I’ve previously written regarding being diagnosed with PA eight years ago, and for the next six years having injections every 12 weeks. Then following a blood test my GP stated that my B12 level was high and he wanted to stop the B12 injections. Since then I’ve only had injections on: 6 June 2016, 21 December 2017 and 6 April 2018.
On 5 April 2018, following on from an earlier consultation with my GP, it was agreed that B12 injections every three months were to be reinstated. My GP told me he had discussed the matter (following concerns raised by me) with his colleagues and consulted a haematologist, and they had all agreed it was far too risky for me not to have regular injections. It was therefore agreed that three monthly injections were to be reinstated going forward and I had an injection the following day. My request for a new set of loading doses however, was denied.
Today it is 12 weeks later and I attended the surgery for my next injection. Another GP at the surgery has refused to give the injection saying that according to my last blood test (March 2018) my B12 level is high and I must have another blood test before they will consider any future injections.
I am frustrated and extremely angry and upset by this ridiculous process. I find the level of ignorance about the condition of PA amongst GPs quite staggering, and this is compounded by the disdain meted out by them with regard to regular and consistent treatment. I’m unsure how to take this forward and wonder if the PAS can advise, or might be willing to write to my GP surgery? I have in the past provided them with information about the PAS website. I would really appreciate some advice.
Many thanks.
Written by
pas250218
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Hi pas250218 strictly speaking and according to the N.I.C.E guideline with you having P.A. with neurological involvement should be having injections at least every two months - for life.
Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months".
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
It may also pay you to have your Folate level checked.
Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections is also reiterated.
Thanks for your response. I actually did all of that in March. I went to see my GP with a list of symptoms, a full history of my PA, and information and advice I was previously given by the PAS forum (including your info below). We had a long discussion, I had several blood tests, the results of which the GP discussed with a haemotologist and the other GPs at his practice. And they all agreed that it was too risky for me not to have regular injections, and that three monthly injections were to be resumed going forward. Hence my total frustration at being denied an injection today. I don’t see the point of me having another blood test. Things just seem to be going round in circles, and I’m not sure what to do next?
The only “proof” in the form of writing is my own: typed up notes of my PA history, symptoms, my concern over the lack of regular and consistent injections, as well as information from the PAS forum and website, and a request for the reinstatement of injections every three months and a new set of loading doses. My GP retained a copy of these notes at our meeting in February. There is also a letter from me to the GP dated 8 April 2018 acknowledging his agreement to the reinstatement of injections every three months, and a further request by me for a new set of loading doses (which was denied). All communication from my GP surgery has been verbal, either in person or via telephone. I would hope that the personal file they have for me will contain everything that has been discussed on both sides.
I agree with all the others, you are entitled to the care, what my GP has done, (as I have been housebound all this last autumn/winter and District Nurses grumbling at me having home visits for "just a vitamin") I have the B12 prescribed via the chemist, 6 sets of the 2 width needles (collected from the Drs surgery for me) and a Sharps box, so I can do it at home. The GP said he was happy for me to up it from 3 monthly to 2, as no harm, as could not overdose. He is head of the practice and said further issues with this, stick to dealing with him.
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