HbA1c levels

D

Duncan23

Active Member
Relationship to Diabetes
Type 1
I have type 1, and I’m trying to understand what the optimum level is for my HbA1c results. It notes 48 mmols/ mol as ideal on this site, but surely the ideal level is less than 36, which is a healthy persons level. Is the 48 level just a more realistic level to aim at given that we’re ill ? There must be health consequences for being over the normal level, just fewer consequences if it’s 48 as opposed to 58 or 68. My levels were up around 100 when I was diagnosed and down to around 45 now. I’m injecting insulin. I’m not sure that I can get the levels down much more, but I’d like to know if I should try.
 
Getting down to normal levels isn't acheivable for many. If you can do it without getting too many hypos, go for it, but for some it would just lead to stress, frustration and burn out.
 
My understanding (but I can't find the references) is that it much lower than 48 is a case of diminishing returns for what is potentially high cost to the quality of other parts of your life (mental health, etc).
There is a fear of too many hypos so I can see the measurement becoming Time in Range as more people (at least those with Type 1) use CGMs.
Just like humans, diabetes is complex and fickle making it difficult to measure the optimum HBA1c (or TIR). Some people are more prone to complications than others.

Duncan23 said:
Is the 48 level just a more realistic level to aim at given that we’re ill ?
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Do you think diabetes is an "illness"? I certainly don't and my doctors don't treat me as if I am ill. Part of my body (my beta cells in my pancreas) do not work but by replicating its function (injecting insulin that the cells would "normally" produce), I can live a full life.
 
You need to distinguish between what might be considered 'ideal' levels for Type 1 or Type 2 who take insulin and Type 2 who are only diet or diet and oral medication managed.
What is ideal may be very individual.
 
Duncan23 said:
Is the 48 level just a more realistic level to aim at given that we’re ill ?
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It wasn't always entirely clear that lower was better. It was strongly suspected that complications could be reduced but it was established convincingly with some large long term trials. Those also showed that as the risk of complications were reduced by tighter control, the chances of serious hypos increased. So 48 is a bit of a compromise, as you say.

Various studies also showed that the risk of complications is very far from linear in HbA1c, so reducing from 70 to 60 is much more valuable than from 60 to 50 which is worth more than 50 to 40.

I think a common figure is 53: if you get less than 53, going lower might be beneficial but there's not a whole lot of evidence for that. (I'm sure the JDRF website had mention of something like that but I can't find it now. Maybe I imagined it.) (I just had my HbA1c done and it was 52 (so slightly above last year's 50, but fine) and at the review the person reviewing (I think the GP pharmacist, unusually) commented that I was just under the target of 53. So maybe the local area targets under 53 or something (or maybe under 53 is fine for someone of my age).)

Now we (almost) all have CGMs with alarms (and better insulins than were available during the large trials, along with (for some) pumps), maybe the risk of serious hypos is more manageable, and it seems plausible a lower target might produce benefits.

I think it's quite plausible that a slightly higher HbA1c than normal is entirely safe. Maybe if you're around 48, differences in risk are more influenced by glucose variation than the levels? i.e., maybe glucose spikes might be more important than (say) 49 to 48. I'm not sure how researchers might determine that. I presume there are people carefully studying people on HCL to see what they can learn.
 
Thank you for the responses- all very interesting to consider. Following on from getting my glucose levels down from very high to what they are now- in the right ball park, I’m thinking about what my priorities are. If there is little to gain from reducing my HbA1c from where it is at around 45, maybe I should be re- focussing on avoiding hypos and keeping my percentage in-range at a good level.
I’m also wondering about the benefits of a pump as opposed to injections. A pump may well help smooth out the ups and downs.
On the question of whether or not I consider I have an illness, I definitely do. I take it seriously and it affects my life on a continuous basis. I wouldn’t last long without my Insulin, so that’s not part of a healthy life. I can understand if others want to think about it in other ways, but if I think of my previous healthy life and my life now, it’s a big change.
 
