Hgb A1C

[Ponda]

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. The NICE guidelines suggest 5-7 upon waking, and 4-7 before meals, which I use as a guideline for my daily control. 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.

 

[Juicyj]

Hello @Ponda

It's great to achieve a good HbA1c however 'time in range or TIR' should be taken into account too, this is a better indication of control as you could be wildly swinging high low to achieve a good HbA1c, how do you monitor your levels and do have access to graphs showing TIR to keep them off your back ?
I've had the same conversation in the past and just let it flow over my head, I know the work involved to achieve this level of control but they don't so as long as your happy with this then try not to take their words to heart.

 

[Ponda]

Hello @Ponda

It's great to achieve a good HbA1c however 'time in range or TIR' should be taken into account too, this is a better indication of control as you could be wildly swinging high low to achieve a good HbA1c, how do you monitor your levels and do have access to graphs showing TIR to keep them off your back ?
I've had the same conversation in the past and just let it flow over my head, I know the work involved to achieve this level of control but they don't so as long as your happy with this then try not to take their words to heart.

Thank you for the reply, Juicyj. Yes, I understand about that, about the high and low swings making a good A1C. But I send my Libre 2 graphs to them, and it makes no difference. It's just every single time I get an A1C, I get these same sorts of worried conversations.

 

[EllieM]

Do you have a table that shows the amount of time you spend under 4? Those graphs suggest it's no time at all? As someone who loses hypo awareness if I have too many hypos, I can see their point, but only if you are actually having hypos. You don't appear to be having them?

I'm in awe and envy of your graphs

 

[Ponda]

Do you have a table that shows the amount of time you spend under 4? Those graphs suggest it's no time at all? As someone who loses hypo awareness if I have too many hypos, I can see their point, but only if you are actually having hypos. You don't appear to be having them?

I'm in awe and envy of your graphs

Thank you, EllieM. These two graphs are what they happened to look like the week I got my A1C results back, so those are the ones I sent in to the GP. I do have some lows, and they sometimes even happen enough to show up on my graph, but very rarely do I stay low for very long. I eat my evening meal around 5 pm, and rarely eat anything else afterwards, so by the time I go to bed, I'm generally pretty stable. I check my Libre a lot (for the past 7 days, I just checked, it is 163 times so far, averaging 23 scans a day) to catch the lows as they're happening and so try to correct it before it goes into the red. I understand their concern about losing hypo awareness with too many hypos, as you say. But I cherish my hypo awareness, I even tell them that, and don't want to jeopardise it. It's almost like they think that because my A1C are so good, that I must be doing something wrong, although I show them proof that I'm just being vigilant. Frustrating. Can you offer any suggestions for me to talk with them, so all of us can be on the same page ?

 

[EllieM]

Thank you, EllieM. These two graphs are what they happened to look like the week I got my A1C results back, so those are the ones I sent in to the GP. I do have some lows, and they sometimes even happen enough to show up on my graph, but very rarely do I stay low for very long. I eat my evening meal around 5 pm, and rarely eat anything else afterwards, so by the time I go to bed, I'm generally pretty stable. I check my Libre a lot (for the past 7 days, I just checked, it is 163 times so far, averaging 23 scans a day) to catch the lows as they're happening and so try to correct it before it goes into the red. I understand their concern about losing hypo awareness with too many hypos, as you say. But I cherish my hypo awareness, I even tell them that, and don't want to jeopardise it. It's almost like they think that because my A1C are so good, that I must be doing something wrong, although I show them proof that I'm just being vigilant. Frustrating. Can you offer any suggestions for me to talk with them, so all of us can be on the same page ?

Hmm, just waded through much of the NICE guidelines for T1s

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

(That's assuming, possibly incorrectly, that you are in the UK).

There doesn't seem to have a lower limit for hba1c, though they do mention concerns about hypos. My guess is that they are worried about night time hypos. The libre isn't 100% reliable at warning people about hypos so maybe that is the issue? I think I would ask them for a link to where it states that an hba1c of 39 is a concern if the person is not going hypo? But I've read quite a few threads from people in your position, it almost seems like the doctors refuse to believe the data from the cgms???

Have some virtual hugs from me.

 

[Ponda]

Hmm, just waded through much of the NICE guidelines for T1s

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

(That's assuming, possibly incorrectly, that you are in the UK).

There doesn't seem to have a lower limit for hba1c, though they do mention concerns about hypos. My guess is that they are worried about night time hypos. The libre isn't 100% reliable at warning people about hypos so maybe that is the issue? I think I would ask them for a link to where it states that an hba1c of 39 is a concern if the person is not going hypo? But I've read quite a few threads from people in your position, it almost seems like the doctors refuse to believe the data from the cgms???

Have some virtual hugs from me.

Hello EllieM. Thank you so much! Virtual hugs back to you. Yes, I'm in the UK. Yes, the more I think about it, I think that you're right in saying it almost seems like the docs refuse to believe the data from the cgms. And I think they have a number in their head where a diabetic should be, and I'm below that number. Since talking with my GP yesterday, I've been thinking a lot about it. I was a critical care nurse for 37 years, plus my ex- husband was Type 1. When I became LADA 2 years ago, I already had a good baseline knowledge about diabetes and how to manage it. But as you well know, living with Type 1 day to day is a whole other thing. I easily admit that I've doubled my knowledge since becoming diabetic. So, I do wonder if the medical people have guidelines they go by, and they stick to what they know. IDK. I think medical people are like all humans; our understanding of what we learn varies a lot. But I fully admit that maybe there's something I'm missing in this puzzle. So I thought this morning to ask to attend a DAFNE course. They were on hold when I became LADA during Covid, and I never went to one.

