Recent Posts - DAFNE Online

Feb 24, 2018

torana 53 posts

Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results

Hi Dinah, I can empathise with you in this difficult time of chemotherapy. I am only writing from personal experience and of course my suggestions are not medical advice. Over my nearly fifty years on insulins there have been many medical procedures due to Crohns, prostate cancer, pacemaker etc. each one posing huge dilemmas on how to control my diabetes. Crohn’s disease and insulin do not go together due to the use of steroids and the inflammation of the bowel. I have heard to limit the effects of chemo such as nausea steroids are used and of course your body is also trying to heal itself. Like yourself, with Crohn’s my sugars went through the roof due to the use of steroids and inflammation. It is so important if you can to get a team to support you through this difficult time. I had a specialist endocrinologist that was referred to me by my local hospital to assist me adjust my insulin’s whilst on the steroids. Sometimes, like yourself it was two to three times my normal dose which was of course a concern and extremely worrying with your other medical issues. It is important that you contact the hospital for extra help as there must be someone who has the knowledge and ability to assist you with dosages. It seems the chemo department may be able to find such a spec to assist you adjust dosages or even suggest something by ringing up your endo. They should be working together for you. Why not put it in writing to your medical specialists for assistance so you get a reply hopefully straight away. Too many times in hospital for my many procedures doctors and specialists have not understood my predicament with insulin and it has been up to myself. More often than not the nurse just says you know what your doing and I’ll just watch. It was only through my initial contact with this Endo specialist whilst using steroids with insulin did I gain more confidence for dosages for my other operations. Also finally, if you can afford the libre freestyle it would be a tremendous help to constantly check your blood sugars whilst on such high dosages and your body gets back to normal.

Feb 23, 2018

ActionMan 1 post

Topic: DAFNE Online Mobile / Windows phone - carbs & cal app

Anyone know how to get the carbs & cal app on a Windows phone, or a good alternative which will work?

Feb 23, 2018

Dinah 4 posts

Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results

I am Type 1 on Daphne. I have had major operation for Ovarian cancer, followed by Chemo treatment. During sessions 1 and 2 I noticed that my blood sugar tests were much higher than normal and found by increasing my Lantus a lot I gradually managed some control. My second session was similar to the first but due to high liver count results I have had to wait an extra 4 weeks until this third session. In these extra weeks I expected my blood tests results to settle down to normal but they have also been very erratic. I started my third session yesterday and my bedtim BG result was 30.1. I took 1 CP and 6 units of Novorapid. This morning my BG was 20.7. I took 19 units of Lantus (I am normally on 15units) and 8 units of Novorapid (4 to cover CP eaten and 4 to balance). At lunchtime my BG had gone up to 26.3. I took10 units of Novorapid (5 to cover CP eaten and 5 to balance).
Many thanks for any advice.

p.s. I entered my diary results to and from dates but found no place to record them. If you need them you might like to give me instructions!

Feb 23, 2018

Dinah 4 posts

Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results

I am Type 1 on Daphne. I have had major operation for Ovarian cancer, followed by Chemo treatment. During sessions 1 and 2 I noticed that my blood sugar tests were much higher than normal and found by increasing my Lantus a lot I gradually managed some control. My second session was similar to the first but due to high liver count results I have had to wait an extra 4 weeks until this third session. In these extra weeks I expected my blood tests results to settle down to normal but they have also been very erratic. I started my third session yesterday and my bedtim BG result was 30.1. I took 1 CP and 6 units of Novorapid. This morning my BG was 20.7. I took 19 units of Lantus (I am normally on 15units) and 8 units of Novorapid (4 to cover CP eaten and 4 to balance). At lunchtime my BG had gone up to 26.3. I took10 units of Novorapid (5 to cover CP eaten and 5 to balance).

Feb 22, 2018

Garry 328 posts

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

Well it works. I am able to read sensors using both Libre reader and the Libre iPhone App. I say sensors as the first one I started with the reader on Tuesday night clapped out this evening (Thursday) and would not read using either device....so less than 2 days service. Another phone call to Libre in the morning now.

