NICE recommendations for T1

[DeusXM]

I've been very actively involved in working with my care team and my D for some years now, I'm extremely hands-on. I've always heard varying recommendations about what is a good A1c. Some have told me 6.5% is the bare minimum for 'good', others say 7%. Meanwhile, I've also experience of living in other healthcare systems where they have been much more aggressive about pushing 6.5% as a minimum standard, and I'm aware there are other experts out there who actually suggest 6% as a minimum.

Now, the following isn't meant to be a judgement call on anyone's standard of control. I know just how hard it is to achieve a lower A1c and my personal best has only every been 6.7%. I'm not criticising people for not getting better results - this is a criticism that the healthcare system that is supposed to support us is giving bad advice and we're paying the price.

After digging around NICE's website, I'm shocked to see the 'official' recommendation for people with T1 is between 6.5% and 7.5%. Meanwhile, the WHO's guidelines for diagnosing diabetes (and by implication, maximum permissible for untreated diabetes) is 6.5%. How on earth can the NHS recommend an A1c for uncontrolled diabetes as the best possible target for diabetes control?

The problem (to me) is this is based on research that is already 20 years out of date - since DCCT and ACCORD, we've had a far greater range of basals and bolus insulins introduced that offer far more flexibility and control than what was previously available. The NHS has been pumping out this advice for years but is now complaining that the cost of complications is bankrupting it.

Doctors are too frightened to push their patients to achieve better targets because if something goes wrong, they'll be the one having to deal with it. Tell an adult that a 7.5% A1C after a few years of having T1 is fine, and when the complications hit in a decade or so's time, the doctor will either have retired or moved on, and in any case, won't have some direct paper trail leading back to them.

Isn't it about time the NHS is pressured to well, pressure patients? The sad fact is we have a system that is prepared to send people home with A1Cs in the 7s and tell them they're doing really well. Surely the NHS should be giving us a breakdown of the risks and rewards for our A1cs so we can make a choice about what we want our level of control to be? Isn't it about time there was a fair and frank debate about the value of getting lower A1cs AND explaining to both patients and doctors that a lower A1C doesn't automatically equal hypos all the time? I guess to be honest I'm so sick and tired of putting in work to try and get my A1C to a level I want it to be, only to find myself getting stonewalled by doctors and nurses whose best medical advice ends up being a wagging finger and then telling me "Ah, you'll just get loads of hypos then." No I won't! Not if you give me the support and guidance I need!

And just maybe, if they did that, diabetes wouldn't be projected to cost the UK economy billions over the next 30 years.

 

[Northerner]

I think that for many people who work really hard at getting good control it may be very demotivating to set the bar too low as far as HbA1c is concerned. There have been studies, I believe, that suggest stability, but possibly at a higher level, is preferable to a lower but widely-fluctuating HbA1c. It has to be a figure that is achievable or it becomes an impossible dream for many who will then only experience a sense of failure at every review. If 6.5% has been shown to be a level at which the risks of complications are virtually negligible I don't see a problem with it. Also, in children, teens and young people there are many factors that might make lower targets than those suggested virtually impossible, that an adult may not even have to consider.

Since I was diagnosed with an HbA1c of 11.8% my results have always been in the 5% range - lowest 5.2%, highest 5.9% - but I'm very much aware from reading the experiences of others that I have things very easy compared to many, and there are so many people who, however hard they try, cannot come close to my results.

 

[Abi]

I personally think an A1c in the low 7s isn't bad going for an insulin user with a total absence of endogenous insulin production. Health care providers are probably far too tied up trying to get people with HbA1cs in the double figures sorted out and to be honest most of the people I encounter with severe problems are in this group-long spells of rebellion/ denial etc etc.
I do agree that some people with suboptimal control need more input and that some people certainly struggle more to get lower A1cs- and I believe that people with no endogenous insulin production plus extreme insulin sensitivity which make titration and fine tuning difficult, are the ones who are at a real disadvantage.
I've managed an A1c of < 7% on about 5 occasions - two were on a pump- my first spell on a pump- this as almost 10 years ago- I know far more now about managing diabetes and am more consientious re accurate carb counting/ fasting basal tests etc so why is my control less good? I wonder if it is due to total loss of beta cell function- howevere, at this previous stage the little blighters couldn't have been up to much as I'd already had type one for 15 years. The other occasions were on MDI with split levemir and initially lower carb intake and then one period of slightly higher carb intake. My corneol then slipped and has been no lower than 7.1% over the past 4 years although with less highs and lows and more gneral stability day to day on the pump

Where patients are being let down is medics failing to do more than treat with a one size fits all approach and I'm afraid that strip rationing is still occuring in some areas even for type ones. The impact of factors which are either wholly or partly outside the patients control such as stress and varying insulin requirements due to hormonal fluctuations are also underplayed.

