Recent Posts - DAFNE Online

Aug 22, 2015

martine77 2 posts

Topic: General Discussion / Dafne diary and melt down

Hi I have had a bit of a melt down this week as been stressed with schools going back. I don't have a diary but phoned and left a message a week past Friday yo ask if one could be sent out but no response. I've skipped meals, tested blood on occasion but took insulin when eating. I'm hoping that's me back on track as don't want to feel rubbish anymore. Could someone please send me a diary out.
Thanks martine

Aug 21, 2015

RichMills 2 posts

Topic: General Discussion / Infection?

Hello all,

New to the site as just completed DAFNE which I found informing, just a quick question I've been having a pain in my lower abdomen/groin area, I am unsure if this is an "inside" infection or a muscle injury perhaps? Sorry it's a bit vague! However would this show on my blood glucose results if it was an infection of some kind?

Thanks for any advice
Rich

Aug 20, 2015

AMcD 38 posts

Topic: General Discussion / Repeat urine requests

If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query??

You could ask the question under the hcp section ......?

Hope all is ok. Andrew

Aug 20, 2015

AMcD 38 posts

Topic: General Discussion / Repeat urine requests

If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query??

You could ask the question under the hcp section ......?

Hope all is ok. Andrew

Aug 20, 2015

AMcD 38 posts

Topic: General Discussion / Repeat urine requests

If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query??

You could ask the question under the hcp section ......?

Hope all is ok. Andrew

Aug 20, 2015

Leigh40 2 posts

Topic: General Discussion / Repeat urine requests

Does anyone get repeat requests for urine samples - after my March review I was asked to supply a sample three times - whatever they measure was reducing each time. Just had my August bloods/urine taken and I need to provide another sample next week. I'm freaking out a bit. Does this happen to anyone else ?

Aug 20, 2015

Simon 578 posts

Topic: DAFNE Online Mobile / iPhone 6

Hi Annette, I'm afraid we were forced to by the government - more information can be found here http://www.dafneonline.co.uk/forums/1/topics/2769

Aug 20, 2015

Annette Bell 72 posts

Topic: DAFNE Online Mobile / iPhone 6

Why has the Auto QA calculation been removed? I found it very useful with my 1:1.25 ratio.

Aug 19, 2015

marke 681 posts

Topic: Questions for HCPs / morning BI

not sure that taking BI earlier would help a morning high BG. It has a fairly flat profile. I was getting High BG's and it looked a lot like Dawn Phenomenon. However, and I still don't quite understand this, I have moved my BI injection from 9PM an 11PM and have much lower BG in the morning. It really should have the effect that is, but it does.However as Carolin says consistency is the key. Injecting at the same times every day is the only way to get consistent results and the means to adjust based on those results.

Aug 19, 2015

Muncle 9 posts

Topic: DAFNE Online Mobile / Android App

Hi Johntheblue,

Have a look at this thread http://www.dafneonline.co.uk/forums/1/topics/2769 which might explain why.

Hope that helps

Aug 19, 2015

Jontheblue 1 post

Topic: DAFNE Online Mobile / Android App

The Android DAFNE App on my Samsung S4 updated on Monday 17th Aug.

Since the update it will no longer auto calculate the QA dose based on the CP entry no matter what value the Ratio is set to....

Why???

Distinctly not tested properly Sad

Aug 19, 2015

Phil Maskell 194 posts

Topic: General Discussion / Low Carb

Hi,

Thanks for the replies, I've been low carb for 3 weeks now, but like I said to Warwick I seem to be increasing my insulin not lowering it, is this normal?

Phil

Aug 18, 2015

Nidge 4 posts

Topic: General Discussion / Low Carb

I've been on a lchf diet/lifestyle for the past 4 months - wow, what a difference!

No more swings from high to low BG's, loads more energy, gone are the crippling leg muscle pains, the intense headaches are not missed at all! I'm taking a fraction of the insulin I used to need, and my sensitivity to insulin is now running at 1 unit QA to 3 CP's.

Sure, it's not a cure - I'm T1.5 , but hey it makes life so much more enjoyable. I thought it was going to be really difficult and expensive, but it really isn't and all the family have seen me benefit and have gone lchf too. I know it won't work for everyone, but am very grateful to have been told about it myself.

An interesting comment I heard along the way with regard to a high carb diet and insulin;

Would you hit yourself on the head with a hammer, then take paracetamol to get rid of the pain? compared with eating loads of carbs and having to match with insulin?
Now I low carb with little insulin, with being on injections I am free to have the odd higher carb meal if eating out/takeaway, then can match it with insulin, but the majority of my meals are 1 or 0 CP's, which give me a healthy smooth lifestyle, no hunger pangs as I used to get with high carbs, and the huge benefit of more energy and less of a 'spare tyre'!