Feb 12, 2018

HelenP 218 posts

Topic: Questions for HCPs / Insulin Pump Query

Andy, I sometimes get erratic readings after the set change. Endocrinologist says the new set is settling in. I have been a diabetic for 40 years and have had a lot of injections (predominantly into my abdomen)...theory is I have damaged the underlying layer so it takes a while to establish a pathway. I occasionally experience some irritation around the point of insertion if I let the set go for more than about 3.5 days and I think this impacts on BGs (i.e. raising them a little...not quite an infection but certainly slightly inflamed).

Helen

Feb 11, 2018

AMcD 38 posts

Topic: Questions for HCPs / Insulin Pump Query

Does anyone else experience higher than normal BG levels prior to an insulin set change? I find the insulin seems a lot less effective after about day 3 of a vial in the pump but after changing the insulin vial and set BGs are back to normal. I would appreciate any comments whether pump users experience this or not.

Thanks in advance.. Andy

Feb 11, 2018

Garry 328 posts

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

Thanks for your knowledge share ma2swr. Very helpful. I’ll do as recommended and hopefully be able to read from reader or phone. Much obliged.

Feb 10, 2018

ma2swr 1 post

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

Speaking with the rep when i had a test of the system, both devices need to be paired within the first 30 minutes. It needs to be done with the hand unit first if you wish to use both, followed by the phone, otherwise it will not work, and locks out the handset device. However, if you get this right, you can use them interchangeably - although readings taken on the handset are only viewable once they have been uploaded or got off the machine, whilst the app will maintain a full record.
It is useful, and can be brilliant, but do need to resist the urge to compensate for what the meter appears to show, as you may still have live insulin, and potentially will undo any good from dose adjusting.
There will be moves towards closed loop systems, where this technology will be indispensible, but as it is not yet 'properly' on the nhs, it very quickly gets expensive, and so is really most use for a focused 2 week dive into readings, such as for sport, or to really nail down out of zone numbers.

Feb 8, 2018

Garry 328 posts

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

Have loaded it on my iOS 11 apple phone...and it looks fine...except once you have started a new sensor with an Abbott Libre reader the iPhone App will not read it. The sensor needs to be started from the App. I'll now need wait another 12 days to find out if it works. I'll give feedback then. I think the implication is that one sensor - one reader...whichever you choose to start a sensor off is the only one that can read it. I hoped that they would double up to provide flexibility, as there have been times when I have forgotten to put the reader in my pocket.

Feb 8, 2018

Colin McC 15 posts

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

I received an email from Abbotts regarding the freestyle libre-link app. Looks as if this is available now for both android ( OS version 5 or higher) & iPhone (OS11, IPhone 7 or higher). May give this a try as I have had my reader for almost 2 years now and tis good to have a back-up just in case. Also may save as one less object to carry around. Looks like the same readings as on the reader and tis free!

Feb 8, 2018

Colin McC 15 posts

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

Regarding the freestyle reserve stock, I placed a re-order and did not received until 15 days later. Apparently Abbotts have low reserve stock due to high demand, which makes me wonder if some CCG' have approved for type 1 diabetics. In December my GP told me the CCG for Dartford, Gravesham & Swanley Kent had not approved, but they have another sometime this month to discuss again. Fingers crossed huh.

Feb 8, 2018

annegray02 3 posts

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

I checked out the app for phone. Will not use it though for the sensor lets me check ketone levels

Peter said:
Speaking to an Abbott representative at the DAFNE Collaborative last week, he said that they are about to announce an App which will replace the current reader needed to see glucose levels. The first version will be Android only, but will replace the need to purchase the reader altogether for those who haven't made that investment yet. IOS version to follow.

Feb 8, 2018

annegray02 3 posts

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

Yes Garry I had some problems with Abbott supplies too, but this year has been fine. Freestyle Lybra I believe was manufactured in France but now I think some are being produced in UK so perhaps the stocks will reach you faster.
My first 2 sensors fell off my arm and were replaced. I only check before a meal, going to bed and 3am so can fit the 'missing hour' between. Congratulations on going round the world. BG control must have been really challenging.
What I learned on my weeks Dafne coarse is going to help though.

Feb 7, 2018

Simon Quinnell 16 posts

Topic: General Discussion / Levemir Going Off

Hi All,

I know this thread is now quite old, so thank you for all your feedback, however, I've stumbled across an article tonight which may explain why my insulin is going off!

https://medicalxpress.com/news/2018-02-insulin-quality-diabetes-experts-scrambling.html

What do you think?

Simon.

