Petition re Continuous Blood Glucose Monitors

[bernasia]

On any given night that a CGM works to avert a hypo, you will instead have bad sleep and worse yoyo blood sugars.

Confront and overcome your fears, as you did successfully with needles, that's your best bet. A pump will actually solve these problems rather than just mitigating them from very bad to not so bad.

Or -
Have you looked into where the variability in blood sugars is coming from? Have you tried an LCHF diet to stabilise your blood sugars? Have you tried a split basal or a different basal? Are you eating late? Are you eating pizza or pasta late?

My diabetes has always been very brittle and my sugars all over the place. I have never heard of a LCHF diet - what is that? I have tried several different insulins. And yes, I am eating late - around 11 pm usually. Sometimes later.

 

[Spiker]

Yes I do know. But the sensor is MUCH smaller than the pump that is attached into your skin, it's also much lighter and therefore you can't feel it as much. Plus it does not pump you with meds. Carrying a receiver in my purse or having it rest on my nighttable is not a prob.

Actually the pump cannula in your skin and the CGM cannula in your skin are about the same size. The CGM introducer needle for its cannula is much larger than the one for a pump infusion set.

Only difference is the tube. If that's the issue what about a tubeless pump?

 

[Spiker]

Plus it does not pump you with meds.

A basal shot pumps you with meds for 24 hours and there is absolutely nothing you can do to stop it. You can dial down a pump, stop it, remove it, at any time and no more meds are being delivered.

 

[Spiker]

All I asked for is support with my petition. I appreciate everyone's suggestions because, who knows, maybe there's something out there that I haven't yet considered.

OK well I and a number of others have explained why we don't think your case supports your petition.

I strongly support the idea that public health authorities should increase access to CGMs for T1s but I don't think it's appropriate or advisable in your case. Your case makes a poor argument for increased CGM use that could actually backfire against others who have a stronger case for CGM.

I also think the Ontario Ministry of Health will be ignoring the petition from about the time they got the 20th notification email, if they don't already have Change.Org blocked. They will not be responsive to a petition where large numbers of the petitioners are not even Canadian let alone Ontario residents. You would be better off getting a paper petition together or at least restricting it to Ontario residents. Otherwise you will find that the media won't support you because the petition will be vulnerable to the accusation that it has been padded by people who aren't Ontario tax payers.

 

[Spiker]

Ok I am going to leave this thread. I won't be signing the petition and I encourage the OP to try any of the better options that have been presented.

 

[Spiker]

And yes, I am eating late - around 11 pm usually. Sometimes later.

Ok that's the most likely explanation for the night hypos, right there.

 

[donnellysdogs]

Having had both a cgm and 2 pumps I found the CGM a pain in the backside.

Yes, many many people get on fine with them but stapling my arm with the sensor when I'm lean probably gave some erratic readings than if I had fat on me. The cgm rarely gave me a good nights sleep and I ended up turning the alarm off... As it was also telling me I was hypo when my blood tests were perfect. This was probably due to heat from the quilt or my moving or other reasons.. I really thought the Freestyle Navigator CGM was useless. My experience only.

It was a pain wearing the cgm monitor on my belt all day when my pump was tucked away nicely out of sight on my arm.

From the two items I have to say that I wouldn't have a CGM . If I had the choice between the two it would be to go back to my pump.

I haven't got that choice. (I wouldn't go back to either now to be honest.).

Please may I ask whether you have physically ever seen anybody wearing a pump or a cgm?

 

[CarbsRok]

Yes I do know. But the sensor is MUCH smaller than the pump that is attached into your skin, it's also much lighter and therefore you can't feel it as much. Plus it does not pump you with meds. Carrying a receiver in my purse or having it rest on my nighttable is not a prob.

I'm not sure where you got your info from but the inserter for the CGM is at least twice the size of any cannula that is inserted for insulin delivery.

A CGM wont warn you if you have a very sudden drop in blood sugars as it's roughly 20 mins behind your actual reading. So you could already be fitting before the CGM reacts. They are not 100% accurate either.

 

[bernasia]

Having had both a cgm and 2 pumps I found the CGM a pain in the backside.

