Recent Posts - DAFNE Online

Apr 14, 2011

MelissaF 56 posts

Topic: Questions for HCPs / Postop patients using DAFNE

Hi Larissa,

It's really encouraging to hear that you've been appointed in a role like this as I think it's so important and I'm glad that your hospital or health trust appreciates that. I'm also a little bit jealous as I would love to do something like that!

Good luck with what you're doing and I hope that it all goes well.

Melissa

Apr 14, 2011

MelissaF 56 posts

Topic: Questions for HCPs / No change to HbA1c

Hi J,

Apologies for absence - life sort of gets in the way! Hope that everything's good with you? Have your levels settled down at all?

I viewed another forum yesterday for research and every single person contributing to that forum said that their HbA1c was around 5-5.5. Maybe this was a forum for superhumans or maybe they were all lying!

M xx

Apr 14, 2011

novorapidboi26 1,816 posts

Topic: General Discussion / Do I adjust BI or QA first?

Three consecutive days high at lunchtime would suggest that you should up your insulin/carb ratio and for me personally this would be my first course of action, however I have established the correct doses of BI, am and pm.

So it really is up to you. When did you last test your BI doses.....? If its not been in a while, you just do a test one day, and you should see the results pretty quickly from the Levemir.

In theory, no dose changes should be considered until your background needs have been sussed out......

Apr 14, 2011

HelenP 218 posts

Topic: General Discussion / Do I adjust BI or QA first?

Someone...can not remember whom, told me that my BI ought to be about 2/3 of my total daily dose. This guideline worked well for me when I was eating 10-12 CPs a day. Sorry but I can not quote a definitive source. Helen

Apr 13, 2011

RobT 7 posts

Topic: DAFNE Online Mobile / Bug with iPhone app (& site diary)

Hi Simon,
Would be happy with site for BI and site for QA. That would suit well. Have got used to the app on the iPhone and the iPad - they work together. It is a shame that I have to use a laptop or a desktop to view the graphs - flash is not available on the iPad and iPhone ...
I for one would like a left and right buttock option!
Thanks for all the work you are doing.
Rob.

Apr 13, 2011

Larissa 2 posts

Topic: Questions for HCPs / Postop patients using DAFNE

Hi Melissa,

Thank you for your response Smile

I agree that DAFNE isn't fully understood by people in the medical and healthcare profession and that everyone working with diabetes should be aware of the basic priniciples of DAFNE. Which is why I have been assigned to find information to enable my colleagues to be more aware about Type 1 diabetes and patients using DAFNE, who are admitted to our ward.

I can understand in your situation, that you would have managed better without the insulin sliding scale. Like you say, we expect people looking after us to know what they're doing, so i hope that I can help educate people and make them more 'DAFNE aware' with my experience and also with information i have received from other diabetics like yourself Smile

.

Larissa

Apr 13, 2011

caroline15 45 posts

Topic: Questions for HCPs / Information on menstrual cycle

Didn't people used to measure their body temperature to see when they are ovulating? (I feel old all of a sudden)

Think I'm in the peri-menopause now so can't really join in the discussion myself. My daughter (T1 too) seems to be settling into some sort of pattern now so will be keeping an eye on this thread Smile

Apr 13, 2011

JayBee 582 posts

Topic: General Discussion / Norwich DAFNE Evening Meet!

Has been a bit lacking in interest.... Sad

Shall be patient!

Apr 13, 2011

JayBee 582 posts

Topic: Questions for HCPs / No change to HbA1c

Welcome back to the forum MelissaF! After what everyone else has put, I'm not sure what else to contribute apart from keep up the good work (your HbA1c is better than some!) and you'll get there! Smile

Apr 13, 2011

Nikki H-C 23 posts

Topic: General Discussion / Do I adjust BI or QA first?

Evening all,
Can anyone help me to descide if I should be increasing my background Levemir or if I should increase my Novorapid ratio first?
I am look specifically at my breakfast background and breakfast insulin.