 

[newbs]

I think that a HbA1c in the 7s is a realistic figure for most and more achievable than anything lower.

I do, however, know what you mean by the brick wall as I have hit it several time recently when saying I would like my A1c to be lower (currently 7.2%). I have been lucky in that this is only the 2nd time in 12 years that mine has been above 7 but recently I have really struggled with hypos and 7.2 is reflective of my control in order to stop those. I am now on a different basal and this has brought the hypos back with a vengeance, so I am once again trying to straighten them out but maintain good control at the same time, not easy to do. My consultant has listened to me this time though and agreed to try to lower my A1c whilst addressing the hypo issue at the same time ? time will tell!

As far as the guidelines go, it is a case of easier said than done. We would all like to achieve the results best for us I am sure, doing so is the hard part.

 

[martindt1606]

If the DVLC expect drivers to be over 5.5 then it is impractical to suggest a target of under 6.5. There has to be a margin otherwise you would need to pull the car over and test your blood every 15 minutes.

 

[Robster65]

Where patients are being let down is medics failing to do more than treat with a one size fits all approach and I'm afraid that strip rationing is still occuring in some areas even for type ones. The impact of factors which are either wholly or partly outside the patients control such as stress and varying insulin requirements due to hormonal fluctuations are also underplayed.

I would agree that this is the main issue. It's not that the GPs/nurses won't give support. They don't know how to. They haven't a clue what living with T1 is like and have no idea about how to tweak things to manage it.

And there's a possibly a high % of patients who really don't want to readjust their lives to scrape a further 0.5% off their Hb when they already feel they've sacrificed a lot.

It's probably easier for us long termers because what we have now is vastly better than what we had. FOr anyone diagnosed in the last 5-10 years, there's been no real improvement in advice or equipment.

I've had a fairly consistent 6.3% for the past 18 months. I'm ecstatic with that but I have to work fairly hard at it. It does cause stresses of its own and I'm in a fortunate position with a very proactive partner beside me. My Hb was, at best, in the 8s before then.

I agree that there should be more 'realistic' information available to NHS T1s at diagnosis and periodically thereafter so that we can decide for ourselves how dedicated we want to be. But unless the NHS matches that dedication with well informed staff and enough trust in the patient to give unrestricted supplies, many will just give up.

It's not just a matter of one size fits all, it's a matter of knowing how to measure to find what does fit.

Rob

 

[DeusXM]

I totally get the point about demoralising people - that's part of the reason why I said I wasn't talking about judging people. I guess from my perspective though, I feel the balance of care is too much on avoiding making people feel bad and not enough on actually making them better. As a case in point, we do have a situation where we're told a specific BMI or under is 'good'/'normal' and those who exceed that BMI are told they absolutely should get it back down to that 'normal' number. Leaving aside whether BMI is a valid measure or not, the point still stands that we have a situation where there is an accepted medical absolute for everyone, and those who don't meet it are told there will be consequences and it's on them.

Yet when we come to diabetes, the situation is completely different. I just think it's unfair - I'm sure there are thousands of people out there who have never even though to aim for lower than 7.5% who now suffer complications, and I bet if they'd been given better information, their choices might have been very different. I just don't believe it's impossible to get normal A1Cs with T1 - fine, it might not be easy, but shouldn't the NHS at least give people something to aim for?

I suppose I'm a bit divided on the difficulty side of things. My view is that when you treat diabetes, your aim is to minimise the impact it has on your life. That's a holistic thing - it encompasses avoiding complications but it also means living like a 'normal' person as much as possible. I think if you're spending your whole time weighing out your food and reading carb books, checking your BG every hour and cutting out entire food groups from your diet, you're not 'minimising the impact' but I guess it's an individual choice.

