any suggestions?!

[justjay]

I'm going to apologise in advance as this is primarily a rant with a desperate shout for advice!

I'm starting to have had enough of this t1 lark tbh. on the pump for over a year and the last few days for no reason I can fathom my levels are soo erratic reaching really high then normal then low then high then higher. just tested and I've hit 30. no wonder I feel ill...!

I've changed site insulin cannula and tubes but nothing seems to do a long change. I can't work out what to try next and it's grinding me down more and more :cry:

any suggestions?!

 

[amberzak]

Re: any suggestions?!

Hi.

I don't know if this is the case for you, but let me tell you what happened with me. I have been so worried about highs, I gave myself too much insulin. I then went low. You get a thing called a high rebound or something like that after a low. So I would go from 2.4 to 28.3 within three hours.

It could be that you are roller costing.

Remember it takes at least two hours for a correction dose to take affect. Be careful not to have too much insulin going in to counteract the high.

Maybe your carb to insulin ratio is wrong, or your correction dose. What's your current carb to insulin ratio? How often do you test? Do you have a diabetic nurse? She might be able to see a patten in your results.

Believe me when I say I really understand how you're feeling. I'm on injections (fighting for the pump) but I certainly can understand exactly how you feel. It's so frustrating. I've sat crying because no matter what I can't control the sugars. This is the first time I've had some sort of control (in two days I've not gone lower than 5.3 and the result is that I've not gone higher than 17, which might seem high to some, but I've been a lot higher).

I hope I've been of some help. Don't give up. It's a very hard thing to do, controlling our sugars, and lots interfere with them. You are not alone.


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[justjay]

Re: any suggestions?!

Hi.

I don't know if this is the case for you, but let me tell you what happened with me. I have been so worried about highs, I gave myself too much insulin. I then went low. You get a thing called a high rebound or something like that after a low. So I would go from 2.4 to 28.3 within three hours.

It could be that you are roller costing.

Remember it takes at least two hours for a correction dose to take affect. Be careful not to have too much insulin going in to counteract the high.

Maybe your carb to insulin ratio is wrong, or your correction dose. What's your current carb to insulin ratio? How often do you test? Do you have a diabetic nurse? She might be able to see a patten in your results.

Believe me when I say I really understand how you're feeling. I'm on injections (fighting for the pump) but I certainly can understand exactly how you feel. It's so frustrating. I've sat crying because no matter what I can't control the sugars. This is the first time I've had some sort of control (in two days I've not gone lower than 5.3 and the result is that I've not gone higher than 17, which might seem high to some, but I've been a lot higher).

I hope I've been of some help. Don't give up. It's a very hard thing to do, controlling our sugars, and lots interfere with them. You are not alone.


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hiya

thanks for your reply, glad that someone has as tbh was starting to feel a bit alone here! lol

my ratio is one to ten and has been for a long while, might need tweaking but I'll see. I tried calling my nurse earlier unfortunately the helpful (cough) reception phone wasn't answered at all so will have to wait now. I've been testing more recently, it just seems there's no rhyme or reason to them atm.

unfortunately my job doesn't allow me to have a "normal" rate or anything like that as is quite active which does not help!

thank you :smile: I don't think people realise how hard it can be sometimes

 

[amberzak]

Re: any suggestions?!

My diabetic nurse asked me to try and stop getting lows. That made a huge difference.

Do you wake up high or low? Or does it change?

There is something else to consider, which may affect you. I found when I was on 1 to 10 for ratio I went high in the morning, but when I went to 1 to 8 ratio I went low in the afternoon. Turns out I need a ratio of 1 to 8 in the morning and one to 10 in the afternoon.

What pump and tester are you on?

I'm going to bed now, but I will be on in the morning to answer you. And hopefully other people will come on to help you in the mean time.

Don't give up. I believe some people, like us, are more sensitive to our insulin and to all those chemicals and hormones in our body, resulting in struggling to keep the sugars under control.


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[justjay]

Re: any suggestions?!

My diabetic nurse asked me to try and stop getting lows. That made a huge difference.

Do you wake up high or low? Or does it change?

There is something else to consider, which may affect you. I found when I was on 1 to 10 for ratio I went high in the morning, but when I went to 1 to 8 ratio I went low in the afternoon. Turns out I need a ratio of 1 to 8 in the morning and one to 10 in the afternoon.

What pump and tester are you on?

I'm going to bed now, but I will be on in the morning to answer you. And hopefully other people will come on to help you in the mean time.

