Anyone else been told HbA1C is too low??

[StephanieMLW]

Hello all,

I am a recently diagnosed Type 1, and when I had my first consultation post diagnosis I was told my HbA1C when I was in hospital with DKA was 115 😳 (which I think is about 12.5%).

Today I was very excited to get my update HbA1C results back at my 3 month check in with the hospital, and was then told off for it being too low?! It's now at 37 which I think is around 5.5%.

I'm just wondering if anyone else has had a similar experience? My estimated A1C on my Libre 2 is 44/6.2%.

I was put on a Libre within 3 weeks of diagnosis, so my guess here is that I was having much lower BG that I realised in those first 3 weeks? I did have to lower my dose of Lantus (started on 10, now on 4) due to night time hypos, and my hypo awareness isn't good.

If it's not that, would it be a problem to have my HbA1C at that level? The nurse didn't really explain why but was very much telling me this was not okay and too low

 

[Bruce Stephens]

I was put on a Libre within 3 weeks of diagnosis, so my guess here is that I was having much lower BG that I realised in those first 3 weeks? I did have to lower my dose of Lantus (started on 10, now on 4) due to night time hypos, and my hypo awareness isn't good.

If it's not that, would it be a problem to have my HbA1C at that level? The nurse didn't really explain why but was very much telling me this was not okay and too low

That's why: hypos are bad. It's really hard to have low HbA1c without spending a lot of time hypo. Low HbA1c isn't a great way to judge that but I imagine it'll take a while before the better measures from CGMs are trusted. In your case it seems they're both saying the same thing: you really were low for longer than would be recommended.

 

[Tdm]

Me too! I was told i am 'trying too hard'.
I think the worry is you get the how a1c by going hypo which isn't a good idea. In my case I've had 5 mild hypos over 90 days so i don't think thats bad. If you get a good a1c and good time in range with few hypos imho they should be happy for you.
They also implied it was only cos i was in honeymoon period ie not due to my efforts at all.
I think they have to sign a proffesional agreement to always be dissatisfied.

 

[rebrascora]

Hi

Sorry to hear you feel a bit kicked in the teeth after getting what, on the face of it looks like a great result. I think there are a couple of concerns. Firstly, bringing your HbA1c down from 115 to 37 in 3 months will have put your body and particularly your eyes under a lot of strain..... that is a big drop in a short time and could cause damage. Sadly many people are not made aware of this. Hopefully, you have got away with it. Have you had your retinal screening yet and if so, how long a go.
Secondly the old training with DSNs was to discourage patients from getting their HbA1c too low as they likely achieved it by having too many hypos and possibly nocturnal hypos.... as you discovered although this was clearly not your fault but that of whoever decided on your initial doses and perhaps didn't check up on you within a few days and adjust it.
Libre enables tighter control and with less risk of hypos so this concern about low HbA1c results is less relevant now that Libre data can be viewed..... unless of course Libre shows you are having lots of hypos.
Thirdly, maintaining very tight diabetes control can lead to burn out and is hard to maintain long term, so if your HbA1c goes up to 50 next time, you might feel disillusioned or you may feel like there is increased pressure to reduce it again. These mental stresses are a big factor in diabetes management and should not be played down.

If it helps any, I just got my lowest HbA1c after 3.5 years and it was 45. I was thrilled with it but I spent a bit too much time in the red to achieve it and I agreed with my consultant that I needed to relax my tight control a bit and perhaps aim for about 50, which he would be extremely happy with. As with everything diabetes related, it is a balancing act, finding a level which is good and reduces risks of complications but doesn't risk hypos and loss of hypo awareness, which is your ultimate life saver for if the technology fails. I imagine they will be concerned about you having lost some hypo awareness at such a young age and so early in your diagnosis, so aiming for higher levels will be important in trying to restore it.

If your nurse "told you off" then I think she handled it badly. My consultant allowed me to identify the problem and then said how pleased he was that I had said that I needed to aim a bit higher. He didn't tell me off. He allowed me to enjoy my moment of triumph at a low BG but he also allowed me to see how it wasn't ideal without being negative. He just encouraged me to raise it a bit. I think this is what our HCPs should be doing.... encouraging us, not telling us off!

 

[Pumper_Sue]

If it's not that, would it be a problem to have my HbA1C at that level? The nurse didn't really explain why but was very much telling me this was not okay and too low

How the nurse should have phrased it "I'm concerned about your A1c result are you experiencing a lot of hypos"

Which you have admitted too 🙂 So yes it's too low in the context it has been achieved by running far to low. This will improve with practise (the lows)
When I had an A1c in the upper 5's my practise nurse asked if I was achieving the result with too many hypos, which imho was a very valid question.

 

[StephanieMLW]

Thank you all for your responses - these were really helpful. @Tdm it's good to know I'm not alone!

I actually just got a call from the diabetes nurse at my GP surgery, as she had seen the HbA1C result and called me to have a chat about it. Which was SO much more helpful that the conversation than I had with the nurse at the hospital!

She asked lots of questions about my Novorapid dosing, talked about how I don't need to panic if things go high for a little while after meals and recommended that my control doesn't need to be as tight as perhaps I'm aiming for. But she did that all in a very nice helpful way, and gave me some positive encouragement around the things I'm doing right.

@rebrascora that's very interesting what you're saying about the drop and my eyes - I had no idea about that, and neither nurse mentioned it. I had a basic look at the back of my eye done at the opticians when I was first diagnosed - that was because when I first started insulin I woke up the next day and my eyesight had completely blurred, which freaked me out! But it all settled down once my eyes had gotten used to my blood not being full of glucose. I have my first proper retinal screen on Saturday, so that will be interesting to see how that goes. On the hypo front, I think my awareness might be improving, but to be honest it's hard to tell as my Libre alarms are set at 4.3 so I tend to get there first before a hypo. I have had a couple of occasions where I have suddenly felt absolutely dreadful, which has been when I've gone low very very quickly before my Libre could catch up, or once when I accidentally dismissed a low glucose alarm and therefore didn't treat it. I take the feeling dreadful as a sign I do have some hypo awareness hopefully? My Libre is saying I've had 5 low glucose events in 90 days but I'm not sure whether that's considered many. I do think you're right though that I could be someone that burns themselves out by aiming for total perfection - unfortunately that is my nature with most things, but perhaps the novelty will wear off!

 

[Thebearcametoo]

The lowest my kid has had was 42 and there were a lot of hypos for about a month during that period to end up with that. Usually it’s somewhere around 45 on his pump and 48 with injections. Clinic said to us that because diabetes management is a marathon not a sprint it’s generally easier to maintain decent long term control by not managing overly tightly plus lots of hypos isn’t good. I’m glad you had a good chat with the nurse and feel a bit better about how you’re doing. As you’re recently diagnosed it may be that having insulin means your pancreas has been able to rest a bit and is pumping out some of your natural insulin now which may also be a contributing factor.

 

[Benny G]

Hba1c reflects blood glucose level over a 3 month period (Covering the lifespan of red blood cells.) The test is weighted towards the test date.
The Libre shows your time in range, and percentage of time out of range, above and below. This trumps any suspicion that you are having too many hidden hypos to achieve a lower Hba1c. 75% Time in range is considered good control. You are obviously killing it with only 5 hypos in 3 months, well done.
The other side to think about is that you are probably enjoying a great Hba1c due to a generous honeymoon, and that your glucose control will no doubt require more effort to maintain as your beta cells dwindle.

 

[Pumper_Sue]

Libre alarms are set at 4.3 so I tend to get there first before a hypo.

Set it too 5, it's a lot safer that way as you need to remember your libre reading is 15mins behind a finger poke.