Latest guidelines

[himtoo]

And this is also something that was raised last night. I have had one mild hypo in 7 months. We were all told last night that we should expect to have three mild hypos per week. This is partly why I have suggested that I expect most people will ignore this. I see nothing wrong in aiming for a bg of around 6. The suggestion is that doses of both background and fast acting need to be tighter with no guessing.

at last a bit of good news -- I can confirm I have 3 mild hypos per week in achieving my 47 ( 6.5% ) A1c
sorry @MickyFinn I know you are only delivering the updates
no offence towards your posts intended --thank you very much for letting us all know.

 

[MickyFinn]

I don't know. I'm kind of happy with the option you propose. Also, if they fund my CGM and that stops me hypoing overnight and waking up with a significant brain injury that requires 24 hour care I can carry on working full time and paying taxes etc, also the CGM will be significantly cheaper than 24 HR lifetime care.

I didn't pretend it was realisic or viable - just an optimistic hope with no actuall plan of how to actually implement it. But then maybe if there is "buy in" that that technology is required to achieve targets, then there might be an incentive for people to actually do a long term cost benefit analysis of the technology. You know, something along the lines of: without CGM out of 100 diabetics not on CGM in 30 year 30 of them will not be working and payin NI, of those 30, 10 will have had laser treatment for retinopathy, 2 will have had dialysis, 8 will require frequent visits from the distric nurse for wound dressing, 10 will have had hospital admissions by ambulance for hypos. But with CGM numbers and cost of diabetic complications/ emergency diabetic treatment is greatly reduced to the extent that it pays for itself. I don't know, I've just pulled numbers out the air, but it's that kind of research that is required, I think, to make an informed funding decision on diabetic technology.

Sorry, so off topic!

They are expecting us to get insulin doses to within exacting tolerances. CGM's would have to be self funded for the foreseeable future. They even recognise that having far low bg levels means that hypo awareness and symptoms are reduced, especially once you get used to regularly being around 4.5.

 

[MickyFinn]

I'm only repeating what all of us in the group were told last night. I knew that most people would reject these guidelines, however, thus is the info that any newly diagnosed insulin dependent diabetics will be given, or at least they are supposed to be given. The issue seems to be that practice nurses and many GP's are dispensing info that's in many cases 20 years out of date. DN's in hospitals are generally more up on this, however some are still not aware of the current guidelines.

I know there are an awful lot of diabetics who reuse needles, mostly on the basis that needles are expensive and it saves money. However, going on what we were told last night, needles irrespective of brand cost 1p each. Needles being expensive is a fallacy, but it would be expensive to treat complications due to reusing needles. And it would be difficult to manage bg levels with lumpy skin that you cannot inject into. I also know that those who reuse needles will still insist on doing so.

What I took from it, is that they want us to try and keep bg levels below 7, it's no longer acceptable to go to bed on a reading on 9 or higher and hope it comes down overnight. I also know that many people will never even be told of these guidelines, even though the idea behind it is to maintain tighter control and hopefully avoid complications by doing so. I'm not saying it's all correct, it will need tailoring to every individual, only that this is what we're now expected to do.

 

[noblehead]

They're not going to fund CGM's and pumps. These latest guidelines have come about as a result of research based on trials of specifically the freestyle libre.

Find it hard to believe that NICE would change the guidelines based on research from the Freestyle Libre Trials, the accuarcy of the Libre can be somewhat questionable.

Regards to the 6-7 injections and the restaurant scenario, many type 1's do this already as they don't know in advance if they want a dessert or can physically eat one after a main meal, it's the same when bolusing for difficult meals like those that are high in fat where a split-bolus is commonly used.

 

[MickyFinn]

at last a bit of good news -- I can confirm I have 3 mild hypos per week in achieving my 47 ( 6.5% ) A1c
sorry @MickyFinn I know you are only delivering the updates
no offence towards your posts intended --thank you very much for letting us all know.

None taken, several of the people on the course with me last night reacted the same way!

The biggest thing is that some of them have been diabetic for donkey's years and and now being told to do an about face in how they manage their illness.

I was only diagnosed a year ago, and it was still a shock to me!

 

[MickyFinn]

Perhaps they advise different for children? We correct anything over 7.

That's entirely possible. It's also likely that each hospital and GP surgery gives out differing information. It may also have a bearing on how sensitive or resistant to insulin each individual is. If I take a bg reading and it is 7.5, I couldn't correct as 1 unit of novorapid would drop my bg so by approximately 4.0, so I would have a hypo every time. Never straightforward is it?

