Just found out my HbA1c results over the past decade were much worse than I remember

[RobertJ]

I had a strange experience at the clinic today. The doctor was looking at my recent Libre data showing my average glucose of 7.4 and estimated HbA1C of about 47. She seemed a bit underwhelmed by these results and said I was going low too often. So that was a bit of an anti-climax.

Then we got onto past HbA1c results. I had this idea I've spent most of the last twenty years in the 53-57 range but apparently I've been much worse than that.

She only had data going back to 2011 but the best reading was 56 and the worst was 71. It seems that the clinic were not overt enough about how bad this was. Believe it or not, I've always taken it seriously. I've just taken it seriously and still had bad control.

As I've mentioned elsewhere on here, I ramped everything up last summer and have never gone far wrong since then. But these results were a total shock. It was like someone else's results got swapped with mine. I had no idea I'd been above the fifties, let alone all the way up to 71. I was close to tears in front of this very emotionless doctor and thought I'd have to ask her to cuddle me.

I don't really know how to process this. I don't have complications yet, apart from background retinopathy. I don't have nerve issues, I don't have kidney problems, I don't have abnormal blood pressure and I don't have erectile dysfunction. But it seems I've spent my adult life mainly with dreadful control.

This brings me back to the topic of a thread I made a few months ago. I'm not sure the NHS holds people to high enough standards. My results should have been treated like a medical emergency but instead I thought I was basically doing okay with a bit of room for improvement. I'm not asking any questions here, but I just have to share such a shocking discovery because my non-diabetic friends would not be able to empathise with this properly.

 

[Rokaab]

My results should have been treated like a medical emergency but instead I thought I was basically doing okay with a bit of room for improvement

Do remember though that until recently and the introduction of things like the libre it was a lot lot lot more difficult to see what was actually going on, and for many getting levels even close to 50 may have led to lots of hypos just due to lack of real-time data, so I suspect many docs would not try to get you to said lower values

Before the libre I had results in the low 50's only twice (between 1991 and 2016) - and those would've been pure luck rather than anything else (or time when I was having big hypo issues - I cant remember) my GSCE year was 74, my A-Level year was 92 ........
My control suddenly got a lot lot lot better with the real-time info provided by said libre, before then it was dangerous for me to be that low

 

[RobertJ]

Do remember though that until recently and the introduction of things like the libre it was a lot lot lot more difficult to see what was actually going on, and for many getting levels even close to 50 may have led to lots of hypos just due to lack of real-time data, so I suspect many docs would not try to get you to said lower values

Before the libre I had results in the low 50's only twice (between 1991 and 2016) - and those would've been pure luck rather than anything else (or time when I was having big hypo issues - I cant remember) my GSCE year was 74, my A-Level year was 92 ........
My control suddenly got a lot lot lot better with the real-time info provided by said libre, before then it was dangerous for me to be that low

I see, so it sounds like your results followed a similar trajectory to mine? When you were in your teens and twenties did you take it seriously though?

When I discuss past bad results with friends they always say "But you've always taken it seriously haven't you?" So it seems like I took it seriously but was just terrible at figuring out what to do.

 

[Juicyj]

Sorry to hear about today @RobertJ it was the shock of hearing this that's hit you so hard, but from one t1d to another, that's just a result, and I have a saying each time I get one... next.. literally, my last one was 53 which was up on the previous one and also discovered 2 weeks ago i've got background too, never got a letter after last test and had to ring them up to find this out. I know at the time it was a bit of a blow, we can't help but take it personally as there's only one of us in the driving seat, but please do not let it get to you, I personally don't think mine was too bad, most of mine pre pump/cgm were in the 60/70's.

Look all we can do each day apart from attempting to live a normal life like everyone else is just do our best, that's it but don't judge it on a number, just focus on what you can do each day to keep it in check.

 

[Rokaab]

I see, so it sounds like your results followed a similar trajectory to mine? When you were in your teens and twenties did you take it seriously though?

Because it was so hard to see what what actually going on - and the blood test things being like torture devices no I probably didn't, nothing I did seemed to make any useful difference anyway, so it was difficult to even try to make it better when nothing worked so I probably just didn't care - I did take my insulin all the time but I'm guessing it probably wasn't the right amount

Mine was always classed as either brittle or badly controlled (uncontrollable was my view on it) - and in fact when I eventually got the sensors I could see the overnight adventures (adventures is the very polite way of putting it) of my sugar level - I'd have never known that without sensors

 

[Hopeful34]

. It was like someone else's results got swapped with mine.

