how to talk to the gp

[jillc39]

I am desperate to have a B12 injection before 12 weeks - gp says come back then! I have tried to supplement with a spray - considering patches - but if I order b12 injections from Germany should I tell my gp????

[Hidden]

Why do you want to tell him. I'm in same boat for 18 years. I have to do extra b12 injections myself or have a slow death on nhs. Do you think they care.

[Jose651]

I don't bother, for one simple reason, they are not interested.

I'm just a number.

J

👍

[Gambit62 Administrator]

I don't think I've actually spoken to my GP since I started treating myself. Have mentioned supplementation to a couple of the nurses who do shots but one looked at me like a mad person - the last seemed a little more interested but also by comments showed a degree of ignorance that whilst not quite living down to my expectations, didn't come as a shock.

To be honest I only go back for injections to keep things on my record for future reference, though the reality is that I need so much more B12 than I'd get on the NHS that I'd probably be dead in a year or two.

I think it really depends on the relationship you have with your GP - which sounds as if it isn't one based on mutual trust and respect at the moment. Great if you want to try and work at that - or find a GP with whom you can develop that sort of a relationship, but I'd more than understand if you didn't want to.

[Hidden in reply to Gambit62]

I also only go to keep in the system, however I didn't go once fo 5 months and they never got in touch to say oh you need your b12 shot. So see if the levels of b12 drops they don't care , but if its 2000 they are all shocked.

Horrendous treatment. Better down the Vet's. I wouldn't wait for none of them.

[Lisahelen]

Like Gambit i intend to keep my quarterly appt just so it keeps it on file. I have no intention of informing my gp of my additional topups as when i mentioned originally i was using patches i got the utter disdain reaction. If in the future they deign to give me a blood retest for b12 i shall politely say no, as there would be absolutely no point.

[wedgewood]

I totally disagree with people who do not tell their GPs that they have to self-inject B12 to keep well. The NHS then believe that the 3 monthly regime is satisfactory, AND IT IS NOT FOR MANY PEOPLE! So, PLEASE ,PLEASE, self injectors tell your GPs that you do so. It is not illegal. I think it is illegal and immoral to withhold B12 injections from people who need them. I have an acquaintance who self-injects who didn't tell her doctor . I have finally persuaded her to explain what she has to do,to keep her health. I have told mine from day one. Think about it, do.

[Gambit62 Administrator in reply to wedgewood]

In general I don't self inject but I supplement in other ways.  I have told my mother's GP that she is being treated with alternative supplementation but really not sure of the extent to which he has taken it in.

The last time I spoke to my GP about B12 I walked out because, although he was caring, he really wasn't listening to me and was just dismissing everything as nothing to do with B12 and pushing anti-depressants ... and I haven't had an occasion to go back to him.  Sometimes there is only so much beating your head against a brick wall that you can do.

I have seen other GP about issues to do with menopause but B12 hasn't come up as an issue and the 'one issue per appointment' culture doesn't really make it possible to bring up other factors.

Totally agree that if nobody says anything then GPs are never going to learn but when they won't listen I'm really not sure what you do.

[fbirder]

I told my GP. But I'm lucky enough to have a sensible doc. He was a little doubtful at first - when I told him I bought it from amazon.de. But I explained it was just like me buying B6 tablets from Amazon.uk - he was even more surprised when I told him that I got syringes and needles from amazon.uk

One thing I'm glad I did was to tell the nurse that administered my loading doses. She offered to show me the correct way of preparing the jab and where to do it.

Wegewood is correct. If your GP knows that you're desperate enough to stick needles in your legs then they'll be more likely to believe it is a serious matter.

[JoannePA]

I agree that we should tell our GPs but I have to say my surgery have treated me with such disdain that I have no trust whatsoever any more and I am sure they would just see it as another sign that I must be the hypochondriac they are thinking! This is especially the case as they say that none of my symptoms are b12 related but they are all on the list of symptoms as per the pas. If you ask them why has it improved, they will say it is the pacebo effect. All i can say is this placebo works well lol.

I know that I am getting some b12 to self inject and I have no intention of telling my doctors as they would not report it to try to change future treatment or try to learn from it, they would simply use it to ridicule me or misdiagnosed me further. After 3 recent big misdiagnoses the last thing I need is further horrendous appointments and I don't think I am alone. I did used to trust them but now, the doctors are only any good as pill dispensers I am afraid (oh yes and that is only after you have diagnosed yourself)!

[catherinejordan]

They didn't listen or care when I told them I buy my own and self inject. I was told no one has them more often than 12 weeks so what makes me so special!

Then I had a colonoscopy and consultant, wrote to my GP for monthly jabs.

Amazingly they have no record of speaking to me like they did.

so no don't bother telling your doctor

[Sleepybunny]

I have told my GPs that I self inject because for many years I was not able to get treatment from NHS. I told them because I felt it was important for them to know why my B12 levels are so high.

[jillc39 in reply to Sleepybunny]

my gp went mad when I talked about self injecting...... but didn't offer to speed up my b12 injection which I really need.

[deniseinmilden]

I have told my GP and asked him to log it and the other things I take on my health records as I desperately need them every day and hope that if I had an accident and ended up in hospital they might look it up and give me something to keep me alive - or at least ask someone about it!

I also have it on my phone under the ICE details.

Some people have suggested getting a B12 deficiency tattoo for the same reason. Or you could wear something with your medication needs. It's a good idea to email some relevant people the details too so they can easily look it up and ensure you get what you need.