I've nearly always been on a 1:1 ration for my breakfast, normally getting me to about 5/6 mmols by a 12/12.30 lunch. Over the last few weeks my lunchtime reading has been about 8 mmol. Still not hugely high I know but more than I would like it to be.
I've already increased my background from 5 units to 6 units in the morning (split 6u at 8.30am & 6u 8.30pm)and am trying to decide if I should increase my quick acting ratio now or keep putting up my background by a unit and then monitoring it.

What are the general rules for increasing units? Background or quick acting first?
Many thanks for any guideance.

Apr 13, 2011

JayBee 582 posts

Topic: Questions for HCPs / Information on menstrual cycle

I think MelissaF is making a great suggestion here, gals.... Smile

What do we think?
That sort of thing would never had occurred to me to use!
Considering the cost, is any individuals prepared to give it a go? Does any one of us already have them on prescription?
I don't unfortunately, but I've not really attempted for a baby really, and don't really have any near future plans to...

We shall solve this biological puzzle! ^0^

Apr 13, 2011

JayBee 582 posts

Topic: General Discussion / Mesntrual Cycle

To bring it even more into light how worthwhile it is to chart the changes... I've not hit the first thursday yet and I'm already taking the "hormonal time" high doses! Madness!

I'm really not sure what to expect now you say that Edentherapies! The main great thing I find about taking a pill generally is the regularity of it. I was often around a week late when I was a teenager and off the pill so I wonder if that will still be the case now... it's madness to think what it's going to be like for my doses. Sad

I completely agree with the reoccurring statement that DAFNE's waiting rule does not help the situation of working this all out, but I would like to bring to light about some advice one of my DAFNE nurses gave me after I showed that I'd been adjusting my BI a lot... she told me that I should give it at least a week before adjusting my BI again. With this, I've been concentrating on adjusting my ratios more for now before I go "that's definitely BI" like I was before and only leaving it for 2 days.

I think leaving the BI for a week odd has made me aware of the need to put the higher dose on earlier... (I am really confused by this now though - it completely throws out the idea that it's just the week before the TOTM!).

I really ought to mark on my calendar when my periods are expected considering I tend to avoid taking packs back to back if I can.

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / No change to HbA1c

Yes, that's a total nightmare. I remember it well!

Apr 13, 2011

novorapidboi26 1,816 posts

Topic: Questions for HCPs / No change to HbA1c

I am sure there are some monitors that do it......the next best thing is a phone app or my preferred choice, the online diary here, which will have the 90 day soon........only downside is you would need to input the results again......

You have to have a 90 day average of between say 6.5 - 7.5 to get to were you want to for pregnancy.......

But if you get close that will be good enough.........managing your levels throughout the pregnancy may be the trickiest part......

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / Postop patients using DAFNE

Hi Larissa,

Just a quick note - I was put on a sliding scale when I was pregant with my son. He was born early and they needed to give me steriods to develop his lungs for an early c-section.

They told me that my insulin would be delivered by the scale and that I should stop both my BI and QA for the time that I was on the drip but that I should continue to eat normally. At the time I thought that this was strange as surely this would only work if you're not eating. Otherwise you're expecting a BI to regulate CPs which I didn't think that it would be able to do.

Sure enough, I became very ill for the 24 hours that I was on the drip, my sugar levels shot up and couldn't be brought down again for a while. I got sick and dehydrated and really worried about the health of my baby.

When the diabetes team came to see me they said that I would probably have managed better without the sliding scale, regulating my own insulin or that, as I was eating normally, I should have carried on taking my usual ratios of QA with meals and just cut out the BI. This is more what I thought at the time and I should probably have insisted on it but you trust that people know what they're doing don't you, especially when you're not yourself.

If I was in the same position again I would definitely be really wary about using a sliding scale.

I think that there are still issues with people in the medical profession not really understanding DAFNE. I appreciate that not everyone can be DAFNE trained but personally I really think that anyone likely to be working with diabetes should have a short briefing in the basic principles.

Let me know what you think as someone who works in that area.

Melissa

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / No change to HbA1c

Thanks for that. I'll try not to be too disheartened. I can only have the HbA1c every 3 months at my hospital so I will just have to stick with it and just hope for the best if I manage to conceive.