Duncan23 said:
maybe I should be re- focussing on avoiding hypos and keeping my percentage in-range at a good level.
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Yes, I don't think anyone would disagree with that: reducing hypos and reducing variability generally are good.

Once you're at (say) <2% below 3.9 and above 80% in range do you get much from improving either or both of those? I'm not sure anyone knows, for sure. If you can do that without much effort (because you're offered an HCL, for example) then sure, go for it. If it risks interfering with things that matter to you (going out to eat with friends, for example), then I suggest not to bother.
 
Duncan23 said:
I have type 1, and I’m trying to understand what the optimum level is for my HbA1c results. It notes 48 mmols/ mol as ideal on this site, but surely the ideal level is less than 36, which is a healthy persons level. Is the 48 level just a more realistic level to aim at given that we’re ill ? There must be health consequences for being over the normal level, just fewer consequences if it’s 48 as opposed to 58 or 68. My levels were up around 100 when I was diagnosed and down to around 45 now. I’m injecting insulin. I’m not sure that I can get the levels down much more, but I’d like to know if I should try.
Click to expand...
Driving the HbA1c down into the 30s can be problematic because of the unintended consequences of the measures needed. Prof. Craig Christie did a lot of work on HbA1cs and concluded that for Type 2s ( not Type1s) ideal levels should depend on individual factors ( age, stage, duration of diabetes, co-morbidities, complications etc). There is a strong lobby who say 'lowest is not best' and that 'floors' for HbA1cs should set.. Does your team set your targets ?
 
I’m over 90% in range with very few bad hypos, so things feel pretty stable now. Given your comments, I’ll just keep doing what I’m doing I think. I don’t have any faith in my GP, as they have got everything wrong so far. I’ve seen a Diabetes nurse a couple of times, which was reassuring when I started on insulin. I’ve still to see a consultant for more long term advice. I live on an island and they only visit every 3 months, and so far I’ve not managed to get an appointment. There is no team.
This forum is a good resource for me.
 
You are doing a great job @Duncan23 from what you have said - It must be difficult being away from the mainland and the usual support - anything in the late forties or early fifties on your HbA1c with type 1 shows very good control - don't focus on the thirties - focus on the time in range and getting the dosage right to avoid the spikes and definitely avoid the lows - glad you find this forum such a good resource - it is for me too
 
I second the comment by @mashedupmatt. You are doing extremely well @Duncan23, despite a GP who hasn't got much of your diagnosis right so far and without a Hospital based Clinic providing any oversight.

I've read back into your history and I don't think anyone has advised you to look at a couple of books that many of us have found useful:

Gary Scheiner's "Think Like a Pancreas". He is a US T1, diagnosed in his late teens and now provides Specialist D Consultancy. I found his style easy to read and really useful during my first year in what felt a pretty miserable wilderness (and before I found this forum).​
​
Ragnar Hanas's "Type 1 Diabetes in Children Adolescents and Young People". Ignore the ageism in the title; it's more of a reference source and at age 75 there is plenty of useful material in there for me!​
​
Also, have you seen the International Consensus about TIR? If not, ask and I'll search for it - I'm travelling right now, in Jersey tomorrow; was in Inverness last week!

At 90%, you are doing amazingly well and have set yourself a terrific benchmark. I'm not clear what age group you are in, but I would just most gently and cautiously advise you to not let your D management take you into "burn out". You are in a marathon, which is getting the benefit of considerably improved medical understanding and improved tech. But the promised final cure is not yet in sight, so neither is the marathon finish line.

Anyway, do give yourself a significant "pat on the back". This D management business is not easy and as Gary Scheiner remarks it is "Complicated, Confusing and Contradictory". So true.

