Recent Posts - DAFNE Online

Aug 19, 2016

HelenP 218 posts

Topic: General Discussion / NICE Guidance on Diabetes

Hi Mark, On the hospital situation...here in Australia I was told by the doctor that it was my responsibility and the nurses would not be involved...great! I took my pump off to have a shower and left it on the bed as I do at home only to find out the nurse had taken it because I was not a diabetic or in need of insulin.

It was a shared room and my room mate was quite happy to report this. Tried to get it back by going to the nurses station but no luck. Ended up getting a message to the doctor who "fixed" the situation. I was without it for over an hour!!!! The nursing staff then took an extraordinary interest in my insulin doses and wanted to record every time I took some insulin...pump users will know how ridiculous this is!

I was in an infectious diseases ward!

Helen

Aug 19, 2016

Julie Meehan 1 post

Topic: DAFNE Online Mobile / DAFNE Excel Spreedsheat

Could I please please please get a copy sent to me at [email protected]. Thanks!!!

Aug 19, 2016

marke 686 posts

Topic: General Discussion / NICE Guidance on Diabetes

The DAFNE Programme team have asked us to publish this information on our news page. It relates to a new document issued by NICE ( UK medical body) regarding Diabetes. If I sound a bit cynical in the news article its because NICE publish lots of guidance but none of it is actually mandatory and so the NHS is free to do what it wants. The idea of people being given structured education within 12 months of Diagnosis would be great if it wasn't for the fact that in my area the waiting list to do a course is about 18 months, So even if you are referred for a course within 12 months you won't actually do one. They also say that Diabetics should be allowed to manage their own diabetes if admitted to hospital, someone needs to tell nurses this Sad

I had to be very firm, borderline rude when they tried to take over my management when I was in hospital. However not everyone is a 'difficult' person like me and will accept their management being taken over on the grounds that the nurse knows best ( not unless they are a Diabetes nurse and even then sometimes no Wink

)

Anyway have a read and see what YOU think......

Aug 11, 2016

rose_02 1 post

Topic: Questions for HCPs / Why ketones with low blood sugars?

Hi,

I was recently diagnosed with type 1 and taken off insulin straight away as my bloods were so low. However, while they remained low off the insulin, I was still developing ketones. My team have no idea why and no tips on what to do, other than keep checking and retaking my insulin but if anyone could give me more advice that would be great!

Aug 11, 2016

RichoDemo 3 posts

Topic: General Discussion / Hypo Awareness

Had diabetes for 32 years. New to Dafne but have been counting carbs. for about 6 years. Is there anyone that's has had hypo awareness. I haven't worked for about 8 months because of this and have been trying all of this time to get it back. Does anyone have any advice. I have just about had enough of diabetes

Aug 7, 2016

Marsbar63 5 posts

Topic: Carbohydrate Counting / Jelly Babies

That's two of us a bit OTT. I refill the tubes from the tubs. Countless tubes in pockets, draws, and just about anywhere they'll fit. Very Happy

Aug 7, 2016

SimonC 78 posts

Topic: Carbohydrate Counting / Jelly Babies

I use Glucotabs - I buy a 12 pack of the 50 in a tub, and use these to fill up the smaller tubes of 10. I have 1 tub of 50 at my work - replaced when needed, and every jacket has a tube of 10 - I know this is a bit over the top, but I was once caught out with no access to fast sugar.

I prefer the raspberry ones, but have noticed that in the tubes of 10, they now do lemon and blueberry ones as well as the orange and raspberry. I like the blueberry ones, but they don't appear to do these in the 50 tubs yet. Buying them in bulk like this saves on the cost, and transferring to the smaller tubes means they are easy to transport about,

I found that once a bag of jelly babies is open, they harden and become inedible if left.

Jul 29, 2016

Daveq 1 post

Topic: Carbohydrate Counting / Jelly Babies

I find Jelly babies very effective, and usually carry 6 in a small plastic coin bag, in my pocket. I take 2, which is 1CP, unless I am very low and then I take 4, as recommended by the DSN. I have been keeping a small plastic box of them in my car, but with the recent hot weather they all melted into one big squishy lump.

