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[Diabetes] General Chat and Support Thread
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Even though they (cgm) is sipping interstitial fluid, tis scary accurate most of the time
The most useful bit is the rate-of-falling alarm and low alarm ( you can catch hypos before they happen )
If you use an iphone as the reciever someone else can watch it on another phone across the internet ( useful for kids etc)
I've found the CGM to be very hit and miss, sometimes its accurate, sometimes it is way way off. A recent example being a time where my CGM told me I was 18.5 or something, whereas my finger prick checks said I was in fact 6.2
So for me, the CGM can be useful, but it can also be a pain in the arse tbh.
(Enlite sensors here...)0 -
Alanstrainor wrote: »I've found the CGM to be very hit and miss, sometimes its accurate, sometimes it is way way off. A recent example being a time where my CGM told me I was 18.5 or something, whereas my finger prick checks said I was in fact 6.2
So for me, the CGM can be useful, but it can also be a pain in the arse tbh.
(Enlite sensors here...)
TBF it works both ways, several times (well, a few anyway) I test my finger twice and find that they are so far apart that it was clearly an error, leading to a third test to tell which one was accurate.0 -
TBF it works both ways, several times (well, a few anyway) I test my finger twice and find that they are so far apart that it was clearly an error, leading to a third test to tell which one was accurate.
I honestly can't say I agree. I find that finger pricks are generally within a 15% range. Unless your fingers are wet, or dirty (especially after chopping food for example) then results tend to line up with what I feel. Or multiple checks line up for me too. I would check very frequently also!0 -
Alanstrainor wrote: »I honestly can't say I agree. I find that finger pricks are generally within a 15% range. Unless your fingers are wet, or dirty (especially after chopping food for example) then results tend to line up with what I feel. Or multiple checks line up for me too. I would check very frequently also!
The majority are but I do get curve balls in there now and again, eg first says 12.1, I feel it's wrong, check twice more to see it is 19.1 and 19.2. Happens more with hypos, check once and it is 6, check twice more and they are both at 2.2
It is rare, but it does happen, my fingers look like a donald trump voodoo doll. Just playing devils advocate, don't trust everything if it doesn't feel right.
Do you think that the readings on the CGM are wrong due to technical issues or because the glucose level is extremely different from circulating levels at that time? The first being a far more serious concern as presumably the latter wuld catch up.
I also think that it should be clear, that CGM is not meant to replace BG testing but to compliment it and insulin dosing. At the minute, it would be fair to say I test between 10 and 20 times a day. If I ever get CGM, I presume this will reduce down to the number my Diabetic team recommend eg 5 or 6 times a day.
On a side note, just woke up 40 minutes ago with, tá tart an domhain orm. At 27.3, it is not a good start to Saturday.0 -
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Hi folks, type 2 over 10 years. Has anyone heard about the 8 week blood sugar diet? Is it just another fad or has anyone tried it? I keep hearing that it can cure your diabetes but is the regime too strict?0
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My endo told me today that the Freestyle Libre will apparently be launching here in Ireland over the summer and hopes to get one for me... I presume that he means that it will be available on the LTI scheme. I've heard a lot of good things about it!
My HbA1c today was 8, does anyone know if that is good for someone who was diagnosed (as a type 1) 4 weeks ago? I've seen some people online saying theirs was in the mid-teens around the time of diagnosis; is that typical for type 1s?
Thanks0 -
My endo told me today that the Freestyle Libre will apparently be launching here in Ireland over the summer and hopes to get one for me... I presume that he means that it will be available on the LTI scheme. I've heard a lot of good things about it!
My HbA1c today was 8, does anyone know if that is good for someone who was diagnosed (as a type 1) 4 weeks ago? I've seen some people online saying theirs was in the mid-teens around the time of diagnosis; is that typical for type 1s?
Thanks
HbA1c of 8 after 4 weeks is very good! Considering my BG was 33 when I was diagnosed, I can only imagine it was in the 20s for weeks, and so my HbA1c would have been in the teens I imagine.
