day and then monthly if I was referred to him.GP wasn't interested when I said this.In all I have seen 4GPs with one agreeing to 2 monthly injections.As people have suggested I'm going to put all the evidence in writing and hand it in to them.Im so fed up.

  • Beep persevering, I hope it works out for you

  • Thanks Sally this forum has made me realise that its a widespread problem and encouraged me to persevere.

  • Oh I know - I've got my way so far by stealth and contrivance toe honest Margaretta . I might have to go down the route of self ๐Ÿ’‰

    I also might see a Haematologist privately as I need the other B12 test - can't remember the name but it's the one that measures active B12 in yourtissues and not just blood serum. NHS won't do it nor will GPs

    I'll have to put it on the long finger - I'm already v tired today with screen time for work so it's tools down for an hour now. I'm comprised anyway with my Neuro condition. You know this feeling I'm sure !

    All the best

    Susan mac

  • I had never heard of pernicious anaemia until a year ago and to be honest was relieved for a diagnosis at first.It amazes me that you and other people have been mistreated as well.Why are we having to fight and beg for proper treatment I just don't get it.Doctors seem to think that giving an injection overloads your system so there is no need for more.

  • Hi , I know what you are going through as my husband is in the same boat , I fought for more frequent injections due to his severe neurological symptoms , eventually thanks to PAS and this group he was allowed alternative day jabs for 6 weeks only to be stopped and refused to 3 monthly again , . So now I inject him weekly and he is slowly improving at long last . I wish you all the best and I'm sorry you have been treated so badly , the professor should have tested your b12 as routine knowing it can cause nerve damage , . Can't you write to him/her to ensure he tests the next person ? Best of luck with SI. And speedy recovery

  • He was one of the leading neurologists in Scotland and I was deemed very lucky to be under his care.He was thorough and I had CT scans,MRI scans lumber puncture nerve conduction tests but obviously he was barking up the wrong tree.I had several blood tests but B12 was overlooked he was clearly looking for things like MS and stroke.When I became really bad my GP looked at all my tests and was surprised to discover B12 was never checked.She said she was going to contact him with the outcome. I'm really glad that your husband got at least some extra treatment with your perseverance but like most of us it's still not good enough if he is still having to self inject.I hope he continues to improve.

  • I forgot to tell you. pernicious anemia is usually balanced. For instance, each leg and each arm is usually affected equally and the same. Once you have nerve damage it is called "subacute combined degeneration" I am a little concerned you have unbalanced symptoms. I am a firm believer if you have anything going on with the nervous system, B12 should be at least one course of meds that need to be taken. Lack of or low B12 causes you to loose the sheath that covers each and every nerve to protect it. also, your blood will not mature properly causing you to be short of breath and low iron etc. In the old days when women got this, they called her hysterical, put her in an asylum or gave her an orgasm. :)

  • Really! I am definitely more affected on my left side.The tinnitus numbness and twitching is on the left side and my left arm feels like its got a blood pressure cuff on it.The nettle feeling is all over and so is the involuntary muscle movements and electric shocks are all over.And obviously there is the brain fog which is scary.

  • My Son and I both had it, of course because I had it before him, once he started having symptoms I made him go get it checked. He first noticed tingling in his toes and fingers on both sides. I had many symptoms before the tingling like vertigo, forgetfulness, vision, bladder infections (because the bladder muscle was too weak to empty" I started stuttering and actually had tics and palpatations before I had tingling. I also had lack of sensation pertaining to sex. I thought it was and my dr thought it was starting the change of life, but it wasn't. Later the tingling and numbness spread over all my body, I was in constant pain like laying in the snow, I had odd cravings including chewing ice every waking hour until I killed a few teeth in the back. The list is very lengthy. But what I felt on one side, I felt on the other and studies say it is mostly that way, but hey maybe every case is not alike. I pray someone will find your problem and take care of you. I know exactly what it's like to have Dr.s treat you like a loon when you are already in fear for your life. I went through my ordeal in 2000 and the only blogs I could find on numbness were mostly about MS etc. I didn't know at the time my many symptoms were related.

  • strangely enough my son is also showing symptoms.He asked to get B12 checked and was refused.Hes going back to GP next week to force the issue.Hes only 25.I hoe he's not got it but he should b tested.Thanks for your support

  • Do you live in a country with socialized medicine? Just wondering

  • I live in Scotland we have NHS which is a once great system being destroyed through lack of funding but I'm still grateful for it.

  • Hi margareta12321

    Might be worth your son looking at this forum as well.

    I gave a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my Gps.

