What can we All do?

I have recently moved from Australia to England. In Aus I was diagnosed with and being treated for B12 deficiency, receiving jabs every 2-3 weeks due to my body not retaining B12... which were life changing for me. However, since arriving back in the UK I have not received a jab for over 4 months and my GP and Haematologist won't even discuss the situation. I cannot persue the NHS route and I feel forced to self medicate.

In the UK, are there any Private GPs or alternative therapists, Naturopaths etc that you know help with B12 issues, diagnose and administer the shots?

I am feeling so saddened to think of how others are suffering. I want to help. Can I? I am not an expert B12'er like some of you on here, but I am an expert in my B12 situation and I desperately want to 'spread the word' or do something productive. I feel so, so many people could be saved if just given a regular B12 shot.

I can use a computer, go online, purchase B12 supplements etc... but what about those who can't?

For those who have been persuing this B12 mission, is there anything you can recommend to do to try and encourage change? (of course i'm aware I can't change the world alone!)

I was just reading about Dr Jason Chandry's story. I am appalled and sickened. What is happening??

thejournal.co.uk/news/healt...

I know this is old news... but it's shocking.

Out of interest, to those who inject, do you let your GP know that you are self medicating?

Lastly, I thought there was a pinned post about how to self inject...? I can't seem to find it. Could someone direct me please (I can only see about 4 pinned posts).

Thanks for reading and I just wanted to say thank you to those of you who have spend such time sharing your knowledge and advice on this site. You experienced ones make such a difference.

31 Replies

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  • Sorry - no pinned post on self-injecting - it isn't something that the PAS who sponsor this forum actively encourage though they accept that many people find themselves forced down this route because of the difficulties with getting treatment on the NHS.

    The PAS is involved in lobbying health groups and trying to get them to amend guidelines etc to reflect needs of patients and would prefer a world in which patients were able to work with their doctors.

    Suggest that you contact the PAS - and join them - if nothing else they are always looking for people to help run/co-ordinate support groups.

    pernicious-anaemia-society....

    B12d.org also have support groups - and some use them to source B12 - though mainly those that feel they need methylcobalamin.

    In terms of sourcing for injection - most on here who are UK based purchase injectable B12 from reputable German pharmacies - versando.de, mycare.de ... and also from amazon.de.

    Medisave is a popular source for needles.

    Personally I inject subQ using insulin needles but others do do IM and people have linked to various videos in the past.

    Whilst there are private hospitals etc it can be rather hit and miss as to whether the treatment they offer is any better than NHS and it is likely to be expensive.

  • Gambit, thanks. I will look into all of this and feel excited to somehow work towards supporting others.

    Thanks again.

  • we do ocassionally get posts from Oz, would appear that your experience there is far from standard so will try to remember to bring you in if I spot any relevant posts as you are obviously a lot more aware of protocols etc than I would be

  • Yes, sure thing. I was seeing two different GPs over there, and both were thoroughly supportive... they advised, investigated, sent me to a Gastro who did a Colonoscopy and Gastroscopy and were encouraging me to receive regular jabs. The 'normal' B12 limit never came into it and they only dealt with MY situation as opposed to 'the book'.

    At certain points, they tested my blood weekly, so see how 'high' my levels got after 1, 2, 3 etc jabs, then weekly to see how fast my levels dropped, then compared those findings with how good or not I said I was feeling.

    By the end of it, I could go in and say 'i'm at about 450 at the moment and starting to get symptoms', or 'I believe i'm at about 700 at the moment, i'm feeling great'. They would test me and sure enough, I knew my own levels.

    Yes... shock to the system being in the UK!

  • Hi Ausuk welcome to the UK.

    The NHS in this country is good at some things, unfortunately, PA and B12 deficiency is not one of them.

    Most GP's either don't know or if they do know won't give proper treatment, as you have found out.

    I hope you can solve your problem soon. Good luck.

  • Thanks beginner1!

    Yes, a bit of a shock to the system... but i'll figure it out ;)

  • Hi Ausuk,

    What a welcome to the UK! Unfortunately the health service is becoming a service but in name.... which leaves so very many people untreated and suffering much and naturally this negligence leads to a shorter lifespan. Sorry to say this but it is a fact.

    The negligence is not only directed at patients with B12 deficiency and pernicious anaemia, unfortunately. Patients with thyroid problems are suffering too and now the only decent drug for people having hypothyroidism (Liothyroxine - T3) is being withdrawn by NICE...the big Pharma have increased the price (such immoral greed) but equally they are lying about the important benefits of this drug and only allow Levothyroxine and similar (T4) to be prescribed.. This is a highly dangerous hormone (inactive that is difficult to be converted to active T3 in the liver then released to the cells).... and this inefficient treatment leads to serious cardiac problems, eventually. They are many other medical conditions whereby patients' symptoms and very real problems are totally ignored by GPs (one wonder if they are being paid to lie to patients...) who actually do their utmost to push antidepressants on patients!!! This is shocking when you think this situation exists in a western European country in 2017!. Perhaps you may want to return to Australia where they still look after patients...

