remission 'headroom'?

[Amyfaith]

Hi all,

Lucky to have managed remission now. My GP was reticent to say I was in remission till I told him I understood it didn't mean 'gone', just sort of on 'pause', then he was fine with the label (though my records don't show this, which is mildly annoying). One thing he said I thought was interesting was that at a hbA1c of 35, I have a lot of 'headroom' and should losen up my control a little. (My reading of this is that he felt I was probably being a little too careful and he was concerned in terms of quality of life but if he saw the amount of chocolate I manage to eat with a hbA1c of 35, he'd probably change his mind! ) But is the idea of having headroom to be a bit freer with my glucose control at a hbA1c of 35 remotely an accurate description? I don't especially want to be popping well into the 40s next year, even if the relative risk to myself is low. I totally expect it to creep up over time due to age/etc., but I found the slightly loose approach to my hbA1c a bit odd. His aim was to stay under 52, if memory serves, whereas I'd like to stay in well below diagnosis (and ideally pre-diabetic) levels if possible. Thoughts? Ideas?

 

[trophywench]

Personally I think you're right to trust your own instincts, meself.

 

[Martin.A]

I got as low as 35 on my way to remission but I was ruthless with my diet during those 5 months. More relaxed now and my last 5 HbA1cs have sat just below 'At Risk', where I'm happy to be. You could say I've used the headroom I created. My day-to-day diet is still tightly controlled but I allow myself the occasional treat, but only if it's something my wife's baked, or we're eating out.

 

[Taighnamona]

Hi all,

Lucky to have managed remission now. My GP was reticent to say I was in remission till I told him I understood it didn't mean 'gone', just sort of on 'pause', then he was fine with the label (though my records don't show this, which is mildly annoying). One thing he said I thought was interesting was that at a hbA1c of 35, I have a lot of 'headroom' and should losen up my control a little. (My reading of this is that he felt I was probably being a little too careful and he was concerned in terms of quality of life but if he saw the amount of chocolate I manage to eat with a hbA1c of 35, he'd probably change his mind! ) But is the idea of having headroom to be a bit freer with my glucose control at a hbA1c of 35 remotely an accurate description? I don't especially want to be popping well into the 40s next year, even if the relative risk to myself is low. I totally expect it to creep up over time due to age/etc., but I found the slightly loose approach to my hbA1c a bit odd. His aim was to stay under 52, if memory serves, whereas I'd like to stay in well below diagnosis (and ideally pre-diabetic) levels if possible. Thoughts? Ideas?

Well done on that reduction! Trust yourself. I followed medical/dietary advice for decades and made everything worse. Now I’m low carb and last A1c was 38 but I need a little insulin to reach that… have reduced it but stopping it raises my levels again. Haven’t quite worked out what’s happening. Meeting with the dietician before Christmas and she wanted me to have carbs with every meal. I thanked her for her input and told her I’d never felt better in decades and would be sticking with what I was doing.
And that’s what it’s about. Feeling good and being healthy and if your way is right for you then stick with it. If you have a treat at a celebration then you know you can do that happily without causing long term damage to yourself. Carbs are harmful to us and I’m not sure how long it’s going to take the medical profession to agree with us.
Best wishes.

 

[everydayupsanddowns]

One thing he said I thought was interesting was that at a hbA1c of 35, I have a lot of 'headroom' and should losen up my control a little. (My reading of this is that he felt I was probably being a little too careful and he was concerned in terms of quality of life but if he saw the amount of chocolate I manage to eat with a hbA1c of 35, he'd probably change his mind! ) But is the idea of having headroom to be a bit freer with my glucose control at a hbA1c of 35 remotely an accurate description? I don't especially want to be popping well into the 40s next year, even if the relative risk to myself is low. I totally expect it to creep up over time due to age/etc., but I found the slightly loose approach to my hbA1c a bit odd. His aim was to stay under 52, if memory serves, whereas I'd like to stay in well below diagnosis (and ideally pre-diabetic) levels if possible. Thoughts? Ideas?

I think I understand where your GP is coming from, and I suspect it’s advice that comes from years of experience and watching others travel the same journey.