A reading of 8 even after a few years, while not ideal, is certainly not the worst that clinics are seeing on an ongoing basis.0 -
HbA1c of 8 after 4 weeks is very good! Considering my BG was 33 when I was diagnosed, I can only imagine it was in the 20s for weeks, and so my HbA1c would have been in the teens I imagine.
A reading of 8 even after a few years, while not ideal, is certainly not the worst that clinics are seeing on an ongoing basis.
Thanks, that's good to know! Mine was over 20 at diagnosis in A&E, but my ketones were at 5.6 so I'm sure mine had been high for a few weeks (unquenchable thirst stated around 3 weeks before). But I've made a lot of changes in my lifestyle and diet since being diagnosed and have only had one day where a test showed levels over 7.0 since diagnosis. It is usually between 4.5-6.5 when testing, so, hopefully I can stay this way and keep the HbA1c going down0 -
Hi All,
I stumbled across this thread - I was a long time lurker years ago when i was using Boards.ie but life got in the way and Boards took a back seatBut seen a few people mentioning the FreeStyle Libre and just wanted to offer my two cents to the conversation.
My background -
29year old female, 18years diabetic on insulin pens (Novorapid/Lantus) 5x per day, HB1Ac (in old money) of between 7-8 and under the care of JOH Limerick.
I'm in Limerick but managed to get a Freestyle Libre shipped from Holland back in November. Between changing IP settings on my laptop and needing a Dutch address - it was a traumatic experienceBut I've used three sensors since November and my experience:
- Ease of Use - Incredibly easy to use and surprising quick and painless to put on. You can have it on the back of your arm in less than a minute and you can have your first scan after 60mins. Each sensor then last 14days from the point of first scan.
-Battery Life - I had the scanner lasting for over 5+days and took only a couple of hours to charge.
- Allergies - I had no allergic reaction to the sensors. I'm a member of the Facebook Freestyle Libre group and I can see loads of people have had reactions in the UK and other EU countries but luckily I wasn't one of them. It looks like the amount of reactions has decreased judging by the FB posts and I think this can be attributed to Abbott changing the formula for the adhesive.
- Accuracy - First scan in the morning ALWAYS matched my finger prick meter but after that it was always between 2/3 mmols off (always higher for me). I reckon the morning was always spot on because no food and no exercise i.e. stable environment so should be accurate.
- Maintenance - I could have showers/play sport etc with it on and found it worked just fine. Couple of times I forgot it was there and I got a fright!! But you need to be careful not to knock it off your arm with doors or sport etc because you cannot reapply to your arm.
- Cost - It cost me 65e per sensor and each sensor lasts only 14days (you can't squeeze any more out of it).....very costly and thats why I haven't got one in a few months.
But in conclusion, it is a really good device if you want to know the range of blood sugar you are in but I wouldn't rely on it for total accuracy. It is great for spotting trends throughout the day such as a spike around 11am for me meaning I can take a unit or two of insulin.
It is also good for those occasions where you need a peace of mind and you need a security blanket to know you're grand For example, I was going mountain biking in Ballyhoura for the first time and I was afraid of what the level of exercise would do to to me in such an isolated place. Put the Libre on the night before and popped the scanner in my pocket and as I was cycling I could scan my arm and it told me what I was......told me I was just unfit and wasn't going to die from diabetes reasons!!It would be great to get it on LTI book because as I said I found that the peace of mind alone it gave me was fantastic and you could relax a bit more.
