Was diagnosed with PA 2 years ago and found I'm suffering with late diagnosis symptoms. Loading doses made me ill. Was put on 3 monthly injections with little effect so they were made 2 monthly. Still no better, only slight improvements. Been retested several times sometimes a week after injection (what's the point in that?) and eventually put on monthly injections. Started to see a real improvement for almost a year then last month the practise nurse asked if I'd been retested recently with a view to reducing my injections. I confirmed I had and was subsequently kept on monthly jabs but she said to book with someone else next month. Booked this month with my GP who was instantly off hand with me as soon as I walked in. I had been left in the waiting room for half an hour then she rang down for me and when I went in she snapped that I was late. I told her I arrived early and had been waiting but she carried on being quite aggressive and said I was late, it was my fault and I was messing up her schedule and she didn't have time to see me really but as I was there what did I want? I told her I was there for my jab (which she had prepared ready) and which arm did she want, to which she said 'What? WHAT?' 'Oh right arm' and she walked over and rammed it in my arm and made me squeal. She then went on again about how I was late so I apologised and said her buzzer hadn't gone off and I hadn't realised. She too asked if I'd been retested recently so I said yes, in the last 6 months, kept on monthly jabs. She said 'Yeah, so you geta bit fuzzy sometimes and feel a bit tired. I don't think you need these jabs that often' I was aghast and told her there was much more to it than that and this is the first time in years I'd felt anywhere near normal. But she just went 'Pffft'.
What am I supposed to do? Anyone else had this kind of attitude - I mean are the jabs expensive for them? I can't help it that I need them. A previous senior doctor (now retires) told me it was a serious condition and must be taken seriously too as it was lifelong condition which would require lifelong treatment. I am coeliac and have IBS so tablets I'm told won't work for me. I have a family history of PA, my grandad had it and had monthly treatment and his mother had it too. I haven't booked my next jab as I'm upset and confused at the way I've been treated on the last two occasions. My GP is also a partner at the practise so I'm afraid to complain. Sorry for the rant, I just need advice.
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easter_bunny
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Oh, that is awful treatment. That GP was a jacka**! Yes, the injections are very important and missing them can cause your symptoms to return (as you already know). There are a lot of doctors who have been misinformed about B12. It has to do with the discovery and history of B12. When injections of B12 were first formulated it was a very big deal, but it also quickly became a go-to remedy for all kinds of things. It subsequently got labeled as a placebo because one vitamin couldn't possibly affect so many different ailments. (Little did they know just how many systems in the body are affected by B12.) And so there are many doctors now who have come up being told that B12 isn't that special and that the people who ask for injections are malingerers. The reality is that a prolonged deficiency can cause permanent disability and, if that prolonged deficiency is never treated, it eventually leads to death.
Regardless of whether you decide to complain, you should go ahead and book your next injection. If nothing else it should demonstrate that you are not going to let yourself be frightened off from getting a vitamin that you need. Honestly though, if you have a chance to see a different doctor in the future, I'd take it. Who wants to be treated so rudely and then basically assaulted?
I have confirmed neuro symptoms - I fall a lot and have poor co-ordination now and brain fog is an understatement! and many other related symptoms. It was quite a revelation to find I wasn't going mad when I was first diagnosed and these were all related. The GP also said on last week's visit that it is very rare for PA sufferers to need injections more than every three months which I know is untrue as hospital told me it depends on the individual and also from reading forums it appears quite the opposite. I live in a village so have limited choices where to get them and the nurse and GP are the only ones who administer them at my practise apparently. Thanks for the reply though.
Its awful to suffer with this, I also feel the same but tests show I am OK believe me I'm not, asked the doc to increase the treatment only to be told to much b12 can be toxic. I find the b12 nazal sprays helps this can be found on the Web. Worth a try.
This is a terrible story. It is bullying and should not be allowed. If you can change to a different practice then do so. Why don't you get in touch with the PA society and tell them this story - they may have helpful advice about how to deal with this.
Office open between 8am and 2 pm every day except Sundays.
"are the jabs expensive for them?"
No, a hydroxycobalamin injection costs about 60p approx.
The BNF (British national formulary) Chpater 9 Section 1.2 gives info on treatment for B12 defic with and without neuro asymptoms. BNF is copyrighted so can't reproduce info but this link contains similar info.
Info on treatment is also in "BCSH Cobalamin and Folate guidelines"
I copied the whole document and gave it to my GP. In my opinion its well worth reading. The PAS have a summary of this document in the library section on website.
Complaining
Sadly sometimes those who complain get labelled as "difficult".
Do you have someone you can take with you when you next have an appt?
Someone who is sympathetic and who understands B12 issues? My experience is that medics are sometimes kinder when there is a witness.
"Loading doses made me ill"
Sorry to hear that. how many loading doses did you have?
"What am I supposed to do? Anyone else had this kind of attitude"
Yes. I've been shouted at or snapped at by GPs and consultants. I had a nurse who I had complained about, ram an injection into my arm . I was in shock for a long time about how I was treated. These days I'm surprised when a medic is kind to me.
Definitely take someone with you if you must return to that practise - and be amazed at the change of personalities and your treatment. Don't stand for such bullying. It is bad enough to have to deal with this condition without being punished for needing treatment. Crazy!
I have heard of this very recently from a friend at Art Class. Her hubby also has another condition involving the blood, and has found the B12 very helpful. They are now talking about reducing his injections, both she and her husband are very worried about the effect this might have on his overall health. I just wish doctors would find the time to understand it properly, before they make judgements. MariLiz
Thank you everyone for all the help and support, it really means a lot as I felt a bit isolated. I only know one other person with PA who found out after a blood test and presents with few symptoms so is okay on quarterly injections. Reading on this site I've found so many of you in similar circumstances and am truly amazed GPs don't check sites like this if not just to better educate themselves with patient feedback. I understand they are busy and their time is limited but with patients who come in regularly for ongoing medical conditions they should at least read up on it.
Yes, really amazing when you consider that this is probably part of the feed on the NHS patient site ...
Nobody is really sure where the three month regime in the UK comes from - in other countries where they use hydroxo the normal is monthly.
The nearest people seem to be able to get is a report in the 60s that showed that hydroxo was 'on average' retained twice as long as cyano. However, the study clearly said that variation was such that this could not be generally applied the population - with significant numbers of people actually retaining cyano longer than hydroxo.
Shortly afterwards the frequency in the UK moved to 2 months ...
And then in the 1980s it moved to 3 months - for no reason that anyone has ever been able to fathom ... so conclusion? really is just another B12 myth that people are okay with 3 months.
The BMJ clinical review also has the guidelines for treatment with and without neuro symptoms but you'll need to take out a 14 day free subscription to see and print the document.
It's interesting to note that in the review, in one of the summary boxes, the pernicious anaemia society is detailed as a source of patient information - if such a prestigious body as the BMJ is prepared to itemise the PAS as a resource, then surely doctors should realise that the PAS certainly know what they are talking about and we as patients should be listened to much more readily when we are quoting them as a source of our information. We are all different in what we need, one size does not fit all. Have you seen Andrea McArthurs petition
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B12 injections frequency
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