Sunday, February 26, 2023

The Murky World of Diet and Type 1 Diabetes

A plate of cheesy chips

A subject, today, which never causes any debate or angry opinions on social media; Diet. Yeah, right! If you're only an infrequent social media user, you'll probably have noticed much antagonism when it comes to diets, even a passing remark or a sharing of a photograph can stir up plenty of hostile debate. For somebody who uses social media on a daily basis to talk about diabetes, such as me, then it quickly becomes apparent just how often the subject can stir angry exchanges. For somebody, such as me, who has spent many years in online marketing it also becomes apparent exactly why the fires of diet "discussions" are often stoked.

Firstly, I'd like to clarify that I am not anti any diet. I eat a varied diet which isn't driven by my diabetes. What you or anybody else chooses to eat and the reasons for that are entirely personal to you.

Right! Let's get the marketing issue on to the table. It's cunning, it really is,. You can see how such marketing behaviour works in other industries, too. Politics isn't really an industry but elements of it use the same methods to create noise. That noise comes through fear and hatred. In politics, that is especially dangerous as it can stir extreme views and, following that, extreme events. Trump, Washington, anybody? 

Anyway! in the diet industry, the same thing works all too well and specifically in relation to diabetes where the fear of complications can be wheeled out at any given time. Of course, it's not enough to simply say "If you eat that, you'll have high blood glucose and your legs will fall off" Fear of a terrible complication alone isn't always enough to sell a diet. You might notice that insulting remarks are used, the diet seller will insult the intelligence of the innocent food muncher. That won't often result in a diet conversion but it will be seen by others and nobody wants to be seen as "stupid" or "dangerous" by posting their carby dinner! and wait! Maybe they have a point because they have thousands of followers?! Oh no... What's that book called again? Where can I subscribe to that diet?

Kerching!

What a horrible industry. Preying on the fears and weaknesses of others to increase book and service sales. It's big business. You'll notice many accounts that are no older than 12 months on Twitter, they'll follow many diabetes related accounts, quote the "master" account many times and try to engage with anybody who tweets about diets and diabetes. There are many hundreds of these accounts, created by others and purchased for a small fee by the "master" account and diet merchant. All that engagement, all the impressions, all the vulnerable people who are desperate to avoid complications, filter down to the one person who will be profiting from the sales. There are many people who perform this simple trick, many different diets, some run by the same people who contradict each others diet advice because they don't care about the diet, you, your complications or well being - only your money.

Kerching!

It's not just random people in far flung places or nations with questionable rules and regulations. There are plenty living within the UK and USA. Some may even have impressive qualifications in diets and diabetes fields and that might seem reassuring to you. Don't be fooled. Unless the medical advice that you're given stems from a professional who can read your medical notes and history then it's not worth a minute of your time or a penny of your income. 

Away from the diet merchants and their murky behaviour there are the well meaning folks who have stumbled upon a diet and lifestyle which has worked well for them. What works for one doesn't necessarily work for another and blindly (no complications pun intended) following the words of a stranger on the Internet seems like playing with fire to me.

For instance, below is an 8 hour graph of my blood glucose from the early hours until mid-morning. 

Pretty good, huh?

Now, let's assume you stumble upon that and I'm making lots of noise about the diet I use to achieve this. It's so easy that anybody can do it and all you need to do is send me £500 to find out how it works. I'll mention a few words such as "Carbs are fine" to gain your interest and "You don't want higher numbers and complications, do you?" to stir your fear. 

Still not sold? I have more tricks! I'll engage with the wider community via Tweetchats, Diabetes Chat, DSMA, etc. I'll even attend a few conferences, meet a few people in person and gain trust. I'll mention high profile people who work within diabetes to look so trustworthy... maybe they'll reply and I'll look REALLY trustworthy. Hi Partha.... Hi DiabeticDadUK.... Hi anybody with a few thousand followers. Let's throw in a few popular hashtags to support worthy causes, even more trust!

Still not sold? Then I'll unleash the bots who will quote my diet to thousands of you. So many people are following the diet that it MUST be trustworthy! 

Murky, isn't it? I don't begrudge anybody making a living through work in diabetes, by the way. I have made a tiny income from Buy Me a Coffee, ads and speaking engagements. It would be hypocritical of me. I do strongly dislike the practices of diet merchants and even if those practices are legal, many are morally bankrupt. Please get your diet and diabetes advice from your HCP team and block anybody who tries to sell you a diet.

