Disheartened

[Julia]

I?m so pleased Copepod introduced me to this forum in June. I have read the posts pretty much on a daily basis and you lot are a real inspiration. My only regret I didn?t find you guys earlier!

I have always struggled with control, although even at my worst I have never skipped injections or not tested at least 3 times a day.

I?ve had a pump for 2 years and last couple of HbA1c?s have been low 8s (vs high 8s and 9s on MDI). I have learnt so much from this forum and have consulted the John Walsh Pumping book on advice found here. For the last 3 months I have tried so hard, now that I know how to do proper basal testing (not just carb free!) and have been religiously carb counting. I?ve been experimenting with dual wave boluses for pasta/rice etc and sticking to bread and potatoes when I want to check ratios. I?ve done more night tests in the last 3 months than in the 15 years I was injecting. I thought I was getting somewhere. I?ve been emailing my result spreadsheet to my DSN every 2-3 weeks and following her suggestions.

I know I am still struggling with both post exercise highs and lows, but am still experimenting to find what works (so far seems need bolus as soon as finish exercise then temp basal reduction overnight if long run or bike ride). Also my basal requirements always seem to be changing (and I don?t have the excuse of growing/teenage hormones!).

So I had my bloods done, ready for my annual review on Monday. I am gutted to find my HbA1c is 74mmol which is 9.0% old money! 😱 That?s the highest it?s been on the pump. I was not expecting it be good, as my meter 30 day average is still high at 9.1, but I test at all times of day (270 tests in last 30 days) so shouldn?t be missing too many spikes. So why is my HbA1c so high?!!!

I?m sorry for the length of this post. I just want someone to tell me that it IS possible to get a good HbA1c, even <8% feels impossible to me. I feel so disheartened. Almost ready to give up and concentrate on other aspects of life.

I know I haven?t posted much (yet), but I would love to come to the Manchester meet. What time of day is it? I?m on-call all weekend, but hopefully might find someone to cover for a couple of hours.

 

[Hanmillmum]

Hi Julia,
Don't give up you have put far too much effort in! I can't offer much in the way of advice, only used to my own toddlers needs. I can, however, appreciate the effort you are putting in and feeling like you are not being rewarded for the work! We struggle with changing basals, colds and bugs, random activity periods that we can never seem to get in control of. What I try to keep to mind in times of dispair is that if I/we weren't doing all the x amount of testing, tweeking and so on then the hba would be higher still! So yes it is worth it and I'm sure you will get those numbers down with all that effort and determination, you certainly deserve to. Good luck, hopefully someone who can share their success and advice will be along soon 🙂

 

[Ellie Jones]

Sounds like you are doing all the right things so it's a case of time to pin everything down...

One reason for your higher HbA1c could be that in may ways yes you have stablised your control so are actually working on a tight range just need to drop this a bit,

If you check your Standard Diviation this will give you an idea to what range your are running in..

The shifting of your basal could be due to your monthly cycle, so very worth while to print out your data see if you can see any patterns to the shift..

Another thing you can do, is if you feel that your basal is shifting, is set up another porfile with current profile and use this one to make your adjustments, if your basal starts changing flick back to the original one and see how that one works pans out, this will give you an idea as well whether your basal are following/reaction to your monthly cylce..

 

[Caroline]

HI Julia. Some good advice and brilliant suggestions have been made, I can't add tot them except to say don't give up hope. Nearly everyone seems to go through a bad patch at some time and they sort it out. I'm sure things will soon sort out for you too.

 

[Northerner]

...I know I am still struggling with both post exercise highs and lows, but am still experimenting to find what works (so far seems need bolus as soon as finish exercise then temp basal reduction overnight if long run or bike ride). Also my basal requirements always seem to be changing (and I don?t have the excuse of growing/teenage hormones!).
...I know I haven?t posted much (yet), but I would love to come to the Manchester meet. What time of day is it? I?m on-call all weekend, but hopefully might find someone to cover for a couple of hours.

Hi Julia, sorry to hear that the HbA1c is being so stubborn despite your sterling efforts. Regarding exercise, I have found that having a small amount of carbs (10-15g, no bolus) seems to stabilise my post exercise levels when eaten shortly after exercising. Prior to doing this my levels would rise higher than if I hadn't exercised, or occasionally drop low. Have you got a copy of Diabetic Athlete's Handbook? It has lots of really useful information about exercsing with diabetes (as you might imagine! 😉), plus some good explanations of the science behind it all - I found it very helpful to understand why things happen because it makes it easier to tackle them.

The Manchester meet will start from 12 midday, although it is likely some may be there before then. It would be great if you could pop in to see everyone for a couple of hours, a lot of people will no doubt be there until the evening 🙂

 

[everydayupsanddowns]

Just wanted to say 'Hi' and 'Hang in there' Julia.

You'ev put a lot of work in over the last 3 months, and you are getting clues to what works for you, but my experience of trying to 'tighten things up' over the last couple of years was that it got worse before it got better.

Experimentation, by its nature, brings with it head-scratching and failures as well as successes as you try one approach, watch it not work, then try another, then another... All of that will have a temporary effect on your A1c, but once you've found approaches that seem to work (well, more often than not anyway!) you should be able to get yourself more in range more of the time.