Aug 18, 2015

Nidge 4 posts

Topic: Carbohydrate Counting / Jelly Babies

I reckon on 4 jelly babies being 2 CP's. I used to get through loads when treating hypos in the early days, but now on a lchf lifestyle, I very very rarely get hypos, although still carry them with me in case.
The lchf lifestyle has given me a huge amount of freedom, more energy, far tighter BG control, and much reduced need for insulin.

Aug 18, 2015

Nidge 4 posts

Topic: General Discussion / Half unit pens

Hi all. I use a half unit pen (NovoPen Echo) which has made a huge difference in keeping my BG's under control. Like others on here, I have found I am extremely sensitive to insulin and am currently on a ratio of 1 unit of insulin to 3 CP"s. (Or as my DAFNE team would say; 1/2 to 1 1/2 ratio)

Having recently had a pen malfunction (not its fault), I had to revert back to a full unit pen for a few days until my GP got a replacement - more problematic than you would think, and I nearly has a mishap and overdosed!

Glad now to be back on half units. My other saving grace has been going low carb - I'll post this on another post.

Aug 18, 2015

Simon 578 posts

Topic: General Discussion / Dosage auto-calculation in apps

I agree with all of the above comments, we are severely disappointed too as all we are in it for is to help people who've done the DAFNE course, as we have. The MHRA is the regulatory body but it is the European Commission who sets this rule for all of Europe. Anything which performs a calculation must be labelled as a medical device and suitably certified. Penalties can be hard for non-compliance and as much as I love working on DAFNE Online I'm not willing to pay a massive fine/go to prison (I'm sure you'll understand).

John as you rightly say both Keith, Mark and I are UK based so are subject to the EC and UK law. Unfortunately there is no way to go back to a previous version (if there was I would have had to remove them from the app store as I'd still be non-compliant in the eyes of the MHRA).

If anyone knows of anybody who can help with the certification process please do let us know, as we would really like to get this feature back in.

If you want to get in touch with the MHRA then the gentleman who has been in touch with us is Leo Syron and he has said that I can share his information here: [email protected]

Aug 18, 2015

John Syer 19 posts

Topic: General Discussion / Dosage auto-calculation in apps

I was a BETA tester for the development of this app and have used it continuously since then. I found that particular feature very useful, especially as I have varying QA:CP ratios throughout the day.
As far as I can see the change forced on you by the MHRA makes it more likely that a dosage mistake will happen.

What makes this foolish on many levels is that (and it is not an exhaustive list);
a) It is a app for recording values, it does not administer or control any equipment and there is always a person between the calculated value and the administration of dosage. As far as my reading of Directive 93/42/EEC goes, I can't see how this qualifies as a "medical device". (although I'm happy to be corrected on this).

b) I'm based in Australia, the MHRA is the designated competent authority (CA) responsible for medical devices for the UK. The app is available worldwide, not just within the MHRA CA jurisdiction. (As an aside, I imagine that both Keith and Simon are residents of the UK, so that if a court case were to be raised for some form of dosage related problem, under Article 2 of the Brussels Regulation, the the claimant(s) would sue in the domicile of the defendant(s), in this case the UK court systems - perhaps that is why the MHRA gets a look in on this app)

Now that I've vented my spleen, is there anyway to roll back to the previous version?

Regards, John

Aug 17, 2015

Denver 1 post

Topic: General Discussion / Dosage auto-calculation in apps

Simon ,
firstly many thanks for your work on the daphne app I have used it for many years and find it a very valuable tool. Really disappointed with the removal of the auto calc insulin function being removed from the app. Is there anyone at MHRA i can write too and voice my disgust at this stupid decision.

Regards
Mike

Aug 17, 2015

Phil Maskell 194 posts

Topic: General Discussion / Cyborg Times (new BG meter)

Anyone else having issues with Abbot not being able to produce/deliver sensors.

I think they are a victim of their own success, I don't think they can keep up with demand. Who would have thought a cheap alternative CGM for T1 diabetics would be popular?

I am out of sensors, keen cyclist and feel lost without it on rides now!

Aug 17, 2015

JayBee 587 posts

Topic: General Discussion / Dosage auto-calculation in apps

I noticed the change first thing this morning.
Not impressed.