Feb 7, 2018

Garry 328 posts

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

Well done annegray02, most impressed by your exercise regime.
I started using Freestyle Libre just over two years ago before I started using a pump. Exercise BG control has always been difficult for me and in order to try to improve my control when exercising, I took the plunge.
I particularly enjoy cycling and had had a number of hypoglycaemic events on longer rides which had undermined my confidence.
Don't know whether my experience is representative but I can share a few things:
Ordering Freestyle Libre isn't a problem, however supply can be. Particularly when you need supply for a special event.
I ordered three weeks before going round the world, emphasising to the staff taking my telephone order that they were needed before 23/10/17. When they did not arrive in two weeks I followed up by phone the week before departure to discover no stock and they would not prioritise delivery. They arrived 4 days after I had left. Time changes hamper my control and I was keen to have the help of constant BG monitoring. My DSNs advice on pump time management helped overcome some of those difficulties however. I had just enough sensors to last the six week trip but had no spares. Needless to say, I had a failure 3 days after fitting a new sensor mid trip and was left short for the end of the holiday.
The warehouse is frequently empty nowadays and my last order 24/01/18 for yet another replacement sensor following a failure has not arrived yet.
Be warned.
The latest failed sensor was fitted before bed time avoiding the starting 'missing hour' of monitoring. It showed LO overnight so was changed at waking. I was advised on requesting a replacement that sensors may sometimes take 24 hours to read. I told them that I pay £50 a go for a sensor that gives me 24 hour coverage for 14 days not 13 days and that I thought 9 hours 'trial' start up was not reasonable. I wasn't best pleased.
I have been pressing my Local Heath Authority to give me details of when Freestyle Libre will be prescribed here and what the selection criteria will be. So far I have hit a brick wall of meeting arranged in the future followed by a meeting will be arranged in the future...followed by a....well you know the score.
I have to agree annegray02, the price must come down. I would love to know what the NHS pays for them now that they are prescribable in some areas.

Feb 24, 2018 torana 53 posts	Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results Hi Dinah, I can empathise with you in this difficult time of chemotherapy. I am only writing from personal experience and of course my suggestions are not medical advice. Over my nearly fifty years on insulins there have been many medical procedures due to Crohns, prostate cancer, pacemaker etc. each one posing huge dilemmas on how to control my diabetes. Crohn’s disease and insulin do not go together due to the use of steroids and the inflammation of the bowel. I have heard to limit the effects of chemo such as nausea steroids are used and of course your body is also trying to heal itself. Like yourself, with Crohn’s my sugars went through the roof due to the use of steroids and inflammation. It is so important if you can to get a team to support you through this difficult time. I had a specialist endocrinologist that was referred to me by my local hospital to assist me adjust my insulin’s whilst on the steroids. Sometimes, like yourself it was two to three times my normal dose which was of course a concern and extremely worrying with your other medical issues. It is important that you contact the hospital for extra help as there must be someone who has the knowledge and ability to assist you with dosages. It seems the chemo department may be able to find such a spec to assist you adjust dosages or even suggest something by ringing up your endo. They should be working together for you. Why not put it in writing to your medical specialists for assistance so you get a reply hopefully straight away. Too many times in hospital for my many procedures doctors and specialists have not understood my predicament with insulin and it has been up to myself. More often than not the nurse just says you know what your doing and I’ll just watch. It was only through my initial contact with this Endo specialist whilst using steroids with insulin did I gain more confidence for dosages for my other operations. Also finally, if you can afford the libre freestyle it would be a tremendous help to constantly check your blood sugars whilst on such high dosages and your body gets back to normal.

Feb 23, 2018 ActionMan 1 post	Topic: DAFNE Online Mobile / Windows phone - carbs & cal app Anyone know how to get the carbs & cal app on a Windows phone, or a good alternative which will work?

Feb 23, 2018 Dinah 4 posts	Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results I am Type 1 on Daphne. I have had major operation for Ovarian cancer, followed by Chemo treatment. During sessions 1 and 2 I noticed that my blood sugar tests were much higher than normal and found by increasing my Lantus a lot I gradually managed some control. My second session was similar to the first but due to high liver count results I have had to wait an extra 4 weeks until this third session. In these extra weeks I expected my blood tests results to settle down to normal but they have also been very erratic. I started my third session yesterday and my bedtim BG result was 30.1. I took 1 CP and 6 units of Novorapid. This morning my BG was 20.7. I took 19 units of Lantus (I am normally on 15units) and 8 units of Novorapid (4 to cover CP eaten and 4 to balance). At lunchtime my BG had gone up to 26.3. I took10 units of Novorapid (5 to cover CP eaten and 5 to balance). Many thanks for any advice. p.s. I entered my diary results to and from dates but found no place to record them. If you need them you might like to give me instructions!