    There has been a petition about b12 deficiency going before Scottish parliament over last few years which may be of interest.

    parliament.scot/GettingInvo...

    MIght be worth you or your son joining PAS.

    There are stories of how PAS has helped people get correct level of treatment on Martyn Hooper's blog.

    martynhooper.com/2017/07/01...

    As PAS members there are several leaflets that you could print off about PA.

    pernicious-anaemia-society....

    There is a link to a Facebook B12 support group on this link to "B12 deficiency Info" website

    b12deficiency.info/very-use...

  • Thanks Sleepybunny I have just joined.My son asked about details of forum and PA society.He didn't know too much about the condition and usually I tell him I'm fine but am so fed up I've told him the truth.Hes no happy about the way I'm being treated and is getting advice from his haematologist friend.My GP is not listening though.I will get a copy of the book.Thanks for your help.

  • PS I signed the petition

  • Glad your GP is informing the professor about your B12 . My OH symptoms are down his left side too , even his vision in left eye is affected , he's seeing an eye doctor in the hospital Tuesday . But thank you , yes , a lot of his symptoms are improving thanks to SI . I hope you have frequent injections ASAP , best of luck

  • I wonder if there's a reason for more symptoms on left side.Thats interesting to know.Thanks even if no joy from GP I'm hoping to be self injecting soon.

  • One of the difficulties I have encountered when discussing more frequent injections with a GP is the Manufacturers License for Hydroxocobalamin specifies injection at 8 or 12 weeks only. This is also mentioned in the NICE guidelines. I am seeing my GP next Thursday to discuss his findings after he has sought advice from a Neurologist about allowing him to prescribe for 2 weekly injections to see if this will help with my problems. (It does, but that is unofficial)

    As a precaution I have established a supply line from Germany and will take the matter into my own hands if there is a problem as I don't want the 'electric shock' type pains, sore and dry mouth and tinnitus coming back after a couple of weeks into the 12 week cycle.

    I would much rather have our UK GP prescribing, not because of cost, but in case there is a problem of importation of a medication which is only available here with MD's Prescription once we are no longer in the European Customs Union.

  • I would like it to be prescribed as well and hopefully one day it will.My prescription on its patient information states With neurological involvement 1000 microgrammes every other day for as long as improvement is noticed.I only read this information today after speaking to son so I will be taking this on next visit to doctor along with all the other evidence I have.What a carry on to get the proper treatment for our condition it's scandalous.At least your doctor took advice mine seems to be reluctant and even said to me that there is no point as he doesn't see what good it would do,

  • My GP is exploring this neurological aspect of B12 deficiency as it is his key to being able to prescribe more than the 8 or 12 weeks supply. There is also the concern over there not being any thought given to the pins and needles etc at the time of the diagnosis when the regular blood test showed low B12 levels. I have actually talked to them about the sore tongue and tinnitus returning too soon and been told there should be no problem as my latest blood test, after injection, was normal.

    I will be finding out what his decision is during next week. He is a junior partner though and I am somewhat concerned about the attitude his peers in the practice may have to say.

  • why are GPs behaving like this?I find it really odd.Do they think we are lying?The haematologist that gave me advice said blood tests when being treated are not indicative of how effective treatment is and the patients symptoms should dictate regularity of injections.My GPs however dissagree and say if sufficient levels are present in blood there There is no need for more.

  • At next appt perhaps GP will let you look at their copy of the BNF which is very likely to be sitting on the desk or book shelf.

    If GP turns to Chapter 9 Section 1.2 it details the treatment regime for B12 deficiency with neuro symptoms including loading doses every other day.

    If you think GP is unlikely to let you look at their copy.....

    1) You could get your own copy of British National Formulary.

    2) The same info is in BSH CObalamin and Folate Guidelines, about a quarter through document. I gave Gps a copy of relevant treatment info from BSH guidelines.

    As there is more than one family member showing symptoms, following links may be of interest..

    Risk factors for PA and B12 Deficiency.

    Having a blood relative with PA or another auto-immune condition is a risk factor for developing PA.

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

  • Thanks your advice will help me to feel confident as I will have evidence.

  • The person who runs "B12 deficiency Info" website can be contacted by e-mail.

    b12deficiency.info/contact-me

    I'd recommend reading the blog on her website.

    Some people on forum have had help from B12d.org charity.

  • Thanks,I contacted the PA society today after joining and they have told me to tell GP that they are concerned about my treatment.They said if I get no joy they will intervene.Thank goodness for this forum I now feel confident instead of totally defeated all in a couple of days.

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