What Next?

[pinktwinkles]

I feel a bit cheeky coming here after such a long time of not showing face. Boy has it all changed from the old forum! Life has been good for me for several years now and it became "normal" to feel like I did, with fortnightly injections and I just got on with it. 6 monthly bloods were always 1000+ and the lab said they would no longer B12 test them as it was pointless.

No idea if anyone remembers me but I don't want to bore you all with a big story. In short for the past year or so I've been feeling exhausted - I went to docs around this time last year and as levels so high they looked into thyroid and many other things, all came back clear. About 6 months ago, I started tracking the exhaustion by rating days 1-10 and started to notice a pattern emerge where the 10's were the 3 days before injection.

Today was the day I had an appointment with a very obliging doctor. He was satisfied I knew more about my illness than he did, that I was right that it was too much of a coincidence to be anything else. He read previous letter from haematology (think 2008) and it says happy for fortnightly injections. So GP unsure what next so has decided to take new bloods, prove they still high and refer back to haematology so they can potentially test other levels (I'm out the loop, is it serum levels?) and advise what happens next, if the injections just not working any more, if they need to be more frequent or if there is another treatment I could try. I'm happy enough with this as they all seem happy to treat symptoms and not just go by levels, which is good.

I know you can get infusions, but unless it's changed recently there is nowhere In Aberdeen that does them?

Not sure what I'm looking for, I think I need a bit of reminding of the options next and how to stand my ground. I was great at this back when I got injections down from 12 weeks to 2 which was sufficient at the time. but I feel so out of it all now that I don't know I have the knowledge and confidence of the illness at the moment and anything new.

Thank you for reading

Julie.xx

[Gambit62 Administrator]

Are you more active now that you are on the two weekly shots? - could be that you are using up more B12 and Folate - see article reference on following post.

healthunlocked.com/pasoc/po...

Good to know that there are some obliging doctors out there.

[Hidden]

You may need to have a blood test to check to have not become folate def (and or iron def) as all 3 (B12/folate/iron) are needed in good supply for good blood production. If you are folate def then your B12 will not be used same other way round. Also it is not uncommon to have other problems crop up like thyroid so if not doing well on current treatment it is wise to have further investigations as to why not, its not always just more B12 that is needed,

I hope I make sense, I'm tired today,

Kind regards,

Marre.