Are the targets diabetes specialists set for us too modest?

[RobertJ]

I've had type 1 nearly twenty years and have become very engaged with things in recent months, more engaged than any time previously. I feel like the general message from my clinic was that an HbA1c of 50-53 was really good, but then when you look it up on here or Diabetes UK it says it should be 48 or lower. I've never been in the 40s but I am aiming to get there as soon as I can.

I recently met up for coffee with a woman who has had Type 1 almost forty years. She has good control, no complications and is 59 years old. She said she's been told it's fine for the time in target on the Freestyle Libre to be 60% (hers is much higher). Well I'm sorry but that's irresponsible on the part of whatever doctor or nurse said it, because being between 3.9 and 10mmol 60% of the time is not going to be enough to save someone from complications.

My HbA1c has always been 50-something. I think it's got as high as 57, maybe even 59, and never officially lower than 53. I used to think this was really good but I now feel like my clinic has misled me. I thought I was one of the well-behaved diabetics with good control but in the last few months I've really had a lot of doubt about that.

I was reading about the former Tottenham player Gary Mabutt who has lost all feeling in his feet and had a situation where a rat ate part of his foot on holiday. He was in his late 50s at the time, so not even that old. Surely someone like him would have had "good control" over his life? I worry what I've been told is good control isn't going to be good enough. The idea of losing nerve feelings is so terrifying, it makes me want to never do anything fun again and just become an out and out health freak.

 

[JAT1]

Research as much as you can and do what you think is right. Go for it if you want a lower target and watch for any possibility of hypos. No sense following expert advice you have no confidence in.

 

[Dudette1]

Complications happen when blood sugars are constantly high, not now and again.
My consultant told me blood sugars above 13 constantly over years not days or months is what causes complications.
I read that even if you keep bloods in the normal range you can still get heart disease and other complications, so when I read on here people go into panic mode because their bloods are 7.9 I just ignore it, whereas when I was diagnosed I was panicking.
And Just because he was a footballer doesn’t mean he kept good control, yes they are fit yes they run around but it’s not to say he didn’t drink beer, eat rubbish and not keep control.
I’m told between 6-10 are good numbers to aim for and I’m sticking with it.
I found myself more stressed staying under 7.8
I’m sure the research over the years Has learnt them a lot and I put my trust in them.
But do what you feel is right and makes you happy.

 

[becca59]

@RobertJ an HbA1c of 48 and below for a Type 1 is a fairly recent addition to the NICE guidelines I believe. Probably in part because of the now widespread use of CGMs. In the past without this sort of monitoring hypos were a real concern. Hence the HbA1c level was set higher.
I agree that 60% in range on a 3.9-10 would concern me as I have mine set at 4.2-8.5 and aim for 80%+. However this lady is obviously happy and we all have to manage this condition in a way that we can live happily with.

 

[oldgreymare]

I've had type 1 nearly twenty years and have become very engaged with things in recent months, more engaged than any time previously. I feel like the general message from my clinic was that an HbA1c of 50-53 was really good, but then when you look it up on here or Diabetes UK it says it should be 48 or lower. I've never been in the 40s but I am aiming to get there as soon as I can.

I recently met up for coffee with a woman who has had Type 1 almost forty years. She has good control, no complications and is 59 years old. She said she's been told it's fine for the time in target on the Freestyle Libre to be 60% (hers is much higher). Well I'm sorry but that's irresponsible on the part of whatever doctor or nurse said it, because being between 3.9 and 10mmol 60% of the time is not going to be enough to save someone from complications.

My HbA1c has always been 50-something. I think it's got as high as 57, maybe even 59, and never officially lower than 53. I used to think this was really good but I now feel like my clinic has misled me. I thought I was one of the well-behaved diabetics with good control but in the last few months I've really had a lot of doubt about that.

I was reading about the former Tottenham player Gary Mabutt who has lost all feeling in his feet and had a situation where a rat ate part of his foot on holiday. He was in his late 50s at the time, so not even that old. Surely someone like him would have had "good control" over his life? I worry what I've been told is good control isn't going to be good enough. The idea of losing nerve feelings is so terrifying, it makes me want to never do anything fun again and just become an out and out health freak.

I was diagnosed about 15 years ago and had poor control for the first 10 years (HBAc1 65-80). Since self funding a Dexcom G6 CGM , I've managed to get this down to 43-48 and mostly 65-70% in range, but still rather more of a rollercoaster than I would like. Mostly sticking to low carb helps. I had my regular appointment with my endo recently and our conversation was regarding my pattern of nighttime lows. He made the observation that in long standing Type 1s, he worries much more about the risks associated with hypos than the risks of developing/accelerating complications. Although definitely linked to higher BGs, the onset and severity of "diabetic" complications can sadly be a bit of a lottery and is also influenced by lifestyle, genetics, etc.