Jul 28, 2016

Colin McC 15 posts

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

Met this guy on a recent DAFNE meet & he has been using the freestyle for a while & he sold it to me. Been thinking of getting it for a while now & finally ordered the package on Thurs night & it arrived Mon afternoon, so no problems with stock it appears. First few readings showed LO ( BG less than 2.2! ) but my BG Aviva meter showed readings of 4,5,6 & 5. But after 12 hours approx. the readings become very close, 1 or less, so I am pleased. No problems when going to bed or showering, the sensor stayed on. Would recommend that you make sure that your skin in bone dry though. Very easy to insert the sensor & the reader gives good patterns of what your BG is doing, so you can act quickly. Like most I pick up hypo's but it is beneficial for night-time patterns & high BG'. Yes it is expensive but I think it is worth a try as already I am getting a better understanding of what my BG' are doing.

Jul 27, 2016

Yelekreb 11 posts

Topic: General Discussion / Is the honeymoon over?

Hi, need some help here. I've been diagnosed (T1 LADA) about 18 months and have had pretty good control. I think I've been in the honeymoon phase. A couple of weeks ago I was struggling to keep my BG levels up - as if my pancreas was having a laugh and pumping out extra insulin. This week, it's as if Novorapid isn't working. Post meal mountain ranges that slowly drop, with corrections. Have upped my BASEL, but still struggling to get BG under control. Have changed injection sites, even changed the Insulin pen to a new one. I suspect this is the end of the Honeymoon phase and the end of 'easy' control. The Freestyle Libre is a real help in keeping an eye on things, but does anyone have any experience/tips for this new stage I seem to be facing?

Jul 23, 2016

HelenP 218 posts

Topic: General Discussion / Pump death?

Yep, I have a new pump. I received it on 10/6/16. It is a Minimed 640G. The pump transition has been relatively easy! I have found that I am experiencing far fewer problems with the tubing, cartridge etc than I did with the Animas pump. The new pump is fairly intuitive and only rarely do I make an error. Gave myself two boluses with a meal (inadvertently!!!).

I opted to pay for the Medtronic Carelink system (Continuous Glucose Monitoring). It is expensive. To wear the sensors continuously costs about $6000 a year. They had a special deal and I have purchased/signed up for 12 months supply at $300 per month. They deduct the $300 from your bank account and you get a new box. To set me up with the "serter', the charger for the sensor etc cost me an initial $700 (I did receiver two boxes (2 x 5) of sensors included in that cost). They are very addictive. To be able to press a button on your pump and have it tell you what you BG is, is very reassuring...however it is not always accurate! Post meals is the worst. The greatest difference I have found is 3.7mmol/L which is quite a bit if your target is set at 5.0-6.0. You also have to calibrate it 4 times a day. Recommended times, pre breakfast, lunch, dinner and before going to bed. Our sensors last 6 days (to the hour). The reservoirs last three days but I have not been able to co-ordinate the changes!!! So I am inserting a new sensor every Monday morning and changing the cartridges etc whenever. This means I am without the sensor for at least one day over the weekend. My health fund pays for none of this but they did fund the pump.

Downloading is much simpler with the 640G. Keeping everything charged is also a consideration!!!

The turning off when it thinks it is going low is also a long way from perfect. My experience is that it turns itself off at about 5mmol/L. At that level I do not get hypo symptoms so unless you are expecting it to turn of at a particular time it turns itself off and then turns itself on an hour or so later and for the next hour or so your BG rises to beyond target!!! This needs fine tuning. Still working on the basal settings but very difficult to get more than about 60% within target when target is so tight.

Would I recommend it...not sure. It is certainly time consuming and the alarms can drive you to drink.

Ask me in another month!

Helen

Jul 22, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Pump death?

a brand new pump would definitely be great news, any updates?

Jul 22, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Medical tattoos

If you upload the image to one of the many image hosting site out there, all you need to do is past the image link into the below code, replacing the web address with your image link:

An example below:

Jul 22, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Hello

wow, your seem to be very resistant......

how are your doses now...?

Jul 22, 2016

novorapidboi26 1,819 posts

Topic: General Discussion / Bolus calculator?

If you need to actually get the pump in hand to confirm the bolus delivery does that not eliminate the need for another bolus calculator?

I am assuming your pump can receive your recent blood sugars wirelessly and then go from there.....

what pump are you on?

Jul 16, 2016

Peter 109 posts

Topic: General Discussion / Campign to increase access to Strucured Education

Diabetes UK are currently running a campaign to try and increase access to Structured Education for the UK. It can be found here:http://bit.ly/29rtqoo. You'll be prompted for your name, postal address and e-mail address and the system will generate an e-mail for you to review which is then sent to the Clinical Head of your local CCG. Please take the time to participate. Thanks.

