TYPE1 (only please) HBA1C frustration ... help appreciated

[mojo_101]

My hba1c level has not dropped since I started on a pump 3 months ago. I wanted to see a drop similar to what T1s usually achieve in 3-6 months ... apparently 1%, but I have not seen any improvment over MDI. It may drop further in the next couple of months, but I wanted to find out what other T1Ds generally achieve once stable on the pump. However whenever I spot HBA1C posts here and elsewhere, they are from a mixture of t1, t2 and even non-diabetics, so it is impossible to find out what real ranges are experienced by comparable people.
Personally I would like to achieve < 6.5, as recommended by various organisations, but that is currently proving difficult.
My consultant said that only 10% achieve under 7, however I see many people, including t1 with signatures indicating results in the 5 to 6% range.
Doesnt that mean an extremely low standard deviation and super tight results, little exercise, no illness ... the list goes on????

Any gurus willing to comment and share tips?

PS: I am not trying to make any comment about other forms of diabetes, but please only want useful info I can easily compare to my situation.

=====
John T1D 36 years, Pump for 4 months now.
Carb counting for 36 years, weigh food whenever possible, test ~ 10 times per day especially around exercise.
Carbohydrate countdown (1970s), Carbs and cals, Pumping Insulin, Think like a pancreas, Diabetic Athlete's Handbook.

 

[pumppimp]

Re: TYPE1 (only please) HBA1C frustration ... help appreciat

Hi Mojo,
I've been on the pump for over 7 years now, and It has brought down my HbA1c a great deal I started with an HbA1c of 14 something and within the first 8 weeks had dropped that to 8.3. My lowest has been 6.9 but generally hangs about the 7's. I too would like to tighten up my control even more, but due to problems with my hormones and lots of stress at work/ uni it's an impossible task. I was going to reply to your other post as well because for my birthday/ Christmas present this year I'm getting the CGM that interfaces with my pump (i'm on the vibe). I'm really hoping that This will improve my control even better as it will let me see when the hormones take hold and will let me deal with that more effectively. Even if I only have it for a year I think it will help me learn a great deal about swings and basal settings to get the right levels set up for me. I'll be self funding as well (in lieu of any presents from any friends and family), the transmitter and first 4 sets cost £500, then £186 for 4 more sets thereafter (apparently they have lasted up to a month each for some people although animas only recommend a week). It will be completely worth it for me I recon but I'll let you know some time in Feb with my latest HbA1c.
What particular problems are you having with your readings? I found that I needed to set up lots of different basal settings, depending on the different days activities. I have one for lazy bumming around the house in my Pj's day, really active adventure days where we're up early and off kayaking, climbing and biking somewhere (sometimes a combo of all 3 in one day). Days where I'm not necessarily doing a lot of exercise but I'll be really stressed with reports for work and assignments due in for uni etc. Also temp basal settings are there to be used make sure you do use them lots, nobodies day ever turns out how they planned it and that's what they are there for.

I've also found that I need to set up different bolus ratios and correction ratios throughout the day as well, I have really bad dawn phenomena, but anytime between 2-6 or 7 pm I'm very susceptible to lows so had to adjust my lunch time ratios as well as basal for the evening time I'm usually quite predictable so can go back to the trusty old 1;10, but if I had that throughout the day I'd be scuppered 1;7 and 1;12 don't seem to be that far out from 1;10 but for me that makes a real difference. For correction ratios in the morning I'm 1;1.5mmol in the afternoons 1;3mmol and in the evenings 1;2mmol.
It also takes a lot of practice sampling all the different types of foods and getting blousing timings correct I spent a lot of time on this when I first got pumpy, what you eat determines when you take your bolus and what type of bolus you take whether it be standard combo or split etc.
Site locations can vary basal rate settings and also bolus timings it's very personal to each person and requires a lot of experimentation and of course lots and lots of testing. The more work you put in at the start the easier it is to adjust things years down the line, and settings will constantly need readjusting as you and your body change.
If, your HbA1c hasn't dropped has your standard deviation on your readings? That is to say are you having less swings and drops than you were before? if so then the pump is helping your control in some ways the HbA1c isn't the only indication.
I hope this big long ramble helps a wee bit, Laura.
P.s there is a separate forum for pump users which might have some useful info for you and also one for blood glucose monitoring, which did have a really long thread in it about CGM's how much they cost how well they worked, it was really helpful for me and may be useful for you.