Keep plugging away at cracking the exercise conundrum. Gym visits were certainly part of my (eventual) success and reduction in A1c. I just have to improve the shift from gym to non-gym periods now...

Good luck and KEEP GOING!!

 

[Copepod]

Julia - have replied via FB.

 

[Robster65]

Hi Julia.

I can't really add to the advice given but it does sound possible that you're over treating for the exercise, which I have done in the past, and maybe this will be driving your BGs high during the exercise itself.

The Diabetic Athlete book explains the mechanisms at work (might take a few reads unless you're medically minded) and offers some (US) approaches to each sport/activity for both MDI and pumping.

Copepod> If there's any advice you can post on here it would be good for anyone else in a similar situation. Your experience is obviously highly valued.🙂

Rob

 

[Unicornz]

I know I am still struggling with both post exercise highs and lows, but am still experimenting to find what works (so far seems need bolus as soon as finish exercise then temp basal reduction overnight if long run or bike ride). Also my basal requirements always seem to be changing (and I don?t have the excuse of growing/teenage hormones!).

Hi Julia, I'm sorry to hear you are not seeing any results from the masses of effort you've been putting in! It sounds like you are doing everything right, so I'm sure that you will get there if you just keep at it. Don't give up and I'm sure you will start seeing some results soon 🙂

I can definitely relate to the exercise part and the continuously changing basal rates! I've been on a pump since March now and it's going fairly well (better than on MDI!). I joined the gym last month and I just can't figure out what to do with my basal and my levels are all over the place during and after exercise! I've been trying to get an appointment in with my DSN to ask her if I can borrow a CGM for a week so I have a better overview of what my levels are doing during / after exercise so I can make changes accordingly.

Is that something you could ask about? What pump do you use? I have the Medtronic Paradigm Veo and with a CGM it shows exactly on the pump screen your continuous BG levels. Perhaps this way you can figure out how your levels are behaving during the day and night and you might figure out something you didn't know? It definitely helps with basal testing as well if anything 🙂

Good luck with everything, really hope you can sort everything out. Also, feel free to send me a message or anything if you want to chat a bit more I know I could definitely do with some brainstorming about exercise and continuously changing basal rates!

 

[Julia]

Thank you so much for all your encouraging comments. Really helpful. Thank you.

Ellie, how do I check the standard deviation? I use a OneTouch Ultra 2 and it only gives me 7, 14 and 30 day averages (well I can?t find any other functions). Do you find the standard deviation useful and is it something your meter tells you? I enter all my data in the pump excel spreadsheet my hospital provided. If I was better with excel maybe I could work out how to calculate it from my spreadsheets?

Also Ellie thank you for the suggestions of monthly cycle. It?s something I?ve been thinking about asking you lot anyway. Maybe I?ll start another post?

I really think exercise complicates things for me a lot. I read the diabetes athlete handbook from cover to cover just after I read the walsh pumping book (both bought on advice I read on here). Definitely need to go back through it more carefully though. I have started blousing as soon as I finish exercise, which is something I picked up from that book. For instance I?ve been for 2 runs over 6 miles this week both with massive (albeit consistent!) rises after finishing. Monday?s I was 9.2 at end of afternoon run but rose to 15.0 in less than 2 hours. Tuesday?s finished on 8.5 at end of evening run and rose to 15.6, despite bolusing 1.0iu immediately on finishing the runs (and no food). 50% basal set an hour before start of exercise. Counterintuitive, but perhaps I should try eating (and bolusing) as soon as finish. If it?s due to liver output increasing during extended exercise, may be food and insulin together might help? (Probably got that completely wrong?!). Might give it a try though?

Anyway, again, thank you so much for all your encouraging comments. They really really help. And thanks Ilse, I?m going to ask about borrowing a CGM when I go to the hospital on Monday. Fingers crossed

 

[Northerner]

...For instance I?ve been for 2 runs over 6 miles this week both with massive (albeit consistent!) rises after finishing. Monday?s I was 9.2 at end of afternoon run but rose to 15.0 in less than 2 hours. Tuesday?s finished on 8.5 at end of evening run and rose to 15.6, despite bolusing 1.0iu immediately on finishing the runs (and no food). 50% basal set an hour before start of exercise. Counterintuitive, but perhaps I should try eating (and bolusing) as soon as finish. If it?s due to liver output increasing during extended exercise, may be food and insulin together might help? (Probably got that completely wrong?!). Might give it a try though?
...

Hi Julia, this is what I was finding. I tried eating and bolusing but then went hypo, so instead tried just eating after exercise - only 10-15g though - and my levels stayed perfect! Counter intuitive or what? Even my consultant was surprosed, but it certainly works for me! 🙂

 

[everydayupsanddowns]

Nice to see you posting again 🙂

If your numbers are in an Excel sheet you can use an inbuilt function to give you the SD. I can't remember exactly the prefix but it would be something like:
Click the cell where you want the SD to display
Click the place where you usually type/amend the value (or click fx to add a function)
Add the function: =STDEV(B2:B31)
Where your BG values are in the B column and there are 30 of them between row 2 and row 31