    Thank you for wishing to help people to access better treatment and respect.

    Incidentally it is not too difficult to learn to inject IM. There are videos on Google, showing one how to do it. It takes a little courage to start with but that's normal. Gambit has given you very good advice on how to source ampoules of B12 and needles. If you wish to inject IM you will need 2 different needles: 1 larger one to withdraw B12 liquid from ampoule then a smaller (finer) needle to inject. You will also need to buy syringes.

    Do hope you will be able to obtain B12 ampoules and required syringes (3 ml capacity to allow to draw liquid properly) and that you will feel better soon. Let us know how you are getting on.

    Good luck and very best wishes.

  • JGBH, thank you.

    Your post was very thought provoking... I'm such an ignorant re the relationship between the Government, Pharmaceuticals, Health Organisations. I wouldn't mind learning a little more. In my fluffy head, the government only works in our favour... however I don't believe that's reality.

    Where do you get such information and knowledge from? It is a minefield to know what to believe and what not to.

    All of these responses gave me a boost to self inject (well I actually remembered that I know a vet... and she just did it for me and is happy to continue to).

    I came over from Australia with a large supply of B12, which you can buy over the counter there (sorry to make you sick). My GP gave me a small supply of syringes and needles and even trained my husband up in how to inject me, however he is working away for weeks on end.

    Thank you, thank you again for the time you've taking in responding.

  • Ausuk,

    You're most welcome. However I must point out I am not an expert in any field nor am I a medical professional. What I have learnt so far is thanks to the very many helpful members of this incredible forum: They have helped me enormously, giving advice, much needed support and imparting knowledge. So your thanks must go to them all really, but thank you for your kind words, and glad this has been of help.

    By being a member of PAS (pernicious anaemia society) and keeping in close touch with members of this forum you will learn a great deal if you are interested in getting more in-depth knowledge. As a member of PAS you will be able to access their library and many other facilities. There are many people on the forum who have been members for a long time and they really know their "stuff": administrators, but also ordinary members who have been forced to do research in order to help themselves in the hope of getting better when faced by unwilling and unhelpful GPs and/or consultants. It is hard hitting a brick wall mindset when one is so ill but the options are not great...

    The NHS institution is struggling to look properly after so many patients.... It is a very sad state of affairs. We, patients, most of us anyway, have had to fight to be prescribed B12 injections... it has taken me a year... but without the help from this forum I might still be fighting.

    So glad you have a stock of B12... If you wish to be independent your vet friend could teach you how to inject. I was taught by a nurse. it is not difficult at all, more scary in thoughts ... but it is up to you. Incidentally, one can buy B12 ampoules over the counter in most European countries.... sadly one needs a prescription here....

    With best wishes to you.

    PS: in answer to your question: What can we all do? : FIGHT for our right to much needed treatment by challenging (politely of course) GPs with the help of research and guidelines for treatment and of course sharing on this forum.

  • Thank you Ausuk for you kind sentiments . Yes there are many on this site who have been through terrible times . I have experienced the ignorance and downright hostility of the NHS ( this includes GPs and consultants ). I got my diagnosis eventually of PA from a private GP In a Nuffield hospital . I decided to self inject when my GP would only let me have one injection every three months ., by which time I was down on my knees ! I got all the info I needed from members on this site . But as you say , there are no end of folk out there who cannot access this forum .

    I inject into the muscle of my thigh . ( the middle outer 1/3 where the muscle comes closest to the skin) Use a long needle to draw up and then a very fine one ( 1 inch long and 25 gauge ) to inject. . I need to inject every week . Cost? About £1.00 for needles , syringes, swabs and B12 ! . I buy in bulk -to keep costs down -100 of everything , including B12 ampoules from versandapo de in english The ampoules have a very long shelf life so you can order 100 . . Watch videos on utube . I have my own theory as to why we cannot get the right treatment for PA in the UK . Whatever , --- we come up against a brick wall with the NHS . You must feel like returning to Australia !

    I did tell my GP that I self-inject . She was very much against it . Could be toxic she said ( we know it's not . There are scientific papers on this -Dutch ones ) Most people don't tell their GP because of ensuing hostility . Trouble is that GPs then think that the treatment they give is adequate. !'m sure that one day we will get the treatment we need - but not in my life time .

