A1C

[pondita]

Hello all. My last three HgbA1C was 41, 42, and 39. I'm doing my happy dance because my hard work and vigilant BS control is paying off. But it's making my GP and my endocrinologist nervous. I send them my graphs (range 4-9). I do random ketone checks, which are always fine. I am fully hypo aware at 4-ish. I love carbs and eat them every day (although in much smaller portions than before my diabetes days!). They both want me to take less of my Lantus, even though I tell them at my current dose, my basal tests are flat or slightly elevating. I say I'm using the NICE guidelines for my daily control, which suggest 5-7 upon waking, and 4-7 before meals. IDK what to do. I feel like I'm not on the same page as my medical caregivers. Every time I get an A1C, we have these same sorts of conversations. Ideas? Am I not doing the right thing with my control, because they say I'm not? They seem to think that because of my tight control, I'm going to have an unexpected low and pass out. They say they want my A1C to be higher, full stop. I appreciate your thoughts, and thank you in advance.

 

[Bruce Stephens]

What does Libre estimate for your HbA1c? (If its estimate is higher than 39 that might suggest it's reading a bit high for you, meaning you're hypo more than Libre suggests.)

What do the Time in Range figures look like? (Specifically, the percentage of time under 3.9.)

I agree your graphs look fine, but I'm sure you understand the concern: low HbA1c is quite often a sign of being a bit too low. Not always, and especially not always with someone who's working really hard at it (which has risks in itself). And I'm sure some people who're looping might get to those sorts of figures safely but you're on MDI.

 

[Tdm]

Well done!
I too have been told to raise my a1c. Attached is my 90 graph, that they don't like. I'm possibly in honeymoon period.
No pleasing some folk.
If you don't have hypos, not sure what their concern is, with the proviso you don't keep chasing a low a1c. Anything taken to extremes is bad.
Time in range is perhaps more important.

 

[pondita]

What does Libre estimate for your HbA1c? (If its estimate is higher than 39 that might suggest it's reading a bit high for you, meaning you're hypo more than Libre suggests.)

What do the Time in Range figures look like? (Specifically, the percentage of time under 3.9.)

I agree your graphs look fine, but I'm sure you understand the concern: low HbA1c is quite often a sign of being a bit too low. Not always, and especially not always with someone who's working really hard at it (which has risks in itself). And I'm sure some people who're looping might get to those sorts of figures safely but you're on MDI.

HI Bruce. Thank you for your reply. Right now, my Libre is estimating my A1C to be 41. But I've been enjoying a few too many bites of Christmas sweets lately (to which I've politely told myself to STOP IT. 🙂 My numbers should improve.)

Attached is my TIR for the last 90 days. Please note I've put my TIR as 4-9.

I'm curious to know what you meant by "... not always with someone who's working really hard at it (which has risks in itself)." What are the risks ?

 

[Bruce Stephens]

Thank you for your reply. Right now, my Libre is estimating my A1C to be 41. But I've been enjoying a few too many bites of Christmas sweets lately (to which I've politely told myself to STOP IT. 🙂 My numbers should improve.)

So it's probably pretty accurate.

Attached is my TIR for the last 90 days. Please note I've put my TIR as 4-9.

The TIR looks good to me, though 3% under 3.9 isn't brilliant it's within the recommended percentage.

I'm curious to know what you meant by "... not always with someone who's working really hard at it (which has risks in itself)." What are the risks ?

The risk is burnout. Are you paying so much attention to keeping in range that it's crowding out other parts of life, perhaps ending with you just being fed up with managing this condition? Remember it's a marathon (well, hopefully more a long walk) rather than a sprint.

 

[pondita]

Well done!
I too have been told to raise my a1c. Attached is my 90 graph, that they don't like. I'm possibly in honeymoon period.
No pleasing some folk.
If you don't have hypos, not sure what their concern is, with the proviso you don't keep chasing a low a1c. Anything taken to extremes is bad.
Time in range is perhaps more important.

