Hi everyone and thank you for the replies and support after my last post,feeling the need to share this mornings anger with people who understand.....
So after last weeks events with another GP getting involved who knew nothing and tried to stop my injections....b12 off the scale so of course I'm fine now and don't need any more...idiot! He agreed I could carry on but only until I had the "urgent" referral to a haematologist and IF blood test,the referral has come through for end of September so that's helpful! .Went in yesterday to see my own GP who is fuming and has been hauled over the coals for carrying on with my jabs for so long. She sees no harm in just continuing until I feel I'm as good as I can be,had a jab too and was booked in for another tomorrow (I'm on holiday Thursday for a week,didn't want to risk a crash) had a call this morning from her,so apologetic,the whole surgery has overruled her and she has been told I cannot have any more until b12 levels are proved to be low on further blood tests,everyone thinks I'm being poisoned and it's harmful,even the nurse has said she's not happy giving them as she feels she's harming me! We went through my notes yesterday together and my b12 was tested 10 years ago,I didn't know and it was just over 200 then! MCV (large red cells) has been 100-104 for all of that time,it's been tested several times and though they mentioned it they always said it was nothing. She wants me to complain and as the practice manager was in on the meeting they had with her this morning I feel she will be a waste of time so I've lodged a complaint now with NHS England and they are looking into it. Apparently I will have to wait for my levels to fall...ie become ill again properly before they will allow my GP to treat me. Can't tell you how upset and furious I am right now.
Sorry for the essay...again....just helps to have a rant and know that others understand...
J
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Janee635
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Oh and as I was asked before on here...I do also take sublingual b12 and folic acid prescribed by doc,will be taking spray on Hols with me too,doc says go for it and have as much as you want!,
It's so hard to believe they are so ignorant of B12 and it's effect on the body. Your own GP obviously has a brain and thinks outside the box but was overruled by her ignorant colleagues. I feel for you both. If you lived in Germany they freely prescribe it. Even my GP acknowledged that most of Europe make it much more freely available, so what is the problem in this country? There has to be a reason. In lab tests I've looked in to it always comes under nutrition tests & I've actually submitted an update to my medical records personal info to include that I'm a vegetarian. This is because I can no longer digest meat and therefore don't eat it. My appetite and diet are poor because of my digestive problems.
Well done for tackling NHS England & please keep us updated. Hope you can enjoy your holiday.
Thank you! It's a nightmare,my GP cannot work out what the problem is,she's never come across anything like it and I feel guilty for her ending up with all of this too...I'll keep updating and we will see what happens now. Trust me if I crash they won't like me turning up at the surgery and shouting I told you so!,😄
oh no this just isn't right. Surely you are not the only patient in the practice with b12 deficiency. That's what I feel with my own problems with my gp/practice. What's with this idea of poisoning and harming... I am wringing my hands... what can we do????
Not good - and unfortunately that it is the medical establishment that is so clearly the problem - shutting down a good doctor - but unfortunately nothing new.
Have you joined and are you in contact with the PAS?
As Gambit suggests, it seems like a good time to contact PAS and perhaps ask them to intervene on your behalf.
I don't envy you one bit having to make a formal complaint. I should have done this myself on several occasions, but I've never felt well enough to handle it.
The sooner some 'in the know' drs join forces to sort out this appalling lack of true knowledge about the effects and treatment of b12 d the better. It is so disheartening to hear these stories which are being posted all too frequently. Seems for every gold star dr there are ten black mark ones.
I'd suggest joining the PAS if you haven't already . They can sometimes intervene on members behalf by writing letters and can at least suggest useful information that might help.
"she has been told I cannot have any more until b12 levels are proved to be low on further blood tests,everyone thinks I'm being poisoned and it's harmful,"
I think there are some quotes in fbirder summary of B12 documents that might help to argue against this. If you search his posts or pm him I'm sure you can find a link to summary. I plan to give a copy of summary to my GPs.
Hi Janee635 I don't know how "active" or "influential" he is but perhaps you could try and contact Dr Chris Steele MBE, who after all is supposed to be an "ambassador" for the PAS. Apparently he's ITV's resident doctor on their Today(?) programme.
He has a Facebook page which (if you are on too) you can private message him from.
Sadly you are at the other end of the spectrum from me as I've just succeeded in getting more frequent injections from my doctor. However, I guess the threat is always there that she can be "overruled" by her senior partners so your "fight" is important and I admire you for taking a stand for yourself and the rest of us.
I am so sorry that just when you were getting the B12 you needed from an intelligent and informed GP, the whole thing went to hell so quickly. How infuriating and senseless! Diabetics need insulin because their bodies attack the utilization process, why can't the medical profession see that it's the same thing? Pernicious anemics need b12 because their bodies attack the utilization process? Really, it's not rocket science!
We're all with you in your fight for what's right! Best of luck
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I'm back ;) Advice re mother & functional B12 deficiency
Ongoing complaint Advice 
Facebook group misinformation on folic acid again.
