Just a follow up to my previous enquiry for those who followed .
I came out of my Gp just now..in tears and my stomach is in knots.
He basically negotiated with me and said he will give me a shot once every 3 months instead of monthly like I have it now, refused to believe me that my high values are fake. He said I might be imagining this anxiety or it could be due to something else. I told him..how come the anxiety diminishes once I get the b12 shot??
Also said he might have the wrong information but for now that's all he has...and just before I left the practice he took all the printouts I prepared for him.
I am so disappointed and angry, my head hurts from the stress....
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Gumball77
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I'm so sorry to hear this. If he took the print out thats good.
It's a move in the right direction that's he's said 3 monthly. The guidelines get will read say cleary at least 2 monthly.
Also some need more.
Try and think today as a success in phase one if you csn.
I know you are upset and angry.
I know that feing when I was told I was having a panic attack in a and e.
Make an appointment say you've left material to read and want the decision regarding considered.
Aye least he said he may have the wrong information
It was the 4th gp thst changed things for me. And one went back on what he had said and stated every case is individual after inireally refusing more than 3 monthly.
Nackapan is right - it might not seem it right now, but getting a busy GP to accept reading material on a medical subject is a tentative positive: he will read up on this. He has already confessed to a lack of understanding about the subject.
I think he has nagging doubts. Good.
You have done really well. Despite being anxious, upset, frustrated and angry, you have managed to negotiate with your doctor and get him to accept the printouts.
Did you go alone ? Sometimes when you are feeling this ill, it is a good idea to take someone else along. They can help you later to recall exactly what was said and agreed, can back up what you are saying about symptoms and behaviour etc, and can support you/ step in if you end up in tears/ confused.
You might be able to help yourself a bit meanwhile by recording a list of your symptoms, and recording daily on a chart what happens: frequency, severity. Taking dated photos of any visible symptoms might also help. Build up a record of what is happening to you - this will be invaluable help to any consultant that you may be sent to in the future (the ones that don't particularly care will just roll their eyes!)
You can wait months for an appointment and then appear to be fine for the 20-minute consultation. This is when photos and personal records are useful. And a friend or partner as witness.
I no longer cry or get anxious, incoherent or angry at consultations - this is because I am getting better. This is because I self-inject at a frequency that would not be available long-term from the NHS.
It is known that some people just need more. Why ? Researchers are getting nearer to answering this question.
In the meantime, I am still keeping records and the photos - if no-one else ever saw them, it would serve as a reminder to me of how far I have come.
If it can happen for me, it can for you. Give this GP a chance to catch up with you; he appears to be concerned enough to try.
I'm sorry to read you had an upsetting experience with the GP.
I often cried after an appointment ; sometimes from frustration and sadness at not being listened to and on one occasion after I had been shouted at.
I used to feel very down for a few days after a difficult appointment then I'd feel angry at the way I'd been spoken to and then finally I'd start thinking about what to do next.
Might be worth following up the appointment with a brief, polite letter to GP. Letters are supposed to be filed with medical notes so are a more permanent record.
I have become a member of PAs society and have told my GP that there is a section with information for GPs. He did not say anything apart from :"I admit I might not have all the answers, but for now this is it"...as if my life and the way i feel is just a game. I told him I can't be his guinea pig for him to test and trial ...He told me I don't listen to him!
Anyways, I managed to get him to give me injections every 3 months now...but i will self inject when needed because i have neurological symptoms.
I'd also suggest you consider talking directly to chair of PAS to see if he can suggest anything else.
PAS tel no 01656 769717 answerphone
However sometimes it's just too exhausting to carry on fighting to get recommended level of treatment which is why so many on this forum resort to self treatment.
Horrible for you, I'd just change GP's sounds as if you're up against a brick wall, join PAS if you haven't already. So sad to keep reading these bad experiences, which seem to happen so often to PA patients.
Don't let them send you round in circles, I asked for a second opinion within the surgery I was registered with at the time, when despite 3 monthly injections I was getting ill. I was advised that with a chronic illness it's better to stay with the same GP and got nowhere. I ended up with permanent tinnitus and altered sensation in my feet that I believe could have been avoided had I been treated according to advice in BNF.
What is it with GPs and B12 injections , what are they afraid of, my husband was getting them on prescription but was suddenly told he couldn’t have them anymore, he was self injecting 3 times a week and was a lot better, now he has them every 2 months and is not doing as well it’s not as if they cost a lot don’t get it
Could it be either the number of appoinments needed for injections or that the NHS seems to be losing the knowledge to successfully treat PA and replacing it with sheer quackery. I was told B12 is toxic and I couldn't have anymore injections when neuro symptoms developed and I know others have also been told the same. So many of us are being let down by the care we receive it's a scandal.
And another question please. Does everyone that have PA and gets b12 injections have to supplement with folic acid? As i read that the symptoms of folate deficiency can be similar to PA? I don't remember the GP testing folate levels and i am just worried...
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seeing neurologist, advice on b12 injections welcomed…
Serum ferritin too high?
