Hello, I am thinking about buying a continuous glucose monitor to help my daughter manage her diabetes and also to give her a bit more freedom, she suffers from hypo unawareness so we do a lot of tests a day.I am just looking for advice from anyone who has one as I have heard that some can be inaccurate. I need to know if they are really worth the money and do they make a difference? Thanks Martina
Experiences with CGM needed please.
- Thread starter martina
- Start Date
Hi I have researched alot on CGM's reason being i have had type 1 for over 30 years and my hubby had to pack up work in 2009 to become my carer due to me losing all my hypo awareness and after trying on 3 ocassions to run high for several weeks to attempt to bring back my awareness which has failed, i am also looking into getting a CGM. i know that the NICE guidlines are changing in August regarding the CGM but am not quite sure yet what the changes are, but my consultant told me that he is going to get me onto a CGM a.s.a.p, i am hoping the NHS are now going to fund or part fund as the exspence for one of these will be very costly if you privatley self fund. I read the Dexcom is very good. You may want to speak to your daughters consultant bout the this before spending out the thousands of pounds.
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- 8,936
- Type of diabetes
- Type 1
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@Tracey167, as I posted ina similar topic:
If you have questions in terms of costs, then take a look here: http://www.diabetes.co.uk/forum/threads/cgm-fgm-price-comparison.75106/
There is also discusison of NICE guidelines for CGM in this topic: http://www.diabetes.co.uk/forum/thr...elines-its-quite-revealing.79529/#post-887895 and a couple of contributors have mentioned getting it themselves, including @yingtong who may be able to assist you. Lost hypo awareness is a critical part of the case for the CCG, which you seem to already have.
If you have questions in terms of costs, then take a look here: http://www.diabetes.co.uk/forum/threads/cgm-fgm-price-comparison.75106/
There is also discusison of NICE guidelines for CGM in this topic: http://www.diabetes.co.uk/forum/thr...elines-its-quite-revealing.79529/#post-887895 and a couple of contributors have mentioned getting it themselves, including @yingtong who may be able to assist you. Lost hypo awareness is a critical part of the case for the CCG, which you seem to already have.
Flowerpot
Well-Known Member
- Messages
- 424
- Type of diabetes
- Type 1
- Treatment type
- Pump
Hi @martina,
Have you /your daughter discussed trying CGM for a week as most clinics do have one to loan out and/or discussed applying for funding with the diabetes consultant? The main reason for funding is loss of hypo awareness and the funding process can be a bit of a minefield to get through. I am funded due to no hypo awareness and going unconscious and fitting without warning. I've used CGM for 4+ years now and the latest system with the Medtronic 640g pump has proved very accurate and has prevented many serious hypos for me. I still have hypos but only get to the mid/high 2's and mainly the low 3's because my pump suspends basal insulin when it predicts I will reach hypo territory in the next 30 minutes.
The sensors measure interstitial glucose but I have found the discrepancies between blood and interstitial glucose are generally very small and often I get the same reading if my bg is stable.I know some of the earlier sensors had a bad press for inaccuracy but I haven't found this to be the case in the last few years. I've avoided going unconscious all but once in the past 2 years which is fantastic and allows me to live with more confidence, I'm not sure I'd still be here without it! I know the handful of CGM users at my pump clinic have all lost their driving licences which often goes hand in hand with needing to apply for funding.
My findings are that CGM does work very efficiently, I need to be vigilant as I am relying on it to keep me conscious so I do test regularly as well. My life is infinitely safer with CGM and also my control and HbA1c are the best they have been in decades. CGM has made me look at all aspects of what influences my blood sugar and what I can do to improve my control.
For self funding I know the Dexcom system works out a bit less prohibitively expensive but because my consultant wanted a system that suspended insulin delivery to my pump we went for the Medtronic Enlite sensors and pump.
Good luck, I hope you can get some help to give your daughter some more freedom.
