HbA1c and Time In Range

As I wrote the title to this blog, I immediately worried about how boring it might be. When you are diagnosed with diabetes, pretty much any type, then numbers and data (hence the image above) quickly become a part of your life. Firstly, I promise that this post will not be examining any numbers in great detail - that would be horrendously dull and you're probably not here to find out what my HbA1c and TIR currently are. If you are, then I'll tweet those numbers especially if they're good ones! 

Shall we start wth HbA1c? You might get yours in a plain number format or a percentage and it gives a reasonable indication of how well things have been going over the last 90 days. Or does it? An average, kind of, number based upon your blood glucose? Hmm. Perhaps if your BG is generally very stable and it's floating around in the happy zone for the majority of the time then your A1c might reflect that you're doing well. What happens if you're having several hypos per day, over treating them, and correcting several hypers per day? Lots of numbers such as 2, 3, 18 and 19 might be on your CGM/Flash/BG Meter and your time in the happy zone might be very infrequent yet your HbA1c might show that you're doing quite well with it's average BG offering. Clearly, you're not and that's why HbA1c alone can't be trusted to give an accurate picture of your diabetes management.

Time in Range seems like a better way of monitoring how well things are going. The picture is more detailed with this data. We can identify problem periods of time and change what we've been doing to reduce those instances. Time in Range data may just be one of the most simple yet brilliantly effective innovations in diabetes care in the last decade. I wonder how many of you have left a diabetes review with your HCP with the news of elevated HbA1c ringing in your ears? "It's too high, you need to get that under 8%... around 7%.... 6.5%?" and you nod and agree and off you trot, back to work or home, with absolutely no idea why your A1c is elevated. Perhaps it was that sandwich? or maybe your entire diet?! Oh no! "Keto, that'll solve it". Well, maybe. 

Time in Range should help to stop the overreacting to HbA1c results. If it's a bit high, all that data can be looked through and if you leave notes on your CGM/Flash device app then it's even easier to identify what might have caused the hyper on that day.  

Can TIR be problematic? 

I'll wager that you've seen a few 100% TIR screenshots on your socials. Maybe you've reached the unicorn zone, too? It's a nice feeling even if it's not really that much better than a 90% or 80% TIR. Of course, 100% doesn't always tell the full story. If your TIR was at 100% over 90 days but your BG was between 8 mmol/l and 10 mmol/l in that period then your A1c would reflect a more sketchier management compared to the incredible management indicated by the 100% alone.

100% over 90 days is likely impossible for most but a high TIR might also indicate inaccurate CGM/Flash readings. I don't know of a single device which hasn't had accuracy questioned or complained about on social media. That includes me, I've made noises about inaccuracies dating back to 2017 and the issue is still a big one, six years later. Artificially inflated TIR might be noticed by a higher than expected HbA1c - just as the fictional blood glucose diaries of old proved, the wrong numbers from BG checks can be picked up when your A1c comes back at 11%  

Also, numbers and targets and TIR can get a little overwhelming for some. Some feel an incredible sense of failure because their Time in Range is 69% and they've read that it needs to be 70% or better. That's such a shame because 69% TIR is probably pretty good! and 1% off your "goal" is such a small amount. 5% is a small amount, so is 10, yet not reaching that target number can deeply affect some.

Also! You're not a number. Your life is wonderfully unique to you and your diabetes will likely reflect just how much time and energy you have to manage it. In the late 1990s, during one of my infrequent diabetes reviews, a consultant decided that it would be motivating for me to know of the previous patient's HbA1c. The guy walked by me on his way out of the building. During my consultation, I found out what his first name is and his last HbA1c result. "X is doing brilliantly, his A1c is..." Can you imagine being offered that information at your next review? There would be uproar on socials and I'd be leading the roaring. In the 90s, I was less concerned but I responded sarcastically (Me! Sarcastic? No!). It left me feeling totally uncared about by that diabetes team. My hurt aside, the guy with the great A1c was also being viewed as a number! What a crap time to be a diabetic. Things are much better now. At least they should be for us all, as diabetes care has evolved hugely.

Back to the subject! It seems to me that HbA1c and TIR can be useful when viewed together. Alone they can be problematic and as much as HCPs and your peers might focus on those numbers, please remember that they are just numbers and not your wonderful unique diabetic self.

Sorry if this post was a bit "numbery" and boring. 

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Oversharing in Diabetes

I remember writing about sharing information, data, stories in diabetes before, probably a year or two ago, and my thoughts on the subject haven't really changed much as we head towards 2023 but a few things have happened which have sparked conversation in the last year.

On the Twitter, I tweeted this about Sharing T1D yesterday. I'm fine with others liking or not liking to share their diabetes information. Health, including diabetes, is a very personal subject and often subjected to stigmatising remarks, bullying and sometimes just generally unhelpful (and often unsolicited) advice. Little wonder that some prefer to not share anything in regards to their own diabetes with the prospect of such negativity. I really understand that, I hid my T1D for a long time because I didn't want to hear the advice or the patronising encouragement or have to explain what it was, what type, do I have to inject... yadda, yadda. It was just so much easier to hide it for the majority of the time and social media is such an easy place to hide. It's easy to have lurker accounts on pretty much every platform, easy to sit back and read rather than joining in the conversations. Hiding and not sharing is a very safe place to be.