Yes, many many people get on fine with them but stapling my arm with the sensor when I'm lean probably gave some erratic readings than if I had fat on me. The cgm rarely gave me a good nights sleep and I ended up turning the alarm off... As it was also telling me I was hypo when my blood tests were perfect. This was probably due to heat from the quilt or my moving or other reasons.. I really thought the Freestyle Navigator CGM was useless. My experience only.

It was a pain wearing the cgm monitor on my belt all day when my pump was tucked away nicely out of sight on my arm.

From the two items I have to say that I wouldn't have a CGM . If I had the choice between the two it would be to go back to my pump.

I haven't got that choice. (I wouldn't go back to either now to be honest.).

Please may I ask whether you have physically ever seen anybody wearing a pump or a cgm?

@donnellysdogs Yes I have seen a few people wearning pumps.

 

[bernasia]

I'm not sure where you got your info from but the inserter for the CGM is at least twice the size of any cannula that is inserted for insulin delivery.

A CGM wont warn you if you have a very sudden drop in blood sugars as it's roughly 20 mins behind your actual reading. So you could already be fitting before the CGM reacts. They are not 100% accurate either.

I don't know about the CGMs used in the U.K. The one I have available here reads my glucose every 5 minutes and is quite accurate. It would in fact alert me when my sugars get below whatever range I set it to go off at. And I wasn't talking about the inserter size. I was talking about the sensor that is glued on top of my arm/stomach/whereever.

 

[CarbsRok]

I don't know about the CGMs used in the U.K. The one I have available here reads my glucose every 5 minutes and is quite accurate. It would in fact alert me when my sugars get below whatever range I set it to go off at. And I wasn't talking about the inserter size. I was talking about the sensor that is glued on top of my arm/stomach/whereever.

Sounds as if you are talking about the dexcom or Medtronic and the yes does a reading every 5 mins but it's not that it reads thus it's 20 mins behind a finger poke test.
The transmitter is a lot bigger and bulkier than pump cannulas as well. If you are talking about the Libre then that does not alarm.

I note that you were accusing Spiker of having a go at you He isn't and neither is anyone else we are just trying to help you see sense and stay safe.

Just reread your post so not sure I have this right, are you under the impression that there is nothing under your skin? If so think again as all sensors are under the skin it's the transmitter that sits on top of the skin.

 

[azure]

My diabetes has always been very brittle and my sugars all over the place. I have never heard of a LCHF diet - what is that? I have tried several different insulins. And yes, I am eating late - around 11 pm usually. Sometimes later.

I'm not sure if you have to eat that late because of work or something, but it's possible that's causing or exacerbating your hypos. If your blood sugars tend to swing about, then that late night bolus you have for your food at 11pm could linger on and give you a hypo in the night. Personally I'd never have a bolus that late. I like to be sure my blood sugar has settled down and is safe before I go to bed.

Could you eat earlier? I'm not saying it's a magic answer but it might well help.

My insulin pump can use a CGM but I've been reluctant to have one because it's looks uncomfortable to wear compared to my pump cannulas.

If you accept that a pump would be good for,you, but your fear is stopping you, could you see a clinical psychologist who could help you overcome that fear if you're unable to do that yourself? I really think you'd be surprised at how cool a pump is. A pump would remove the problem, a CGM would just be a sticking plaster on it.

 

[bernasia]

I'm not sure if you have to eat that late because of work or something, but it's possible that's causing or exacerbating your hypos. If your blood sugars tend to swing about, then that late night bolus you have for your food at 11pm could linger on and give you a hypo in the night. Personally I'd never have a bolus that late. I like to be sure my blood sugar has settled down and is safe before I go to bed.

Could you eat earlier? I'm not saying it's a magic answer but it might well help.

My insulin pump can use a CGM but I've been reluctant to have one because it's looks uncomfortable to wear compared to my pump cannulas.

If you accept that a pump would be good for,you, but your fear is stopping you, could you see a clinical psychologist who could help you overcome that fear if you're unable to do that yourself? I really think you'd be surprised at how cool a pump is. A pump would remove the problem, a CGM would just be a sticking plaster on it.