Wow, well done you ! A1C of 37. I've known other Type 1's with an A1C in your range, and all I want to do is emulate them ! LOL It looks like you've set your TIR targets as 4-8, right?

Are you planning to raise your A1C? Your graphs don't show your going low. Do you have any TBR?

I agree, if you're not having hypos, I don't know what their concern is. I asked my GP that yesterday, and his response is that with my tight control, they're afraid I'll have hypos and be unable to take care of myself. That logic just doesn't make sense to my wee brain. 🙂

 

[Bruce Stephens]

I agree, if you're not having hypos, I don't know what their concern is.

Yes, I agree completely. There is a risk that if we're lowish too much of the time that we do lose hypo awareness, but I think it'll turn out that with continuous monitoring it's practical to have a lower HbA1c without that happening even without a pump. I suspect the experience is based quite a bit on finger prick tests and the last generation of insulins.

 

[pondita]

The TIR looks good to me, though 3% under 3.9 isn't brilliant it's within the recommended percentage.

Agree. The problem is current, and due to too many Christmas sweets.

The risk is burnout. Are you paying so much attention to keeping in range that it's crowding out other parts of life, perhaps ending with you just being fed up with managing this condition? Remember it's a marathon (well, hopefully more a long walk) rather than a sprint.

Ah, I see, and agree. Usually, day to day, I'm ok with it all. It's become habit. Some days, it is totally a real pain, and I miss my Islets working on their own. And even in rare moments, it makes me really angry. But the motivation for me is this: I was 60 when I became Type 1. I'd always been healthy and fit, so I know how that feels. When I'm high or low, I really dislike how I feel. I don't feel good. So feeling good, feeling like "me", is worth all the work.

 

[pondita]

Yes, I agree completely. There is a risk that if we're lowish too much of the time that we do lose hypo awareness, but I think it'll turn out that with continuous monitoring it's practical to have a lower HbA1c without that happening even without a pump. I suspect the experience is based quite a bit on finger prick tests and the last generation of insulins.

Yes, agree. I cherish my hypo awareness, and tell them so. I don't want to jeopardise having it. I suspect you're totally on the mark about experience being based on finger prick tests and the last generation of insulins. I understand that changes in thinking and practice take time to implement; the wheels turn slowly sometimes.

 

[Bruce Stephens]

I understand that changes in thinking and practice take time to implement; the wheels turn slowly sometimes.

And (for a while now) things have moved more with proper evidence as well as clinical experience. And as I understand it the evidence is that lowering HbA1c from (say) 70 (the figure for recommending a pump is currently 69) down to 48-53ish is a really big win in terms of reducing complication risks, but below that isn't nearly as significant.

So I'm sure 48 is somewhat arbitrary (as a target many people ought to be able to reach without too much fiddling or risk of hypos) but there's also a strong element of it being a really good target to aim for. (Though HbA1c has never felt like a good way to approach management, so I'm really glad we have continuous monitoring and can more use time in range measures which really are useful day to day.)

Similarly with the TIR target of over 70% in 3.9-10.0 (though I presume there's less evidence for that beyond translating to HbA1c and using that evidence). I try and get well over 70%, but mostly because I just feel better when I'm in target (or just a little over) so I try and maximise that.

 

[Benny G]

The libre graphs show that your levels are excellent. I believe the Dr's are considering other models. As you are an older diabetic the Drs allow a higher Hba1c to try to prevent hypos. Raising the hba1c can help balance the risk of hypos against long term complications. Personally, hypos have caused me several injuries on separate occasions over the years: I have broken my nose; my lower jaw; and also broke a rib falling out of bed. These things can and do happen.
Hospitalisation is twice as likely for diabetic people, so there is always a balance for the Dr.