Jul 16, 2016

Peter 109 posts

Topic: General Discussion / Bolus calculator?

Alan, There are issues in writing an app based bolus calculator as NICE consider the result to be a medical device which then needs to go through their safety approval process. See the following thread for the impact on the dafenonline mobile app: http://www.dafneonline.co.uk/forums/1/topics/2769.

Jul 16, 2016

Alzibiff 21 posts

Topic: General Discussion / Bolus calculator?

Apologies if this has been discussed elsewhere but does anybody know of an app/program available for smartphones - I used an iPhone - which will calculate bolus values for a given amount of CHO and BG value, (maybe taking into account active insulin too)? Needless to say, I am using an insulin pump and although it can do this for me already, it is not so convenient when I have the pump wedged into my sock rather than clipped to a belt Smile

Alan

p.s. Just found an app in the iTunes store called "Bolus Wizard" and have downloaded it. S'funny as when I did a search on iTunes using "Bolus" as the search term, it didn't show up - hence my post on the forum Embarassed

Did a search for "Bolus Wizard" in Google and it pointed me to iTunes! Hey ho.

pps The reason I didn't find any apps when I first searched was because I was not searching on my iPhone - my search only showed up apps suitable for the device I was searching on so that explains that. Now .... I have found quite a few bolus calculators but most are not (in my view) very good either because they don't consider variables such as correction values and/or BG results or the units they use for BG are not mmol/l which I am familiar with. I am now trialling another one - cost Â£5.99 - to see how well this fits my requirements

Jul 14, 2016

Type1Bri 11 posts

Topic: General Discussion / Diabetes UK

Hi all
I am doing a 10 mile walk for Diabetes UK.
It's the London Bridges Challenge and would really love it if you could sponsor me
www.justgiving.com/Type1bri

Jul 14, 2016

Type1Bri 11 posts

Topic: General Discussion / My own website

Hi all
I have made a website where I can blog and share useful info for the Type 1 community
Please do check it out
www.type1bri.com
Many thanks

Jul 13, 2016

Davidpratt 1 post

Topic: Carbohydrate Counting / CP free lunch

I want to try a low carb diet as i find it hard to controll my bloods. I have read some of the remarks and i feel i would have better control . I am going to read the book

Aug 19, 2016 HelenP 218 posts	Topic: General Discussion / NICE Guidance on Diabetes Hi Mark, On the hospital situation...here in Australia I was told by the doctor that it was my responsibility and the nurses would not be involved...great! I took my pump off to have a shower and left it on the bed as I do at home only to find out the nurse had taken it because I was not a diabetic or in need of insulin. It was a shared room and my room mate was quite happy to report this. Tried to get it back by going to the nurses station but no luck. Ended up getting a message to the doctor who "fixed" the situation. I was without it for over an hour!!!! The nursing staff then took an extraordinary interest in my insulin doses and wanted to record every time I took some insulin...pump users will know how ridiculous this is! I was in an infectious diseases ward! Helen

Aug 19, 2016 Julie Meehan 1 post	Topic: DAFNE Online Mobile / DAFNE Excel Spreedsheat Could I please please please get a copy sent to me at [email protected]. Thanks!!!

Aug 19, 2016 marke 686 posts	Topic: General Discussion / NICE Guidance on Diabetes The DAFNE Programme team have asked us to publish this information on our news page. It relates to a new document issued by NICE ( UK medical body) regarding Diabetes. If I sound a bit cynical in the news article its because NICE publish lots of guidance but none of it is actually mandatory and so the NHS is free to do what it wants. The idea of people being given structured education within 12 months of Diagnosis would be great if it wasn't for the fact that in my area the waiting list to do a course is about 18 months, So even if you are referred for a course within 12 months you won't actually do one. They also say that Diabetics should be allowed to manage their own diabetes if admitted to hospital, someone needs to tell nurses this I had to be very firm, borderline rude when they tried to take over my management when I was in hospital. However not everyone is a 'difficult' person like me and will accept their management being taken over on the grounds that the nurse knows best ( not unless they are a Diabetes nurse and even then sometimes no ) Anyway have a read and see what YOU think......

Aug 11, 2016 rose_02 1 post	Topic: Questions for HCPs / Why ketones with low blood sugars? Hi, I was recently diagnosed with type 1 and taken off insulin straight away as my bloods were so low. However, while they remained low off the insulin, I was still developing ketones. My team have no idea why and no tips on what to do, other than keep checking and retaking my insulin but if anyone could give me more advice that would be great!