Have you /your daughter discussed trying CGM for a week as most clinics do have one to loan out and/or discussed applying for funding with the diabetes consultant? The main reason for funding is loss of hypo awareness and the funding process can be a bit of a minefield to get through. I am funded due to no hypo awareness and going unconscious and fitting without warning. I've used CGM for 4+ years now and the latest system with the Medtronic 640g pump has proved very accurate and has prevented many serious hypos for me. I still have hypos but only get to the mid/high 2's and mainly the low 3's because my pump suspends basal insulin when it predicts I will reach hypo territory in the next 30 minutes.
The sensors measure interstitial glucose but I have found the discrepancies between blood and interstitial glucose are generally very small and often I get the same reading if my bg is stable.I know some of the earlier sensors had a bad press for inaccuracy but I haven't found this to be the case in the last few years. I've avoided going unconscious all but once in the past 2 years which is fantastic and allows me to live with more confidence, I'm not sure I'd still be here without it! I know the handful of CGM users at my pump clinic have all lost their driving licences which often goes hand in hand with needing to apply for funding.
My findings are that CGM does work very efficiently, I need to be vigilant as I am relying on it to keep me conscious so I do test regularly as well. My life is infinitely safer with CGM and also my control and HbA1c are the best they have been in decades. CGM has made me look at all aspects of what influences my blood sugar and what I can do to improve my control.
For self funding I know the Dexcom system works out a bit less prohibitively expensive but because my consultant wanted a system that suspended insulin delivery to my pump we went for the Medtronic Enlite sensors and pump.
Good luck, I hope you can get some help to give your daughter some more freedom.
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Hi thanks for your reply, I had to do a blind CGM with the hospital back in march for 7 days. I have lost all hypo awareness I go as low as 1.8 and I don't feel nothing and I know if it wasn't for my hubby It would be a short time and I would be unconscious. My consultant said there is changes in the NICE guidelines in August 2015 and he will back me 100% to get a CGM. I had a insulin pump back in 2010 and had a really bad experience with it so I am only really interested at the moment with just the CGM. and if all goes well my hubby can return to work.
Tracey167
Tracey167
Hi martina, i was one of the first in uk to try this with limited expectation over managing my own hypoawareness. It is a truly brilliant device that has changed my life so much. It takes a little getting used to but it is life changing. I have two young daughters myself and wouldnt hesitate in them using it if they had diabetes. I use dexcom 7 plus and live in uk. I get it through advanced therapeutics in warwick who are friendly company who will also come out to you to guide your daughter. If you find a supportive consultant it is also available on nhs. Chris
Piper
Member
- Messages
- 13
I have been using the Medtronic Guardian for 5 & a half months.
I have a severe short term memory loss problem thanks to brain damage that occurred thru a diabetic coma so I was really difficult for me to learn how to use it. I was in tears more than once.
The first two months I was still having hypos- mostly because I had forgotten that you shouldn't calibrate the guardian when arrows are on screen.
I even fell down the stairs in a hypo and had a seizure at the bottom, needing glucagon to bring me back in the second month.
But.... For three and a half months I have had ONE SINGLE HYPO- ( and this was because is was on warm up)
and before I had at least one everyday or two.
I love the graph, and this month it's been fantastic because it's been pretty much a straight line.
They say you should change the sensor every week, but I have had one sensor in up to 24 days.
The transmitter gets charged once a week, I have noticed the longer you have the sensor in the less accurate it gets
But it can certainly last longer than the manufacturer recommends.
After you restart the sensor after three days it takes three hours to do the warm up, but I have noticed that if you restart the sensor as a new sensor after two and a half days warm up takes 20 minutes or less
It has given me and my family much more confidence, I have it on vibrate instead on alarm because the alarm isn't very loud.
I have it tucked in my pocket or clipped to my bra depending what I'm wearing and I feel the vibration every time, it's enough to wake me up too.
I would be absolutely devastated if I had to give it back now.