 

[Kristin251]

I find the new guidelines fairly easy to achieve. I apply bernsteins recommendations of laws of small numbers. Low carb small meals, small insulin doses. I can't remember the last time I had a true hypo. Wait, it was when I ate carbs and couldn't get insulin and food to match up.

I completely understand people not wanting to eat this way but it does work.
If I eat a large meal or more protein than normal I do need to split doses otherwise I hypo then hyper.

 

[therower]

Guidelines for diabetics. Wow. Whatever next?
Here's me thinking I had something unique to me and it turns out there's more people just like me out there.
Guess I'll just get between the guidelines and live happily ever after.

P.S will someone let me know when the experts move the guidelines, I don't want to miss a trick.

 

[donnellysdogs]

The other part of it is to apparently get the background insulin dose exact. That is supposed to be done by eating a carb free meal for lunch and testing bg two hours after. If the dose is correct, bg would be within 2 m/mol of what it was pre meal. Same is carried out on a separate day for the evening meal/night time dose.

Weren't you taught about basal testing at some point previously? This isn't just for pump patients but the most valuable tool for flexibility that a T1 can have.

Their description is not correct though. You effectively eat and bolus your meal and nothing else for 5 hours before you then start to test hourly for 5 or 6 hours.
So this enables the breakfast food and bolus to be out of your system, and then hourly testing can start from 5 hours after that breakfast bolus.

For evenings you would have lunch, and bolus and nothing else for 10 hours. Then that tests whether your basal injections are ok..at any point if high or low then stop testing and either correct or eat.

 

[MickyFinn]

Find it hard to believe that NICE would change the guidelines based on research from the Freestyle Libre Trials, the accuarcy of the Libre can be somewhat questionable.

Regards to the 6-7 injections and the restaurant scenario, many type 1's do this already as they don't know in advance if they want a dessert or can physically eat one after a main meal, it's the same when bolusing for difficult meals like those that are high in fat where a split-bolus is commonly used.

Some don't take multiple infections for multiple course meals though, and the point is that this is now supposed to be standard practice rather than something some might do. Everyone will be advised to do this to avoid bg spikes.

The research isn't from the libre, it only came about because of and was based on the trials of the libre and what they highlighted. Trials are not research, and guidelines would not be changed on the basis of a select few testing out CGM's. This research has apparently been going on for quite some time.

 

[MickyFinn]

I find the new guidelines fairly easy to achieve. I apply bernsteins recommendations of laws of small numbers. Low carb small meals, small insulin doses. I can't remember the last time I had a true hypo. Wait, it was when I ate carbs and couldn't get insulin and food to match up.

I completely understand people not wanting to eat this way but it does work.
If I eat a large meal or more protein than normal I do need to split doses otherwise I hypo then hyper.

I think you've grasped the idea they were trying to get across, which is to try and get a more stable bg, with fewer spikes and fewer dips by being more accurate with insulin doses. We're not supposed to just wing it, but carb count properly.

 

[noblehead]

Some don't take multiple infections for multiple course meals though, and the point is that this is now supposed to be standard practice rather than something some might do. Everyone will be advised to do this to avoid bg spikes.

Well in some respect it isn't a bad thing then, I know it means more injections but if it means more favourable bg control outcomes then it has to be seen as a good move by the powers to be

The research isn't from the libre, it only came about because of and was based on the trials of the libre and what they highlighted. Trials are not research, and guidelines would not be changed on the basis of a select few testing out CGM's. This research has apparently been going on for quite some time.

Right, do you know if these new type 1 guidelines have been published?
.

 

[donnellysdogs]

Always injected for meals out as separate courses...done that for 30 years. You never know what portion sizes are etc....same in hotels for breakfast, even if it was self serve...

The guidelines also now state that basically (my wording, not quoted) that it should not be tolerated for morning fasting levels to be compromised outside of the target ranges. Ie. We do not have to accept DP rises and professionals (and us) not being able to get them lower on MDI. We should not have to compromise going low at 3am causing liver dump and rises by waking etc....

The guidelines were updated in July 2016 but if the information was taken from CGM or freestyles (especially) I think that would be interesting. It would only be from a few research patients as all the patients that are being given a libre to trial for two weeks do not sign trial data research agreements etc... So, if they have gone by any data using CGM's or Libre then it's from selected few patients... And of course they get to choose the patients they will use for trials....