Do any monitors give you a 90 day average do you know?

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / Information on menstrual cycle

Hi JackieB,

I was just reading your post and had a thought which might help you. This is coming from someone who is trying to conceive at the moment so that's why I thought of it...

With your cycle being so erratic, have you considered using ovulation sticks to tell you when you're ovulating? As I understand it, with a variable cycle, it's the time before ovulation that varies. Once you've ovulated then I think you have a pretty standard 14 days or so before your period starts. I may be wrong on this so please feel free to correct me if I am - I'm still learning about this stuff.

Given that your peak insulin requirements occur in the week before your period, you should be able to predict this happening around a week after ovulation.

The sticks aren't cheap unfortunately but I'm not sure if it's something that you might be able to get on prescription?

Good luck with it all.

Melissa

Apr 13, 2011

novorapidboi26 1,816 posts

Topic: Questions for HCPs / No change to HbA1c

You seem to be experiencing the same as me, I was expecting much lower A1c, but I didn't have my 90 day average to hand to calculate my predicted A1c..........

hence my request to include it in the online diary, my 30 day was 8.2, probably much lower than my actual 90 day average..............keep it up and i am confident you will see an improvement.......

the 30 day only gives you a monthly average but the A1c gives you a 3 month snapshot....

keep it up......

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / No change to HbA1c

Thank you. It's probably true that they haven't been as good for the last 90 days as they've been for the last 30 for instance but, all in all, they've definitely been a lot better than when I was on the Levemir so it's really disheartening not to see some improvement.

Like you, I tend to keep an eye on the average readings on my monitor as a rough guideline of how I'm doing. At the moment they are 6.5 (14 day) and 7.4 (30 day) so I was hoping that this would reflect slightly more in the HbA1c.

Do you think that your HbA1c reflects worse control in the period beyond the 30 day average or was it a surprise to you as well?

At the moment I'm supposed to be aiming for a reading of less than 6.5 so pretty much everything is a struggle!

Thanks again,

Melissa

Apr 13, 2011

novorapidboi26 1,816 posts

Topic: Questions for HCPs / No change to HbA1c

The HbA1c can be tricky, for the last 4 weeks my average levels have been 7.2, in theory giving me an HbA1c at best of 6.2, but mine was 7.9.

How long have your blood sugars been behaving themselves, its probably not for the period of 90 days that the A1c takes a snapshot of. You are doing well, you are seeing some order in the madness, so just try and keep it going for another 2-4 weeks and you may see a dramatic drop.....

Its much harder and a lot more stressful to hit the targets when preparing for a family I would imagine, but dont be discouraged by your result staying the same, that's good, its not went up.......

Keep up the good work........ Wink

Apr 13, 2011

MelissaF 56 posts

Topic: Questions for HCPs / No change to HbA1c

Hi guys,

Haven't posted for a while but have been trying really hard to regulate my HbA1c by returning to Lantus following a very difficult trial of Levemir.

On paper, my test results certainly look a lot better than they used to - day to day readings have been lower, more consistant and have followed the DAFNE patterns much more.

However, I had another HbA1c last week and, despite all of this, my results are exactly the same as they were about 4 months ago when my sugar levels were yoyo-ing around all over the place on the Levemir (7.9).

Help - I'm trying to stabilise my levels pre-conception and I don't seem to be getting anywhere. It's really disheartening.

Any advice welcome.

Thanks,

Melissa

Apr 13, 2011

Simon 574 posts

Topic: Site Development / Online Diary.........

Sure thing, it's on the to do list ;)

Apr 12, 2011

novorapidboi26 1,816 posts

Topic: General Discussion / Ideas

I could agree that higher doses become less effective but you have to at least be open to the fact that higher blood sugars need more than 1 unit to drop you by 2.5......

For me personally, and others, the evidence is right in front of them. It was mentioned that 4 units should be the limit when at the stage of establishing basal doses and insulin/carb ratios.....in this case this rule is wise........

The handbook also states that at higher doses this rule,referring to the standard drop of 2.5, may not apply.....