NB: in c. July '24 you commented on needing snack bars from time to time and from that remark my perception was that this was not ideal in your mind. If I misunderstood, apologies. But I think a snack, whatever that might be, is wholly acceptable if it helps deflect a low and prevent a hypo. The inconvenience of a snack is miniscule in relation to that possible hypo and the potential long term damage of glycaemic variabilty is much greater than any possible damage from a modest snack that helps nudge a low upwards. Within our D circumstances for me snacks are a great solution and I have Graze and other protein bars in most pockets or backpacks, as well as mini-packs of Haribos. Thanks to CGM I nowadays rarely need an actual hypo response treatment; Haribo packs get replaced because the packaging has deteriorated rather than 'needing' to be eaten.
 
Thanks everyone for the feedback. I’m 57. I have now sent away for the ‘Think like a Pancreas’ book, so thanks for the recommendation.
As I was initially told I had type 2, I spent all of 2023 trying my best to reverse it - and had some books on that topic. It was a wasted year for me culminating in me getting quite thin and feeling very ill. I cut out all the sugar in my diet that year-and got quite used to that, which is why it feels a little counterintuitive to be eating the snack bars now to help control the t1. I do feel like I’m ticking along now with less extremes of my glucose levels, and don’t feel like I’m having too much trouble doing it. The very nature of D is that you have to constantly think about it and micromanage things - and the stress of that can be tough. It is a marathon all right!
 
Duncan23 said:
I’m over 90% in range with very few bad hypos, so things feel pretty stable now. Given your comments, I’ll just keep doing what I’m doing I think.
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Sounds like you are doing an amazing job @Duncan23

For my money, TIR (time in range) is a more nuanced and better measure than HbA1c - even though we don’t yet have the body of long-term research data about its potential impact on complication risk.

There are some shortcomings with HbA1c which have been studied. It’s a great measure, and the overall picture of reduction in development of microvascular complications at lower levels is really clear, but it is also known that two people can have a very different experience of complications at the same HbA1c if the glucose levels / fluctuations that lie beneath that number are very different.

Smoother, gentler fluctuations, within a smaller overall range seems to be the factor which better predicts whether a given HbA1c might indicate reduced complication risk. And that’s just what TIR can show you.

Incidentally, I was fortunate enough to be a lay member on the NICE guideline update for T1 in adults, which reduced the generally suggested target from 7.5% (58mmol/mol) to 6.5% (48mmol/mol) after reviewing the evidence. I wrote this about the discussion at the time, as there was something of a backlash about the recommendation:

6.5% - Are they mad?

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.
www.everydayupsanddowns.co.uk www.everydayupsanddowns.co.uk
 
Duncan23 said:
Thank you for the responses- all very interesting to consider. Following on from getting my glucose levels down from very high to what they are now- in the right ball park, I’m thinking about what my priorities are. If there is little to gain from reducing my HbA1c from where it is at around 45, maybe I should be re- focussing on avoiding hypos and keeping my percentage in-range at a good level.
I’m also wondering about the benefits of a pump as opposed to injections. A pump may well help smooth out the ups and downs.
On the question of whether or not I consider I have an illness, I definitely do. I take it seriously and it affects my life on a continuous basis. I wouldn’t last long without my Insulin, so that’s not part of a healthy life. I can understand if others want to think about it in other ways, but if I think of my previous healthy life and my life now, it’s a big change.
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I suppose the question of whether D constitutes an illness or not, in my view, is this question - Does having it severely limit your current life ? In my case (even though I have a stable sugar level, with TIR in the high 90%s) my answer is yes. I don't have the energy and stamina that I had 10 years ago, mostly due (IMO) to my body not having the reservoir of glucose/glycogen it used to have (by deliberate management actions on my part).

Mind you I'm also well into what could be called old age now.
 
helli said:
My understanding (but I can't find the references) is that it much lower than 48 is a case of diminishing returns for what is potentially high cost to the quality of other parts of your life (mental health, etc).
There is a fear of too many hypos so I can see the measurement becoming Time in Range as more people (at least those with Type 1) use CGMs.
Just like humans, diabetes is complex and fickle making it difficult to measure the optimum HBA1c (or TIR). Some people are more prone to complications than others.


