A small victory...

[Sunshine78]

I went for the first of 6 loading injections today. As soon as I walked in I asked if the nurse would consider letting me self inject the remaining doses, (with a very big smile and most charming tone of course!). The nurse was lovely and wanted to check with her colleague...if she went and came back a little less keen. I continued my pleading...I asked If I could do this one i front of her so she can see I was confident. She gave a few instructions and I did it! Whoop. I have left with everything I need for my next 5 doses (including sharps box), the ability to self inject! 

I wanted to say a BIG thank you to all of you. Without this board, the replies to my own posts and the many others I have read, I would not have had the knowledge and confidence to be bold and ask nor have had the confidence to self inject! Thank you. 

To top this off the nurse and her colleague next door both had knowledge that perhaps 12 weekly would be too long and it could move to 8 weekly if needed (this wouldn't be based on blood results but instead on symptoms). Great news for me and many others who will use the surgery over the coming years. 

[Sunshine78]

Ps also got my blood results printed out. Everything was normal except MCHC which was 314 g/l (320 - 360). Any thoughts? Looks like no further ferretin/iron/serum tests have been done. Is this all related to B12 or should I push for more tests? Thx 

[Galixie in reply to Sunshine78]

I'm currently having similar results (everything normal except a slightly low MCHC). I had similar results a few years ago and requested tests of serum iron, ferritin, TIBC, and saturation percent done at the time. I had been expecting it to be a mild iron deficiency, instead it looked more like anemia of chronic disease (ACD).

Autoimmune diseases can trigger ACD, and PA is an autoimmune disease. So it might be related or it might be something else entirely.

There's a good chart here of what different test results would point to: irondisorders.org/Websites/...

If you do ask for further testing, I'd be really interested in what you find out.

[Hidden]

Well done!

[Sunshine78]

Thanks Galixie, that's such an interesting link. I will most definitely keep you posted. 

[jillc39]

oh wow - well done you.  my gp will not consider more frequent b12 on symptoms.  I left the surgery today fighting back tears - and that's not like me.  But I don't know where to put my painful feet and legs.  neuropathic damage has been diagnosed by a consultant.

[sweetnessandlight in reply to jillc39]

Won't the consultant request more frequent injections?

[BethattheBeach in reply to jillc39]

Jillc39, is there someone (a nurse/friend) who can show you how to self inject? It is simply not fair to make you wait for 3 months when you are sick. It is nothing but torture and dangerous to boot. 

I cried when my GP agreed to give me a loading dose, such was the relief. I am older (62) and there has been quite a lot of neurological damage, so I inject weekly. It keeps most of my symptoms under control, if not removes them altogether. 

Be your own advocate - take lists of symptoms, material from this site and a friend who can support your assertions that the symptoms abate but reappear after however many weeks. 

Or, you could ask here for another Dr in your region?? It is your body and you need to prevent any more damage. 

Good luck!

[Jose651]

So happy for you Sunshine78, 

Thanks for sharing.

J

👍

[clivealive Forum Support]

Sunshine78   - "That's the way to do it".  Well done and best wishes

[th3joker]

You can source extra ones from Germany if you need them, they aren't expensive.

[BethattheBeach]

Well done, Sunshine. You are the 'Patient of the Future'! Watch out GP's...