 

[Tdm]

The libre graphs show that your levels are excellent. I believe the Dr's are considering other models. As you are an older diabetic the Drs allow a higher Hba1c to try to prevent hypos. Raising the hba1c can help balance the risk of hypos against long term complications. Personally, hypos have caused me several injuries on separate occasions over the years: I have broken my nose; my lower jaw; and also broke a rib falling out of bed. These things can and do happen.
Hospitalisation is twice as likely for diabetic people, so there is always a balance for the Dr.

The risk of burnout needs to be weighted against the morale boost of having acheived good control.
Ironically, diabetes professionals can demotivate people who are doing well with their negative attitude.
Of course, we should be controlling our levels for ourselves, but would it really hurt them so much to be happy for us from time to time?

 

[pondita]

And (for a while now) things have moved more with proper evidence as well as clinical experience.

Glad to hear.

Though HbA1c has never felt like a good way to approach management, so I'm really glad we have continuous monitoring and can more use time in range measures which really are useful day to day.

I became a nurse in the early 1980's, long before A1C was in use. I've now silently apologised to my former patients, but know that we just didn't know. The advent of A1C testing revolutionised diabetes control, full stop; I remember the awe I felt when it came into being. Now practice has moved beyond A1C into CGMs, which allows even better understanding and tighter controls.

I just feel better when I'm in target (or just a little over) so I try and maximise that.

Me too. 🙂 Thank you, I have enjoyed our conversation.

 

[pondita]

As you are an older diabetic the Drs allow a higher Hba1c to try to prevent hypos.

The thing that stumps me is that just having a higher HbA1C doesn't mean you won't have hypos. A higher A1C doesn't prevent them. It's just based on an assumption that if you have a higher A1C, you have less hypos. Which may or may not be true.

Personally, hypos have caused me several injuries on separate occasions over the years: I have broken my nose; my lower jaw; and also broke a rib falling out of bed. These things can and do happen.

Sigh. I feel for you, and it's a very real complication of diabetes.

 

[pondita]

The risk of burnout needs to be weighted against the morale boost of having acheived good control.
Ironically, diabetes professionals can demotivate people who are doing well with their negative attitude.
Of course, we should be controlling our levels for ourselves, but would it really hurt them so much to be happy for us from time to time?

:-D So agree! Like I said in my original post, I'm doing my happy dance, and they're look at me with consternation. As a former critical care nurse, I get it; so many Type 1's understandably struggle to get "good" numbers, that the diabetes professionals are used to being strict. An outlier is confusing. But I want them to be happy with me, I want them to not worry about me. So that's why I posted this in Forum. When I was a nurse, I was taught, and really tried to, create similar goals with my patients. I would just love it if my health care providers would be on the same page as me.

 

[pondita]

Just to follow up. A big part of the mystery has been solved. 🙂

I spoke with my GP's diabetes nurse this last week. I was amazed when she told me that they don't look at Libre data, and do not have access to it ! That they base their recommendations to their diabetic patients solely on the HgbA1C. She said with my A1C around 40, that I have by far the lowest HgbA1C in their practice. She said they're happy when their other diabetics get an A1C in the 50's. And so they believe that the only way I can get an A1C of 40 is to have lots of lows. So of course they were worried about me, and wanted my A1C higher. We talked a lot about A1C data, and I showed her my Libre data, my TIR, my graphs. She seems a bit more understanding and supportive. Time will tell. Do your Surgery based diabetes nurses have access to your Libre data?

I also talked with my endocrinologist last Friday. We had some very frank discussions. He was very happy with my TIR, and my 1-2% TBR. He said he would assure the GP practice that I'm on the right track, and that I have excellent control, but I just received his follow up letter and he mentions none of that. 🙄

 

[Thebearcametoo]

That’s good that you have some clarity now about their worries. If it’s manageable for you and you’re not having lots of hypos then it’s great but you also know you can relax a little about what you eat if you want to and still have excellent results. On the pump and dexcom my kid is mostly low 40s and I suspect as more people move onto sensors it’ll mean more people are able to have safer low HBA1C.