Don't give up. I believe some people, like us, are more sensitive to our insulin and to all those chemicals and hormones in our body, resulting in struggling to keep the sugars under control.


Sent from the Diabetes Forum App

same here and for a while managed to and reduced my a1c. now it's all going horribly wrong! they are slowly coming down tonight but that's only thanks to a temp basal rate of something silly. and even then it's not rapidly dropping so don't feel comfortable going to bed just yet.

it's all a bit varied atm. sometimes I wake up spot on others high rarely low but occasionally.

am on the accu check combo. good bit of kit..

thank you for your support, I must admit I feel like giving up at the moment...

 

[Keith300-01]

Re: any suggestions?!

I was told I was testing too much 10-15 times a day and to cut back or don't react if I do test and its high, been in the 8-10 range all day then tested half 11 and I'm 17.6 did nothing ! I'm on Nightshift so dinner at 1 am tested and I'm 8.3 I had a small amount of insulin left I'm on accu-chek expert going on to the pump in nov had supper 1-1/2 ratio as during the night I can burn off excess in the last 3 weeks my Basel has been cut by 6 units 2at a time until blood fasting never moved for 5 hours going from hypos every day to only one in the last 3 has given me a new life ! Keep posting and take care as sharing and looking help us all , with those that understand without having to explain !


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[justjay]

Re: any suggestions?!

I was told I was testing too much 10-15 times a day and to cut back or don't react if I do test and its high, been in the 8-10 range all day then tested half 11 and I'm 17.6 did nothing ! I'm on Nightshift so dinner at 1 am tested and I'm 8.3 I had a small amount of insulin left I'm on accu-chek expert going on to the pump in nov had supper 1-1/2 ratio as during the night I can burn off excess in the last 3 weeks my Basel has been cut by 6 units 2at a time until blood fasting never moved for 5 hours going from hypos every day to only one in the last 3 has given me a new life ! Keep posting and take care as sharing and looking help us all , with those that understand without having to explain !


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thanks Keith. I don't test all that much, probably 5-7 a day and rarely do much correction dosing.

I'll keep trying to post, it's certainly nice to be able to talk to people who already know what I'm going through :smile: thanks again mate

 

[amberzak]

Re: any suggestions?!

Keith, you are identical to me.

JustJay, glad you are hanging in there.

I was just thinking, could you ask your diabetic nurse for a constant glucose monitoring thing? I've never had one, but it might show some of the patterns.

I know it's a lot of work, but maybe for the next few days record everything - time, reading, food, insulin. You might see some patterns. It could easily be that you have a different carb to insulin ratio at different times of day.


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[iHs]

Re: any suggestions?!

Hi Jay

Using a pump isn't easy at the best of times. An awful lot of its accuracy does depend unfortunately on getting the hourly basal rates correct so that when basal testing, each 1hr or 2hr bg test more or less gives the same bg reading. For the Combo pump using the targets set on it, your hourly bg tests should fall somewhere between the targets of 4 - 8mmol and so ideally these should be around the 6mmol mark which to me seems fairly sensible. However, that doesn't mean that every day is going to be the same as bg levels can just change for whatever reason - dodgy cannula, hot/cold weather, illness, certain other meds and lastly just because the body has suddenly decided to change its need for insulin.

You are certainly not on your own feeling the way you do but to get the best out of a pump, frequent bg tests every 2 or 2.5hrs is essential so that you will be able to decide whether your carb ratio needs to change or whether your basal rates are not right.. Testing just 5 times a day is no where near being enough to get your control of bg levels ok.

Try this weekend to get hold of a couple of sachets of sugarfree jelly and make some up. Also, get hold of a lettuce, celery sticks, cucumber and do yourself some salad using a tiny bit of lemon juice with some olive oil as a dressing. Then start to test your bg levels when you know that they will be somewhere near the 5-7mmol mark without any bolus insulin from correction or carb still present (4hrs) and don't eat any carb, just the jelly and salad. There is a fair bit about basal testing on pumps on the internet but most people adjust the basal rates up or down about 1hr before the high or low bg level. The hard bit is working out exactly how much to alter each hourly basal rate to achieve the right bg level but I find that altering my basal rate from 0.50 to 0.51 will make my bg level alter by approx. 1mmol although sometimes it just alters by 0.5mmol. Its a lot of 'trial and error' in getting the hourly basal rate settings correct but is needed.

What job do you do for a living and can you do regular bg tests?