Do you think diabetes is an "illness"? I certainly don't and my doctors don't treat me as if I am ill. Part of my body (my beta cells in my pancreas) do not work but by replicating its function (injecting insulin that the cells would "normally" produce), I can live a full life.
Click to expand...
That's an interesting question that you raise about whether or not diabetes is "an illness". I conceptualise my LADA as an illness, in that (for whatever reason) my body isn't producing/using insulin well enough, or at all. If I didn't think of it as an illness, I might be tempted to be in denial about it, given that it isn't visible. However, I remember how ill I was (without realising it) before I was diagnosed eight years ago - and how serious the effects can and will be if I don't keep my diabetes under control.

Perhaps an alternative question could be, "Is diabetes a disability?". Clearly legally it can count as a disability in all kinds of ways (such as people with diabetes in England getting free NHS prescriptions) and certainly can lead on to issues such as blindness and loss of limbs that most people would regard as disabilities, notwithstanding what the Paralympics have shown that some people can achieve even with such disabilities.

I don't regard my diabetes as 'disabling' me, partly because it's comparatively easy for me to avoid it dominating my life - and also because there isn't the (same degree of) societal stigma that there still is unfortunately for wheelchair users ("Does he take sugar"). However, from reading other people's accounts on this forum, it wouldn't surprise me if some people do consider their diabetes to be a disability as well as (or instead of) an illness.
 
victorhamesse said:
I don't have the energy and stamina that I had 10 years ago, mostly due (IMO) to my body not having the reservoir of glucose/glycogen it used to have (by deliberate management actions on my part).
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I honestly can't tell. I was diagnosed long ago, when I was 15. Now I'm somewhat older I'm rather heavier and have less energy and stamina; on the other hand last night I was dancing for most of 3 and a half hours, I think reasonably well for all of it.
victorhamesse said:
Mind you I'm also well into what could be called old age now.
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That's how I feel. I'm not 15 any more, but I'm not doing too badly for my age. I could do with losing some weight, but I'm far from alone in that.
 
Bruce Stephens said:
I honestly can't tell. I was diagnosed long ago, when I was 15. Now I'm somewhat older I'm rather heavier and have less energy and stamina; on the other hand last night I was dancing for most of 3 and a half hours, I think reasonably well for all of it.

That's how I feel. I'm not 15 any more, but I'm not doing too badly for my age. I could do with losing some weight, but I'm far from alone in that.
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It's so difficult to tell, isn't it? I'm in my early 60s and was diagnosed with LADA eight years ago. Looking back, before I was diagnosed I tired much more easily and quickly than expected for a man of my then age and fitness level. Now, I sometimes feel frustrated that I can't do what I could do when I was younger - but how much of that is 'normal' ageing and how much of it is my diabetes? We'd need an enormous study with appropriate control groups to know the answer! Also, of course, perhaps my diabetes means that I look after my health better than I'd have been doing at my age if I hadn't developed diabetes.
 
CliffH said:
Also, of course, perhaps my diabetes means that I look after my health better than I'd have been doing at my age if I hadn't developed diabetes.
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Yes it’s interesting how many members report that their diagnosis with diabetes became a catalyst for positive change and a move towards a healthier way of living (perhaps changes they they had intended to make for years, but never quite got around to).

Some say they haven’t felt so ‘well’ and energised for a long long time, and that various other aches, pains and bothersome things have more or less disappeared since!
 
everydayupsanddowns said:
Yes it’s interesting how many members report that their diagnosis with diabetes became a catalyst for positive change and a move towards a healthier way of living (perhaps changes they they had intended to make for years, but never quite got around to).

Some say they haven’t felt so ‘well’ and energised for a long long time, and that various other aches, pains and bothersome things have more or less disappeared since!
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A very good point: certainly for me (as a man in his 50s when I was diagnosed) it reminded me that, even though I was fit for a man of my age at the time, we can't take our health for granted - especially as we approach old age.
 
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