Aug 14, 2015

Simon 578 posts

Topic: General Discussion / Dosage auto-calculation in apps

Unfortunately we will have to remove the auto-calculation of insulin dosage from the iOS and Android apps in the next update. By including a calculation function it means the app is classed as a "medical device" and as such needs to be regulated by the MHRA. This involves a long and expensive certification process (thousands of pounds) which as DAFNE Online is done in our spare time as DAFNE graduates is something we simply cannot afford to do. We were approached by the MHRA who in no uncertain terms told us to either remove the apps from sale or get them certified; we did however manage to agree with them that by removing the calculation function from the apps then it would declassify them as medical devices so the rest of the functions can remain and they can stay on sale in the app stores.

I know this was a useful feature for many of you, so I apologise that it will be disappearing from the apps. We will work with the NHS DAFNE team to see what is possible regarding certification, but in the short term we needed to get the apps back under compliance to allow them to continue to be available for DAFNE Graduates.

Simon

Aug 14, 2015

Phil Maskell 194 posts

Topic: General Discussion / Night time Hypo - Depression!

novorapidboi26,

From the freestyle website:

Sensor water resistance IP27: Can withstand immersion into one metre (3 ft) of water for up to 30 minutes

https://www.freestylelibre.co.uk/freestyle-libre-sensor-kit-en-gb-es.html

I've had baths/showers with it on, but not been swimming yet, holiday next week will be a good test Very Happy

I honestly think they should be on NHS, I forgot to order new one quick enough and feel lost without it at the moment, HbA1c gone from 7.9 to 6.7, purely due to seeing that I was running high overnight. I also feel happier running lower as I know the trend, if I test and am 4, I don't know if I'm going up or down based on this, but with Libre I get an arrow to tell me.

Hope this helps.

Phil

Aug 14, 2015

Warwick 423 posts

Topic: General Discussion / Burnout

Also, please look at getting some professional counselling, preferably from someone who has experience with burnout from diabetes management. It is incredibly common to experience burnout from managing diabetes. Here in Australia, diabetics are twice as likely as the general population to experience depression. Your GP should be able to refer you to a good counsellor, and sharing your issues with someone who can help with strategies to overcome the burnout is likely to be very helpful in escaping from this.

Managing T1D is hard enough without dealing with burnout too, so please get some help in tackling this, and everything else will get easier.

Aug 22, 2015 martine77 2 posts	Topic: General Discussion / Dafne diary and melt down Hi I have had a bit of a melt down this week as been stressed with schools going back. I don't have a diary but phoned and left a message a week past Friday yo ask if one could be sent out but no response. I've skipped meals, tested blood on occasion but took insulin when eating. I'm hoping that's me back on track as don't want to feel rubbish anymore. Could someone please send me a diary out. Thanks martine

Aug 21, 2015 RichMills 2 posts	Topic: General Discussion / Infection? Hello all, New to the site as just completed DAFNE which I found informing, just a quick question I've been having a pain in my lower abdomen/groin area, I am unsure if this is an "inside" infection or a muscle injury perhaps? Sorry it's a bit vague! However would this show on my blood glucose results if it was an infection of some kind? Thanks for any advice Rich

Aug 20, 2015 AMcD 38 posts	Topic: General Discussion / Repeat urine requests If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query?? You could ask the question under the hcp section ......? Hope all is ok. Andrew

Aug 20, 2015 AMcD 38 posts	Topic: General Discussion / Repeat urine requests If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query?? You could ask the question under the hcp section ......? Hope all is ok. Andrew

Aug 20, 2015 AMcD 38 posts	Topic: General Discussion / Repeat urine requests If your worried about it you should ask the reason why you are having to give repeat samples. I am 26 years in at this stage - repeat tests for urine samples have not come up for me before. As far as I know the standard urine tests at a diabetes clinic include for glucose, ketones and protien. Kidneys filter your blood and the waste product is urine. Urine should be free of protein. Glucose and ketones are more accurately checked using a glucose or ketone monitor. It seems most likely to me that it could be a protein query?? You could ask the question under the hcp section ......? Hope all is ok. Andrew

Aug 20, 2015 Leigh40 2 posts	Topic: General Discussion / Repeat urine requests Does anyone get repeat requests for urine samples - after my March review I was asked to supply a sample three times - whatever they measure was reducing each time. Just had my August bloods/urine taken and I need to provide another sample next week. I'm freaking out a bit. Does this happen to anyone else ?

Aug 20, 2015 Simon 578 posts	Topic: DAFNE Online Mobile / iPhone 6 Hi Annette, I'm afraid we were forced to by the government - more information can be found here http://www.dafneonline.co.uk/forums/1/topics/2769

Aug 20, 2015 Annette Bell 72 posts	Topic: DAFNE Online Mobile / iPhone 6 Why has the Auto QA calculation been removed? I found it very useful with my 1:1.25 ratio.