 

[justjay]

Re: any suggestions?!

bit of an update. eventually got to bed about 3am and was around 15mmol. felt rough but no ketones when checked. I set up a temp basal rate of 150% and after a long sleep (woke up at half 11!) I was 5.4.

have a feeling I'm just coming down with something.

Keith, you are identical to me.

JustJay, glad you are hanging in there.

I was just thinking, could you ask your diabetic nurse for a constant glucose monitoring thing? I've never had one, but it might show some of the patterns.

I know it's a lot of work, but maybe for the next few days record everything - time, reading, food, insulin. You might see some patterns. It could easily be that you have a different carb to insulin ratio at different times of day.


Sent from the Diabetes Forum App

I may well consider asking her but when I last did I was told it was more for high risk people ie pregnant women or people who don't get hypo symptoms. I'll certainly be keeping an eye on what I have to eat etc

Hi Jay

Using a pump isn't easy at the best of times. An awful lot of its accuracy does depend unfortunately on getting the hourly basal rates correct so that when basal testing, each 1hr or 2hr bg test more or less gives the same bg reading. For the Combo pump using the targets set on it, your hourly bg tests should fall somewhere between the targets of 4 - 8mmol and so ideally these should be around the 6mmol mark which to me seems fairly sensible. However, that doesn't mean that every day is going to be the same as bg levels can just change for whatever reason - dodgy cannula, hot/cold weather, illness, certain other meds and lastly just because the body has suddenly decided to change its need for insulin.

You are certainly not on your own feeling the way you do but to get the best out of a pump, frequent bg tests every 2 or 2.5hrs is essential so that you will be able to decide whether your carb ratio needs to change or whether your basal rates are not right.. Testing just 5 times a day is no where near being enough to get your control of bg levels ok.

Try this weekend to get hold of a couple of sachets of sugarfree jelly and make some up. Also, get hold of a lettuce, celery sticks, cucumber and do yourself some salad using a tiny bit of lemon juice with some olive oil as a dressing. Then start to test your bg levels when you know that they will be somewhere near the 5-7mmol mark without any bolus insulin from correction or carb still present (4hrs) and don't eat any carb, just the jelly and salad. There is a fair bit about basal testing on pumps on the internet but most people adjust the basal rates up or down about 1hr before the high or low bg level. The hard bit is working out exactly how much to alter each hourly basal rate to achieve the right bg level but I find that altering my basal rate from 0.50 to 0.51 will make my bg level alter by approx. 1mmol although sometimes it just alters by 0.5mmol. Its a lot of 'trial and error' in getting the hourly basal rate settings correct but is needed.

What job do you do for a living and can you do regular bg tests?

thanks for the advice, I think I just need to try and monitor a bit more this weekend and work it all out slowly. I'm off this weekend which will make it easier I think.

 

[iHs]

Re: any suggestions?!

It took me a long time to get some of my bg levels ok so that I could do a basal test as reading the 'basal testing made easy' guide posted on the internet wasn't that helpful as it didn't guide anyone to know what to do in basal rate altering so they weren't low or too high when the test was commenced so a bit of manual altering blindly according to what bg levels were doing was what I did to get myself somewhere near being ok.

When doing a basal rate test and finding my levels were a bit on the low side, I still carried on with the test but treated the low with 10g worth of jellybabies (making a note what I had eaten) and then waited until the following hour to do another bg test (lucozade, glucose or jellybabies only last for no more than an hour unlike carb). The only time I cancelled out was when my bg levels were above 8mmol and was in need of a correction but making note of everything, its possible to alter all the basal rates up or down to keep bg ok. Keeping them ok every day is another matter as most pumpers need to do frequent basal rate testing probably about mid spring, mid summer, mid autumn, mid winter.

Hope that helps a bit

 

[justjay]

Re: any suggestions?!

Yes it does,thank you. I didn't realise that I night have to adjust my basal Tbh when I first got on the pump.

Anyway today seems better. Few 15 ish figures this morning but that was down to eating then testing not long after. This evening one low, but again that was because time shot away from me doing the garden etc and the next thing I know I'm low and it's half 6, time for dinner! Other than that all tests since have been below 9 :grin: still on a 140% temp but that seems to be working I guess I'll carry on with it fir a few more days then see.

Now I'm thinking, what makes you need such a drastic increase in insulin other than illness?

 

[Patch13]

Re: any suggestions?!

All I've found for a massive increase in insulin needs is illness - including just a common cold where I found I needed a temp basal of 170%!