    So start self - injecting asap ! and feel well again . Don't let it drag on . I have managed to get rid of almost all my symptoms ( left with burning feet . But they are no longer numb)

    Best of luck with everything Come back here for any questions / info .

    Very best wishes to you !

  • Hi wedgewood,

    Thank you so much for such a friendly reply.

    Well, since reading all of these messages, along with your encouragement, I went around to a friend's house who happens to be a vet... and she injected me! She is happy to do it regularly for me, which is fab.

    I came over from Oz with a large supply of B12 (which you can buy over the counter there), along with a couple of needles and syringes. Once they run out, I will certainly be purchasing more, so thanks for your recommendations.

    Interesting that you got you PA diagnosis from a private hospital. Out of interest, who do you recommend I ask to see? A private Heamatologist, a private Gp, some sort of private specialist etc?

    I would love to get a diagnosis in this country. Just bizarre how I am undiagnosed since landing here.

    Thank again so, so much for your encouragement. Appreciated

  • Facebook group: pernicious Anaemia/B12 Deficiency- Support Group

    Over 15,000 members. Excellent information from informed people.

  • Great, I will have a look.

    Many thanks Erolyn

  • I think there may be (private) Functional Medicine practitioners who can give B12 injections. There may not be one in your area though.

  • Thanks Frodo,

    I'd certainly like to persue seeing someone. Do you mean a private GP?

  • If you google it you'll find out more: they try to find out the causes of health issues, not just treat symptoms and look at diet, lifestyle etc. I think some are GPs as well as being qualified in Functional Medicine - or it can be called Ecological Medicine here in UK, so that combination would be ideal I should think - although I haven't seen one myself. There's a British Society for Ecological Medicine and they have a list of practitioners which will tell you if they are also a GP and whether they can give B12 injections (which may be methylcobalamin). Just a suggestion to look into, not a recommendation - not something I've tried myself. Yes, it would be private.

  • Fantastic, thanks. I've never heard of them before.

  • Hi,

    Possible ways people could spread the word about B12 deficiency in UK.

    1) Giving GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    2) Putting up posters

    pernicious-anaemia-society....

    b12deficiency.info/posters/

    3) Making sure MPs know about B12 issues.

    parliament.uk/mps-lords-and...

  • oh sleepybunny I downloaded posters and took them to my gp.............. no sign of them on the noticeboard. I also contacted by usually helpful mp but was told it was a health issue and I was directed elsewhere.

  • Sleepybunny thanks,

    My GP is a no go, he's not high up enough in the surgery to care or make a difference... however my local surgery apparently does have a 'community night' where patients can get more involved in the running of the practice. I just wonder if i'm brave enough...

    Love the poster ideas. This is perfect!!! Many thanks

    Will ready the links you have given and make some steps forward

  • Hi Ausuk, many people it seems in UK have have to go down the self injecting route. I get one injection each week at surgery and self inject a further 1 or 2 times weekly as I have severe neurological symptoms. I would not consider informing my doctor in case my injection at surgery was stopped. My GP only agreed to once weekly after I had seen a Neurologist who prescribed this routine otherwise I would have been on the 3 monthly route which would have been disasterous. Without the information from researching the posts and links on this site I would have been lost.

  • Yep, superb to have this website as a tool.

    Well done for getting any injections from the NHS... seems a painful battle!

    I hope you are seeing some real improvement now.

  • Thank you, I have had a little improvement with some of symptoms, less frequent electric shock feelings in hands, palpitations less frequent also but the feeling of either numbness or burning in feet and toes and feeling of feet and toes being stuffed with cotton wool has not gone away. I had hoped for better improvement. My symptoms seem to have a cycle to them, for example I get blisters and stinging tongue then it clears in a few days but comes back about four weeks later wondering if anyone else feels their symptoms have a cycle. I sometimes feel I am never going to recover. If b12 treatment is left too long I worry this may be the case.

  • It sounds like you're on the right track and although worrying, because u r happy to self inject, u dont have to soley rely on your GP.

    It's a sad, but very real thing that we all now HAVE to tale matters into our own hands.

    I can't offer any advice sadly. My symptoms were/r very different from yours. Extreme exhaustion and utter mental meltdown, anxiety, shaky, nervous, thinking I cant carry on (which is very, very out of character for me). Once I reach about 200 or below, I have full body seizures, like grand mal.

    I guess it will take time for your body to repair. Best of luck potter5

  • Thank you Ausuk, day at a time I think, but that's fine and I hope you continue to improve also. When I was diagnosed last year I felt so alone and desolate, I don't know anyone who has any of my symptoms and like many people on this site it is all a learning curve and really good to share information and meaningful advice. Best wishes.