[Lisahelen in reply to deniseinmilden]

Like the tattoo idea lol

[clivealive Forum Support]

I agree with Wedgewood. Who knows whether i or anyone else is able to talk our doctor round to seeing sense or at least do a bit of research, that it will help the next P.A. patient get the treatment they need and deserve? Even if you don't "win" at least you've made your stand if enough people do it that message will eventually get through.

During the 45 years I've had P.A. (on cyanocobalamin 1000mcg every four weeks) not one of my doctors down the years has ever asked me how I'm coping with it whenever I've had an appointment for whatever other reason and when a couple of years ago I "complained" to my current "one size fits all" doctor about my symptoms in the run up to my next injection he said "It can't be the P.A. because you're having your b12 shots every month" and was adamant that I had to do what it "said on the tin".

I then joined the PAS and my first question on their forum was something like "am

I the only person in the world who gets symptoms like this before their next injection?"

I was astounded at the number of responses from "fellow sufferers" in the same boat.

I went back to my GP and confronted him with the advice I'd gleaned from PAS and the many useful comments on this site and my prescription which previously said "One ampule every for weeks" now reads "Use as directed" and it's me who does the "directing".

So, there is life after P.A. and I'm still "clivealive" coming up to 75.

[sweetnessandlight]

I compromised on this. I told my gp that I would self inject if I didn't get more, and that is on my record. She didn't so I did. It is your body and your health. I made it clear that I wanted to work in partnership but needs must.

[jalbey]

I also went to a GP armed with printouts of information provided in links quoted on this site, when I was feeling very unwell in the run up to my injection. She insisted on the usual blood tests. The results were pretty much as usual but it was agreed that I could try having the injections 9 weekly which has helped. Read up and know your stuff and try again when you are feeling up to it. Try not to go when you are wound up!

Unfortunately fuelled with more energy I have really over done it and haven't got the mental energy to find the links for you. Maybe someone else out there can do it?

[fbirder in reply to jalbey]

"Unfortunately fuelled with more energy I have really over done it and haven't got the mental energy to find the links for you. Maybe someone else out there can do it?"

I sure can. And you only need the one link....

frankhollis.com/temp/Summar...

[wedgewood in reply to fbirder]

Thanks a million. I have printed out a few copies of this. It will come in handy! 

[DAVIDCS]

I told my GP and he then refuse to take anymore blood tests as he did not know what I might be putting into my blood. I change my GP and have not told the new one I self inject.

[Lisahelen]

This question has certainly generated a lot of posts which fall as a 50/50 split. I think a lot of it seems to be how you get on with your gp regarding how they are treating the condition. I said i woundnt tell my gp but that wasnt because i didnt want to it was because they have completely ignored anything i have said about b12d and the fact that they refuse to even treat as per guidelines.

Excuse typos wont let me cancel spell errors without deleting whole sentence!

[ryliegirl]

To JillC39, I would NOT tell my GP anything that he doesn't absolutely need to know.  They do not like us to take action on our own, and, he will use this as an excuse to not see you.

[jillc39 in reply to ryliegirl]

grateful for your reply and indeed for all the comments.  seeing my gp later today....

[ryliegirl in reply to jillc39]

I hope everything goes well.

[pugdogs10]

HI

I do understand your dilemma because I am in a similar position myself at the moment, it is very tempting to do your own thing and not tell because you do not know what the reaction may be. I do how ever think we have an obligation to go through the motions and try and raise awareness. Even if this fails and you still end up self injecting you will have tried and this is very important for lots of other people, maybe even your own children in the future ( it is hereditary). Good luck with whatever you decide.

[jillc39 in reply to pugdogs10]

thanks for your support.  Think I will gather my courage and tell her.

[jillc39 in reply to pugdogs10]

what can we do to raise awareness?

[fbirder in reply to jillc39]

Join the PAS and set up a regular donation (just a quid a month helps) pernicious-anaemia-society.org

Buy two copies of Martyn's book - amazon.co.uk/About-Pernicio... - one for you and one for your GP.

[littlecarol]

It took about 10 years of suffering and being treated for gastro problems, before I was eventually diagnosed with B12 deficiency.  I found 3 monthly were not enough and it took about 5 years to get the Doctor reluctantly to allow me 6 weekly injections.  Even after that, I felt it was not sufficient.  I resorted to trying out the Methyl patches and I could not believe the difference it made to me in one day!.  Even though, I have still resorted to self injecting the hydro as my body needs it about every 3 weeks.  The 3 weekly hydro injections and regular methyl patches keep me feeling normal.  I feel I need both as they seem to provide different benefits to my body.  I mentioned the patches to my doctor and nurse.... but have not admitted to self injecting and still attend my regular 6 week apt.  They would not listen...as they didn't for years when I tried to explain I needed more, so I am taking care of myself now.  After all, it is my life and I know what my body needs and when it is not feeling right.  Do what you feel is right for you! Good luck

[jillc39]

back from gp - NO to earlier b12 injection - NO to getting B12 via the Internet - NOBODY has earlier injections, she said. quoted friends on this site - but sent away with increased doseage of gaberpentin and her promise to consult colleagues. oh dear.

[Sleepybunny]

Hi,

I have read that some antiepileptic drugs might be associated with a fall in folate and B12 levels. See link below.

ncbi.nlm.nih.gov/pubmed/212...