Sorry for the long post - just my thoughts! Let me know if you have questions...happy to answer
Acapella0 -
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hello - is there any way you can have type 2 Diabetes but your urine and blood tests come back clear? - every time I get something wrong I google (i know I shouldnt) and it points to Type 2 Diabetes. I have googled before about blurry eyes, high blood pressure, tiredness, increased peeing, dizziness, feeling like Im gonna pass out when im hungry and other things and it points to T2 Diabetes - the other week I googled because my cuts and spots are taking far longer to heal than they used to and it threw up Diabetes yet again ... but I was checked last year by GP and tests come back clear (well apart from increased creatine and bit of high chollesterol) are the Urine and Blood tests the only tests that decide if you have Diabetes or are there any other tests that can be done , and are the tests always accurate or can they throw up false readings? thanks.0
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Andy From Sligo wrote: »hello - is there any way you can have type 2 Diabetes but your urine and blood tests come back clear? - every time I get something wrong I google (i know I shouldnt) and it points to Type 2 Diabetes. I have googled before about blurry eyes, high blood pressure, tiredness, increased peeing, dizziness, feeling like Im gonna pass out when im hungry and other things and it points to T2 Diabetes - the other week I googled because my cuts and spots are taking far longer to heal than they used to and it threw up Diabetes yet again ... but I was checked last year by GP and tests come back clear (well apart from increased creatine and bit of high chollesterol) are the Urine and Blood tests the only tests that decide if you have Diabetes or are there any other tests that can be done , and are the tests always accurate or can they throw up false readings? thanks.
if you do have T2 then a blood test will show it, assuming they do a hba1c as part of the test. The urine tests are next to useless. i had one when i first went to my gp and it came back negative so the gp told me i was fine and tried to send me on my way. If i hadnt insisted on a blood test i could have been left undiagnosed for months. In short go back to your gp, ask them for another blood test and insist they do a hba1c as part of it. if they tell you that they have already done one then ask for the results. if the results are in the normal range then ask your gp to further tests to find out what actually is wrong with you. keep at them until they give you an answer.0 -
ohnonotgmail wrote: »if you do have T2 then a blood test will show it, assuming they do a hba1c as part of the test. The urine tests are next to useless. i had one when i first went to my gp and it came back negative so the gp told me i was fine and tried to send me on my way. If i hadnt insisted on a blood test i could have been left undiagnosed for months. In short go back to your gp, ask them for another blood test and insist they do a hba1c as part of it. if they tell you that they have already done one then ask for the results. if the results are in the normal range then ask your gp to further tests to find out what actually is wrong with you. keep at them until they give you an answer.
Thanks for the reply ohnonotgmail - will defo go back and ask if they done that hba1c as part of the test (avoiding that look they give you when they think you are trying to tell them their job!)0 -
Thanks, that's good to know! Mine was over 20 at diagnosis in A&E, but my ketones were at 5.6 so I'm sure mine had been high for a few weeks (unquenchable thirst stated around 3 weeks before). But I've made a lot of changes in my lifestyle and diet since being diagnosed and have only had one day where a test showed levels over 7.0 since diagnosis. It is usually between 4.5-6.5 when testing, so, hopefully I can stay this way and keep the HbA1c going down
Sorry for the delay in reply.
I'm both impressed and jealous! Just keep tracking your carbohydrate intake and keep up your exercise and you'll keep your hbA1c at good levels.
I meant to ask, is the Libre definitely coming or was it an off the cuff comment by your consultant?0 -
it should be available on your LTI card no, just get your consultant to add it to your script
I rang up about it and they said that they can't get the Libre on LTI, even if the consultant requests it.
The good news is that they said you can get the Dexcom on LTI.
They also said that Abbott have been working with the HSE to try and get it onto LTI, but nothing has materialised yet.
So hopefully the talk of it coming this summer is true!0 -
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I know you can't get the Libre yet but I seen on Twitter people have got the pods/attachments through their LTI. Maybe a clerical error but it is possible AFAIK
Interesting!
Did their consultant or GP give them the script?
If I could do that, I'd happily buy the monitor! Going to call VHI now and see will they over any of the cost of them if I can't get them on LTI.0 -
Interesting!
Did their consultant or GP give them the script?
If I could do that, I'd happily buy the monitor! Going to call VHI now and see will they over any of the cost of them if I can't get them on LTI.
No idea, I will see can I dig out the message. I know if I want something that the Consultant won't write, I go to my GP. But this only works on small things, that may not flag. It could just be complete luck that the tweeter got it.0 -
No idea, I will see can I dig out the message. I know if I want something that the Consultant won't write, I go to my GP. But this only works on small things, that may not flag. It could just be complete luck that the tweeter got it.
Interesting, I might try it anyway.
Get my GP to put it on my script, then see if I can get it in the chemist.