There is a safety aspect to consider when sharing, too. Who knows who lurks behind the keyboards of others and what their intentions might be? Only last summer, I was made aware of a prolonged period of stalking and accusational tweets aimed towards me from an Australian advocate account which I'd blocked some 18 months beforehand. Disturbing stuff which took me away from Twitter for a few days to consider my options. Thankfully, that episode came to an end once I'd brought it to public attention but it was shocking and upsetting. It's very easy to upset somebody on social media without trying and those we upset well, they might not have enough sandwiches for a picnic. How do we share but stay safe? There is no simple answer apart from avoid offering personal details to people who you don't know. Sometimes, even that might not be enough if a determined person wants to track you down, find your employer, etc.

So, is it worth it? Yes! I think that offering your story, your experiences, your info can be really helpful to your peers. I imagine that you've read something in regards to diabetes which you've found useful in how you manage your own diabetes. Maybe those words came from somebody living with the same type of diabetes, a person who was willing to share their experiences and information. That's why you should consider sharing your experiences and information! It is the cheapest and easiest way to "pay it forward". Of course, don't make it easy for the sandwich deprived to locate you in person, avoid publicising your phone number and sort code and if an unpleasant encounter does occur then my best advice is to ignore it. You might choose to use the mute function on your chosen platform rather than the block button to minimise the oxygen given to the angry fires. To not give oxygen to the fire has been a long term piece of advice of mine but I'm still guilty of doing the opposite from time to time. I'm only human and the urge to vent can be overwhelming in the face of serious sandwich deprivation. I'll try harder in 2023.

What about the feelings of others when you share? Perhaps you've had a great HbA1c, your best ever, and you hit your socials to spread the news and celebrate your good day. I suspect you'll mostly be met with encouragement and good cheer from your friends and peers. However, you may also be met with words which dissuade you from sharing such info because others might be having a tough time with their A1c or general diabetes management. I have a lot of sympathy for anybody who is struggling with their diabetes, I try to make myself available to anybody who needs to talk through groups, mentoring or just a simple message exchange but the struggles of others should never stop you talking about your own diabetes if you've had a good day or a good result. This condition is relentless and despite the tech advances it will continue to be so for the foreseeable. Little victories need to be celebrated, I find them to be morale boosting, I feel more in control of my diabetes and, when others share their wins, I feel encouraged by them and pleased for my peers.

To not share results or information through fear of upsetting others is a backwards step in peer support. If we were to stop sharing our lived experiences, what worked, what didn't, what hurts, what itches, a great A1c, a dodgy TIR, etc then how do we learn about advances in tech and medicine and care and solutions? Our diabetes team? Yeah - I'm not sure that the closed looping crowd would agree. I wouldn't agree, either. Without reading the experiences of my peers, I wouldn't have discovered Flash, CGM and insulin pump therapy as soon as I did - three things that massively improved my diabetes burden and numbers.

If you do feel negatively about the shared information or experiences of others then I think it might be worthwhile to seek support from different areas, especially if such sharing is becoming overwhelming to you and making your own diabetes burden even worse. 

I am pro-sharing when it comes to diabetes. It is the foundation of peer support, in my opinion and there are very few dangers from tweeting your last A1c result. Oversharing is where the dangers lie, keep your private info protected and remember that fire and oxygen thing.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Incomparable - Oh, We Are Not The Same

 

Isn't it strange when we're told "We're in the same boat"? Not just in relation to Diabetes, but any given situation in life. It seems like such a lazy way to show empathy to me and it always has done. It's a phrase that is thrown around by people who I believe struggle to adequately relate to others and when a similarity happens it becomes their "go to".

Oooft! pretty harsh opening paragraph, sorry. I actually find the use of the phrase to be quite offensive and belittling of my own struggles in life. I relate to the issues Type 1 Diabetics face, of course. Many of which are indeed very similar or as near to being the same as they can be. Many are very, very different.

I think it's good to have an understanding of differences in regards to T1D, primarily because I think it's dangerous to assume we can all reach the same "goals". HbA1c, TIR, hypos per month, etc all have targets. The targets (which have been moved many times during my time with T1D) are considered the best way to live a healthy life with Diabetes. That might be right, who am I to argue? I do think the right approach to setting targets is to make them tailored to each person, taking into account personal circumstances, history, other health matters and frequently experienced problems for Diabetics such as burnout. I believe the engaged HCPs do practice that.

Should we scrap the 6.5% HbA1c and 70% TIR generalised targets and focus on individualised care? 