 

[oldgreymare]

@Ponda @EllieM , You may be interested in the attached clinical recommendations paper. I can't remember where I sourced it from, so this is my saved copy. It gives targets for TIR and how these may relate to HbAC1 / AGP estimates. Ideally your diabetes clinic should know about this paper, but I doubt that it will be known by many GPs.

Speaking with my endo, he has mentioned that his first concern is always how much time below range (TBR) his patients experience especially elderly and longstanding Type 1s, before considering overall TIR and HbAC1 results. TBR should be under 4%, reducing to under 1% for elderly /hypo unaware T1s. My latest TBR was 7%, (mostly night time lows) so we spent a lot of time discussing this.

Hope this gives you some additional info to discuss with your care team.

 

[Ponda]

@Ponda @EllieM , You may be interested in the attached clinical recommendations paper. I can't remember where I sourced it from, so this is my saved copy. It gives targets for TIR and how these may relate to HbAC1 / AGP estimates. Ideally your diabetes clinic should know about this paper, but I doubt that it will be known by many GPs.

Speaking with my endo, he has mentioned that his first concern is always how much time below range (TBR) his patients experience especially elderly and longstanding Type 1s, before considering overall TIR and HbAC1 results. TBR should be under 4%, reducing to under 1% for elderly /hypo unaware T1s. My latest TBR was 7%, (mostly night time lows) so we spent a lot of time discussing this.

Hope this gives you some additional info to discuss with your care team.

Hello oldgreymare. Thank you for the response, and for the Best Practice paper. I read every page. Excellent article, and very enlightening. Attached is a screen shot of my TIR, and my average glucose over the last 90 days. Please note I've set my TIR between 4-9. Normally my TAR and TBR are better than this, 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 get back to what I normally run.) I will have a think on how to do it, but I'd like to politely share this article with the diabetes nurse at my Surgery, with the hope of all of us eventually being on the same page.

PS. I've been LADA a little over 2 years now, but before that, have always been healthy and active.

 

[EllieM]

Speaking from personal experience, my periods of low blood sugars have definitely coincided with reduced hypo awareness and some scary ambulance call worthy hypos. So I can understand why doctors are concerned by low hba1cs,

The advent of cgms means that you can greatly reduce the number and duration of hypos though. But hypo awareness is definitely something to be treasured so maybe negotiate on reducing down that 4% of less than 4???

 

[Ponda]

But hypo awareness is definitely something to be treasured so maybe negotiate on reducing down that 4% of less than 4???

I'm unclear what you're saying? ".... reducing down that 4% of less than 4..." ?

 

[EllieM]

I'm unclear what you're saying? ".... reducing down that 4% of less than 4..." ?

Your TIR reading has you as below 4mmol/L 4% of the time. Maybe say that you will try to reduce that % ?

EDited to add. Let me be clear here, I am still in major envy of your readings

 

[Ponda]

Your TIR reading has you as below 4mmol/L 4% of the time. Maybe say that you will try to reduce that % ?

Totally agree. It's only been like that recently because I've been eating too many bites of Christmas sweets. I've had a polite conversation with myself to STOP IT. It's already starting to improve.

EDited to add. Let me be clear here, I am still in major envy of your readings

Thank you.

 

[Circuspony]

I wonder how much of the concern about low hba1c results predates Libra? My best hba1c was when I was having cracking hypos so in that instance I get where they're coming from (& all improved on Tresiba) but with the Libra you know when you're falling / rising and can take preventative action

 

[Ponda]

I wonder how much of the concern about low hba1c results predates Libra? My best hba1c was when I was having cracking hypos so in that instance I get where they're coming from (& all improved on Tresiba) but with the Libra you know when you're falling / rising and can take preventative action

You're exactly right, Circuspony. I totally agree. I check my Libre all the time so I know what it's doing, and try to treat a low before it gets too low. I've never had a low which was so bad I couldn't take care of myself.

 

[jonathan183]

We do not know all the consequences of blood glucose of below 4 mmol/l, including how much it impacts individuals. Loss of hypo awareness is one known impact ... unfortunately that may not be the only effect. It is probably worth doing some finger prick tests when your cgm reports less than 4mmol/l to determine if it is a genuine low or cgm best guess ...

 

[Ponda]

We do not know all the consequences of blood glucose of below 4 mmol/l, including how much it impacts individuals. Loss of hypo awareness is one known impact ... unfortunately that may not be the only effect. It is probably worth doing some finger prick tests when your cgm reports less than 4mmol/l to determine if it is a genuine low or cgm best guess ...

Thank you, jonathan183. I cherish my hypo awareness, and hope it never goes away. I do do occasional finger pricks when I get a reading which doesn't make sense, or if I want to verify a number I see on my Libre.

 

[oldgreymare]

Hi @Ponda, Very pleased that you found the clinical recommendations paper useful. Plus I'm another in awe of how well you're controlling your BGs, even in a period you say you're slacking off! I think to take your conversation forward with your care team, focus on TBR readings - confirm as often as possible with finger pricks so its not about CGM use... If you can show that you really do have great HbAc1s with good hypo awareness, but without excessive hypos, you may just get a break through with you HCP team.

 

[Ponda]

Very pleased that you found the clinical recommendations paper useful. Plus I'm another in awe of how well you're controlling your BGs, even in a period you say you're slacking off!

Thank you.

I think to take your conversation forward with your care team, focus on TBR readings - confirm as often as possible with finger pricks so its not about CGM use... If you can show that you really do have great HbAc1s with good hypo awareness, but without excessive hypos, you may just get a break through with you HCP team.

I'll up the number of finger pricks I do when it's low. I did a whole load of them yesterday, and consistently, my blood sugar was higher than my Libre readings.