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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Take It Easy

A couple of days ago, I tweeted about Time In Range. It was a tweet inspired by my previous week of blood glucose data which saw six days of fabulous numbers then one day of less than fabulous. As day 7 progressed and I struggled to establish a BG under 10, I felt the frustration build. My 24hr TIR was 33% and I was beginning to get pretty irritated by what I was seeing. Perhaps that is something you've experienced? Our hard work can pay off on one day then the same hard work just will not yield the same results on another day. Annoying, huh?!

Prior to that TIR tweet, I had recently been involved in many discussions surrounding research. I'm rarely dismissive of any single person's experience unless it is dressed up as research. It is pretty difficult to accurately conclude a study based upon your own data, your own research of... yourself! There are tonnes of problems with that from having the absolute minimum in sample size to your own biased, skewed, point of view. Research should involve big numbers, where possible. Many aspects of Diabetes are researched to form what is deemed as a good opinion or even safe advice. Not all of that "research" has been conducted adequately to form a good conclusion. I'll leave it to you, reader, to discover the shoddy research which backs some aspects of Diabetes. Back to TIR!...

...and big numbers, your research, should apply when you're concluding how things are going in regards to your own management and your Time In Range. So, after the initial frustration of 33% TIR I made a coffee and had a few biscuits (bolused for, ofc) and relaxed. One poor day doesn't represent how hard I work to take care of my T1D. The same could be said for any period, really. A bad year isn't enough data to determine how hard you work to take care of your lifetime with T1D - maybe that bad year is only 2% of your time with T1D and you've been living through a pretty rough 12 months, personally? Perhaps there isn't an obvious reason because, as Diabetes loves to prove, there are very often no apparent reasons for what's going on.

The title of this blog post is Take It Easy and I think it's time for me to worry less about day to day fluctuations in my Time In Range. I have a lot of history and TIR data since using an insulin pump. I know that I float around 77% - 80% and I know that is a pretty good level of management so, why should I stress about a very tiny snapshot in time? I'm certainly going to try to be less of a drama llama about the numbers in future and try to remember my own words; you'll never be a perfect diabetic - there is no such person. Easier said than done! but I'll try.

I wonder if I/we worry about the wayward days because of the nature of our condition. Essentially, our body is attacking itself and we have no control over that happening despite it being OUR BODY! That's the crazy thing about this autoimmune disease; We have absolutely no say and no control in it happening. When it's here, we're left with trying to manage it to stay alive and stay well, no easy task. Perhaps now we have the tech and the data to establish some form of control, we think we can tame the beast every single day. Maybe we tame the beast so well, so often, that when we do have a wayward day it feels far more stressful and worrisome than it might if we were managing our T1D via guesses and infrequent finger pricks. 

All our technology and information is massively helpful (to me, at least) but it doesn't guarantee perfection, it is certainly not a cure. 

So, I'll end this short blog by encouraging you to not beat yourself up over your Diabetes and everything related to it. You will make mistakes and you will do everything right - that's called being human. Doing your best as often as you can is all you should aim for. Your best is not the T1D management of somebody else. You do you.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Gotta Wear Shades

I don't HAVE to wear shades but doesn't everybody look cooler while wearing sunglasses? That's me, in the photo, outside the Bellagio in Las Vegas, almost 8 years ago. This blog isn't really about sunglasses, I promise.

Firstly, huge thanks to everybody who supported my December charity blogs. They raised £90 for Diabetes charities - all the money has already been sent, take a look at my Twitter timeline for a detailed breakdown. Perhaps I'll do something like that each year because it's good to give.

I'm doin alright, gettin good grades, the future is so bright, I gotta wear shades. Do you remember that song? It still gets thrown around from time to time when things are looking promising. In the world of Type 1 Diabetes, in the UK at least, things do seem to be looking up. On a personal level, things are pretty good as well.

I'm doin alright

The numbers suggest as much. My eA1c is floating around 6.6% and my Time In Range is in the low 80% area. Numbers are just data so, that aside, I'm happy to confirm that I actually feel pretty good, too. Better levels of sleep because of fewer Diabetes related interruptions is certainly a life changer. That and no feelings of being overwhelmed by injections have certainly put a shine back into life. Those things are down to me using an insulin pump, of course and you know that because you've already read of my gushings for the last 4 months. If you want to switch to pumping then I encourage you to start the conversation with your Diabetes team. At this point, I am still refused NHS funding for pump therapy and I've taken my foot off the throat of decision makers in that regard - I'll explain why at the end of this blog, keep reading.

Gettin good grades

TIR, eA1c, Hours slept... there are probably others, too but the numbers are looking good and if T1D is judged on such things then the grades are looking pretty nice.

Future is so bright 

Possibly. A bright future involves access to all available technology to all who can benefit from it. My data shows the benefits to me but that's not enough to satisfy the current NICE criteria for pump funding. I've written about why the criteria isn't fit for purpose and is causing individuals to self harm to achieve an A1c which would make them eligible for pump therapy. That's not a route which I'm going to explore but I will keep talking about it because it's obviously very wrong and potentially very damaging to the health of people living with T1D. 

A bright future involves the scrapping of the current NICE criteria for pump funding. Good try, folks but delete that and start again. You can do better. Aaaaaaand it seems that might be happening. I await the news of NICE criteria changes, later this year. March, perhaps. Of course, if it still pushes individuals to self harm then my noise will increase and I will submit to the requests to talk about it through more public sources than my little corner of the Internet. The coming months will be very interesting indeed and I do hope the future is incredibly bright for everyone living with T1D and not just for some, for some things.

I gotta wear shades

Because, as established already, shades are cool. It's important to remain cool and calm in most situations. If you're fighting off a hypo or struggling to reduce a hyper then I've always found things seem to move more smoothly if I just take a breath and stay calm. Perhaps stress and anxiety can affect BG? Of course it does! as it can affect other areas of your life. So, rather than press harder for pump funding I am going to do nothing apart from wait. I'm going to put my faith in the decision makers to level the playing field, faith in HCPs to facilitate access to technology and look for reasons to make it happen rather than reasons to refuse and faith that the current use of a donated pump will hold out long enough for me to not be worried about the day it dies - because I'll be granted NHS pump funding and a warranty for the tech I'm using. The shades are on despite it being January, freezing cold and dark at 4pm. The shades are on because I'm cool and calm and patiently waiting for the right things to happen.

Happy New Year.

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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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