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. :)

Same song, different chorus

So I had my annual review at the diabetes clinic earlier this afternoon, and I'm sitting here feeling frustrated and angry.

I will start off by saying that in general, I really like this clinic: the DSNs are awesome, through this clinic I've been on a DAFNE course and moved from Mixtard (when I first arrived) all the way to an insulin pump, and my diabetes management has really improved.  However, I have one major grip with the clinic, and it's this: I never see the same doctor twice.

Usually, I find this mildly annoying, but no big deal. Then I had the appointment with Dr Pillock and it really threw me. I was so angry after that appointment, and I sat in that waiting room afterwards waiting to see the DSN feeling like a complete and utter failure.  I know that isn't true, and I generally don't feel like that, but now every time I go to that clinic, I sit in the waiting room not knowing which doctor I'm going to see, and I remember that appointment and how I felt, and I stress.  The last two appointments I saw a DSN (which was actually quite good) and a doctor who seemed very nice.  Today, one of the doctors I've seen before (and got on really well with) was in clinic, so I was hoping I'd get him, and instead I got a patronising *insert naughty word here*

He started off by asking me the same questions they always ask (while reading over my notes) we had the usual surprise that I'm not in regular touch with the DSNs *sigh*, and I asked about my HbA1c.  Turns out it's actually gone done a little bit, and is now 6.7%, which I was very pleasantly surprised by, as I was convinced it would have gone up.  The last three months covers our honeymoon and all the surrounding chaos and I felt that I was completely slacking in my diabetes management.  In the last month or so I've got back on track and really made an effort, and maybe that's what made the difference.  Regardless, I was pleased, but I think part of the reason that I'm so frustrated by today is that the rest of the appointment took away from that.

Anyway, I mentioned that I thought that some of the reduction in my HbA1c has probably been helped by the fact that my liver doctor is currently in the process of reducing my steroid dose, which he then looked up to see what had been written in my notes, and then proceeded to get confused as to whether I had stopped or not, and why I was on the dose I was on.  We then got into a slightly heated debate where he seemed to decide that I didn't understand any of it, stated that "we know what we're doing with prednisolone because we're endocrinologists," explained some of the tests I'd had in baby language, and started to suggest things they could do with my steroids.

At this point I was pretty much ready to bash him over the head with my Biochemistry PhD certificate and tell him that there was no way in hell I was letting him do anything to my steroid dose because I wasn't under his bloody care for that and he'd met me once.  *takes a deep breath and counts to ten* Instead, I explained, as calmly as I could (which, to be honest, probably wasn't all that calmly...) that I had discussed all the options with my liver doctor, and that we had decided on a course of action that we were both happy with. He scribbled something in his notes, and stopped pushing the matter.

I'm sorry, but I trust my liver doctor.  I've seen him every couple of months for the last two years, and I really like him.  He treats me like an individual, and he always discusses my options and asks my opinion.  He knows my case far better than some endocrinologist who has just looked at my notes for the first time and decided that he knows better.

Then he went through my last appointment notes, and asked if my basal rates were the same.  When I told him that they were considerably lower (about 40%, because of the reduction in steroids), he said that he didn't want to write all that down, and moved on...

I just...I feel that the appointments are worse than useless. At best, I get my HbA1c results, and check everything else is ok, and nothing else; at worst, I walk out feeling like this.  I don't get anything out of the appointments, and to be honest, I'm not even sure what I *want* to get out of them, but I know that when I have doctors like the one I have today, I don't want to ask questions, I just want to get out of there as soon as I can.  And that's not right.

I'm pondering emailing one of the DSNs at the clinic (since apparently I should be doing that anyway...*coughs*) and asking what the actual policy is in the clinic, and if there's any way I can make sure that I see the same doctor/group of doctors. I don't want to make an actual complaint, but I'm tired of walking out of the clinic feeling frustrated, and it's pushing me to do something about it. 

Any thoughts?

Post-holiday ponderings

Stuart and I were on holiday last week. We spent a lovely week in Paris and then London exploring, eating, wandering around and generally just chilling out. I have to say, Chuck made the whole experience much easier than it has been in the past - temp basals are definitely one of my favourite things about the pump!

I've learned a couple of interesting things over the last week or so. The first is that my afternoon basal rates are very much determined by when I take my steroids in the morning. The first day in Paris I slept a little later than usual, and combined with the time change, I ended up taking my steroids about two hours late. As a result of which I ended up running low in the afternoon (although testing and free-carbing managed to prevent hypos), and ended up spiking to 16.7 by dinner time. I'd suspecting this before, on the occasional days when I'd taken my steroids later, but this seems to confirm it. I made sure I took my steroids at the normal time afterwards, and that solved it.

The other thing I learned is how much I rely on my logs for managing my diabetes. I keep my logs using an excel spread sheet, which I keep on a USB drive and I usually just have it open on whatever computer I'm using at the time and add to it throughout the day. Since I don't really keep a paper log, I didn't have access to this while we were away. I'm quite happy to do the daily stuff as I go along, but I really do find it useful to have a glance over my logs to see if any trends are appearing, what I did last time I had a particular food, or what temp basals I used etc. It also helps me to spot when my numbers are starting to rise, because there have been times when I've been pootling along, thinking I'm doing ok, and then when I plug my numbers in I realise my average has been creeping up and is much higher than I thought it was, and logging my BGs regularly helps me to catch that early.

Plus, I like graphs. ;) And, well, colour coding things and seeing my averages and percentages in range and all those other geeky things that I've manage to convince excel to do...

I also have a tendency to put lots of little notes in the comments column of my logs, and I have my own abbreviations for things like extended boluses, so I'm never sure how much sense they end up making to other people (especially when my notes end up being small explosions of rage or confusion over a result...), but I figure that I keep these logs for *me*, and the most important thing in that respect is that I have a system when I can have all the information I need, in a way that I can interpret. After all, I'm the one who has to make the day-to-day decisions based on these results.

I still tidy them up if I have to send them to a DSN or take them along to clinic though ;)

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!