It's interesting to see an HCP cite an A1c as "A record" for them, on social media. Of course, such a Tweet got the attention it deserved. It did evoke memories of an appointment at Diabetes clinic, many years ago. On this rare visit, at some point in the mid 1990s, my then consultant referred to a different patient by their first name, as the person who he saw before me. Offering an "inspiration" to me, Dr X told me about the previous patient's HbA1c and how long he had been living with T1D & how I should easily achieve the same numbers if I worked harder.

Things have changed, I think. Haven't they? Perhaps not, if an HCP feels the urge to take to Twitter with such exciting news. Perhaps things are better but not entirely? Or maybe I'm being too kind? Certainly, my own experiences in clinic have been vastly improved on those of 25+ years ago.

You're probably reading this because you have Diabetes or you care for somebody with Diabetes. I could ply your eyeballs with inspiration for several paragraphs. You might even feel hopeful because of that. Instead, I'll try to keep it brief: You're never going to be a perfect diabetic. You'll have great days, days when you feel you absolutely own this condition, days when you check your blood glucose and your internal voice screams "Who's the daddy now!?". You'll also have days of despair and everything in-between. If you decide to engage others in Diabetes communities, such as GBDoc, you'll find differences in how others do things, how things work for some but not others, how we're not actually all in the same boat or sailing the same seas. We're not even facing the same storms. We're just trying to survive in our own ways, living our own lives and that's the only true identical thing which people living with Diabetes share.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Kindness in Clinic

 

It's been a week, a tough week, for many in the UK. We celebrate Mother's Day under a very dark cloud for women in this country and around the world. Sometimes it's difficult to put yourself in the shoes of others but as a man, somebody who shares the same sex as the majority of people who commit horrific crimes against women, I think the least I can do is to read some of the shared experiences and try to understand what women go through. Beyond that, if I can change my own behaviour for the better then I will.

I tried to do the "read, listen and learn" thing during the peak of Black Lives Matter. I still do. That issue and others have not gone away.

How we treat others, how we address them, how we judge them and the tone we use is something very often "chewed over" by the diabetes community. Some stories are very concerning and remind me of my own bad experiences of diabetes clinics. Would you like a little story? Alright then! Not that you have a choice. I'm telling it:

After a few years of living with T1D, I began to relax a little too much with the condition. Finger pricks were not happening very often and I was eating and drinking anything at intervals which suited me. Pretty normal behaviour for a teenager, I guess. Of course, that behaviour resulted in a noticeable change in my HbA1c. I don't recall the numbers but I remember one particular incident which, even at the time, struck me as totally unacceptable. I saw my then DSN, following news that my last A1c had increased. The conversation began with suggestions that I was an angry young man. (She was right, I was a teenager with a chronic condition, given no psychological support. I was pretty tetchy!) Followed by news of what will happen to me in the coming years if I didn't get a grip of my diabetes. Once the fear mongering over blindness, kidney disease and heart attacks had concluded we (she) moved on to amputations. "I think I should take you to the amputations ward, then you'll see what will happen to you unless you sort yourself out."

Little wonder, you might think, that I stopped attending diabetes clinic appointments at the first opportunity, as an adult.

That tale was from the late 1980s / early 1990s. Over 30 years later, things are different. However, the fear of HCP tone, attitude and judgement is still a thing and not just for me. How do I know? Take a look at This Poll on Twitter

Firstly, let me just say that 291 votes is absolutely NOT a true representation of the diabetes community. It is a TINY fraction of the people living with any type of diabetes. Secondly, I was wrong. I was surprised at the results. I really expected the fear of complications to be an enormous winner. It seems apparent, at least from this little poll, that HCP tone, attitude and judgements are very much on the minds of some when attending their appointments. I think we still have some way to go in that regard.

Kindness in clinic is not a one way street. Kindness towards HCPs is not only for clinics, either. Would you like to know how I start every appointment?

"Good morning/afternoon Mr, Mrs, Dr or even first name terms. How are you?"

Don't get me wrong, I don't really care that much! This is my appointment! but I do think it's a polite thing to say and it gets the appointment off on a friendly footing. 

Would you like to know how I communicate with HCPs on social media?

Politely.

My past experiences with HCPs have no impact on how I communicate with others, today.

HCPs are people, too. They mostly have very demanding jobs, families, relationships and health concerns of their own. They don't deserve to be hauled over the coals by people they might have never met or even interacted with. And sometimes for the most ridiculous of reasons! The defaming of some has been appalling and that needs to end. If you're happy to make hurtful comments about HCPs that you've never met then I really think you've no business to advise others on kindness.

That's it for today. I encourage everybody who reads my blog to try to be a little kinder to everybody around them.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

Shares in Diabetes

Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?

Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?

I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?

Like the FTSE Check 100? 

Or the Low Jones!

Maybe it's going to be something related to Pharma and their Banting Juice businesses.

No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!

I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.

I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it. 

I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs. 

I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.

So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.

Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:

We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.
Participants will receive £80 GBP for a 60 min telephone interview.

To take part just visit: http://tiny.cc/r5b8tz

For information email: anne.verbeke@qual-world.com