I dunno, I guess I just want some sort of recognition from the medically qualified that it's acceptable and desirable to aim for a non-D A1C. Instead, I get that one-size fits all approach that's been mentioned, where it's assumed I don't have a clue what I'm doing and could have some massive incapacitating hypo at any moment. I'm simply not that delicate

 

[Robster65]

I totally get the point about demoralising people - that's part of the reason why I said I wasn't talking about judging people. I guess from my perspective though, I feel the balance of care is too much on avoiding making people feel bad and not enough on actually making them better. As a case in point, we do have a situation where we're told a specific BMI or under is 'good'/'normal' and those who exceed that BMI are told they absolutely should get it back down to that 'normal' number. Leaving aside whether BMI is a valid measure or not, the point still stands that we have a situation where there is an accepted medical absolute for everyone, and those who don't meet it are told there will be consequences and it's on them.

Yet when we come to diabetes, the situation is completely different. I just think it's unfair - I'm sure there are thousands of people out there who have never even though to aim for lower than 7.5% who now suffer complications, and I bet if they'd been given better information, their choices might have been very different. I just don't believe it's impossible to get normal A1Cs with T1 - fine, it might not be easy, but shouldn't the NHS at least give people something to aim for?

I suppose I'm a bit divided on the difficulty side of things. My view is that when you treat diabetes, your aim is to minimise the impact it has on your life. That's a holistic thing - it encompasses avoiding complications but it also means living like a 'normal' person as much as possible. I think if you're spending your whole time weighing out your food and reading carb books, checking your BG every hour and cutting out entire food groups from your diet, you're not 'minimising the impact' but I guess it's an individual choice.

I dunno, I guess I just want some sort of recognition from the medically qualified that it's acceptable and desirable to aim for a non-D A1C. Instead, I get that one-size fits all approach that's been mentioned, where it's assumed I don't have a clue what I'm doing and could have some massive incapacitating hypo at any moment. I'm simply not that delicate

But by the same token, if you did want to get yoru Hb below 7 and wasn't sure what to change, do you trust your team to advise you what to do (assumign they share your goal, as you rightly say) ?

I would only trust a properly trained DSN but many in the UK are faced with GPs or nurses who don't really know more than the basics.

Rob

 

[DeusXM]

Very good point. I don't think I've really listened to the advice of anyone in my care team since 2005. Instead, I've been listening to what others with diabetes actually do.

 

[everydayupsanddowns]

This bham.ac.uk page suggests that 3.5% - 5.5% (15-37 in new money) would be a 'normal' A1c for a non-Diabetic:

http://medweb.bham.ac.uk/easdec/prevention/what_is_the_hba1c.htm

The 'complications likelihood' graphs I have seen are kinda 'hockey stick' affairs with a steep rise in complication likelihood in upwards of 7-8ish and a flatter section below that. This, I think, gives rise to all those conversations we've had about A1cs being 'too low'. The assumption being that it is just too difficult to get to the low 6's and certainly into the 5's without having waaaay too many hypos. The HCPs just don't see the risk-reward being good enough if patients try to avoid complications by having multiple hypos (even undramatic low level ones) every other day.

My last A1c on MDI was 6.3% at which point I had *that* conversation. That's all very well, I said, but you didn't tell me off half so much about hypos when I was in the 7's even though I was having twice as many.

One of the good things about the pump guidelines I suppose is that it does open the door to the most sophisticated insulin delivery method where people are unable to get below 8.5% on MDI. I think that's just the sort of thing you are suggesting really - more support and more options with the aim for getting an A1c below 7.

What people *really* need I suppose is more support in tailoring/adjusting/perfecting their approach to MDI. And then to find their own balance between living in the most monk-like diabetically friendly way and living/eating more freely.

 

[Robster65]

I would suggest that most T1s don't really know any other T1s and wouldn't discuss their control.

Until I found this forum I hadn't discussed it with another T1 for over 30 years. I relied on the knowledge I gained in the first few years plus snippets from consultants or DSNs in the interim. Which wasn't a lot and wasn't very up to date. Hence the higher HbA1c, which I took little notice of because I didn't want tighter control to impact on my life.

