Update - Victory is mine!

[gemssea]

Hi all,

I dont post often but have done a couple of times for advice so thought I would update my story.

I started self injecting a couple of years ago as the recommended 12 weekly injections at my doctors was really not sufficient in me maintaining a healthy life and I didnt have the fight in me to battle it with the GP anymore. Whilst the 6 weekly injections did make a massive improvement to my general well-being, after a while I got annoyed and frustrated with having to buy the solution online, especially as it is so cheap for them to make, as it made me feel like I was somehow in the wrong for doing so, if that makes sense.

So, with non depleted B12 levels, I took the fight back to the GP. I explained to the new doctor my situation and that I was self injecting every 6 weeks but that I was not happy in having to do so and felt like I was on my own in managing this disease. I told her I had been injecting for the last year or so and she asked me to have a blood test just after my injection and then just before my next one was due. She expected my b12 levels to be in the 1000's due to me injecting so frequently, but just after my injection it was just over 900. When I got it tested again 6 weeks later it had dropped to 600. My argument I then put to her was that if I had to wait another 6 weeks for their recommended 12 weekly injection my levels would have dropped even further than 600. The injection they then give me would be unlikely to bring me up to 900 (what they deem as normal) so the longer this continues I am going to constantly be chasing a normal level whilst falling further behind.

She found the whole thing really interesting, they aren't specialists after all, and was very supportive, the first doctor who has really tried to help me! She spoke to a hematologist and explained the situation and they advised, as I am sure we all know, that you cannot OD on B12 and as my blood tests showed the need for more frequent injections that I should be given my prescription to allow me to inject every 4-6 weeks, as I feel necessary.

I now have my prescription and some recognition that I was not making up the way I was feeling so I feel a victory has been won!

Not sure if this info helps anyone or encourages you to keep battling with your GP but thought i would share.

[clivealive Forum Support]

That's brilliant gemssea - I had to "fight" my "one size fits all" doctor to change the frequency of my injections some years back because of a return of neuropathy in the run up to the next scheduled one< His argument was that the symptoms couldn't be due to the P.A. (which I've had since 1972) because I was getting the B12 injected.

I now get them more frequently.

Well done for persevering - you have not only "helped yourself" but the next patient seen by your doctor with the same problem.

I am not medically trained but I'm still "clivealive" aged 77.

I wish you well.

[gemssea in reply to clivealive]

Hi Clive, that was exactly what all the prior doctors said to me! Heaven forbid we should know our own bodies! I really hope they rethink this 12 week recommendation suits all, as mostly it couldn't be further from reality!

The other great thing is I was also able to advise my uncle on the way he should approach he GP so he now too is able to have his injections every 8 weeks at the surgery instead of every 12 - it has made a huge improvement to his health

[Zumbaaaaa]

Wow that is great for you what country are you in for interest? Thanks for sharing such a positive GP experience

[gemssea in reply to Zumbaaaaa]

Hi there, I am living in London

[pitney]

Great news, wish all GPs would listen to their patients in that way, good luck hope you continue to get great support.

Best wishes

[gemssea]

Me too! Has taken far too long to have the recognition and so thankful I stumbled across this GP