The DAFNE educators are only limited to the cirriculum set out in front of them. With regards to my control my knowledge exceeds that of any of the DSNs I deal with........however there help is valuable and sometimes a fresh set of eyes is welcome......

Apr 14, 2011 MelissaF 56 posts	Topic: Questions for HCPs / Postop patients using DAFNE Hi Larissa, It's really encouraging to hear that you've been appointed in a role like this as I think it's so important and I'm glad that your hospital or health trust appreciates that. I'm also a little bit jealous as I would love to do something like that! Good luck with what you're doing and I hope that it all goes well. Melissa

Apr 14, 2011 MelissaF 56 posts	Topic: Questions for HCPs / No change to HbA1c Hi J, Apologies for absence - life sort of gets in the way! Hope that everything's good with you? Have your levels settled down at all? I viewed another forum yesterday for research and every single person contributing to that forum said that their HbA1c was around 5-5.5. Maybe this was a forum for superhumans or maybe they were all lying! M xx

Apr 14, 2011 novorapidboi26 1,816 posts	Topic: General Discussion / Do I adjust BI or QA first? Three consecutive days high at lunchtime would suggest that you should up your insulin/carb ratio and for me personally this would be my first course of action, however I have established the correct doses of BI, am and pm. So it really is up to you. When did you last test your BI doses.....? If its not been in a while, you just do a test one day, and you should see the results pretty quickly from the Levemir. In theory, no dose changes should be considered until your background needs have been sussed out......

Apr 14, 2011 HelenP 218 posts	Topic: General Discussion / Do I adjust BI or QA first? Someone...can not remember whom, told me that my BI ought to be about 2/3 of my total daily dose. This guideline worked well for me when I was eating 10-12 CPs a day. Sorry but I can not quote a definitive source. Helen

Apr 13, 2011 RobT 7 posts	Topic: DAFNE Online Mobile / Bug with iPhone app (& site diary) Hi Simon, Would be happy with site for BI and site for QA. That would suit well. Have got used to the app on the iPhone and the iPad - they work together. It is a shame that I have to use a laptop or a desktop to view the graphs - flash is not available on the iPad and iPhone ... I for one would like a left and right buttock option! Thanks for all the work you are doing. Rob.

Apr 13, 2011 Larissa 2 posts	Topic: Questions for HCPs / Postop patients using DAFNE Hi Melissa, Thank you for your response I agree that DAFNE isn't fully understood by people in the medical and healthcare profession and that everyone working with diabetes should be aware of the basic priniciples of DAFNE. Which is why I have been assigned to find information to enable my colleagues to be more aware about Type 1 diabetes and patients using DAFNE, who are admitted to our ward. I can understand in your situation, that you would have managed better without the insulin sliding scale. Like you say, we expect people looking after us to know what they're doing, so i hope that I can help educate people and make them more 'DAFNE aware' with my experience and also with information i have received from other diabetics like yourself . Larissa

Apr 13, 2011 caroline15 45 posts	Topic: Questions for HCPs / Information on menstrual cycle Didn't people used to measure their body temperature to see when they are ovulating? (I feel old all of a sudden) Think I'm in the peri-menopause now so can't really join in the discussion myself. My daughter (T1 too) seems to be settling into some sort of pattern now so will be keeping an eye on this thread

Apr 13, 2011 JayBee 582 posts	Topic: General Discussion / Norwich DAFNE Evening Meet! Has been a bit lacking in interest.... Shall be patient!

Apr 13, 2011 JayBee 582 posts	Topic: Questions for HCPs / No change to HbA1c Welcome back to the forum MelissaF! After what everyone else has put, I'm not sure what else to contribute apart from keep up the good work (your HbA1c is better than some!) and you'll get there!

Apr 13, 2011 Nikki H-C 23 posts	Topic: General Discussion / Do I adjust BI or QA first? Evening all, Can anyone help me to descide if I should be increasing my background Levemir or if I should increase my Novorapid ratio first? I am look specifically at my breakfast background and breakfast insulin. I've nearly always been on a 1:1 ration for my breakfast, normally getting me to about 5/6 mmols by a 12/12.30 lunch. Over the last few weeks my lunchtime reading has been about 8 mmol. Still not hugely high I know but more than I would like it to be. I've already increased my background from 5 units to 6 units in the morning (split 6u at 8.30am & 6u 8.30pm)and am trying to decide if I should increase my quick acting ratio now or keep putting up my background by a unit and then monitoring it. What are the general rules for increasing units? Background or quick acting first? Many thanks for any guideance.