Aug 11, 2016 RichoDemo 3 posts	Topic: General Discussion / Hypo Awareness Had diabetes for 32 years. New to Dafne but have been counting carbs. for about 6 years. Is there anyone that's has had hypo awareness. I haven't worked for about 8 months because of this and have been trying all of this time to get it back. Does anyone have any advice. I have just about had enough of diabetes

Aug 7, 2016 Marsbar63 5 posts	Topic: Carbohydrate Counting / Jelly Babies That's two of us a bit OTT. I refill the tubes from the tubs. Countless tubes in pockets, draws, and just about anywhere they'll fit.

Aug 7, 2016 SimonC 78 posts	Topic: Carbohydrate Counting / Jelly Babies I use Glucotabs - I buy a 12 pack of the 50 in a tub, and use these to fill up the smaller tubes of 10. I have 1 tub of 50 at my work - replaced when needed, and every jacket has a tube of 10 - I know this is a bit over the top, but I was once caught out with no access to fast sugar. I prefer the raspberry ones, but have noticed that in the tubes of 10, they now do lemon and blueberry ones as well as the orange and raspberry. I like the blueberry ones, but they don't appear to do these in the 50 tubs yet. Buying them in bulk like this saves on the cost, and transferring to the smaller tubes means they are easy to transport about, I found that once a bag of jelly babies is open, they harden and become inedible if left.

Jul 29, 2016 Daveq 1 post	Topic: Carbohydrate Counting / Jelly Babies I find Jelly babies very effective, and usually carry 6 in a small plastic coin bag, in my pocket. I take 2, which is 1CP, unless I am very low and then I take 4, as recommended by the DSN. I have been keeping a small plastic box of them in my car, but with the recent hot weather they all melted into one big squishy lump.

Jul 28, 2016 Colin McC 15 posts	Topic: General Discussion / Cyborg Times (new BG meter) Met this guy on a recent DAFNE meet & he has been using the freestyle for a while & he sold it to me. Been thinking of getting it for a while now & finally ordered the package on Thurs night & it arrived Mon afternoon, so no problems with stock it appears. First few readings showed LO ( BG less than 2.2! ) but my BG Aviva meter showed readings of 4,5,6 & 5. But after 12 hours approx. the readings become very close, 1 or less, so I am pleased. No problems when going to bed or showering, the sensor stayed on. Would recommend that you make sure that your skin in bone dry though. Very easy to insert the sensor & the reader gives good patterns of what your BG is doing, so you can act quickly. Like most I pick up hypo's but it is beneficial for night-time patterns & high BG'. Yes it is expensive but I think it is worth a try as already I am getting a better understanding of what my BG' are doing.

Jul 27, 2016 Yelekreb 11 posts	Topic: General Discussion / Is the honeymoon over? Hi, need some help here. I've been diagnosed (T1 LADA) about 18 months and have had pretty good control. I think I've been in the honeymoon phase. A couple of weeks ago I was struggling to keep my BG levels up - as if my pancreas was having a laugh and pumping out extra insulin. This week, it's as if Novorapid isn't working. Post meal mountain ranges that slowly drop, with corrections. Have upped my BASEL, but still struggling to get BG under control. Have changed injection sites, even changed the Insulin pen to a new one. I suspect this is the end of the Honeymoon phase and the end of 'easy' control. The Freestyle Libre is a real help in keeping an eye on things, but does anyone have any experience/tips for this new stage I seem to be facing?

