Posted by on Wednesday 24 August 2011

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance


  1. As usual a well thought out blog Mike. I'm on levemir once a day (late evening only) and then adjust my ratios towards the end of the day to reflect the diminishing Lev. It works for me and this week I'm having one of the good ones hence my doubts in other areas. The half unit adjustment is also very useful - I seem to be a Novo junkie though having been with them since diagnosis for one reason or another!

    I think speaking at your appointment will help to clear things a little.

    Good luck.

  2. Thanks Dave. It will be interesting to see what comes for both of us in the next few weeks/months.

    Fortunately we can rely on the DOC to see us through whatever we choose!

  3. Do you think you would have a chance of a pump? If not then this would solve your dilemma! Not suggesting that this would be desirable of course but just wondering what the score is. At our clinic (Bristol) they are fairly pro-pump for children, particularly Dr C****e but dont know if that is the same for the adult clinic.

  4. Thanks Louise. It is certainly something that has been suggested to me at annual reviews in my days before DOC. At that stage though I really could not see the benefit at all (seemed like the same carb guesswork, with all the same errors, combined with a much more awkward and troublesome delivery method).

    The team have changed since then, of course, but my guess would be that they are still pretty pro-pump. If I ever get to the stage where I'm sure what I want to do, I guess I'll find out :)

  5. From my brief convo with Lis at the BRI a while back, the clinic seems more pump friendly than some. Saying that, it is a competely different challenge when it is our turn.

    Like I said in the tweet a minute ago, I feel that sometimes we just a change, something to shake things up a little. Maybe bring more focus (no wait that is just me), change of long acting, change of rapid insulin.

    Like Dave, I like my gadgets so playing with a pump would be cool, but can see the potential pitfalls associated.

    Perhaps the new team will be able to refresh things a little, the benefit being able to look at things from fresh eyes or another angle can all help????

    Fingers crossed for a good a1c. Best wishes to Lis and Helen if they are still at the clinic!

  6. Thanks Mike. I'll pass on your best wishes if I see them :)

  7. I am sure it would solve a lot of your frustrations with your basals - I know how you like to get them as spot on as you can; which of course is pretty tricky with one injection a day. Also you can set up another set of basal rates for weekends, holidays etc. Have convinced myself the positives outweigh the negs, particularly with growing children. Adults seem to love them too tho. I suppose it you really hate it you could always go back to MDI. I just wish they were more user-friendly in terms of the whole rigmarole involved in the filling from a vial etc - how ancient is that? Why cant they have pre-filled cartridges which you can just whack in - i know, I know, no money in it for the likes of Novo, Sanofi et al.

  8. great post, mike. unfortunately, no one can decide what the right choice is for you, but you. annoying, right? sometimes i wish somebody else could make hard decisions for me.

    whatever you decide to do, the DOC will be behind you 100%! and if you have any questions about pumping, please don't hesitate to let me know.

  9. Thanks guys. Much appreciated :)

  10. I'd definitely suggest asking about the likelihood of pump funding at your appointment. Sadly, it is another factor. If funding is likely, you can come away and ponder some more knowing that if you decide to go for the pump you should be able to get it. If unlikely - well, I guess the decision is sort of made for you.

    Good luck - fingers crossed for a good A1c.

  11. Hi Mike,
    Interesting to read your thoughts on pumps. I've always been in the "too much hassle" camp, but the benefits are hard to ignore.
    You mention the Humapen Memoir which I used & was very pleased with. However the battery died after less than 2 years & believe it or not, is not user replaceable! Instead you are advised to get a new pen, but I now find that they are not available until next year! I really miss it.
    Hope the appointment goes well.

  12. Thanks Bob. Yes the leaflet in the box says you need to replace the Memoir after 3 years but I'll carry on using it until the battery dies. Annoyingly NovoNordisk *still* haven't slated the NovoPen Echo for UK release (which is why I had to switch to Humalog) which means, with the production troubles in the Memoir there is no device that offers that very useful facility available in the UK.

    My hope is that the new Memoir (whenever that arrives) will have the ability to 'flag' priming/airshot doses which is my main gripe with the current one.