I’m pleased your HbA1c wasn’t described as being “too low”.

The evidence which underpins much of the HbA1c guidance in terms of reducing complications began with the DCCT trial and follow-ups. These generally showed a sort of J shaped curve for complication risk, which rises very steeply above a certain point, but it levels out as you get down to around 48mmol/mol, and the risk reduces much less dramatically below that.

The HbA1c target used to be 58mmol/mol (often called 7.5% at the time), and there was some resistance to lowering it to the current 48mmol/mol (6.5%) especially for those on glucose-lowering meds like insulin, because of the possible increased risk of hypos when aiming a little lower. Was the relatively modest additional risk reduction “worth it”. I’m pleased to say that it was decided that it was worthwhile, as long as hypoglycaemia was kept in check.

At 35mmol/mol you are cruising a good way below the ‘at risk of diabetes’ zone, so if your current management strategies feel at all restrictive, then it’s possibly good to know that you perhaps have a little ‘wiggle room’?

 

[Amyfaith]

I think I understand where your GP is coming from, and I suspect it’s advice that comes from years of experience and watching others travel the same journey.

I’m pleased your HbA1c wasn’t described as being “too low”.

The evidence which underpins much of the HbA1c guidance in terms of reducing complications began with the DCCT trial and follow-ups. These generally showed a sort of J shaped curve for complication risk, which rises very steeply above a certain point, but it levels out as you get down to around 48mmol/mol, and the risk reduces much less dramatically below that.

The HbA1c target used to be 58mmol/mol (often called 7.5% at the time), and there was some resistance to lowering it to the current 48mmol/mol (6.5%) especially for those on glucose-lowering meds like insulin, because of the possible increased risk of hypos when aiming a little lower. Was the relatively modest additional risk reduction “worth it”. I’m pleased to say that it was decided that it was worthwhile, as long as hypoglycaemia was kept in check.

At 35mmol/mol you are cruising a good way below the ‘at risk of diabetes’ zone, so if your current management strategies feel at all restrictive, then it’s possibly good to know that you perhaps have a little ‘wiggle room’?

This is super helpful, thanks. It’s sort of what I figured, in the sense that risk to me medically is kind of negligible below 52ish, but of course for myself I’d like to stay well lower than that provided I don’t have any issues with it. And yes, definitely good to know I have wiggle room - I’m currently testing it a bit, adding some wheat back in to see if it’s still a problem (jury’s out on that atm), adding a few extra carbs per meal and seeing if I see a difference in fasting numbers, etc. My suspicion is I can tolerate quite a lot more carbs than I’m having at most meals (I do 30ish - am guessing my reasonable limit is more like 50 and can go up to about 80 if ‘necessary’ as a one off, based on Christmas) - but I also know what I’m like and I can very easily turn ‘oh a one-off won’t hurt’ into an a1c of 85 again… it’s one of the reasons I still test. Have to keep myself honest and not go wild while I see what I can still handle.

But honestly, I don’t feel especially hard done by diet-wise, so am not super eager to rebalance my macro ratios - mostly want to see what else I ‘can’ eat, if that makes sense!

Also… too low??!! As in, likely the result of loads of hypos rather than good control?

 

[BobbleHat]

Also… too low??!! As in, likely the result of loads of hypos rather than good control?

I'm not officially in remission yet but my first post-diagnosis hba1c was 39. Due my 2nd next month.

It's listed as 'abnormal' on my NHS app which surprised me, as - of course - hba1c in the thirties is NOT abnormal. But, on reading the small print, they label it as abnormal for a diabetic because of the increased risk of hypoglycaemia.

I don't really get hypos - my hba1c, for me, just means that I have a general straight line around 5-5.4 on my Libre and my TIR is >98%. So, I'm unworried and disinclined to change the practices that have helped reduce my hba1c.

 

[JITR]

I agree. If it works don't fix it, let it evolve.

Suggest you look at Nicola Guess's 'What is prediabetes?'

 

[everydayupsanddowns]

Also… too low??!! As in, likely the result of loads of hypos rather than good control?