Jul 23, 2016 HelenP 218 posts	Topic: General Discussion / Pump death? Yep, I have a new pump. I received it on 10/6/16. It is a Minimed 640G. The pump transition has been relatively easy! I have found that I am experiencing far fewer problems with the tubing, cartridge etc than I did with the Animas pump. The new pump is fairly intuitive and only rarely do I make an error. Gave myself two boluses with a meal (inadvertently!!!). I opted to pay for the Medtronic Carelink system (Continuous Glucose Monitoring). It is expensive. To wear the sensors continuously costs about $6000 a year. They had a special deal and I have purchased/signed up for 12 months supply at $300 per month. They deduct the $300 from your bank account and you get a new box. To set me up with the "serter', the charger for the sensor etc cost me an initial $700 (I did receiver two boxes (2 x 5) of sensors included in that cost). They are very addictive. To be able to press a button on your pump and have it tell you what you BG is, is very reassuring...however it is not always accurate! Post meals is the worst. The greatest difference I have found is 3.7mmol/L which is quite a bit if your target is set at 5.0-6.0. You also have to calibrate it 4 times a day. Recommended times, pre breakfast, lunch, dinner and before going to bed. Our sensors last 6 days (to the hour). The reservoirs last three days but I have not been able to co-ordinate the changes!!! So I am inserting a new sensor every Monday morning and changing the cartridges etc whenever. This means I am without the sensor for at least one day over the weekend. My health fund pays for none of this but they did fund the pump. Downloading is much simpler with the 640G. Keeping everything charged is also a consideration!!! The turning off when it thinks it is going low is also a long way from perfect. My experience is that it turns itself off at about 5mmol/L. At that level I do not get hypo symptoms so unless you are expecting it to turn of at a particular time it turns itself off and then turns itself on an hour or so later and for the next hour or so your BG rises to beyond target!!! This needs fine tuning. Still working on the basal settings but very difficult to get more than about 60% within target when target is so tight. Would I recommend it...not sure. It is certainly time consuming and the alarms can drive you to drink. Ask me in another month! Helen

Jul 22, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Pump death? a brand new pump would definitely be great news, any updates?

Jul 22, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Medical tattoos If you upload the image to one of the many image hosting site out there, all you need to do is past the image link into the below code, replacing the web address with your image link: An example below:

Jul 22, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Hello wow, your seem to be very resistant...... how are your doses now...?

Jul 22, 2016 novorapidboi26 1,819 posts	Topic: General Discussion / Bolus calculator? If you need to actually get the pump in hand to confirm the bolus delivery does that not eliminate the need for another bolus calculator? I am assuming your pump can receive your recent blood sugars wirelessly and then go from there..... what pump are you on?

Jul 16, 2016 Peter 109 posts	Topic: General Discussion / Campign to increase access to Strucured Education Diabetes UK are currently running a campaign to try and increase access to Structured Education for the UK. It can be found here:http://bit.ly/29rtqoo. You'll be prompted for your name, postal address and e-mail address and the system will generate an e-mail for you to review which is then sent to the Clinical Head of your local CCG. Please take the time to participate. Thanks.

Jul 16, 2016 Peter 109 posts	Topic: General Discussion / Bolus calculator? Alan, There are issues in writing an app based bolus calculator as NICE consider the result to be a medical device which then needs to go through their safety approval process. See the following thread for the impact on the dafenonline mobile app: http://www.dafneonline.co.uk/forums/1/topics/2769.

Jul 16, 2016 Alzibiff 21 posts	Topic: General Discussion / Bolus calculator? Apologies if this has been discussed elsewhere but does anybody know of an app/program available for smartphones - I used an iPhone - which will calculate bolus values for a given amount of CHO and BG value, (maybe taking into account active insulin too)? Needless to say, I am using an insulin pump and although it can do this for me already, it is not so convenient when I have the pump wedged into my sock rather than clipped to a belt Alan p.s. Just found an app in the iTunes store called "Bolus Wizard" and have downloaded it. S'funny as when I did a search on iTunes using "Bolus" as the search term, it didn't show up - hence my post on the forum Did a search for "Bolus Wizard" in Google and it pointed me to iTunes! Hey ho. pps The reason I didn't find any apps when I first searched was because I was not searching on my iPhone - my search only showed up apps suitable for the device I was searching on so that explains that. Now .... I have found quite a few bolus calculators but most are not (in my view) very good either because they don't consider variables such as correction values and/or BG results or the units they use for BG are not mmol/l which I am familiar with. I am now trialling another one - cost Â£5.99 - to see how well this fits my requirements

Jul 14, 2016 Type1Bri 11 posts	Topic: General Discussion / Diabetes UK Hi all I am doing a 10 mile walk for Diabetes UK. It's the London Bridges Challenge and would really love it if you could sponsor me www.justgiving.com/Type1bri

Jul 14, 2016 Type1Bri 11 posts	Topic: General Discussion / My own website Hi all I have made a website where I can blog and share useful info for the Type 1 community Please do check it out www.type1bri.com Many thanks

Jul 13, 2016 Davidpratt 1 post	Topic: Carbohydrate Counting / CP free lunch I want to try a low carb diet as i find it hard to controll my bloods. I have read some of the remarks and i feel i would have better control . I am going to read the book