Feb 23, 2018 Dinah 4 posts	Topic: Questions for HCPs / Effect of Chemotherapy treatment on Blood Glucose test results I am Type 1 on Daphne. I have had major operation for Ovarian cancer, followed by Chemo treatment. During sessions 1 and 2 I noticed that my blood sugar tests were much higher than normal and found by increasing my Lantus a lot I gradually managed some control. My second session was similar to the first but due to high liver count results I have had to wait an extra 4 weeks until this third session. In these extra weeks I expected my blood tests results to settle down to normal but they have also been very erratic. I started my third session yesterday and my bedtim BG result was 30.1. I took 1 CP and 6 units of Novorapid. This morning my BG was 20.7. I took 19 units of Lantus (I am normally on 15units) and 8 units of Novorapid (4 to cover CP eaten and 4 to balance). At lunchtime my BG had gone up to 26.3. I took10 units of Novorapid (5 to cover CP eaten and 5 to balance).

Feb 22, 2018 Garry 328 posts	Topic: General Discussion / Cyborg Times (new BG meter) Well it works. I am able to read sensors using both Libre reader and the Libre iPhone App. I say sensors as the first one I started with the reader on Tuesday night clapped out this evening (Thursday) and would not read using either device....so less than 2 days service. Another phone call to Libre in the morning now.

Feb 12, 2018 HelenP 218 posts	Topic: Questions for HCPs / Insulin Pump Query Andy, I sometimes get erratic readings after the set change. Endocrinologist says the new set is settling in. I have been a diabetic for 40 years and have had a lot of injections (predominantly into my abdomen)...theory is I have damaged the underlying layer so it takes a while to establish a pathway. I occasionally experience some irritation around the point of insertion if I let the set go for more than about 3.5 days and I think this impacts on BGs (i.e. raising them a little...not quite an infection but certainly slightly inflamed). Helen

Feb 11, 2018 AMcD 38 posts	Topic: Questions for HCPs / Insulin Pump Query Does anyone else experience higher than normal BG levels prior to an insulin set change? I find the insulin seems a lot less effective after about day 3 of a vial in the pump but after changing the insulin vial and set BGs are back to normal. I would appreciate any comments whether pump users experience this or not. Thanks in advance.. Andy

Feb 11, 2018 Garry 328 posts	Topic: General Discussion / Cyborg Times (new BG meter) Thanks for your knowledge share ma2swr. Very helpful. I’ll do as recommended and hopefully be able to read from reader or phone. Much obliged.

Feb 10, 2018 ma2swr 1 post	Topic: General Discussion / Cyborg Times (new BG meter) Speaking with the rep when i had a test of the system, both devices need to be paired within the first 30 minutes. It needs to be done with the hand unit first if you wish to use both, followed by the phone, otherwise it will not work, and locks out the handset device. However, if you get this right, you can use them interchangeably - although readings taken on the handset are only viewable once they have been uploaded or got off the machine, whilst the app will maintain a full record. It is useful, and can be brilliant, but do need to resist the urge to compensate for what the meter appears to show, as you may still have live insulin, and potentially will undo any good from dose adjusting. There will be moves towards closed loop systems, where this technology will be indispensible, but as it is not yet 'properly' on the nhs, it very quickly gets expensive, and so is really most use for a focused 2 week dive into readings, such as for sport, or to really nail down out of zone numbers.

Feb 8, 2018 Garry 328 posts	Topic: General Discussion / Cyborg Times (new BG meter) Have loaded it on my iOS 11 apple phone...and it looks fine...except once you have started a new sensor with an Abbott Libre reader the iPhone App will not read it. The sensor needs to be started from the App. I'll now need wait another 12 days to find out if it works. I'll give feedback then. I think the implication is that one sensor - one reader...whichever you choose to start a sensor off is the only one that can read it. I hoped that they would double up to provide flexibility, as there have been times when I have forgotten to put the reader in my pocket.