Apr 13, 2011 JayBee 582 posts	Topic: Questions for HCPs / Information on menstrual cycle I think MelissaF is making a great suggestion here, gals.... What do we think? That sort of thing would never had occurred to me to use! Considering the cost, is any individuals prepared to give it a go? Does any one of us already have them on prescription? I don't unfortunately, but I've not really attempted for a baby really, and don't really have any near future plans to... We shall solve this biological puzzle! ^0^

Apr 13, 2011 JayBee 582 posts	Topic: General Discussion / Mesntrual Cycle To bring it even more into light how worthwhile it is to chart the changes... I've not hit the first thursday yet and I'm already taking the "hormonal time" high doses! Madness! I'm really not sure what to expect now you say that Edentherapies! The main great thing I find about taking a pill generally is the regularity of it. I was often around a week late when I was a teenager and off the pill so I wonder if that will still be the case now... it's madness to think what it's going to be like for my doses. I completely agree with the reoccurring statement that DAFNE's waiting rule does not help the situation of working this all out, but I would like to bring to light about some advice one of my DAFNE nurses gave me after I showed that I'd been adjusting my BI a lot... she told me that I should give it at least a week before adjusting my BI again. With this, I've been concentrating on adjusting my ratios more for now before I go "that's definitely BI" like I was before and only leaving it for 2 days. I think leaving the BI for a week odd has made me aware of the need to put the higher dose on earlier... (I am really confused by this now though - it completely throws out the idea that it's just the week before the TOTM!). I really ought to mark on my calendar when my periods are expected considering I tend to avoid taking packs back to back if I can.

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / No change to HbA1c Yes, that's a total nightmare. I remember it well!

Apr 13, 2011 novorapidboi26 1,816 posts	Topic: Questions for HCPs / No change to HbA1c I am sure there are some monitors that do it......the next best thing is a phone app or my preferred choice, the online diary here, which will have the 90 day soon........only downside is you would need to input the results again...... You have to have a 90 day average of between say 6.5 - 7.5 to get to were you want to for pregnancy....... But if you get close that will be good enough.........managing your levels throughout the pregnancy may be the trickiest part......

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / Postop patients using DAFNE Hi Larissa, Just a quick note - I was put on a sliding scale when I was pregant with my son. He was born early and they needed to give me steriods to develop his lungs for an early c-section. They told me that my insulin would be delivered by the scale and that I should stop both my BI and QA for the time that I was on the drip but that I should continue to eat normally. At the time I thought that this was strange as surely this would only work if you're not eating. Otherwise you're expecting a BI to regulate CPs which I didn't think that it would be able to do. Sure enough, I became very ill for the 24 hours that I was on the drip, my sugar levels shot up and couldn't be brought down again for a while. I got sick and dehydrated and really worried about the health of my baby. When the diabetes team came to see me they said that I would probably have managed better without the sliding scale, regulating my own insulin or that, as I was eating normally, I should have carried on taking my usual ratios of QA with meals and just cut out the BI. This is more what I thought at the time and I should probably have insisted on it but you trust that people know what they're doing don't you, especially when you're not yourself. If I was in the same position again I would definitely be really wary about using a sliding scale. I think that there are still issues with people in the medical profession not really understanding DAFNE. I appreciate that not everyone can be DAFNE trained but personally I really think that anyone likely to be working with diabetes should have a short briefing in the basic principles. Let me know what you think as someone who works in that area. Melissa

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / No change to HbA1c Thanks for that. I'll try not to be too disheartened. I can only have the HbA1c every 3 months at my hospital so I will just have to stick with it and just hope for the best if I manage to conceive. Do any monitors give you a 90 day average do you know?