Thanks Azure. I don't take any bolus when I eat at night. My diabetes is v. complicated. I take boulos with everything during teh day, but then I seem to need approx 40g of carbs at night WITHOUT bolus (just victoza and lantus). A clinic psychologist might be a something to think about.

 

[iHs]

Thanks Azure. I don't take any bolus when I eat at night. My diabetes is v. complicated. I take boulos with everything during teh day, but then I seem to need approx 40g of carbs at night WITHOUT bolus (just victoza and lantus). A clinic psychologist might be a something to think about.

Hi

It might pay to stop Victoza as with Lantus as well, I would imagine would cause serious hypos in the night. Is Levemir available in Canada?

Also, have you had any bloodtests done to see if your pancreas has any alpha cell activity as its common for type 1s to lose alpha cell along with beta cell destruction after 20yrs or more

 

[azure]

Thanks Azure. I don't take any bolus when I eat at night. My diabetes is v. complicated. I take boulos with everything during teh day, but then I seem to need approx 40g of carbs at night WITHOUT bolus (just victoza and lantus). A clinic psychologist might be a something to think about.

Ah, ok. Weird that you need all those carbs before bed. Has anyone suggested a reason for that? It sounds like your blood sugar is dropping then if you need carbs like that. I remember having to have a bedtime snack when I was on two injections a day but even then I only had approx 15g carbs

 

[jrussell88]

You might find the Abbott Freestyle Libre worth trying. It tracks your blood glucose, but updates intermittently rather than continually like a CGM. Whenever you hold the reader close to the sensor it updates the blood glucose graph so you can see what's been happening, and the trend.

The reader and 2 x 14-day sensor pack are reasonably-priced, around £160 so if you don't continue there isn't much downside. However it's only available in the UK, France, Germany, Italy, the Netherlands, Spain, and Sweden. They wont ship outside those countries so you'd need a forwarding address. US maybe March 2016. And there's a waiting list as they can't keep up with demand.

However it will give you a lot more insight into what is going on overnight. It's particularly helpful in setting basal doses.

You may find that two basal doses per day help, allowing you to reduce the overnight dose relative to the daytime dose - that fixed my overnight hypos.

Of course a pump can do that too.

But first get the facts before you jump to a conclusion.

 

[bernasia]

Hi

It might pay to stop Victoza as with Lantus as well, I would imagine would cause serious hypos in the night. Is Levemir available in Canada?

Also, have you had any bloodtests done to see if your pancreas has any alpha cell activity as its common for type 1s to lose alpha cell along with beta cell destruction after 20yrs or more

@iHs Victoza has done wonders for me regulating my very unstable sugars quite a bit. I used to take Levemir a v long time ago but my dr switched me to Lantus as it was much better. Never heard of losing alpha cells, so no never tested for it. Dont even understand what that means. I'll ask about doing it though.

 

[bernasia]

Ah, ok. Weird that you need all those carbs before bed. Has anyone suggested a reason for that? It sounds like your blood sugar is dropping then if you need carbs like that. I remember having to have a bedtime snack when I was on two injections a day but even then I only had approx 15g carbs

@azure no, no one can explain it. It used to be 80g at night with no bolus but then we cut my Lantus and the carbs drastically after the seizures started. I inject bolus at breakfast, lunch and dinner as well as correction doses if and when needed, plus injections of Lantus and Victoza. So at least 5 per day.

 

[iHs]

Do you use the 100 rule to base your correction doses on?

Do look at how the pancreas gland works with beta cells and alpha cells.

 

[azure]

@azure no, no one can explain it. It used to be 80g at night with no bolus but then we cut my Lantus and the carbs drastically after the seizures started. I inject bolus at breakfast, lunch and dinner as well as correction doses if and when needed, plus injections of Lantus and Victoza. So at least 5 per day.

I've never used Lantus. It was offered and I refused it. My problems with nocturnal hypos were caused by my long acting insulin. My insulin needs during the night vary and no long acting insulin can match them, so I use a pump. It sounds like the Lantus may be your problem perhaps?

If you can't face a pump, then I hope you can adjust or change your long acting insulin so that your hypos are reduced.