Treating diabetes with injected insulin even with a pump is basically using an erratically timed sledgehammer to crack a nut, hence the guidelines are currently set conservatively to try to minimise the risks of too many hypos. Probably as the use of CGMs becomes more standard, there may be revisions to set tighter targets in the future.

So if you're still complications free, sounds like a great starting point to see if you can improve your control going forward. Have you been offered a Libre? Tried a DAFNE course? Pragmatically changing to a healthier lifestyle may not be sustainable if you don't enjoy it - work out how to incorporate fun too!

 

[RobertJ]

So if you're still complications free, sounds like a great starting point to see if you can improve your control going forward. Have you been offered a Libre? Tried a DAFNE course? Pragmatically changing to a healthier lifestyle may not be sustainable if you don't enjoy it - work out how to incorporate fun too!

I am not complication-free because I have background retinopathy, but I am apart from that.

I did a DAFNE course when I was 17 and have done a few refresher sessions since. I actually think the message from DAFNE was a double-edged sword because although the old system of injecting the same amount every day was stupid, I took the message of now you can eat whatever you want too literally.

One thing my friend and I agreed upon is that just because in a literal sense you can eat whatever you want, it doesn't mean it will stand you in the best stead for good levels. I really wish my diabetic clinic had emphasised the benefits of low-carb meals when I was at a younger age.

Anyway, yes, I've had a Libre since 2016 but until the middle of this year my control was not that good, even with it. It just shows how, without an intelligent approach, you can give people whatever technology they want and the control won't magically become good. Even with a Libre, my average glucose once went as high as 10.8. Nowadays, I'd never let that happen and my HbA1c (according to the Libre data) is on the verge of going below 50.

 

[Deleted member 527103]

@RobertJ I think it is more complex than setting the same targets for all because we are all far more than diabetes.
A Hba1c of 40 with 100% in target is a great target but at what cost? Obsession over numbers, avoidance of exercise, limited diet, women going on the pill to avoid hormonal variations, ...wrapping oneself in a sealed chamber and never leaving the house for fear of getting ill?
I know I am exaggerating to make the point that managing diabetes is a small part of managing our lives and our lives are all different.

The other thing to consider is overall health. I am not talking about "general health" which can be improved with a lower blood sugar. I mean more critical illnesses which make diabetes more challenging or, unfortunately, limit life span. Again, I know my example is extreme but, if you are terminally ill, is it better to get the joy out of a cake or avoid it because it might push blood sugars up?

 

[RobertJ]

@RobertJ an HbA1c of 48 and below for a Type 1 is a fairly recent addition to the NICE guidelines I believe. Probably in part because of the now widespread use of CGMs. In the past without this sort of monitoring hypos were a real concern. Hence the HbA1c level was set higher.
I agree that 60% in range on a 3.9-10 would concern me as I have mine set at 4.2-8.5 and aim for 80%+. However this lady is obviously happy and we all have to manage this condition in a way that we can live happily with.

Thank you @becca59, that's interesting to know. Maybe this explains why I thought 50-53 used to be the guideline then.

I should clarify, this woman wasn't saying she agreed with time in target of 60% being a good aim; she was mentioning it in the context of bad clinical advice. Her control was really good and I'm sure if I'd seen her time in target it would have been 80%+.

 

[RobertJ]

Complications happen when blood sugars are constantly high, not now and again.
My consultant told me blood sugars above 13 constantly over years not days or months is what causes complications.
I read that even if you keep bloods in the normal range you can still get heart disease and other complications, so when I read on here people go into panic mode because their bloods are 7.9 I just ignore it, whereas when I was diagnosed I was panicking.
And Just because he was a footballer doesn’t mean he kept good control, yes they are fit yes they run around but it’s not to say he didn’t drink beer, eat rubbish and not keep control.
I’m told between 6-10 are good numbers to aim for and I’m sticking with it.
I found myself more stressed staying under 7.8
I’m sure the research over the years Has learnt them a lot and I put my trust in them.
But do what you feel is right and makes you happy.

You may be right about Gary Mabutt but I'm not sure. I saw interviews with him from the 1990s and even then he said he was doing ten blood tests and seven injections a day. Maybe his control slipped since then but ultimately it's pretty discouraging.

I guess a more encouraging example is Bret Michaels, the singer of Poison. He's 59 and has had Type 1 since he was six, so 53 years. He still seems in good health and is doing live shows.

 

[mariavontrapp]

@RobertJ I think it is more complex than setting the same targets for all because we are all far more than diabetes.
A Hba1c of 40 with 100% in target is a great target but at what cost? Obsession over numbers, avoidance of exercise, limited diet, women going on the pill to avoid hormonal variations, ...wrapping oneself in a sealed chamber and never leaving the house for fear of getting ill?
I know I am exaggerating to make the point that managing diabetes is a small part of managing our lives and our lives are all different.