When I became type 1 I was having out of my mind hypos several times a day, taking with them my driving licence, freedom, privacy & independence.
I feel like I now have some independence back
I cannot praise the CGM enough.
I have a severe short term memory loss problem thanks to brain damage that occurred thru a diabetic coma so I was really difficult for me to learn how to use it. I was in tears more than once.
The first two months I was still having hypos- mostly because I had forgotten that you shouldn't calibrate the guardian when arrows are on screen.
I even fell down the stairs in a hypo and had a seizure at the bottom, needing glucagon to bring me back in the second month.
But.... For three and a half months I have had ONE SINGLE HYPO- ( and this was because is was on warm up)
and before I had at least one everyday or two.
I love the graph, and this month it's been fantastic because it's been pretty much a straight line.
They say you should change the sensor every week, but I have had one sensor in up to 24 days.
The transmitter gets charged once a week, I have noticed the longer you have the sensor in the less accurate it gets
But it can certainly last longer than the manufacturer recommends.
After you restart the sensor after three days it takes three hours to do the warm up, but I have noticed that if you restart the sensor as a new sensor after two and a half days warm up takes 20 minutes or less
It has given me and my family much more confidence, I have it on vibrate instead on alarm because the alarm isn't very loud.
I have it tucked in my pocket or clipped to my bra depending what I'm wearing and I feel the vibration every time, it's enough to wake me up too.
I would be absolutely devastated if I had to give it back now.
When I became type 1 I was having out of my mind hypos several times a day, taking with them my driving licence, freedom, privacy & independence.
I feel like I now have some independence back
I cannot praise the CGM enough.
Hi, sorry to hear of your problems. Not sure if things are different in Wales but here if you have hypo unawareness you can get a pump and cgm on the NHS. I have the Medtronic 640G pump with the sensor which is pretty good. Occasionally a blood test is different from the sensor reading but as long as you test a few times a day you calibrate the sensor to keep it up to speed. I now only test about 3 or 4 times a day as cgm is so good.
I saw one reply to say had issues with pump previously but pump and sensor combined work well together.
Tracey167 I am amazed by that! I have had hypo unawareness for 5 years now but I live alone and have a full time job! Pump and cgm are a pain in the backside at times as the alarm goes off when I am sleeping and in work or anywhere really but that is the point of it so I would seriously recommend it. Again easy for me to say as it is funded by my NHS so if not funded then I would struggle to afford it.
Pump and sensors should be on the NHS for anyone with hypo unawareness so if they aren't where you live you should do something about it!!! (Not sure what but maybe write to MP?)
I saw one reply to say had issues with pump previously but pump and sensor combined work well together.
Tracey167 I am amazed by that! I have had hypo unawareness for 5 years now but I live alone and have a full time job! Pump and cgm are a pain in the backside at times as the alarm goes off when I am sleeping and in work or anywhere really but that is the point of it so I would seriously recommend it. Again easy for me to say as it is funded by my NHS so if not funded then I would struggle to afford it.
Pump and sensors should be on the NHS for anyone with hypo unawareness so if they aren't where you live you should do something about it!!! (Not sure what but maybe write to MP?)
Radek_CZ
Newbie
- Messages
- 4
- Type of diabetes
- Parent
- Treatment type
- Pump
Hi martina,
I have a son, he´s got 6th birthday today. If you have problems with hypo, I can only recommend you this system.
Just like the others mentioned higher, the Medtronic pump 640G with Enlite helps a lot.
We are using this pump since May and my son had approx. 4 hypos (under 60) since that time.
Guardian stops insulin dosing before the hypo can come and starts when GL comes back into normal.
The accuracy is very good, but you have to calibrate at least 3 or 4 times a day. That means check blood glucose when the GL curve on CGM is flat without dramatic changes. If you do a calibration when GL rapidly changes, you can disorient the CGM and then it come inaccurate. That´s the most often reason why people report inaccuracy, but they did it by ownselves.