Other than that insulin that isn't working properly (so I've swapped the vial I'm using), or the usual probs like a cannula that's come out.

The other poster could be right about the basal and it is definitely worth checking. I recently had to suddenly change mine as I kept waking up low and I now need to double check my day rates too. A really useful book is Pumping Insulin by Walsh and Roberts as this discusses how to monitor and change your basal rates as well as other pump stuff.

All of us get frustrated sometimes. Don't give up!!




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[amberzak]

Re: any suggestions?!

Weather change. I'm giving more insulin now the heat spell has gone.

Menstration. Stress. Anything really


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[iHs]

Re: any suggestions?!

Weight gain is another subtle need for more insulin. Ive gone from 12u basal to 14u all through gaining about 2kgs in bodyweight eating more food like small pieces of cake etc. I wanted to see if gaining a tiny bit more weight would enable the insertion of infusion sets to be a bit more comfortable and yes it did.

The location of where infusion sets are inserted is a bit mind boggling as insulin may be better absorbed on the left side better than the right also above the naval rather than below. All of this can cause a need for more or less insulin.

Jay....... it looks as though you are going to need to increase some of your hourly basal rates probably by 4% and not 40% as you might think from looking at your hourly basal rate over on the bottom left of the Combo pump screen which shows the
new basal rate reflecting the 140% TBR. I still haven't fathomed out how the Combo goes about calculating the TBR but hopefully someone who has been using the Spirit Combo for a while might be able to explain it all.......

 

[justjay]

Re: any suggestions?!

Thanks all for your replies. Not been on since my last post.

It's been a bit of a strange one again recently. Today at work they were awful and to the stage of getting really irate and feeling ill so managed to get hold of my nurse who I'm seeing next week. Without looking at my data etc she's recommended to carry on with tbr and what I'm doing,but this morning I couldn't no matter how hard I tried (inc a 200% tbr! :shock get them down easily. Eventually dropped, went out to dinner and a quiz tonight and had to guesstimate (as you do) just tested again when got in not long ago, and 7.8 I think. Very weird.....

Ihs I thought that but I think I've actually lost weight recently so that stumped me lol

 

[iHs]

Re: any suggestions?!

There was a time when I actually used a 250% tbr to get my levels down and that didn't do much and it did make me worry a bit especially as I was out at the time so not at home. What did work, was increasing my hourly basal rates and testing bg levels to see how things went.

If you don't feel comfortable with increasing your hourly basals, then the common sense thing to do would be to give yourself your bolus by using your insulin pen or syringe and just leave the pump deliver the basal. Its easy to tell the pump that your bolus has been delivered by pen or syringe by scrolling down the bolus sub menu (standard, multiwave, extended, pen or syringe). By delivering your bolus by pen you will then be able to see if your problem is due to the set and where you have inserted it or whether its due to something else. Sometimes, pumpers have to use different sets for different parts of the body so that insulin is absorbed ok.

Weight loss can also come about by having bg levels a bit too high for some weeks.....

 

[justjay]

Re: any suggestions?!

There was a time when I actually used a 250% tbr to get my levels down and that didn't do much and it did make me worry a bit especially as I was out at the time so not at home. What did work, was increasing my hourly basal rates and testing bg levels to see how things went.

If you don't feel comfortable with increasing your hourly basals, then the common sense thing to do would be to give yourself your bolus by using your insulin pen or syringe and just leave the pump deliver the basal. Its easy to tell the pump that your bolus has been delivered by pen or syringe by scrolling down the bolus sub menu (standard, multiwave, extended, pen or syringe). By delivering your bolus by pen you will then be able to see if your problem is due to the set and where you have inserted it or whether its due to something else. Sometimes, pumpers have to use different sets for different parts of the body so that insulin is absorbed ok.

Weight loss can also come about by having bg levels a bit too high for some weeks.....

sorry I'm a nightmare for replying!

so I've got an appointment Thursday but as usual the moment I book one with my nurse it starts to sort itself out again! lol

I increased my ratio rather than background and it seemed to do the trick, although now I'm reducing that a bit! very strange.

I did what you suggested also iHs with the pen and that seems to have helped a lot. pump for basal pen for bolus. bit of a pain but not too bad.

thank you to all for your support with this, it's certainly helped :smile:

 

[donnellysdogs]

Try changing to a different batch number of sets.....

 

[justjay]

Re: any suggestions?!

Try changing to a different batch number of sets.....

thanks Sharon, I think I'll start trying to note which numbers I have issues with. how are you?