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / Information on menstrual cycle Hi JackieB, I was just reading your post and had a thought which might help you. This is coming from someone who is trying to conceive at the moment so that's why I thought of it... With your cycle being so erratic, have you considered using ovulation sticks to tell you when you're ovulating? As I understand it, with a variable cycle, it's the time before ovulation that varies. Once you've ovulated then I think you have a pretty standard 14 days or so before your period starts. I may be wrong on this so please feel free to correct me if I am - I'm still learning about this stuff. Given that your peak insulin requirements occur in the week before your period, you should be able to predict this happening around a week after ovulation. The sticks aren't cheap unfortunately but I'm not sure if it's something that you might be able to get on prescription? Good luck with it all. Melissa

Apr 13, 2011 novorapidboi26 1,816 posts	Topic: Questions for HCPs / No change to HbA1c You seem to be experiencing the same as me, I was expecting much lower A1c, but I didn't have my 90 day average to hand to calculate my predicted A1c.......... hence my request to include it in the online diary, my 30 day was 8.2, probably much lower than my actual 90 day average..............keep it up and i am confident you will see an improvement....... the 30 day only gives you a monthly average but the A1c gives you a 3 month snapshot.... keep it up......

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / No change to HbA1c Thank you. It's probably true that they haven't been as good for the last 90 days as they've been for the last 30 for instance but, all in all, they've definitely been a lot better than when I was on the Levemir so it's really disheartening not to see some improvement. Like you, I tend to keep an eye on the average readings on my monitor as a rough guideline of how I'm doing. At the moment they are 6.5 (14 day) and 7.4 (30 day) so I was hoping that this would reflect slightly more in the HbA1c. Do you think that your HbA1c reflects worse control in the period beyond the 30 day average or was it a surprise to you as well? At the moment I'm supposed to be aiming for a reading of less than 6.5 so pretty much everything is a struggle! Thanks again, Melissa

Apr 13, 2011 novorapidboi26 1,816 posts	Topic: Questions for HCPs / No change to HbA1c The HbA1c can be tricky, for the last 4 weeks my average levels have been 7.2, in theory giving me an HbA1c at best of 6.2, but mine was 7.9. How long have your blood sugars been behaving themselves, its probably not for the period of 90 days that the A1c takes a snapshot of. You are doing well, you are seeing some order in the madness, so just try and keep it going for another 2-4 weeks and you may see a dramatic drop..... Its much harder and a lot more stressful to hit the targets when preparing for a family I would imagine, but dont be discouraged by your result staying the same, that's good, its not went up....... Keep up the good work........

Apr 13, 2011 MelissaF 56 posts	Topic: Questions for HCPs / No change to HbA1c Hi guys, Haven't posted for a while but have been trying really hard to regulate my HbA1c by returning to Lantus following a very difficult trial of Levemir. On paper, my test results certainly look a lot better than they used to - day to day readings have been lower, more consistant and have followed the DAFNE patterns much more. However, I had another HbA1c last week and, despite all of this, my results are exactly the same as they were about 4 months ago when my sugar levels were yoyo-ing around all over the place on the Levemir (7.9). Help - I'm trying to stabilise my levels pre-conception and I don't seem to be getting anywhere. It's really disheartening. Any advice welcome. Thanks, Melissa

Apr 13, 2011 Simon 574 posts	Topic: Site Development / Online Diary......... Sure thing, it's on the to do list ;)

Apr 12, 2011 novorapidboi26 1,816 posts	Topic: General Discussion / Ideas I could agree that higher doses become less effective but you have to at least be open to the fact that higher blood sugars need more than 1 unit to drop you by 2.5...... For me personally, and others, the evidence is right in front of them. It was mentioned that 4 units should be the limit when at the stage of establishing basal doses and insulin/carb ratios.....in this case this rule is wise........ The handbook also states that at higher doses this rule,referring to the standard drop of 2.5, may not apply..... The DAFNE educators are only limited to the cirriculum set out in front of them. With regards to my control my knowledge exceeds that of any of the DSNs I deal with........however there help is valuable and sometimes a fresh set of eyes is welcome......