Until I had a small amount of eye lasering and a stern talking to from my partner.🙄

But my surgery, who were handling me at the time, didn't have a clue what to suggest. I was then referred to the hospital clinic.

We do weigh food and read labels and count every gram, where possible. I'd never have a low Hb any other way. I can guess reasonably well but I prefer it this way. Also corrections are a big part. But who wants to add in extra injections?
I don't but weigh up the pros and cons.

I'm going to push for a pump btu don't hold much hope. It won't happen for a couple of years even if I get the go ahead.

But i would encourage anyone to aim for below 7% if they can. There's always something that can be done to get there. All down to compromise. 🙂

But still my surgery don't show any trust in me as a chronic patient. If they did, I'd have less worries about runnign out of test strips or needles. They treat me the same as someone who's on anti-b's for a week or sleeping pills for a month. That's my biggest gripe at the moment. We manage our own condition and supplies but are seen as wasteful and potentially as thieves.

Rob

 

[Robster65]

This bham.ac.uk page suggests that 3.5% - 5.5% (15-37 in new money) would be a 'normal' A1c for a non-Diabetic:

http://medweb.bham.ac.uk/easdec/prevention/what_is_the_hba1c.htm

The 'complications likelihood' graphs I have seen are kinda 'hockey stick' affairs with a steep rise in complication likelihood in upwards of 7-8ish and a flatter section below that. This, I think, gives rise to all those conversations we've had about A1cs being 'too low'. The assumption being that it is just too difficult to get to the low 6's and certainly into the 5's without having waaaay too many hypos. The HCPs just don't see the risk-reward being good enough if patients try to avoid complications by having multiple hypos (even undramatic low level ones) every other day.

My last A1c on MDI was 6.3% at which point I had *that* conversation. That's all very well, I said, but you didn't tell me off half so much about hypos when I was in the 7's even though I was having twice as many.

One of the good things about the pump guidelines I suppose is that it does open the door to the most sophisticated insulin delivery method where people are unable to get below 8.5% on MDI. I think that's just the sort of thing you are suggesting really - more support and more options with the aim for getting an A1c below 7.

What people *really* need I suppose is more support in tailoring/adjusting/perfecting their approach to MDI. And then to find their own balance between living in the most monk-like diabetically friendly way and living/eating more freely.

Beautifully put !

Rob (monk-like except for cheesecake 😱)

 

[everydayupsanddowns]

Mmmmmmmmm cheeeeeeeeese caaaaaaaaake!

 

[Robster65]

I had a slice at dinnertime. It tends to spike late but I can do a split bolus or get active at the right time. If it impacts on my health, I'll avoid it like many other things.

I love beer but it's not easy to plan in late in the evening without going into the teens and then come down in the night. So I stick to one every now and then (once a week?) and try to ride it as best I can.

I love any sort of sweet and sickly pudding or cake. If I wasn't diabetic, I'd be a huge cake-monster. But it isn't really an option so I choose to deny myself the pleasure apart from the odd indulgence. But pretty much everything else is on the ok list.

As with most of the population, I think many T1s will choose to indulge more and risk some health problems later. Most non-Ds don't go without things that clearly impact on their health. So, why would T1s be much different?

I've reached my mid-40s and decided I should start getting tighter control. In my 20s I was more interested in work, family and mortgage payments than in acheiving normal BGs. Havign said that, I was in my mid to late 20s when I got my first BG meter so it wasn't much of an option before then!

ROb

 

[Ellie Jones]

When it was decided what was deemed as good control, it is based on several factors, one a realistically achievable for most, also included where the impact of complications each way and provides a safety net..

WHO constantly monitor HbA1c's to complications and review the results every couple of years... Even with improvements the graph's show that between 6.5-7mmol/l sits at the bottom of a U shape, go left the complications such as hypo unawareness etc rises, go right the other long term complication increases...

I think that most diabetic's actually forget the sheer impact on daily living when hypo awareness is lost and what dangers this puts the diabetic in!

So it's a case of where best to aim for, to keep away from all the various complications we can suffer from...

Not sure where everybody get the DVLA says WE must be above 5.5 mmol/l when driving, they give 5mmol/l as part of advise to sensible cautions to driving, you only actually break the law if you start driving with a 3.9mmol/l or under! Above this is perfectly legal to start your journey, just very unwise to do so..