Following on from my post last week about a possible B12 deficiency diagnosis I did manage to get to see my GP this morning.
Despite not expecting great things having read about the difficulties on this forum and elsewhere I was really quite shocked with the way I was treated.
The GP just reiterated that my B12 level of 134 was not low and so I had no deficiency. When I queried how that fitted with the NICE guidelines that stated a level below 148 was 97% reliable for indicating deficiency she dismissed it saying whether it was 148 or 130 it made no difference as there as no deficiency.
I asked how she was coming to that conclusion as my understanding of the guidelines was that the blood levels should not be the determining factor but the GP should take other factors such as symptoms, clinical picture etc into account. She just said all of the other results were normal so she knew. She wouldn't discuss with me what those results were and would not give me a printout instead referring me to the practice manager (who was not at the surgery) if I wanted any records. I specifically asked about any enlargement of red blood vessels. She said there wasn't any but wouldn't tell me the result. I said I understood that earlier tests had indicated enlargement and she just said yes there was but wouldn't discuss further.
When I suggested she should take any symptoms into account she said very brusquely 'what symptoms?' I started to say extreme tiredness, tiredness on waking, numbness and tingling in hands, dizziness, depression, bouts of diarrhoea.... (I had prepared a list) she just interrupted me before I could finish the sentence waving her hand and saying 'oh they can be caused by lots of things'.
She wouldn't listen to me at all. Not even for 30 seconds. I felt so disrespected and dismissed.
Despite all of this however she agreed I could have B12 injections (two weeks plus 3 monthly) but I am concerned at the total lack of interest. I requested a neurology referral but she said neurology don't accept referrals for B12. I asked her to make it anyway and if refused I would deal with it. She sort of shrugged so I'm not quite sure if that was an agreement. I tried to get her to agree to start the treatment on the basis of suspected neurological involvement so that the loading doses would continue but she didn't seem to understand and said they could review it after two weeks if there had been no improvement. I tried to explain that if there is improvement than that is the reason to continue until improvement stops but she just didn't get it (or didn't want to). I decided not to push things any further and so went to arrange the nurse appointment. At this point the receptionist tells me I can only have two injections each week as this is what everyone else has. I explained to the receptionist that I wished to have the treatment I was entitled to which was 3 per week for two weeks. She just said 'well you can't' we only have a nurse on Tuesday and Thursday. I just repeated that it needed to be three times each week and so she rang through to the doctor and said the doctor said twice a week is fine. Again I argued it was not fine. I asked for the practice manager or to speak to someone but she said there was no-one but asked if I wanted to speak to the doctor again. When I said ok she just said well you're number 10 in the queue now it will be about 2 hours. I asked if she was kidding as I had to go to work. She just sat back and folded her arms. I left.
I was really quite upset at being treated so dismissively, as if I was some sort of annoying problem to be disposed of.
Anyway - at least I have some treatment, even if I have to be belittled and ignored to get it. I just wonder whether the reduced loading dose will be effective or should I pursue it further? Also, whether I should be more persistent re any neurological investigations. Do they matter if B12 treatment is now being given?
Thanks for reading - helpful to have a rant