Aug 19, 2015 marke 681 posts	Topic: Questions for HCPs / morning BI not sure that taking BI earlier would help a morning high BG. It has a fairly flat profile. I was getting High BG's and it looked a lot like Dawn Phenomenon. However, and I still don't quite understand this, I have moved my BI injection from 9PM an 11PM and have much lower BG in the morning. It really should have the effect that is, but it does.However as Carolin says consistency is the key. Injecting at the same times every day is the only way to get consistent results and the means to adjust based on those results.

Aug 19, 2015 Muncle 9 posts	Topic: DAFNE Online Mobile / Android App Hi Johntheblue, Have a look at this thread http://www.dafneonline.co.uk/forums/1/topics/2769 which might explain why. Hope that helps

Aug 19, 2015 Jontheblue 1 post	Topic: DAFNE Online Mobile / Android App The Android DAFNE App on my Samsung S4 updated on Monday 17th Aug. Since the update it will no longer auto calculate the QA dose based on the CP entry no matter what value the Ratio is set to.... Why??? Distinctly not tested properly

Aug 19, 2015 Phil Maskell 194 posts	Topic: General Discussion / Low Carb Hi, Thanks for the replies, I've been low carb for 3 weeks now, but like I said to Warwick I seem to be increasing my insulin not lowering it, is this normal? Phil

Aug 18, 2015 Nidge 4 posts	Topic: General Discussion / Low Carb I've been on a lchf diet/lifestyle for the past 4 months - wow, what a difference! No more swings from high to low BG's, loads more energy, gone are the crippling leg muscle pains, the intense headaches are not missed at all! I'm taking a fraction of the insulin I used to need, and my sensitivity to insulin is now running at 1 unit QA to 3 CP's. Sure, it's not a cure - I'm T1.5 , but hey it makes life so much more enjoyable. I thought it was going to be really difficult and expensive, but it really isn't and all the family have seen me benefit and have gone lchf too. I know it won't work for everyone, but am very grateful to have been told about it myself. An interesting comment I heard along the way with regard to a high carb diet and insulin; Would you hit yourself on the head with a hammer, then take paracetamol to get rid of the pain? compared with eating loads of carbs and having to match with insulin? Now I low carb with little insulin, with being on injections I am free to have the odd higher carb meal if eating out/takeaway, then can match it with insulin, but the majority of my meals are 1 or 0 CP's, which give me a healthy smooth lifestyle, no hunger pangs as I used to get with high carbs, and the huge benefit of more energy and less of a 'spare tyre'!

Aug 18, 2015 Nidge 4 posts	Topic: Carbohydrate Counting / Jelly Babies I reckon on 4 jelly babies being 2 CP's. I used to get through loads when treating hypos in the early days, but now on a lchf lifestyle, I very very rarely get hypos, although still carry them with me in case. The lchf lifestyle has given me a huge amount of freedom, more energy, far tighter BG control, and much reduced need for insulin.

Aug 18, 2015 Nidge 4 posts	Topic: General Discussion / Half unit pens Hi all. I use a half unit pen (NovoPen Echo) which has made a huge difference in keeping my BG's under control. Like others on here, I have found I am extremely sensitive to insulin and am currently on a ratio of 1 unit of insulin to 3 CP"s. (Or as my DAFNE team would say; 1/2 to 1 1/2 ratio) Having recently had a pen malfunction (not its fault), I had to revert back to a full unit pen for a few days until my GP got a replacement - more problematic than you would think, and I nearly has a mishap and overdosed! Glad now to be back on half units. My other saving grace has been going low carb - I'll post this on another post.

Aug 18, 2015 Simon 578 posts	Topic: General Discussion / Dosage auto-calculation in apps I agree with all of the above comments, we are severely disappointed too as all we are in it for is to help people who've done the DAFNE course, as we have. The MHRA is the regulatory body but it is the European Commission who sets this rule for all of Europe. Anything which performs a calculation must be labelled as a medical device and suitably certified. Penalties can be hard for non-compliance and as much as I love working on DAFNE Online I'm not willing to pay a massive fine/go to prison (I'm sure you'll understand). John as you rightly say both Keith, Mark and I are UK based so are subject to the EC and UK law. Unfortunately there is no way to go back to a previous version (if there was I would have had to remove them from the app store as I'd still be non-compliant in the eyes of the MHRA). If anyone knows of anybody who can help with the certification process please do let us know, as we would really like to get this feature back in. If you want to get in touch with the MHRA then the gentleman who has been in touch with us is Leo Syron and he has said that I can share his information here: [email protected]