You have to also have on mind, that CGM has 10-15 minutes delay after blood glucose, so when CGM alerts that GL falls down really fast (marked by from 1 up to 3 arrows on display) the real GL is much lower than CGM calls. But after a week you will be able to predict what happen next.
What I heard from other parents, model of Enlite CGM sold before (2nd generation) from Medtronic wasn´t so acccurate, so I had some doubts about the new one, but after these few months - I can only recommend.
The second and I think the most important thing is, that you can react with insulin dosing really quickly.
We changed our basal profile ca. 5 times since May because children often changes the sensitivity to insulin because they have a lot of growth hormones in their bodies (especially in night) and they are mostly blocking efectiveness of insulin. So our basal profile is that we apply ca. twice time more insulin in the night than during a day. And maybe we have to increase a little bit more.
One more effective thing is, that you can look after how your daughter react for different types of food.
For example milk and products from it are really slow by our boy, but for dumplings we need extra charge of insulin.
With CGM you know how fast and when give an insulin dose to prevent extreme highs or lows after food (when insulin act faster than carbs).
Last night we started on 140 and at 1 a.m. the pump stopped because he fel on 94. After 1 hour the GL came on 100 and he woke up at 6:30 with 122. Amazing work, don´t you thing ? Without CGM you have normally no chance to check and solve this situation.
And one fine thing on the end. If you have 640G and Bayer ContourLink glucose meter (normally packed with 640G), you can download all data from CGM and pump to your computer (Carelink website) and look back to the past (graphs, charts and so on) and manage the dosing for future.
If you will have more questions, please write me an replay and I will tell you more details.
I have a son, he´s got 6th birthday today. If you have problems with hypo, I can only recommend you this system.
Just like the others mentioned higher, the Medtronic pump 640G with Enlite helps a lot.
We are using this pump since May and my son had approx. 4 hypos (under 60) since that time.
Guardian stops insulin dosing before the hypo can come and starts when GL comes back into normal.
The accuracy is very good, but you have to calibrate at least 3 or 4 times a day. That means check blood glucose when the GL curve on CGM is flat without dramatic changes. If you do a calibration when GL rapidly changes, you can disorient the CGM and then it come inaccurate. That´s the most often reason why people report inaccuracy, but they did it by ownselves.
You have to also have on mind, that CGM has 10-15 minutes delay after blood glucose, so when CGM alerts that GL falls down really fast (marked by from 1 up to 3 arrows on display) the real GL is much lower than CGM calls. But after a week you will be able to predict what happen next.
What I heard from other parents, model of Enlite CGM sold before (2nd generation) from Medtronic wasn´t so acccurate, so I had some doubts about the new one, but after these few months - I can only recommend.
The second and I think the most important thing is, that you can react with insulin dosing really quickly.
We changed our basal profile ca. 5 times since May because children often changes the sensitivity to insulin because they have a lot of growth hormones in their bodies (especially in night) and they are mostly blocking efectiveness of insulin. So our basal profile is that we apply ca. twice time more insulin in the night than during a day. And maybe we have to increase a little bit more.
One more effective thing is, that you can look after how your daughter react for different types of food.
For example milk and products from it are really slow by our boy, but for dumplings we need extra charge of insulin.
With CGM you know how fast and when give an insulin dose to prevent extreme highs or lows after food (when insulin act faster than carbs).
Last night we started on 140 and at 1 a.m. the pump stopped because he fel on 94. After 1 hour the GL came on 100 and he woke up at 6:30 with 122. Amazing work, don´t you thing ? Without CGM you have normally no chance to check and solve this situation.
And one fine thing on the end. If you have 640G and Bayer ContourLink glucose meter (normally packed with 640G), you can download all data from CGM and pump to your computer (Carelink website) and look back to the past (graphs, charts and so on) and manage the dosing for future.
If you will have more questions, please write me an replay and I will tell you more details.
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