Read the guidelines!!!!!!!

My GP is refusing to give me injections more than every 2 months, even though I am still really suffering with all symptoms in between time. I wrote to my practice manager and quoted and referenced guidelines and received a reply from my GP stating she had not heard of the treatment I spoke of (all I quoted was the bit about injections every other day until no further improvement). I am not sure how she can say she has not heard of it when I referenced NICE, BNF and BCSH. I am a student midwife and NICE is our bible - surely all medical professionals are told to keep up to date with this and read up if unsure how to treat something. If she had looked at the references I listed she would have seen what I was talking about. She has now referred me to the haematologist after my letter and states she will change my care if the haematologist states it needs doing - sadly the haematologist told her that I needed a max of 3 weeks of loading doses and if that did not improve my symptoms then those symptoms are nothing to do with my pa (no talk about investigating what is causing them though). It is annoying me that my neuro symptoms are worsening and the GP does not care. If things continue to worsen I could find myself unable to practice a s a midwife (numb hands and being in a wheelchair will make it impossible). How can completely wrecking people's lives by refusing to treat be part of the job description of a GP

I also mentioned my son's symptoms and that his serum B12 was within parameters but his mma and homocysteine need measuring and nothing has been said about that - they have ignored all comments about my son in the letter. Today I am booking an appointment to see another GP with him and will have the guidelines with me when I go.

I am not taking sublingual treatment because I do not want to skew my levels before seeing the haematologist and gastro (and have heard so many people say they are rubbish). I will not order B12 injections online because hubby has refused to accept that I can get them from a recommended pharmacy and states I do not know what I am injecting myself with if it was ordered online. This means I am completely reliant on the care of my GP which should not be a bad thing, but sadly is. Hubby has even been dreaming he has sued the practice for wrecking my career. He knows I am scared that I am going to have my career cut short - I have waited 27 years to do this degree and am looking forward to having the career I have always wanted.

I really do not understand why doctors are so unwilling to accept the treatment their patients need - it would save money in the long term because they will not be referring to specialists and having to see the patients so frequently themselves if they treated it correctly (and will avoid litigation for refusal to treat). I also asked my surgery to allow me to self inject and they sated it was too difficult (hello student midwife - I give IM injections all the time) then told me drawing up in the community I not permitted).

We looked at going private but were told by others that have tried it that it is a waste of time because you see the same drs but just pay for the privilege).

What needs to happen before the medical profession wake up to the facts?

25 Replies

  • Well, it sounds like you've already supplied all the documentation your doctors need. However, you can lead a doc to info, but you can't make them think.

    I would get in contact with the PAS and see what they say.

    If you're having jabs every two months then it's likely that your B12 levels will be artificially high anyway. So supplementing with sub-linguals or skin patches won't make the levels move from low to normal, but from high to higher. If they make you feel better it's probably worth it.

    As for your husbands fears about foreign B12. The people in Germany don't seem to have any problems buying their B12 from - and nor do a lot of us Brits.

    As for self-injection being not permitted - what the bloody hell do they think diabetics do??

  • but they would argue diabetics do not draw up anymore as they have ready filled pens plus theirs is subcut and I am asking to administer myself an IM injection (I have no problem with injecting myself and have experience of administering to others so what is their problem).

  • 3 weeks since my last injection and I have reached the worst symptoms again already - dizziness and shaking. The chronic fatigue and tingling never goes away but the tingling is now spreading and I have other symptoms in between injections too. All I want is for my GP to give me what I need and allow me to do it myself as I attend uni and work 25 miles away from my home and GP so appointments is a nightmare.

  • oh and I am definitely contacting PALS.

  • email sent to PALS.

  • Sorry - do you mean PALS or PAS (the sponsors of this forum). Suggestion was that you contact the Pernicious Anaemia Society, rather than the Patient Advice and Liaison Services (suspect PALS is likely to end up in being passed from pillar to post.

  • realised that after - oops. Been in touch with PAS and have emailed PALS today so have doen both ;-)

  • saw from another response that you had been in contact with PAS - hope they can help you

  • "It is annoying me that my neuro symptoms are worsening"

    Have your potassium levels been checked? Some patients experience a drop in potassium levels when they start to supplement B12 (Hypokalaemia).

    Have you had folate, ferritin and full blood count tests recently?

    If MCV and MCH are high it can indicate a lack of B12 and/or a lack of folate.

    Are you on any other medication? Some drugs can affect uptake of B12.