Aug 18, 2015 John Syer 19 posts	Topic: General Discussion / Dosage auto-calculation in apps I was a BETA tester for the development of this app and have used it continuously since then. I found that particular feature very useful, especially as I have varying QA:CP ratios throughout the day. As far as I can see the change forced on you by the MHRA makes it more likely that a dosage mistake will happen. What makes this foolish on many levels is that (and it is not an exhaustive list); a) It is a app for recording values, it does not administer or control any equipment and there is always a person between the calculated value and the administration of dosage. As far as my reading of Directive 93/42/EEC goes, I can't see how this qualifies as a "medical device". (although I'm happy to be corrected on this). b) I'm based in Australia, the MHRA is the designated competent authority (CA) responsible for medical devices for the UK. The app is available worldwide, not just within the MHRA CA jurisdiction. (As an aside, I imagine that both Keith and Simon are residents of the UK, so that if a court case were to be raised for some form of dosage related problem, under Article 2 of the Brussels Regulation, the the claimant(s) would sue in the domicile of the defendant(s), in this case the UK court systems - perhaps that is why the MHRA gets a look in on this app) Now that I've vented my spleen, is there anyway to roll back to the previous version? Regards, John

Aug 17, 2015 Denver 1 post	Topic: General Discussion / Dosage auto-calculation in apps Simon , firstly many thanks for your work on the daphne app I have used it for many years and find it a very valuable tool. Really disappointed with the removal of the auto calc insulin function being removed from the app. Is there anyone at MHRA i can write too and voice my disgust at this stupid decision. Regards Mike

Aug 17, 2015 Phil Maskell 194 posts	Topic: General Discussion / Cyborg Times (new BG meter) Anyone else having issues with Abbot not being able to produce/deliver sensors. I think they are a victim of their own success, I don't think they can keep up with demand. Who would have thought a cheap alternative CGM for T1 diabetics would be popular? I am out of sensors, keen cyclist and feel lost without it on rides now!

Aug 17, 2015 JayBee 587 posts	Topic: General Discussion / Dosage auto-calculation in apps I noticed the change first thing this morning. Not impressed.

Aug 14, 2015 Simon 578 posts	Topic: General Discussion / Dosage auto-calculation in apps Unfortunately we will have to remove the auto-calculation of insulin dosage from the iOS and Android apps in the next update. By including a calculation function it means the app is classed as a "medical device" and as such needs to be regulated by the MHRA. This involves a long and expensive certification process (thousands of pounds) which as DAFNE Online is done in our spare time as DAFNE graduates is something we simply cannot afford to do. We were approached by the MHRA who in no uncertain terms told us to either remove the apps from sale or get them certified; we did however manage to agree with them that by removing the calculation function from the apps then it would declassify them as medical devices so the rest of the functions can remain and they can stay on sale in the app stores. I know this was a useful feature for many of you, so I apologise that it will be disappearing from the apps. We will work with the NHS DAFNE team to see what is possible regarding certification, but in the short term we needed to get the apps back under compliance to allow them to continue to be available for DAFNE Graduates. Simon

Aug 14, 2015 Phil Maskell 194 posts	Topic: General Discussion / Night time Hypo - Depression! novorapidboi26, From the freestyle website: Sensor water resistance IP27: Can withstand immersion into one metre (3 ft) of water for up to 30 minutes https://www.freestylelibre.co.uk/freestyle-libre-sensor-kit-en-gb-es.html I've had baths/showers with it on, but not been swimming yet, holiday next week will be a good test I honestly think they should be on NHS, I forgot to order new one quick enough and feel lost without it at the moment, HbA1c gone from 7.9 to 6.7, purely due to seeing that I was running high overnight. I also feel happier running lower as I know the trend, if I test and am 4, I don't know if I'm going up or down based on this, but with Libre I get an arrow to tell me. Hope this helps. Phil

Aug 14, 2015 Warwick 423 posts	Topic: General Discussion / Burnout Also, please look at getting some professional counselling, preferably from someone who has experience with burnout from diabetes management. It is incredibly common to experience burnout from managing diabetes. Here in Australia, diabetics are twice as likely as the general population to experience depression. Your GP should be able to refer you to a good counsellor, and sharing your issues with someone who can help with strategies to overcome the burnout is likely to be very helpful in escaping from this. Managing T1D is hard enough without dealing with burnout too, so please get some help in tackling this, and everything else will get easier.