Pernicious Anaemia Society
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Setting surgery precedents for treatment: should you tell your GP if you are self-injecting ?

Had letter from Haematologist yesterday morning, and appointment with GP later. Interestingly, although haematologist seems sure that I do not have functional B12 deficiency as originally diagnosed and have an adequate B12 replacement, she has recommended halving my injections to 1 every 2 months which she calls "that stated in the British National Formulary." GP said she cannot go against these findings and recommendations, having sought help in the first place. Surprised it wasn't stopped altogether - haematologist hedging her bets?

MMA levels remain stubbornly raised- so being sent to check for SIBO (small intestine bacterial overgrowth). Folate level is 9.9 ug/L though- and I read that these bacteria create their own folate which ends up in the bloodstream and so would have expected a higher result (?)

I told GP that I thought her original diagnosis was correct, and that my main fear was ending up deteriorating to the point I was at previously (on 1 injection every 3 months). Told her I would prefer to self inject in order to prevent that happening. She told me that her other patient, diagnosed by her a decade ago (impressive work) as having Functional B12 deficiency, is still doing well on 1 injection every 3 months.

If this patient has now set a precedent for treatment of Functional B12 Deficiency for this particular practice, how would a GP know whether this patient is supplementing or not ?

With no specific BNF guidelines for treatment of this condition, and no agreed definitive test method, now I have been undiagnosed, what are my options :

Just to keep on gradually getting everything else eliminated ?

Deliberately allow myself to deteriorate yet again on a regime because it worked for someone else ?

Wait for research?

...or just self-inject (since this is a harmless vitamin) and up my folate level ?

And, if I don't tell GP that I've done this, am I just a success-story patient who "despite initial teething problems, is now doing well on 1 B12 injection every 2 months" ?

I think I have to tell her, don't you ?

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Telling my GP helped with my negotiations for more frequent injections. I got the impression that he would prefer if I injected good, wholesome, British B12, rather than that dodgy, Internet-sourced, German B12.

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Telling my G.P. did not help me get more frequent injections , as my numb feet had been diagnosed as " ideopathic " , and he didn't want to go back on that ., So I'm very grateful to get my hands on the " dodgy , internet-sourced German B12 " which has changed my life for the better .

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and I'm guessing that they probably haven't cottoned on to the fact that the British B12 is made by the same (probably German) manufacturer :)

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I haven't formally told my GP that I supplement as if there is no tomorrow ... and some of that is by self injecting - though I have mentioned it to nurses when I go for maintenance doses ... partially because I should be going 2 months and I have a tendency to forget :)

I really don't know how GP would react.

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I know that when I was on 2 injections a week for so long, there was a lot of panic among the nurses (who had not ever followed this regime) and the haematologists really didn't like it either. I think GP faced a lot of opposition with that decision. So even with nurses, you probably need to choose carefully. One of the nurses admitted to me (some way into my regime) that she had Googled "B12 and Toxicity", just to be certain.

Think I'm also going to have trouble remembering date, Gambit62 .

Another thing to watch out for, like overflowing baths and cooker being left on overnight !

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Hi,

My GP knows I self treat but probably not the extent....I need huge amounts of B12 to function.

"I told GP that I thought her original diagnosis was correct, and that my main fear was ending up deteriorating to the point I was at previously "

Have you considered saying the above in a letter to GP?

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Hi Sleepybunny -

Truth is, last time I wrote a letter to her, she replied that she did not have the specialist knowledge required to answer all my questions and that it had gone beyond primary care- then sent me to a haematologist, which as you can tell by my post did not end well for me !

I wish however that she would allow one of the more sympathetic nurses to teach me- I don't seem to be very good at it !

I think, like you, that just making them aware is probably enough information.

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Another reason I tell health workers that I self-inject is so that they get experience of somebody that does. It might stop the "Nobody I know has jabs more than every 12 weeks"

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A very important thing to achieve!

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exactly my point, fbirder , makes it harder for anyone else to be treated as an individual- even ONE other person in 10 years has set the standard!

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Every one is different therefore requirements are different and a person knows their own body better than anyone else One would think we don,t do the injections of B12 for fun we do it out of necessity .I personally disregarded my GP,s laboratory results and blithely re.commenced injecting I have recently upped them considerably as I was feeling so grotty and isundry heart investigations were negative concluded I needed to up the dosage which so far has improved my symptoms. I feel at my age it does not matter about the amount in any case the body gets rid of the surplus.

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I think it's important to tell the GP you're self-injecting. How else will they know that the standard treatment doesn't work for everyone? And how else will they know the kind of desperation felt over the whole process? Personally, when I said I was going to SI, my GP agreed to give me more injections.

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I agree Ajane

No option in the end but SI : I was really hoping that things could change but finally haematologists verdict is that I don't have a problem.... but not so sure that she will tell my GP to stop the injections completely. So she halved them instead.

IF the regime I was on was keeping me adequately maintained, why halve it? The fact is, it wasn't and I was still getting worse, just more gradual a decline than when on 1 injection every 3 months. Told the GP that my worst fear was going back to that level of deterioration. Not sure that I'm not already there but just doing less - safeguarding myself.

So all choice has been removed for me now. It's taken me 2 1/2 years to realise that nothing I do or say will make any difference: the treatment for all of us will remain either every 2 months or every 3 months. Harsh lesson for a teacher !

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So sorry it's been so tough 😞. Thank goodness there's the SI route to improve quality of life. Kindest wishes.

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..... and thank goodness for you and all the others here !

You make it not so tough x

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