The other thing to consider is overall health. I am not talking about "general health" which can be improved with a lower blood sugar. I mean more critical illnesses which make diabetes more challenging or, unfortunately, limit life span. Again, I know my example is extreme but, if you are terminally ill, is it better to get the joy out of a cake or avoid it because it might push blood sugars up?

Yes, I agree with this, well-said!

 

[RobertJ]

@RobertJ I think it is more complex than setting the same targets for all because we are all far more than diabetes.
A Hba1c of 40 with 100% in target is a great target but at what cost? Obsession over numbers, avoidance of exercise, limited diet, women going on the pill to avoid hormonal variations, ...wrapping oneself in a sealed chamber and never leaving the house for fear of getting ill?
I know I am exaggerating to make the point that managing diabetes is a small part of managing our lives and our lives are all different.

The other thing to consider is overall health. I am not talking about "general health" which can be improved with a lower blood sugar. I mean more critical illnesses which make diabetes more challenging or, unfortunately, limit life span. Again, I know my example is extreme but, if you are terminally ill, is it better to get the joy out of a cake or avoid it because it might push blood sugars up?

Hi @In Response. I don't mean clinicians should be setting the most stringent targets possible but I think maybe the target of an HbA1c of 48 should be the aspiration for everyone not already there.

I agree with your point about overall health. It's important to be fit and well, even though sports is hard work for someone with diabetes. I started doing sports in a formal sense earlier this year and it's been a great decision, even though it continues to be a challenge to always get right with diabetes. This is a sport that makes my levels rise, and so giving a few units before sport has been a strange thing to get used to.

I do maintain, though, if there are diabetes specialists out there telling people 60% time in target (3.9-10) is good enough then they are wrong.

 

[Ushthetaff]

if you run your bs between 5 and 9 the chances of any serious complications are not great, run your bs at 10 and above for a long period of time and you WILL get complications , I am living proof of it ,

 

[Circuspony]

I think they are aware of how relentless T1 is to manage and know how hard it is for many of us to get anywhere near 48.

I still cannot stop my rapid midday spike - if I inject enough to get that under control the hypos from 5pm are horrendous. I'll never get near 48 with a body which behaves like that so I'm pretty sure my consultant feels it isn't productive to start beating me up over it

 

[Ushthetaff]

An Interesting thought, the conversation is about numbers I wonder how we would control our blood sugar numbers if we couldn’t take our blood sugar , wonder what our numbers would be then or how tight our control would be , there are people here myself included who have lived through that exact situation , just a thought .

 

[Nicola M]

My last HbA1c was 43 and I was in range for roughly 70% of the time according to my CGM. I am now in range roughly 75%-80% of the time so my HbA1c could be lower than that now or the same or higher. My consultant told me to aim to be in range for 70% of the time as this is more realistic. If you get more than that in range then great but if not don't stress about it. Diabetes is weird in the sense that no two days are ever the same, and doing the same thing every day can lead to different results.

Just because you have good control does not mean you are immune from complications, I have what would be considered good control and yet here I am with retinopathy although no treatment is required for me yet, I go for 3 monthly checkups, and its still as present as ever.

 

[RobertJ]

Hi @Nicola M, an HbA1c of 43 sounds incredible. When you say your consultant told you to aim for 70% in target, do you mean when the target is set to 3.9-10? I think that's a solid thing to aim for. I'm on 80% at the moment but for most of the last five years I've been in the low sixties probably, which is not good enough.

I now want to make 70% or more the new normal.

 

[RoughcutAU]

I have my personal target on my Libre set at 3.9-8.0 of which the last 90 days I have managed a TIR of 73%.

The Endo and my diabetes team had previously had my Target as the pretty standard 4.0-8.0 however the Endo did suggest i try to stick more in the middle at 6.0 due to concerns about Hypoglycemia. This was before I started using Libre a few months ago so my next appointment in January should be interesting and I can show that my low to mid 40s HbA1cs are not due to too much time in hypoland.

 

[Nicola M]

Hi @Nicola M, an HbA1c of 43 sounds incredible. When you say your consultant told you to aim for 70% in target, do you mean when the target is set to 3.9-10? I think that's a solid thing to aim for. I'm on 80% at the moment but for most of the last five years I've been in the low sixties probably, which is not good enough.

I now want to make 70% or more the new normal.

Yes, 70% when it is set to 3.9-10 I find it very attainable, more times than not my daily TIR is above 80% but I don’t worry if sometimes it is in 60% or lower range as we all get those bad days and generally it all balances out over the 3 months anyway!

 

[RobertJ]

Yes, 70% when it is set to 3.9-10 I find it very attainable, more times than not my daily TIR is above 80% but I don’t worry if sometimes it is in 60% or lower range as we all get those bad days and generally it all balances out over the 3 months anyway!

It sounds like you're operating in the same ballpark I've been most of this year. I'm going through a two-week (and counting) period of 80–84% in target but I'm not necessarily expecting to stay that good forever.