anyone got a CGBM?

johnny37 said:

No lectures about getting the basals right, please!

Thanks

Click to expand...

Well something obviously is not right :shock: As to an A1c of 7.6 being aceptable, in my book no far from it. Are you happy with that result and what does your consulatnt think?
As to getting a CGM, it's quite easy as long as you have the money to buy one plus the sensors. Just ring up the companies that sell them.
In all honesty though as you haven't got the hang of the pump and programing it correctly then you would be wasting your money on a CGM They are not 100% reliable anyway.

Have you come across the book pumping insulin by John Walsh? It's known as the pumpers Bible. It can be found on Amazon and will be the best investment you ever make if you haven't already done so.

I disagree with CarbsRok. My basals are spot on, I've fasted & fasted to prove it yet I still get double figures after every meal & many many hypos 4-6 hours later plus no consistency.

I am currently using CGM to try & sort things out. I self fund, but was able to persuade my consultant to agree a new pump with CGM capability so at least I had a chance. I am lucky that I can afford it, within limits. The consultant wasn't even prepared to consider NHS funding for me, though, if I can make it work well, I may have a case to persuade them. (I've had CGM for 2 months only so far)

I use the Medtronic Paradigm. The transmitter & 5 sensors were (if memory is correct) £775 or £685 if ordered with the pump. I tried to organise with the hospital to order together to save me money & as a result, they gave me the transmitter & 5 sensors free (don't know how that happened, but I wasn't going to complain).

Sensors cost £275 for 5 or £525 for 10. They expire after 6 months, so you can't buy 10 & only use once a month. I'm told that the transmitter should be good for a few years.

It is helping, some. I do find that the sensor can be a way out sometimes, particularly at night it seems to read on the low side saying I'm hypo when my meter says I'm OK.

It isn't CGBM, it reads interstital fluid, not blood. It runs about 15 mins behind blood glucose. I don't use the predictions as I find them annoying, but you set personal high/low limits so the pump alarms only when you reach the limit (and you can set different ones at different times of day) so if you set it to e.g.4.2, as long as your BG isn't falling really quickly, you can act before you go hypo.

I have found that it has made things worse in one respect: when I know I'm high, I want to correct & use the wizard to suggest a correction, but, as I have shown my HCPs so often, if I'm not at 12-14 after a meal, I'll be hypo 5 hours later. If I do correct, I end up overcorrecting & going hypo anyway. I'm trying to work on the lows & ignore the highs (as long as my BG comes back to normal within 5 hours) as it's the hypos which cause me the mist grief at the moment.

I'm using my phone now, so a really long post isn't easy, but can provide further info another time if you have specific questions.

Cheryl,

Thatis really interesting about your experience with Continous monitoring. My BG swings about a lot too, but I am getting better at managing i, and often have temporary basal rates to cope with any sort of exercise.

i wondered about your situation...high after meals, but then llow a few hours later....the obvious thing is your basal profile being too high, and oing the job ofthe bolus...when it runs out of food it starts lowering your BG (apologies not ery technical!). However, you are sure your basa are correct, the it must be something else...I wonder if a change ininsulin would help....are you on the quickest acting one out there..or is it a timing issue? Are you bolusing too late, so the bolus and food do not coincide?

Personally I do not see the value in CGBM is you are hypo/hyper aware. They are fantastic for small children etc, or people who are not hypo aware, but until there uis a "feedback loop" where the CGBM measures your BG rising, and changes the basal rate...still living in hope that it will be here and affordable soon!

Sugar2- I changed from Humalog to Novorapid 4 weeks ago at the suggestion of my consultant, though I was reluctant to look at highs when my priority is the lows. Since then? No change in highs, but a 25-35% increase in lows!! I am not a happy teddy at the moment. Just done my figures for this month: over 50 hypos. I'd just about got it down to about 30 with the Humalog.

I do try & get my insulin into me as early as possible. I find with breakfast (my consistently the same meal) about 30 mins is right or I start to drop (wouldn't know this without CGM), but I'll still go from 4 to 12 or 6 to 14 in 1hr 55m (always peaks at that time) & back to where I started after 5 hours. I've tried dual-waves, squares etc etc & these work for some meals, but I usually have to get as much insulin into me as possible straight away to stop a huge peak at 16-18+. Later in the day, however, my BG peaks around 2.5-3hrs after eating, but still gets back to normal (or too low) after 5 hours.

