Diabetes Blog Week Day 5: Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)


This is actually a blog post I've been meaning to write for a while. I live with two chronic diseases already - type 1 diabetes and autoimmune hepatitis (AIH) - and I've said for a while that if I was given the opportunity to get rid of one (and only one) of them, I'd get rid of the AIH.  This topic gives me a chance to explain why.

For those of you unfamiliar with AIH there is a fairly good explanation on wikipedia here, but basically my immune system has declared war on my liver (see, it's that bloody immune system again), and is trying to destroy it. It's quite rare, and I have type 2, which is supposed to be even rarer. Diagnosis is through a variety of blood tests (to rule out other as much as anything else) and a liver biopsy (and oh, what fun that is).  There can be many symptoms, but when I was waiting to be diagnosed I mainly had nausea, fatigue and jaundice.  It's hard to explain to people how ill you are when those are the symptoms, because it just sounds like you're a bit sick and tired, but it was pretty damn horrendous.  I had no energy, and I was so tired I would fall asleep watching tv, on the bus, sitting at my desk at work.  Just getting up in the morning was an effort, and the nausea was constant, which made it difficult to eat normally.

It also messed with my blood sugars big time (it was actually first picked up after I had a seizure caused by low blood sugar) and my endo basically explained that my liver was having issues with pumping out it's normal levels of glucose - sometimes it would shove out more, other times it wouldn't be able to do that and the levels would drop.  On top of that, the inflammation and stress on my body would be combining to push my levels up.  It was a bit of a nightmare.

The treatment for AIH is steroids and immune suppression. For those of you who've ever had to deal with steroids and diabetes, I'm sure you can see the problem... I was lucky in that my hepatologist started me off on a dose that was a bit lower than they normally would, and I responded really well to that.  My hep has been fantastic in trying to balance the AIH and diabetes, which has been incredibly helpful. 

So, now my liver numbers have been in the normal range for about two years now, and a second biopsy I had a year ago showed that a the level of damage is considerably less than it was.  I take a bunch of tablets every morning, and had regular blood tests to keep an eye on my liver function and my white blood cell count (something they have to do when you're on immune suppressants).  IT doesn't sound too bad, right? So why would I get rid of it instead of diabetes?

Because I have no control over it.

Diabetes is a pain in the ass - I don't think anyone would dispute that .  However, with diabetes I have a certain level of control. I can monitor my own blood glucose levels.  I can take action if they are out of range.  I can make changes to my treatment on my own, and I can monitor the effects of things like different types of food or exercise, and I can respond to those and then see the results.  I have longer term monitoring at the clinic, but I'm in charge of the day to day stuff, and even when it's not behaving, there are generally things I can do.  I don't feel helpless.

With the AIH, it's the complete opposite.  I rely on blood tests and clinic visits to tell me how I'm doing.  I have no idea what's going on with my numbers, so I can't respond to changes in them.  Flare ups (where the immune system has another go, and your liver numbers rise again) aren't uncommon, and I can't head them off at the pass - basically I'll most likely end up with some of the same symptoms as before, and then have to wait to see my hep before I can change my medication to deal with it.  AIH kills people if it's untreated, and I know of people who have had to have liver transplants because of it.  Diabetes doesn't scare me the way that AIH does. I hate the feeling of being so helpless and basically at the whims of my immune system.  I'd get rid of it in a heartbeat if I could.

In terms of how I treat people with other medical conditions, I think participation in the DOC has kind of changed that, but in a way I hadn't considered until I thought about it.  In the DOC, we've all had those stupid questions from people who have no idea about diabetes.  Thinking about other chronic conditions, I realise that I don't often know much about them.  Being part of the DOC makes me stop and think before I ask questions or assume things, but this has also made me realise that, if I wasn't diabetic, I probably wouldn't know much about diabetes myself, which gives me a little bit more patience with those stupid questions. :)

Steroids and insulin resistance

I've been on steroids for my rebellious immune system for about two months now, and, ignoring the effects they've had on my BG, I feel so much better! I don't think I really believed a couple of pills could make such a difference, but I actually feel pretty much back to normal now, and there was a time a couple of months ago when I wasn't sure if that would ever happen. I've been seeing my liver doctor every couple of weeks for monitoring, and it's been amazing to watch my liver function tests improve. They're still not completely back to normal, but they're a hell of a lot closer than they were. He's dropped my steroid dose, and has introduced azathioprine, which is another immune suppressant that should allow me to bring the steroid dose right down, possibly all the way to zero, and then I'll most likely end up on a kind of 'maintenance' dose.

The reason I wanted to make this post was mainly to talk about the effect that the steroids have had on my BG/insulin resistance. When I was diagnosed with AIH and started on the steroids, I found it quite difficult to find any information on the effect it would have on my diabetes control other than 'it'll probably make your BGs go up" which, while useful, is a bit limited. There seems to be lots of information on people who have been diagnosed with type 2 as a result of long term steroids, but nothing on type 1, or really anything on what to expect in people who are already diabetic. The kind of information I was looking for was things like how much of an increase are we talking? Is it something that changes as my body gets used to the steroids? Is it an overall increase in BG? I wasn't really looking for a medical opinion, just some stories from people who had experience of this that might reassure me that what I was seeing wasn't unusual.

So I thought I would do a post about my experiences, just in case it helps anyone else out there. :) The first and most obvious thing is, yes, my BGs did go up. And I mean UP. I was hitting the high teens/low twenties pretty much from the first couple of days, and they were resistant little blighters. I made a lot of use of temp basals, and then figured out where I needed the increase in insulin. This seemed to happen twice - I had an initial jump the first few days after I started on the steroids, and I increased my basals and things settled down, then I had a second jump about ten days after I started. I'm not sure how normal this is, and I was really wary about increasing my insulin, but I went with it and managed to get things settled back down again. I've also had 'dips', where my insulin resistance takes a drop and my insulin requirements and BGs go down, and I think that might be to do with the steroids actually working and my liver getting better, so taking some stress off of my system.

This is where my basal rates have ended up after all of that. The blue line is what they were before this whole thing started, and the green line is what I'm on now. Yes, that really is 12 units an hour at one point...! The highest I needed was 14 units/hr at that time. I've noticed an overall increase in insulin needs, but the main increase is the huge spike in the afternoon. I take my steroids in the morning, so I suspect the afternoon peak is the steroids kicking in (I'm finding the whole thing quite interesting from a scientific point of view!). I've also had to increase my insulin to carb ratio over that period, as I seem to be quite sensitive to carbs at that time, so my insulin:carb went from 1u:8c to 1u:5c, and in addition my evening ratio went from 1u:9c to 1u:7c.

I have to say, the pump has been indispensable during this - I can't imagine trying to deal with this on lantus! Being able to use temps basals, and respond to things quickly has really been instrumental in helping me to keep my BGs in a reasonable state. Don't get me wrong, they're not perfect, and it's been a lot of work and I still tweak and get things wrong, but I really feel that the control I've been able to maintain would not have been possible for me on MDI.

And now that I feel my basal rates are sorted, my dose of steroids has just been reduced, which will screw everything up again. *rolls eyes* Oh well!

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! ;)