If you enjoyed this blog and you'd like to support me and the time that I give to others then check out these links (no diets are for sale)

Wednesday, February 15, 2023

HbA1c and Time In Range

Data a character from Star Trek the next generation


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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Saturday, February 11, 2023

Out Of Order

Toilet out of order sign with image of a toilet

You might remember two of my earlier blog posts if you're a regular reader; Hobnobs in Hiding part 1 and part 2 are two of my more popular posts. If you've never read those or you'd just like a refresher then:


Those posts contain detail of my early diabetic life through school, my struggles to come to terms with my diabetes and the extraordinary lengths which I went to, to hide my condition.

Why am I revisiting those posts? Well, back to the present day, you may have noticed some controversy on Twitter surrounding a very tiny newspaper piece which was sent in by an anonymous reader. Liana tweeted a photo of the offending article but if you haven't seen it, it looks like this:


Alongside many others, I expressed my displeasure at using column inches for such a stigma breeding opinion. The Metro published replies to that opinion and that is perhaps some saving grace for them. However, should it have been given the time of day in the first instance? We can't assume readers pick up and read The Metro on consecutive days to hear both sides of the "argument" - Three responded to the offending comment.

Not that there is an argument to be had or any kind of debate, really. I strongly believe that anybody should be allowed to treat their illness in a public place when necessary but, as a Type 1 Diabetic, I am only going to write about Type 1 Diabetes in this post and the incredible dangers of causing people like me to hide their diabetes.

It is only relatively recently that I gained the confidence to talk openly about my diabetes and even more recently that I have gained the confidence to do diabetes "stuff" in public. Many have simply bitten the bullet and never hidden their diabetes, public injecting and blood glucose checking has never caused them any anxiety and they just crack on with things. Others have always had a problem in that regard and, to this day, should I need to inject in public rather than use an insulin pump I would have anxieties over the process, being watched and being judged. Reading through the Twitter threads following the Metro controversy, it became apparent that some are going through what I did in the 1980s and what I still would be going though over public injecting. 

Bathrooms, toilets, the WC, whatever your preferred term, appear to be the go-to place for many to hide away to do their diabetes necessities. Some even recalled incidents of being told or asked to use the bathroom to check their BG or administer a bolus - Hence the image used for this post. The bathroom might not be out of order but demanding that a diabetic use one to inject absolutely is!

Nobody with diabetes should feel ashamed to have the condition. I doubt that many of the diagnosed woke up one day and decided it would be cool to be a diabetic and actively tried to make it happen. Millions of people have diabetes of various types. It is incredibly common. So, why are we being shamed, stigmatised and made to feel like second class citizens?

The media.

Society still takes on board a lot of media influence. That might be TV, Internet or "newspapers" such as The Metro. Influence isn't as difficult as you might imagine. A few carefully chosen words and images can cause many to act and think in the most horrendous of ways. Sensationalism sells much copy, too. Could that be the reason why The Metro published the thoughts of "Shocked" the anonymous person from Tyne and Wear. With much attention and even reader responses, the following day, I wonder just how real "Shocked" is and just how truthful their little comment actually is. The British press are well known for the somewhat bending of the truth. It sells copy, remember? 

"Shocked" suggested an injection into the hip, too. I've injected in various places but never into the hip, have you? and the lifting of the skirt to the hip? I've never worn a skirt but I can only imagine that hip exposure is easier from pulling the top of a skirt down a few inches. 

Things don't add up with this little opinion piece but that's by the by. It's published and the easily influenced may feel the need to verbalise how shocked they are should they see a diabetic doing what they need to do in a public place. 

A person may then neglect to inject, pump, check their BG, flash a sensor or check their CGM in public from then on. Purposefully neglecting their T1D management, conditioning themselves to hiding it and potentially causing complications issues in the long run, hypo issues in the immediate term. A person who didn't ask to be a diabetic and who is just trying to manage their chronic illness to stay alive and well.

We talk about language in diabetes a lot. Sometimes, that's very valid. Sometimes, not really. In this case and in every stigmatising piece published or broadcast by media, I firmly believe it needs to be called out and corrected in the loudest ways from the most senior people working as advocates. Stigma and the discrimination it breeds is absolutely out of order. 

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