Yes in the days before widespread CGM availability it was an easy assumption for clinics to make that it *must* be that a person (especially with T1) must be having far too many lows / hypos, and they should increase their HbA1c. @PattiEvans and I had that conversation in clinics several times 🙄

 

[Amyfaith]

Totally understandable, clinically, pre-CGM - without knowing people aren’t having hypos unknowingly, particularly for Type 1s, it could raise alarm bells (presuming it’s the *only* cause is rather a different issue). CGMs aren’t perfect but at least they provide much broader data set for GPs. But yeah, I think as Type 2 it was just kind of ‘holy moly - right, you can ease up a little if you want’ rather than any sense of ‘uh, that’s a little low’ (I may be summarising slightly). I did mention I had been using CGMs to work out some issues and to see what was happening at night and I think saying I saw more or less flat lines except after eating (and then mostly gentle ups and downs) helped.

 

[Amyfaith]

I'm not officially in remission yet but my first post-diagnosis hba1c was 39. Due my 2nd next month.

It's listed as 'abnormal' on my NHS app which surprised me, as - of course - hba1c in the thirties is NOT abnormal. But, on reading the small print, they label it as abnormal for a diabetic because of the increased risk of hypoglycaemia.

I don't really get hypos - my hba1c, for me, just means that I have a general straight line around 5-5.4 on my Libre and my TIR is >98%. So, I'm unworried and disinclined to change the practices that have helped reduce my hba1c.

Fingers crossed you’ll hear the R-word after your next appointment. (It’s not listed in my charts, annoyingly, but the GP did say I was technically in remission, so I’m running with that…)

 

[Burylancs]

This is super helpful, thanks. It’s sort of what I figured, in the sense that risk to me medically is kind of negligible below 52ish, but of course for myself I’d like to stay well lower than that provided I don’t have any issues with it. And yes, definitely good to know I have wiggle room - I’m currently testing it a bit, adding some wheat back in to see if it’s still a problem (jury’s out on that atm), adding a few extra carbs per meal and seeing if I see a difference in fasting numbers, etc. My suspicion is I can tolerate quite a lot more carbs than I’m having at most meals (I do 30ish - am guessing my reasonable limit is more like 50 and can go up to about 80 if ‘necessary’ as a one off, based on Christmas) - but I also know what I’m like and I can very easily turn ‘oh a one-off won’t hurt’ into an a1c of 85 again… it’s one of the reasons I still test. Have to keep myself honest and not go wild while I see what I can still handle.

But honestly, I don’t feel especially hard done by diet-wise, so am not super eager to rebalance my macro ratios - mostly want to see what else I ‘can’ eat, if that makes sense!

Also… too low??!! As in, likely the result of loads of hypos rather than good control?

Check out the work of Professor Craig Christie. It was he who produced the J-line on Type 2 complications. Basically his work suggests there is a floor below which T2 HbA1cs should not be driven because the risks of complications increase. The target HbA1c should individualised on age,stage, ethnicity, duration of T2 and lifestyle.

 

[Amyfaith]

Check out the work of Professor Craig Christie. It was he who produced the J-line on Type 2 complications. Basically his work suggests there is a floor below which T2 HbA1cs should not be driven because the risks of complications increase. The target HbA1c should individualised on age,stage, ethnicity, duration of T2 and lifestyle.

Interesting! You don’t happen to have a link, do you? (Paywall not an issue - have institutional access to most stuff.)

 

[JITR]

Check out the work of Professor Craig Christie. It was he who produced the J-line on Type 2 complications. Basically his work suggests there is a floor below which T2 HbA1cs should not be driven because the risks of complications increase. The target HbA1c should individualised on age,stage, ethnicity, duration of T2 and lifestyle.

Could not find a reference to this work either, @Amity Island.

I did turn up this J-curve from a WHO report:


When you do the conversions this supports the views that (a) HbA1c of 48 mmol/l is a convenient threshold for a T2D diagnosis, and (b) there is a high risk of complications such as retinopathy above 60 mmol/l.

Of course the maxim 'We are all different' applies, so these are general guidelines and there will be exceptions.

You may find the report Use of Glycated Haemoglobin(HbA1c) in the Diagnosis of Diabetes Mellitus worth reading.