Thursday, 7 October 2010

I would like my immune system to start behaving properly now please...

I haven't posted on here in ages, mainly because life has been a bit hectic - buying a flat with Stuart at the moment, holidays, and to top it all off apparently my immune system is not content with trying to destroy my pancreas and my joints, and so it has now decided that my liver must die. As a result of which, I'm currently in the process of being diagnosed with autoimmune hepatitis. So I've been feeling quite pants.

It's been...interesting. It all started when I had my hypo seizure at the end on June, when they noticed that my liver enzymes were a bit elevated (apparently the proper medical term in "deranged" *grins*), so they asked me to follow it up with my GP, who ran some tests and couldn't find anything, and so referred me to the liver clinic at Addenbrooke's. At this point, I was feeling fine, so I wasn't too fussed, but then I started feeling ill, and turned a bit...well...yellow. And then I saw the doctor at the liver clinic who said that my liver enzymes were now really quite high, and suggested it might be autoimmune hepatitis. Basically, my immune system wants to kill my liver, for reasons best know to itself, which is resulting in liver inflammation and general dysfunction. It's taken a lot more tests, including a biopsy, to confirm, and even now I still haven't actually seen the AIH specialist to question him about everything, and that's not happening for another couple of weeks. The liver doctor I saw initially called me back in to get me started on medication, as he didn't see any point in hanging around while I was jaundiced and feeling like crap. Apprently the results suggest I have an unusual form of AIH, in that it's a kind normally seen in children but not usually in people my age, so they're a bit surprised.

My blood glucose levels went through the roof when I started feeling ill, as a result of which I ended up on about double the insulin I was on before. The diabetic clinic aren't hugely surprised (apparently liver inflammation will do that to you), and have generally recommended testing lots, using corrections and temp basals where necessary, and getting in touch if/when I feel like I need help. This is what I've been doing for the last couple of months, and my BGs in general haven't been too bad. However, I've just started on the treatment, which is corticosteroids, and I've been told that this is likely to be a long term thing, although hopefully on a decreasing dose.

My main concern is the effect it's going to have on my BGs. After 24 hours of being on them, I woke up with a BG of 17.8, which just refused to come down. I corrected, used temp basals, and kept an eye on my ketone levels, and managed to get things into a somewhat reasonable level by dinner time. It's been a lot of juggling trying to get things all to match up, and even now I still don't think things are quite sorted. I'm not sure whether there will be some kind of transition period while my body gets used to the steroids, and then my BGs will come back down, or whether they're going to stay up. Despite the fact that AIH is apparently more common in people with another autoimmune disease like type 1 diabetes, I can't find much information online about what to expect, which I'm finding slightly frustrating. I'm looking forward to my appointment with the AIH specialist so I can ask him everything. I might have to get in touch with my DSN before then though, as I'm currently using 90 units of insulin a day on basal alone, and I have no idea if that's going to go up... O.O

I have to say, though, I've been massively impressed with my GP and my diabetic clinic, who have been really on the ball and helpful, chasing things up, explaining what's going on and generally offering lots of support. I had a pump/annual review just after I saw the liver doctor the first time, and when I explained to my diabetic doctor what was going on, he spent ages going through everything with me, and was really quite lovely about the whole thing. I am very much YAY! NHS! at the moment! ;)

1 comment:

  1. Wow, that does not sound fun to deal with but you seem to be coping well, in that you seem pretty rational about what happens now. I'm sure you have moments where it threatens to overwhelm.

    It is good that your clinic and doctors have been so good. The NHS takes a lot of stick at times, deserving sometimes, but I love to hear of moments where they are just totally on the ball :)

    Best of luck with everything :)