It's probably not the case, but I'd check this didn't happen, as I was once told at the hospital my result was a lot higher than my normal range, and couldn't understand why or how to correct it. I kept saying 'are you sure' and being told it was. The blood results form was put on the desk, and I looked at it, and it was someone with the same name, but different date of birth!!

 

[RobertJ]

Because it was so hard to see what what actually going on - and the blood test things being like torture devices no I probably didn't, nothing I did seemed to make any useful difference anyway, so it was difficult to even try to make it better when nothing worked so I probably just didn't care - I did take my insulin all the time but I'm guessing it probably wasn't the right amount

Mine was always classed as either brittle or badly controlled (uncontrollable was my view on it) - and in fact when I eventually got the sensors I could see the overnight adventures (adventures is the very polite way of putting it) of my sugar level - I'd have never known that without sensors

I always struggled with the night times before I got the Libre, and even afterwards at times.

What's weird, though, is that over the years I've definitely had appointments where the doctor has told me I'm doing well and said thing like "I don't think we need to change anything." Yet, having seen a list of probably eight HbA1c readings between 2011 and 2021, most of them are awful. I am still in state of disbelief more than anything.

 

[Nicola M]

I've always read online that the "ideal" HbA1c is below 48 or 6.5% and as far as I can remember growing up mine was always in the 55-60 range, I mean I was a child -> young adult at that point and CGM's/Pumps weren't a thing but I was always told my HbA1c was good and nothing really ever changed with my insulin needs. My worst Hba1c was a couple of years ago now at 78 and my most recent few have both been below 50 which is the lowest I've ever seen but that wouldn't have been possible I don't believe without a Pump/CGM combination. I have retinopathy in both eyes that currently doesn't need treatment but both myself and my team believe that's because my HbA1c dropped by 30+ points in a short period of time.

 

[Dexta]

I don't really know how to process this. I don't have complications yet, apart from background retinopathy. I don't have nerve issues, I don't have kidney problems, I don't have abnormal blood pressure and I don't have erectile dysfunction. But it seems I've spent my adult life mainly with dreadful control.

I can really appreciate your shock at seeing your previous results - but thinking positively you appear to have only encountered background retinopathy which could have developed regardless of those results.

I too have had background retinopathy for several years which concerned me.
Although my results may not have been similar to yours the technology (CGM) in my case has helped to keep this in the background.

I would like to think that your prospects are now much better than ever before.

 

[Deleted member 527103]

Whilst I can understand your shock hearing your past results, they can't be changed.
You are doing great things now so focus on that and minimizing the future risk. The past cannot be changed

 

[RobertJ]

Thank you for these kind replies. I suppose it's somewhat reassuring to know that other people had quite a high HBA1C before the Libre days, although that doesn't make it any more healthy.

It's just a shame that after getting the Libre in June 2016 I didn't get better. I could have ramped everything up seven years ago rather than one year ago. Here are my last five HBA1C results:

60mmol/mol 13/01/20
60mmol/mol 29/03/21
55mmol/mol 22/11/21
59mmol/mol 24/05/22
50mmol/mol 20/03/23

 

[Juicyj]

Thank you for these kind replies. I suppose it's somewhat reassuring to know that other people had quite a high HBA1C before the Libre days, although that doesn't make it any more healthy.

It's just a shame that after getting the Libre in June 2016 I didn't get better. I could have ramped everything up seven years ago rather than one year ago. Here are my last five HBA1C results:

60mmol/mol 13/01/20
60mmol/mol 29/03/21
55mmol/mol 22/11/21
59mmol/mol 24/05/22
50mmol/mol 20/03/23

Tbh Robert, I don't think doctors/consultants were ever too bothered pre libre/dexcom days as long as you were seen to be doing daily BG checks and more than 2-3 daily injections, you were literally left to your own devices unless you screamed for help, the HbA1c was just a confirmation that you were doing insulin regularly, now with CGM's there is a lot more scrutiny as the cost needs to be justified so the reigns have definitely tightened up now, don't dwell on the past just focus on doing what your doing and the future will be what it will be.

 

[RobertJ]

Tbh Robert, I don't think doctors/consultants were ever too bothered pre libre/dexcom days as long as you were seen to be doing daily BG checks and more than 2-3 daily injections, you were literally left to your own devices unless you screamed for help, the HbA1c was just a confirmation that you were doing insulin regularly, now with CGM's there is a lot more scrutiny as the cost needs to be justified so the reigns have definitely tightened up now, don't dwell on the past just focus on doing what your doing and the future will be what it will be.

I think that's probably right. I was looking over past appointment letters from 2016 until 2021. They said things like "No action required" despite my HBA1C being 55-60. Given that anything above 53 is the danger zone, and maybe even above 48, they should have told me it wasn't good enough.