Posting on behalf of my wife

[atkinsd38]

My wife is 37, diagnosed t1 at 30.

She uses Libre 2 CGM. Today at her check up her hbac1 was 8, up from 7, and kidney function 76 from 90. Are these figures something I should really worry about?

I'm also keen to find out more about the closed loop technology and any updates anyone has on that and who will be able to get it. She currently doesn't use a pump.

Hope you are all ok.

KR

 

[Bruce Stephens]

Today at her check up her hbac1 was 8, up from 7

Presuming that's 8.0% (64 in new units) up from 7.0% (53) then that's significantly worse. (Not a disaster but they'll want to help her lower that.) I've no idea about the kidney function numbers and I gave a couple of links in the technology forum about the HCL question.

 

[rebrascora]

Hi and welcome.

Does your wife have any idea why her HbA1c has gone up? Has it happened since she got Libre? Just wondering if she is chasing the dragon's tail with it because she doesn't understand it's limitations which can be easy to get sucked into. Do you know what her Libre Time in Range is and how much above and below range? That is generally the best guide to how you are doing. HbA1c is a bit "old hat" as it doesn't show the full picture like the Libre TIR.
I wonder if we can help her to improve things if we know what issues she is struggling with. Shared experience here on the forum gives us a much greater insight into getting the best from the technology than many health care professionals can be unaware of. The quirks and limitations of CGM and Libre in particular being a prime example. Most DSNs and consultants don't seem to know about half of them. We have a list of the limitations which @helli put together on the Pumping and Technology section which I will link below...

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

But if you would like to share more info about specific issues she has I am sure between us we can suggest possible solutions to try.

 

[Inka]

If that kidney number is a GFR, then there’s some information here @atkinsd38

About eGFR | The UK Kidney Association

GFR is Glomerular Filtration Rate and it is a key indicator of renal function. eGFR is estimated GFR and is a mathematically derived entity based on a patient’s serum creatinine level, age, sex and race. This is usually calculated by the laboratory analysing the blood sample and reported along...

ukkidney.org

The increase in her HbA1C is a bit worrying. Does she know why? Eg illness, stress, hypo anxiety, etc etc.

What insulins does she use?

 

[Martin.A]

My understanding is that an eGFR above 60 is considered normal provided there is no evidence of kidney disease, so on that basis only an HCP can tell you whether 76 is anything to be concerned about.

 

[atkinsd38]

Hi all. Thanks so much for the helpful replies. My wife runs a busy cafe and is on the go all the time, not that this is an excuse from her perspective. Since the cafe got really busy in the last year her numbers have gone astray. She says having a high alarm on all the time means it constantly goes off at work so she turns her high alarm off. I don't see why and I offer advice but unfortunately it's her dealing with it not me. Is there a snooze button on the alarms we can't see? How do other people deal with the constant alarms? We have both agreed something needs to change.

My understanding is that an eGFR above 60 is considered normal provided there is no evidence of kidney disease, so on that basis only an HCP can tell you whether 76 is anything to be concerned about.

 

[atkinsd38]

And she uses nova rapid but it takes an hour or so so it isn't very rapid she says

 

[Bruce Stephens]

Is there a snooze button on the alarms we can't see?

I don't think so. They can be turned off, and you can change the levels.

How do other people deal with the constant alarms?

I don't find they're constant. My low alarm is set at 4.5 and the high one at 15 (I change the high one now and again: sometimes I set it lower than that and I'm still undecided which I prefer). I also use an unsupported app for the alarms (Juggluco) which vibrates (and vibrates my smartwatch) rather than making an obvious noise, so generally I'm the only person who knows.

Different people are different, obviously, so I'm not saying your wife is wrong (or doing anything wrong). It's known that women have (on average) poorer control than men, for example, presumably because of metabolic differences.

And she uses nova rapid but it takes an hour or so so it isn't very rapid she says

That's not uncommon, and does make it better if you can plan ahead before eating. But it sucks because life shouldn't involve that amount of planning just for lunch. There are a couple of faster acting insulins, so perhaps she could try one of those.

Overall it feels like she might benefit from talking over the problems with a member of the hospital team who can not only suggest things we might think of, but look at her medical details and actually offer things (and suggest things we hadn't thought of).

 

[Inka]

Hi all. Thanks so much for the helpful replies. My wife runs a busy cafe and is on the go all the time, not that this is an excuse from her perspective. Since the cafe got really busy in the last year her numbers have gone astray. She says having a high alarm on all the time means it constantly goes off at work so she turns her high alarm off. I don't see why and I offer advice but unfortunately it's her dealing with it not me. Is there a snooze button on the alarms we can't see? How do other people deal with the constant alarms? We have both agreed something needs to change.

It’s hard to keep good control when you’re very busy. It might also mean she’s eating at odd times. I worked in a cafe for a while and had to have my lunch late afternoon.

She could raise her high alarm, but that would mean she might be running high for ages and not realise. If she has a busy, erratic schedule a pump might suit her well.

 

[everydayupsanddowns]

Welcome to the forum @atkinsd38

Sorry to hear your wife’s busy schedule is making it harder to accommodate the demands of her diabetes.

Hope she can find ways to avoid the highs happening (without risking hypos) rather than having to wait for corrections to bring them down - which can take an infuriatingly long time!

My experience of closed loop is that mine isn’t really enough to tackle larger wobbles - but it really shines at just gently steering the little gentle drifts.

 

[atkinsd38]

Thanks Mike.