  • well take care about letting your gp know. I did, and got shown the door, I feel just like you and worry about all the people who cant fight for b12 and I long to ,',spread the word',. I have been told by my gp that no one else in my surgery wants or needs b12 - but I have found that to be totally untrue.

  • Yes, this is me too, wanting to spread the word. What nonsense from your GP.

    I think posters are the way forward for me initially.

    I will take your advice... there's no need to tell my GP. He isn't prepared to work with me, so nothing can be gained, plus, if I took a daily or weekly multi vitamin, I wouldn't be telling him anyway!

    Thanks for responding

  • Hi Ausuk

    I self inject once weekly, buy in bulk b12 (100 amps) at a time online from Germany. I have pretty much given up with trying to reason with the NHS, I had even changed doctors surgeries to no avail.

    Just over a year ago I was at the point where I actually thought I was dying (I literally felt that I had very little time left), My Surgery (two different doctors), basically said that there was nothing wrong with me and wanted to prescribe anti depressants.

    I trawled the internet trying to find answers to what was happening to me and firstly came across Dr Chandy, whom after completing their online form, he contacted me, after speaking to him for an hour, he advised that I should not wait any longer, I needed to self inject (and I know that there is some controversy over this, that maybe I should have perused further the NHS to get diagnosed, but in my eyes this was not happening), I was Desperate, As far a I was concerned I was physically dying a slow horrible death and I need help anywhere I could get it, and that was Dr Chandy at that point in time. I then found PAS and this forum, and although I don't post often, I read and learn from everyone one on here, as they are such a knowledgeable, Sanity saving and lifesaving group of people.

    I changed Doctors, and where I thought initially that they were going to be helpful, they are not, I have not told them I am self Injecting, they think I am Taking High Dose B12 Tabs and was told to STOP taking them immediately.

    The trouble is I feel I am now in a catch 22 position, I cannot get any help or support or anything diagnosed from the NHS unless I stop completely, and it would probably mean that I would have to wait a long time for me to get back to being so ill again for the NHS to maybe be do something or maybe not, I am not prepared to let my health suffer to such an extent, I need to self inject for my health and my sanity.

    I am now under a neurologist and there are probably other underlying issues that need to be diagnosed as well, but everything is such an uphill battle, I had my first appointment with the neurologist in Feb this year, to which he agreed that there was something wrong with me (he doesn't know what), my second appointment is in September???

    The NHS and Pharmaceutical Companies, I feel do not care when it comes to low cost treatments B12 and are only interested in Money & Politics.

    I will continue to self inject and at the same time try and get diagnosed with remaining symptoms that I continue to have.

    so Ausuk, hope this along with all of the other responses are helpful in your understanding of UK health care in this field,and good luck in your own battle xx

  • Hi AngelaJG,

    Many thanks for your response. I really appreciated what you wrote, especially coming from someone that doesn't usually write on here (i'm one of those people too)- so thank you.

    I can very much resonate with your situation and most certainly to your 'catch 22' situation... that's me... and that's exactly the decision I felt torn with... but I just couldn't let myself get too low again, as day by day every around me seems to fall apart! The strain it put on my relationship with my partner and 3 year old is horrible, and quite frankly cruel if there is no guarantee of help.

    It sounds like you've had a tough time. I am feeling like i'm just not prepared to 'fight' for help any longer, hence self injecting.

    You comment about having to wait 6 months between appts.... crazy times. How oh how can people improve and move forward with their health if waiting times like this exist... in turn causing the NHS more time and money because people deteriorate etc.

    Just on the off chance you are seeing a Neurologist in Southampton, I have an excellent recommendation for an NHS one there.

    I know what you mean about long waiting lists... I have been referred to the allergy clinic and am on a year's waiting list!

    (Btw, please don't think i've come over from Australia to use up NHS resources. It's not like that... I was born and brought up in England and have just returned after been in Oz for 10 years).

    Wow, so you were one of the lucky ones to experience Dr Chandry before he got put out of action. I so wish I could meet with him, but I guess I will have to find an alternative. It just breaks my heart thinking of all those people that never get such bold and honest advice as Dr Chandry gave to you.

    Thank you again for your time and personal response.

  • I had exactly the same thing with my GP when I came back from Gibraltar, going down the private route is really expensive​, worked out about 500 to get a 30ml bottle including consultation etc. In the end I self medicated, told the GP and he referred to haematology who just said I needed it every two months which I now get to self inject from the GP. I also get supplies from Germany and do it every two weeks myself.

    Best solution in the long run

  • Really good to know, thanks br74649. I'm following in your footsteps! :)

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