    Rest of the website has lots of useful info.

    fbirder's suggestion about contacting the PAS is a good one. They are sympathetic. If you leave a message they will get back to you within a few days.


    01656 769467

    You may find Martyn Hooper's blog interesting. He's teh chair of the PAS, sadly your experiences are not uncommon.

    "oh and I am definitely contacting PALS"

    My experience was that PALS were not able to help. They will listen though.

    Other possible sources of help

    MPs can be helpful in getting answers from officials.

    A UK charity that offers free second opinions on treatment and diagnosis.

    020 7935 8366

    Your local CCG or equivalent organisation in Wales/Scotland/NI might be able to tell you if the BCSH Cobalamin Guideliens are being followed in your area.

    As far as I know each area of the UK has its own regional guidelines on treating and management of B12 deficiency. Some of these guidelines have not been updated since the BCSH guidelines came out in 2014.

    A google search, a search on local NHS website or a FOI request to local NHS website might locate them.

    I wondered if perhaps your Gp was following local guidelines that have not been updated for a long time.

    Has your GP seen the recent BMJ article on B12 deficiency?

    This was one article that my GP showed some interest in.


    "Could it be b12" by Sally Pacholok and JJ. Stuart

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn hooper

  • I'm not a medic, just a patient who wants people to have the info they need.

  • I have not had potassium levels checked and have had no further blood tests done since starting the injections - apart from serum B12 because occupational health have requested I have tests done every 6 weeks so they can see if my levels drop when I am working with nitrous oxide (I know that will tell them nothing - it should have been active B12 that is tested, not serum B12). I am on 5mg folic acid (despite guidelines stati ng a person with malabsorption of folates should be on up to 15mg - I was diagnosed with that in my teens) and I am on ferrous fumarate. I am also on vit D and citalopram.

    I have spoken to Martyn on the phone and have written to my politician who quoted info about B12 and said he would try and get a question raised about it.

    My GP has not seen that article but I will print it off for the haematologist.

    thank you for all your advice.

  • Sorry to hear about problems.

    IM injections aren't the only options and it is a shame that the medical profession is fixated on treating B12 absorption problems with IM injections. Whilst the transfer from IM is, going by research into retention and absorption that have been done in the past - sub-cutaneous is also an option - and would make the use of a pen a distinct possibility. It might mean that more actual B12 is needed but as the main cost in the current administrative regime is actually the time of medical professionals the relative costs mean that self administration by this mean would still result in huge savings to the NHS - and even if people need it much more frequently (myself included) - the costs would probably end up being quite similar - and the savings to the exchequer in terms of not losing tax revenues and having to pay benefits because people are unable to continue working as a result of the failure to treat them properly would more than out-weigh the costs in these circumstances.

    Penny pinching gone mad.

    Your husband's attitudes to buying from foreign pharmacies does seem a little OTT - he is presumably quite happy to buy over the counter medications from UK pharmacies - and probably do so on line - and the same standards would apply to a pharmacy in Germany as they do in the UK - the only difference is that injectable B12 isn't caught up in the stupidity of having decided that all injectable substances must be prescription only that applies in the UK - which also means that you can't source injectable saline in the UK either without prescription.

    Even forgetting about injectable B12 for a moment it may be worth looking at other forms of supplementation - eg nasal spray works very well for me ... and nasal is increasingly being used as an alternative to injections for delivery of vaccines etc ... or the sublinguals or even skin patches. It may be easier and more effective than wasting time and energy battling doctors and the NHS who just seem to have a blind spot when it comes to B12 - possibly because it isn't a nice neat package like other long term conditions - though reality is that even conditions with very similar incidences such as diabetes and thyroid aren't necessarily as straightforward as many medics would like to assume.

    At the end of the day I think it is probably as much down to the attitudes of most medics which tend to be arrogant and dismissive that is at the bottom of the problems - unwilling to listen to or work with their patients ... what is needed is a climate of mutual respect because without that there isn't trust and that is when everything really goes to pot.

  • I agree I have had to constantly fight for medical treatments for my family and I have been right every single time (my older son's lactose intolerance, my younger son's inflammatory bowel disease, my older son's autism and learning difficulties and now mine and my older son's pernicious anaemia). Medics have denied my claims at first then eventually I have managed to be proved right. As a future health professional myself I would not be wasting the GP's time if I wasn't really concerned (plus I do not have enough hours in the day to be dealing with the GP quite frankly so given the choice I would not be there).