If it works, I'll buy the monitor then.
I mean I can get the Dexcom anyway, but I'm just drawn in by the fact that I don't actually have to carry the Libre all the time to get CGM.0 -
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Interesting, I might try it anyway.
Get my GP to put it on my script, then see if I can get it in the chemist.
If it works, I'll buy the monitor then.
I mean I can get the Dexcom anyway, but I'm just drawn in by the fact that I don't actually have to carry the Libre all the time to get CGM.
What Dexcom monitor are you able to get on the LTI?
Yeah, the Libre comment was off the cuff!0 -
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Thriveabetes is a conference for people with type 1 diabetes in Ireland (adults living with & parents of children with). It is completely organised by volunteers who live with diabetes and focuses on the psychosocial aspects of living decades with a chronic illness.
I write a blog to help connect people, much like this thread on Boards does, and over the last couple of months we have been featuring different members of the diabetes community. I thought that you might be interested to read some of them. I know I love to find more people like me out there.
This week features A Newly Diagnosed Family's story
Marie Ronan, from Co. Meath, whose son, Jack age 8 was diagnosed just 15 months ago.
We have also featured lots of adults living with type 1 d such as a lady who has been using an insulin pump for 30 years (!!!!), the Irish representative with IDF;s Young Leader in diabetes and a sucessful amateur cyclist heading for the pro circuit. http://thriveabetes.ie/index.php/blog/
I hope you enjoy it!0 -
Thriveabetes is a conference for people with type 1 diabetes in Ireland (adults living with & parents of children with). It is completely organised by volunteers who live with diabetes and focuses on the psychosocial aspects of living decades with a chronic illness.
I write a blog to help connect people, much like this thread on Boards does, and over the last couple of months we have been featuring different members of the diabetes community. I thought that you might be interested to read some of them. I know I love to find more people like me out there.
This week features A Newly Diagnosed Family's story
Marie Ronan, from Co. Meath, whose son, Jack age 8 was diagnosed just 15 months ago.
We have also featured lots of adults living with type 1 d such as a lady who has been using an insulin pump for 30 years (!!!!), the Irish representative with IDF;s Young Leader in diabetes and a sucessful amateur cyclist heading for the pro circuit. http://thriveabetes.ie/index.php/blog/
I hope you enjoy it!
This is a great idea, thank you!
However, I was recently thinking about all of the different support networks and online communities that exist.
I don't know if it's just me noticing it, and I reckon the following thoughts that I have are due to the fact that after a few years of having diabetes, people/diabetics don't need to reach out as much and get help. However, so much of the diabetes community seems to be parents of children with diabetes rather than people with diabetes.
I'm probably going to come across as a bit of an asshole, but there's just something about it that doesn't sit right with me. It's almost like they've taken over.
Is there a better opportunity to breaking down conversations into those that have diabetes, and those that help people/children with diabetes?
I wrote an absolute essay (even compared to this comment!) before deleting it and editing it down to just this, because I can't seem to articulate my thoughts, but I'd love to hear other peoples thoughts on this.
I almost feel that the way in which it is discussed, especially online where there is a pretty permanent record of it, it's going to make children read back over it and feel they were a burden and caused a lot of problems for their parents.
I think we can all agree that diabetes and chronic illness has a serious impact on mental health, regardless of the added burden of how it has changed other peoples lives.
The way in which many families talk about it seems to come from a belief that there is an endpoint. That it can be conquered, and then the world returns to normal.
It might be that way for you when your kid hits anywhere between 16–21 and starts to do their own thing — but that kid/now adult still has to live their life with it. There's no endpoint with diabetes.
I'm really conflicted between letting your child have a childhood, but also having them understand that this is how life is but working/coping with it is very much doable, rather than it be being a catastrophe that you are always trying to recover from.
It just seems that many parents are doing it in a way that will have a negative impact for the child later in life.
I don't know, I just can't get my head around it but would love to hear other thoughts on it.0 -
C-Shore - I do agree somewhat that the children of the people posting about diabetes in public blogs might not appreciate some of the stuff that gets posted. Understandably, parents do everything they can to get more help/information on diabetes so more power to them there!