At the end of the day, my last hba1c was 7.0, so alright, just. I can only keep plugging away & the CGM is helping me understand some of what goes on and avoid even more hypos, but I don't think that I'll ever get rid of those highs.

Hi Cheryl,
it might be well worth your while looking at different types of cannula. Also as a matter of interest what do you have your durration of insulin set at? I found that the wrong size and type of cannulas allowed the insulin not to absorbe properly when a bolus was given. I would in your situation go right back to basics and check to see that 1 your carb ratio is correct and also your correction factor.
Try also as an experiment injecting your bolus and see what results you get. If all in range then look at your cannulas.

Hi Cheryl,

I was wondering if your ratio is a bit out, so maybe upping that a bit would stop the highs after you eat, and lowering your basal a few hours later may stop the low later on?

Sorry, a bit off original topic but was struck by your struggles with this one! Do hope you can get it sorted x

Hi Pickle, at the end of the day, I'm less concerned about the highs after meals. When I see the rigid limits set by some people on here, I'm amazed they have any fun at all. My priority is to stop the lows. I have changed back to my old insulin as of yesterday as things have been so much worse since I went onto Novorapid.

As for cannulas, I tried a different one with my new pump & hated it. It was hard to put in (I won't use inserters, I don't like the idea of them & a lot of people in here seem to get regular set failures with them, I never have set failures with Silhouette/Tenderlinks) & the second one I issue kinked.

I just couldn't stick to rigid meal times or low carb. To be constantly resetting my basal to dop it down to coincide with having had too much bolus just to stop a high for a couple of hours would just take too much micro management for me.

Back to Humalog for now, more fasting, CGM and a good skiing holiday then perhaps things will settle down.

johnny37 said:

Cheryl, thanks for your input, if only to show Carbsrock that some of us do not have it so easy. A consultant once told me that hypos are the price I have to pay to keep my HBA1c down. My readings are all over the place at the moment (20.8 at 1am this morning. Five days ago at the same time it was 4.7. Just come back from a 2hr dog walk (temp basal not set). It was 16.8. Two days ago at the same time, same breakfast, same amunt of exercise, it was 4.4. No amount of tweaking seems to work. I am going to have to go back to 1 hourly tests and attacking any highs with more corrections. As you say this just results in more hypos.

Click to expand...

Johnny,
if you think I have it easy then step into my shoes. I'm sure you will gladly hand them back.
I have to work damned hard at my control due to other conditions non diabetes related. I passed on my experience which in turn was given to me by another experienced pumper.
Yes hypos are part and parcel of having type 1 diabetes. I know as have had the condition for 47 years.
But the swings in your blood sugar that you have stated are not correct. So this means something is not right. So if it's not a cannula problem or even a problem with the type of insulin you are using then it's down to your understanding of using insulin and or your pump correctly.

I'm sorry carbsrock but I have the same problems (at times) as johnny and Cheryl. There is no explanation for it - I know that for a fact. What works continuously for a long period of time can suddenly go haywire without any reason. It's not that we don't understand basal / bolus or our pumps, it's just that we're different and unlucky in that our bodies go into free flow for no reason at certain times. No amount of adjusting pump basal/bolus or setting temporary basals help at this time because of the extreme unpredictability of blood sugars. It may be hard for people to understand if they have no such issues.

Riri said:

I'm sorry carbsrock but I have the same problems (at times) as johnny and Cheryl. There is no explanation for it - I know that for a fact. What works continuously for a long period of time can suddenly go haywire without any reason. It's not that we don't understand basal / bolus or our pumps, it's just that we're different and unlucky in that our bodies go into free flow for no reason at certain times. No amount of adjusting pump basal/bolus or setting temporary basals help at this time because of the extreme unpredictability of blood sugars. It may be hard for people to understand if they have no such issues.

Click to expand...

Riri,
I have the same issues re the basal shifing or the carb ratio changing. I am fully aware of the work involved in fixing the problem.
It's called testing blood sugars (15 times/day) adjusting basals/ratios as needed plus using the correct cannulas when a change is needed.
I do not allow my blood sugars to spike as Johnny does or drop like that either. The fact he is so high and then so low points to a major problem somewhere which he needs to address rather than slinging insults at anyone who offers solutions to try.
He, I seem to remember threw his toys the last time when others offered advice he didn't want to hear.
He also needs to look at what point he is changing his basal to effect a change.

I would have to agree with CarbsRok.. blood glucose is predictable if you know all the variables.. the problem is that we often don't know all the variables or we may overlook some and not others..