  • I have been in your situation. I have idiopathic B12. No push to investigate why i dont absorb it but i dont.

    Had symptoms 3 weeks after my loading dose and my doctor was trying to send me away with antidepressants!!!

    I read up on everything i could find (check out the guidelines in the netherlands!!!) And went back with my boyfriend and this time he tried to put me on anxiety tablets. I am a Dental Therapist and give complex intra oral nerve blocks so IM is a piece of cake to me!!

    I left the appointment feeling crazy. Even though the evidence they provide is out dated they are ridgid about it. I had to ask myself - did I want to entrust someone with my health who would willingly put me on antidepressants or bloody beta blockers instead of a vitamin i cannot OD on?????

    Thankfully my boyfriend is amazing and encouraged me to buy online. B12 is liscenced in Europe. Theres even a charity that provides it.

    You know ur own body. I still dont have a proper timescale i need B12 - I needed it more this Autumn only been diagnosed for a year

  • going to work on hubby

    I know it is because he cares and does not want me injecting something that is a poison and he does not trust online retailers (I will explain it is another country's version of Boots)

  • I have just asked if he would buy vits from Boots online and he said yes so I explained buying from a foreign pharmacy is the same, it is not buying from ebay or something similar. Anyway he went a bit mad and said I am not to buy from another country as I do not know what I am getting, he just won't see it. I asked if he would go to a pharmacy while abroad and he said no as the regulations are different abroad. Looks like I am not going to win this one.

  • You can tell your husband that German online pharmacies are absolutely above board . They are controlled by the German Health Authority , which is incredibly meticulous . The Germans have a reputation for strict adherence to rules and regulations , which is not always endearing , but in connection with online pharmacies is very reassuring . I have used them for over 2 years since I could not get the treatment I needed from my GP for my PA symptoms They give a marvellous service and have saved me from a life of misery . God bless them .

  • Things have changed since I wrote this - I do order from the German pharmacies and he is aware and supports me.

  • I'm really pleased for you .

  • This comment might be a bit out of left field... But referring to giving yourself IM injections, how would they feel about your husband giving them to you instead? (And how would you feel?)

    Back in the 90s I did several IVF treatments which required injections every day for (I think) a couple of weeks. Since they had to go into the buttock my husband was taught how to do them by a nurse at our surgery, and he did them for me.

    I'm sure that IVF treatment has changed since the 90s. But I can't believe it has changed so much that injections are no longer required, so there must be other couples doing what hubby and I did.

    Oh - forgot to mention - the injections involved mixing several ampoules and saline, just like a nurse or doctor might do.

  • They would not allow hubby to do it because they said they do not want people drawing up in the community. As for hubby, he is squeamish and could not give me an injection - I'm sure my kids would love to though ;-)

  • "occupational health have requested I have tests done every 6 weeks so they can see if my levels drop when I am working with nitrous oxide"

    Have you seen this information on nitrous oxide?

    I had severe problems within weeks of having "gas and air" during chidbirth. Looking back I think that nitrous oxide inactivated my B12.

    The sad thing is that no-one at any point in pregnancy warned me that prolonged exposure to nitrous oxide could be dangerous. I feel quite angry about this.

    This link says that there are no side effects to receiving "gas and air" in childbirth which is at odds with what the link says.

    "my older son's autism"

    There is a chapter in the book "Could It Be B12" by Sally Pacholok about possible connections between autism and B12 deficiency.

  • I have just written a reflection that included reflecting on when to warn a woman about the effects of NO with abnormal blood results in the antenatal period (I was asking the question should I tell her before positive deficiency results or wait for someone else to do it if her results show she is B12 def).

  • What occy health are trying to check is whether the NO affects me as a professional in the room.

  • The medical community has been taught that we don't need extra vitamins. If, on the rare occasion, someone does need some sort of vitamin, then that patient need only use them for a short time. There have been one or two questionable (stupid half *****) studies done that come to the conclusion that no one needs extra vitamins.

    I might be niave, but I don't think that big pharma is behind it. I think that medical science really has just never taken the time to understand how vitamins and minerals are broken down, used, and in many cases lost along the way by the body. It doesn't help when governments, like the one here in the U.S., set the amount of each vitamin needed by the body each day at a fraction of what it really needs.

    There is a little headway being made, for example, they ARE realizing that most of us are D deficient, even when we get sun. Iron they have been on top of for awhile, maybe because they test the hemoglobin for blood donations. Hopefully they will really do long term research in the area of vitamins and minerals before we all drop down dead.

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