I do think parents of diabetics should reach out to the community of adults a bit more often to get some sense of what it is like to live with it on a day to day basis. Events like the one graflynn posted above are a great opportunity for this. I was at this last year and really enjoyed it - it was great to meet so many people who wanted to talk about all of the issues involved.
Last year their were separate streams for adult diabetics and parents whose kids had it. The speakers focused on topics relevant to each group and were very interesting.
At an event last year a parent came up to me asking how they could best help their child transition from the paediatric clinic to the adult one as they (the parent) were extremely worried. The child was just about to turn 18 so the only thing I could recommend was to let them lead the way and help if asked. It is a major thing for anyone to take charge of their own care but we all have to do it! Turning 18 and heading off into the world is a major event for anyone but when you have to manage something like diabetes it is especially complicated but there isn't a whole pile we can do about it.0 -
I agree with C shore to an extent but accept every situation is different.
My own mother let me take charge at a very early age, I was doing my own injections since before I started school and was testing my bloods at the same time. She checked in, and overruled when I was not paying attention but I was let find my own way for the most part.
I had arguments with the school nurse (I was in a very nice school that had its own nurse for the first few years) and my mum just came in and told her to let me at it, one year, 1st class I think, I just stopped going to the nurse and took the injections myself at lunch in a quiet part of the school.
Some people, thanks to the internet, look back on behaviour like my mothers as if she didn't care or was not good enough. She made every appointment, she was the one who told the doctor to go swing when he claimed I still had a virus and went straight to A&E, where a nurse unofficially told me I was Diabetic within a few hours. She was the one who took a shot of saline when the nurse demonstrated on an orange, claiming it didn't hurt, and I pointed out that it was an orange and couldn't cry. My mother took the first needle (despite an almost crippling fear of needles), to show me it was ok. More times than I care to admit, her face was the one over me with tears, bringing me back from a hypo.
I now have a cousin whose daughter has been diagnosed, she doesn't sleep, she doesn't relax, she is constantly on edge. I fear, before long, her daughters diabetes will incapacitate her. She weighs everything precisely, she ignores my mothers advice on, once you get a rough idea of a portion, just go by eye.
My mother trained me to live with Diabetes before I could ride a bike without stabilisers, my cousin has a daughter more than capable of looking after herself with a bit of guidance but refuses because of the pressure social media and modern parenting puts on her, as if she somehow has failed if she does not do everything perfect.
Maybe, just maybe, some of these young diabetics need to be allowed to f*ck up, because if they don't, they won't know what to do when they do f*ck up without supervision, on their own, in a bedsit getting out into the world.
The idea that a parent is nervous about a child going from one hospital to another in regards switching from paedeatric care to adult care at the age of 18 is shocking, I would be far more concerned how my child would be fit to deal with the real world in general if this is a genuine concern.
I say this as a parent of a 20yo and a 2yo, who I have probably not helped by mollycoddling myself.0 -
I used to think like that too - that Parents of cwd shout the loudest but then Facebook developed private groups. The Diabetes in Ireland Private group has 1,400 members and we are predominately adults living wit T1 but we do have parents too. However, The parents of CWD have their own private group and that's where they post all of the questions that relate directly to parenting. A lot of those parents are members of the diabetes in Ireland group and this is their way of connecting with adults. They definitely don't post much there though but they are connecting.
So it is happening. Social media has evolved and there are people out there setting up support groups online and in real life recognising that all people living with diabetes have different needs at different times. This is why at Thriveabetes, we have breakout sessions that separate the adults into the two groups; parents of cwd and Adults wd. As a person with type 1 myself, I do spend some time learning from the parents but there's nothing like hanging out with my own tribe:-)0 -
C-Shore - I do agree somewhat that the children of the people posting about diabetes in public blogs might not appreciate some of the stuff that gets posted. Understandably, parents do everything they can to get more help/information on diabetes so more power to them there!