 

[himtoo]

I find the new guidelines fairly easy to achieve. I apply bernsteins recommendations of laws of small numbers. Low carb small meals, small insulin doses. I can't remember the last time I had a true hypo. Wait, it was when I ate carbs and couldn't get insulin and food to match up.

I completely understand people not wanting to eat this way but it does work.
If I eat a large meal or more protein than normal I do need to split doses otherwise I hypo then hyper.

a valid point for you individually......but the original OP @MickyFinn did not mention a severely restricted carb diet to achieve it as coming from the people running the course refresher..

 

[catapillar]

The other part of it is to apparently get the background insulin dose exact. That is supposed to be done by eating a carb free meal for lunch and testing bg two hours after. If the dose is correct, bg would be within 2 m/mol of what it was pre meal. Same is carried out on a separate day for the evening meal/night time dose.

Just be cautious of trying to rely on a basal test done with carb free meals rather than actual fasting. If you are having carb free, the protein in your meal will likely raise your blood sugar.

A lot of hospital clinics' guidelines on basal testing advise doing carb free meals eg eggs. If you search for bolus + eggs on the forum, you will see that an awful lot of type 1s will inject for an egg and nothing else.

Here's some info on basal testing - https://mysugr.com/basal-rate-testing/

 

[himtoo]

Always injected for meals out as separate courses...done that for 30 years. You never know what portion sizes are etc....same in hotels for breakfast, even if it was self serve...

The guidelines also now state that basically (my wording, not quoted) that it should not be tolerated for morning fasting levels to be compromised outside of the target ranges. Ie. We do not have to accept DP rises and professionals (and us) not being able to get them lower on MDI. We should not have to compromise going low at 3am causing liver dump and rises by waking etc....

The guidelines were updated in July 2016 but if the information was taken from CGM or freestyles (especially) I think that would be interesting. It would only be from a few research patients as all the patients that are being given a libre to trial for two weeks do not sign trial data research agreements etc... So, if they have gone by any data using CGM's or Libre then it's from selected few patients... And of course they get to choose the patients they will use for trials....

really good points @donnellysdogs
I think they may struggle to find T1's that do not suffer some sort of DP -- we all use different methods ( or none ) to combat it .
The Libre and CGM may help us more than we know to bring treatment into the 21st century !!

 

[MickyFinn]

Always injected for meals out as separate courses...done that for 30 years. You never know what portion sizes are etc....same in hotels for breakfast, even if it was self serve...

The guidelines also now state that basically (my wording, not quoted) that it should not be tolerated for morning fasting levels to be compromised outside of the target ranges. Ie. We do not have to accept DP rises and professionals (and us) not being able to get them lower on MDI. We should not have to compromise going low at 3am causing liver dump and rises by waking etc....

The guidelines were updated in July 2016 but if the information was taken from CGM or freestyles (especially) I think that would be interesting. It would only be from a few research patients as all the patients that are being given a libre to trial for two weeks do not sign trial data research agreements etc... So, if they have gone by any data using CGM's or Libre then it's from selected few patients... And of course they get to choose the patients they will use for trials....

The research was only came about because of what the libre trials showed up. That trial was only a starting point and those on the course raised the point that the libre is not that accurate the higher or lower bg is. A trial is only a trial, the research was far more wide ranging.

 

[noblehead]

A lot of hospital clinics' guidelines on basal testing advise doing carb free meals eg eggs. If you search for bolus + eggs on the forum, you will see that an awful lot of type 1s will inject for an egg and nothing else.

Agreed @catapillar, for a 4 egg omelette I would need 4u of insulin, no way could I basal test eating eggs.

 

[MickyFinn]

Just be cautious of trying to rely on a basal test done with carb free meals rather than actual fasting. If you are having carb free, the protein in your meal will likely raise your blood sugar.

A lot of hospital clinics' guidelines on basal testing advise doing carb free meals eg eggs. If you search for bolus + eggs on the forum, you will see that an awful lot of type 1s will inject for an egg and nothing else.

Here's some info on basal testing - https://mysugr.com/basal-rate-testing/

They did mention a lot of that, and booked us in for follow-up appointments on order to go more on depth on an individual basis. It will of course vary from person to person somewhat.

 

[MickyFinn]

Agreed @catapillar, for a 4 egg omelette I would need 4u of insulin, no way could I basal test eating eggs.

This is why they are providing individual guidance to those if us at the meeting last night.