Feb 8, 2018 Colin McC 15 posts	Topic: General Discussion / Cyborg Times (new BG meter) I received an email from Abbotts regarding the freestyle libre-link app. Looks as if this is available now for both android ( OS version 5 or higher) & iPhone (OS11, IPhone 7 or higher). May give this a try as I have had my reader for almost 2 years now and tis good to have a back-up just in case. Also may save as one less object to carry around. Looks like the same readings as on the reader and tis free!

Feb 8, 2018 Colin McC 15 posts	Topic: General Discussion / Cyborg Times (new BG meter) Regarding the freestyle reserve stock, I placed a re-order and did not received until 15 days later. Apparently Abbotts have low reserve stock due to high demand, which makes me wonder if some CCG' have approved for type 1 diabetics. In December my GP told me the CCG for Dartford, Gravesham & Swanley Kent had not approved, but they have another sometime this month to discuss again. Fingers crossed huh.

Feb 8, 2018 annegray02 3 posts	Topic: General Discussion / Cyborg Times (new BG meter) I checked out the app for phone. Will not use it though for the sensor lets me check ketone levels Peter said: Speaking to an Abbott representative at the DAFNE Collaborative last week, he said that they are about to announce an App which will replace the current reader needed to see glucose levels. The first version will be Android only, but will replace the need to purchase the reader altogether for those who haven't made that investment yet. IOS version to follow.

Feb 8, 2018 annegray02 3 posts	Topic: General Discussion / Cyborg Times (new BG meter) Yes Garry I had some problems with Abbott supplies too, but this year has been fine. Freestyle Lybra I believe was manufactured in France but now I think some are being produced in UK so perhaps the stocks will reach you faster. My first 2 sensors fell off my arm and were replaced. I only check before a meal, going to bed and 3am so can fit the 'missing hour' between. Congratulations on going round the world. BG control must have been really challenging. What I learned on my weeks Dafne coarse is going to help though.

Feb 7, 2018 Simon Quinnell 16 posts	Topic: General Discussion / Levemir Going Off Hi All, I know this thread is now quite old, so thank you for all your feedback, however, I've stumbled across an article tonight which may explain why my insulin is going off! https://medicalxpress.com/news/2018-02-insulin-quality-diabetes-experts-scrambling.html What do you think? Simon.

Feb 7, 2018 Garry 328 posts	Topic: General Discussion / Cyborg Times (new BG meter) Well done annegray02, most impressed by your exercise regime. I started using Freestyle Libre just over two years ago before I started using a pump. Exercise BG control has always been difficult for me and in order to try to improve my control when exercising, I took the plunge. I particularly enjoy cycling and had had a number of hypoglycaemic events on longer rides which had undermined my confidence. Don't know whether my experience is representative but I can share a few things: Ordering Freestyle Libre isn't a problem, however supply can be. Particularly when you need supply for a special event. I ordered three weeks before going round the world, emphasising to the staff taking my telephone order that they were needed before 23/10/17. When they did not arrive in two weeks I followed up by phone the week before departure to discover no stock and they would not prioritise delivery. They arrived 4 days after I had left. Time changes hamper my control and I was keen to have the help of constant BG monitoring. My DSNs advice on pump time management helped overcome some of those difficulties however. I had just enough sensors to last the six week trip but had no spares. Needless to say, I had a failure 3 days after fitting a new sensor mid trip and was left short for the end of the holiday. The warehouse is frequently empty nowadays and my last order 24/01/18 for yet another replacement sensor following a failure has not arrived yet. Be warned. The latest failed sensor was fitted before bed time avoiding the starting 'missing hour' of monitoring. It showed LO overnight so was changed at waking. I was advised on requesting a replacement that sensors may sometimes take 24 hours to read. I told them that I pay £50 a go for a sensor that gives me 24 hour coverage for 14 days not 13 days and that I thought 9 hours 'trial' start up was not reasonable. I wasn't best pleased. I have been pressing my Local Heath Authority to give me details of when Freestyle Libre will be prescribed here and what the selection criteria will be. So far I have hit a brick wall of meeting arranged in the future followed by a meeting will be arranged in the future...followed by a....well you know the score. I have to agree annegray02, the price must come down. I would love to know what the NHS pays for them now that they are prescribable in some areas.