I do think parents of diabetics should reach out to the community of adults a bit more often to get some sense of what it is like to live with it on a day to day basis. Events like the one graflynn posted above are a great opportunity for this. I was at this last year and really enjoyed it - it was great to meet so many people who wanted to talk about all of the issues involved.
Yeah that last point in the quote above is definitely how I feel a good balance could be found. Having parents scramble to find what's best doesn't seem to make sense when there's a wealth of experience among adult diabetics who have grown up with it.
I'm really interested in Thriveabetes now, as it seems to have a good idea of working it for everyone.I agree with C shore to an extent but accept every situation is different.
My own mother let me take charge at a very early age, I was doing my own injections since before I started school and was testing my bloods at the same time. She checked in, and overruled when I was not paying attention but I was let find my own way for the most part.
I now have a cousin whose daughter has been diagnosed, she doesn't sleep, she doesn't relax, she is constantly on edge. I fear, before long, her daughters diabetes will incapacitate her. She weighs everything precisely, she ignores my mothers advice on, once you get a rough idea of a portion, just go by eye.
My mother trained me to live with Diabetes before I could ride a bike without stabilisers, my cousin has a daughter more than capable of looking after herself with a bit of guidance but refuses because of the pressure social media and modern parenting puts on her, as if she somehow has failed if she does not do everything perfect.
Yeah, exactly!
I can't help but think that the way you were educated about diabetes (and how I feel I was too) is how it should happen; but as you said, there is some pressure to appear to be perfect at managing diabetes for your child.
That idea is just far too unrealistic. There will be problems, readings won't be perfect, and adapting to it will have to be second nature.
All that will do is pass that same ideals onto the child, and set them up for frustration when things do go wrong.
So many parents approach seems to be that they will eventually get on top of it, but I certainly don't think that happens. You get good at controlling it, but still have occasional problems.
I'm pretty sure that all of us as diabetics would agree that we're never perfect, but we roll with punches. If a child is raised to believe that there is a perfect way to manage it, there's going to be an eventual feeling of failure.I used to think like that too - that Parents of cwd shout the loudest but then Facebook developed private groups. The Diabetes in Ireland Private group has 1,400 members and we are predominately adults living wit T1 but we do have parents too. However, The parents of CWD have their own private group and that's where they post all of the questions that relate directly to parenting. A lot of those parents are members of the diabetes in Ireland group and this is their way of connecting with adults. They definitely don't post much there though but they are connecting.
So it is happening. Social media has evolved and there are people out there setting up support groups online and in real life recognising that all people living with diabetes have different needs at different times. This is why at Thriveabetes, we have breakout sessions that separate the adults into the two groups; parents of cwd and Adults wd. As a person with type 1 myself, I do spend some time learning from the parents but there's nothing like hanging out with my own tribe:-)
Well I'm very happy to hear that you have done it this way. I would be happy to be able to relate to adults with diabetes, as well as provide some sort of insight to parents as to what it's like growing up with it and how my childhood has shaped how I manage it now.
Thanks to everyone for the replies, it's nice to know that it's something that everyone has experienced in some way and that you're all still able to relate.0 -
I am 24 and am 90% sure I have diabetes, it would have been caused by living a poor lifestyle and gaining weight over the past 5 years with university, etc. I am going to get tested in the next couple of weeks.
Does this mean I have confined myself to a lifetime of misery? could I end up dying at 50 even if I lose weight and look after myself? It will be a hard thing to get your head around at 24. My mother talks about diabetes like it is cancer, she tells stories about how her aunt lost her foot during the last years of her life.0 -
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DanielODonnell wrote: »I am 24 and am 90% sure I have diabetes, it would have been caused by living a poor lifestyle and gaining weight over the past 5 years with university, etc. I am going to get tested in the next couple of weeks.
Does this mean I have confined myself to a lifetime of misery? could I end up dying at 50 even if I lose weight and look after myself? It will be a hard thing to get your head around at 24. My mother talks about diabetes like it is cancer, she tells stories about how her aunt lost her foot during the last years of her life.
OP - get yourself to a doctor and get tested. Type 2 is totally reversible through weight loss, exercise and a decent diet. with this said it takes dedication but can be done.0
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