I would kill for a pump let alone a CGM!

Although I'm ok with a pump (most of the time but not all), if I was starting off now, with cgm being much better than it was a few years ago, given the option of having a funded pump or a funded cgm, I would go for the cgm.

iHs said:

Although I'm ok with a pump (most of the time but not all), if I was starting off now, with cgm being much better than it was a few years ago, given the option of having a funded pump or a funded cgm, I would go for the cgm.

Click to expand...

It would have to be the pump for me as there's no basal insulin on this planet that matches my basal needs.

iHs said:

Although I'm ok with a pump (most of the time but not all), if I was starting off now, with cgm being much better than it was a few years ago, given the option of having a funded pump or a funded cgm, I would go for the cgm.

Click to expand...

IHs I would say the same actually.. I would love a pump and it would certainly cut down on the number of injections I have to do.. 4 basal... 4 bolus + bolus corrections.. but to be honest cutting out the 12+ tests per day and actually knowing what my blood glucose was doing at a glance would be bliss!

Pneu said:

iHs said:

Although I'm ok with a pump (most of the time but not all), if I was starting off now, with cgm being much better than it was a few years ago, given the option of having a funded pump or a funded cgm, I would go for the cgm.

Click to expand...

IHs I would say the same actually.. I would love a pump and it would certainly cut down on the number of injections I have to do.. 4 basal... 4 bolus + bolus corrections.. but to be honest cutting out the 12+ tests per day and actually knowing what my blood glucose was doing at a glance would be bliss!

Click to expand...

Lol sounds great but CGM does not work like that.
You have to calibrate the thing, so at least two pokes a day for that. if hypo you have to check with your meter, same if you
need to do a correction acording to the CGM ,you still need to double check with your meter.

My, lots of different issues on this one!

A couple of extra thoughts....cannula...I've noticed on my daughter that typically insertions are painless but occasionally they are not and when they hurt her insulin requirements almost always decrease quite significantly. My assumption is that I must hit a muscle on those occasions and I've read that injecting into muscle significantly increases speed of insulin absorption. For my daughter, this is another variable (of the 50 million that we all need to deal with!) that I've learnt to recognise quickly and factor into the equation.

CGM, what can I say, I couldn't be a bigger fan of this technology. But, as with the pump, it takes time to master the nuances. Now that I've got it nailed I find the reliability absolutely fantastic. Yes, you still have to finger prick to calibrate and to get accurate readings it is essential you calibrate at the right time (i.e. when blood sugars are at their most stable). But, with out doubt, you can safely reduce the number of finger pricks required significantly and the amount you can learn about how the body responds to different things I've found to be invaluable in improving my ability to manage my daughter's condition.

In six months I saw her HbA1c go from 7.3 to 6.9 and then 6.4. Even more importantly, in my view, is the stability that can be achieved by learning to correctly respond to the predictive alerts for highs and lows. Stats. for last month show that 98% of the time levels were between 4 and 10 mmol. This is a far cry from the huge swings that used to be pretty much a daily occurrence.

As for funding, I understand it is very, very difficult and without it the expense is more than the majority of pockets can afford. My daughter currently has full funding and the battle with the PCT took a long time. However, I did negotiate with Medtronic and they provided free sensors for a number of months whilst I sorted the funding out. The case I put to them was that I considered demonstrating the improvement in control would significantly increase my chances of successfully obtaining funding.

Hope that's in some way helpful.

to get cgm funding you seem to need to make a cost benfit claim my DSN and me worked out the cost of ambulance call out(£400+) and the time in hospital cost(£600+) per day this was a few years ago so probably more now then list the number of 999 call out and days in hospital per year in the worst case to show that the funding is less than the above as I was ending up in hospital 5-8 times per year so the pump+ sensor was a cheaper option as now I do not end up in hospital for the last 4 years. I've had type 1 for 53 years now and got some odd diabetic damage that make control very hard as my glucose lv's can go from 5-20 in 10-20 mins and drop even faster so I need the cgm to give warnings

Angusc said:

for the last 4 years. I've had type 1 for 53 years now and got some odd diabetic damage that make control very hard as my glucose lv's can go from 5-20 in 10-20 mins and drop even faster so I need the cgm to give warnings

Click to expand...

I had this problem when using synthetic or porcine insulin. Using bovine insulin no problem at all. So perhaps look at your insulin and basal settings