 

[mojo_101]

Re: TYPE1 (only please) HBA1C frustration ... help appreciat

Thanks so much Laura, I will take my time and go through all your points tonight after work, when I can concentrate.
I also have dawn phenomenon, and a basal tested daily "wave" shape.. and do use TBRs and 4 profiles for activities and lazy days etc. I have tried multiwave and extended, but although in the first weeks I had some success, now I do more standard boluses. I often need to chase high bgs in the afternoon, but have now changed my ratios and think a recent cold was affecting me more than I thought.
Again I really appreciate the well thought out response. Can't thank you enough...

 

[Stefano]

Re: TYPE1 (only please) HBA1C frustration ... help appreciat

Hi mojo, I'm diabetic since 1980 (practically all my life) and I'm using an insulin pump since October 2012, so a year now. I also carb count.
My hba1c has gone from 8.4 to 7.8 to 7.1
Next week I will get the result of the new hba1c. I am very curious as I am now 3 months using a CGM. I have always been aware of my swings but the CGM has opened a new world as I can now make adjustments as soon as I realise my blood sugar is starting to rise. This means my standard deviation is not high anymore.
As I said I carb count but still I can see that if I eat to many carbs or just simply a heavy meal I need more insulin than what the carbs count would suggest. Also being 34 years diabetic this has an effect on my food absorption which is definitely slower than a non diabetic.


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[Snodger]

Re: TYPE1 (only please) HBA1C frustration ... help appreciat

Others have given help about the pump but you also asked about what HbA1cs T1s tend to get. I don't have specific data on pumpers but I've done loads of research (just finished my PhD) on t1 HbA1c in general.
The national diabetes audit shows that only 7.4% of T1s reach an HbA1c of 6.5 or below. If you plot their cumulative data on a graph it's an absolute straight line - try it. 7.4% get 6.5 or below, 28.7% get 7.5 or below, 81.9% get 10 or below. About half get 8.5 or below (they don't publish exact data on the average, but that's what I worked out plotting the figures and doing a linear trendline on the figures they do publish). If you want to look at the original audit document it's here: http://www.hscic.gov.uk/nda
T2s, because they still produce some insulin, have a much easier time getting down there (nearly 30% of them at 6.5 or below).

Don't forget that people who put their results on here are probably doing it because they've managed something pretty amazing and they feel proud. Those of us who perhaps don't get down that far may decide not to display that info. So that will bias the figures towards people who are on the lower end of the spectrum.
Also, different T1s have different challenges. If you have dawn phenomenon, if your body responds to stress by raising your bg, if your body responds to even mild illness by raising bg rapidly, you will have a harder time than if your body doesn't do those things. If you are doing full time or shift work it's much harder to manage than if you can control what you do all day.

 

[mojo_101]

Re: TYPE1 (only please) HBA1C frustration ... help appreciat

Thanks Stefano and Snodger,
I am very interested in your experience with CGM as I have already contacted dexcom (distributor is advanced theraputics in UK- not very responsive). I think that would really help me to cut SD, and am very concerned about post prandial and exercise swings, so need to test very frequently.
Interesting information snodger, full time work does play havoc with my readings, but I want to improve all the same. (Dawn phenomenon - tuned basal, stress, and exercise all affect me strongly). I guess I would like to be in the 7.4 percent, which is (6.5%) recommended by at least one association of endocrinologists.
I have improved to the point that I think (as Gary Scheiner has discussed) my post prandials now need to be improved to get further.