Monitoring Glucose... Things I don't understand.

[Lee Riley]

Hello.

I've had Type 1 Diabetes for 23 years, I am 26.

There is a few things I don't get and over the last few years it has been popping up into my mind whenever I've been asked to see a Diabetic nurse and these past few months it just pops into my mind anyway. As a carb counter, injecting to meet the carbs I've eaten, I don't understand why monitoring my glucose is any use to a Diabetic nurse for the following reasons:

Snacking. I snack a lot. There is never enough room, even in the largest blood glucose or homemade diaries to fit all that stuff in. Am I supposed to miss part of the story? No. Still... Space.

Low blood sugar... What's the point of writing down a glucose reading and wasting a test strip when I know I'm low? Sure, I can write it down but that's of little benefit to me. If I leave it out, the Diabetic nurse will miss a piece of the story, but I'm not on set doses. As I've said to Diabetic nurses in the past, I don't have set doses or regular meals, so I know the reason for my glucose levels is either, miscalculation, misjudgement or forgetting a dose by accident. The main thing is usually misjudging a dose because there is no nutrition label.

If I do 6 tests in one day, for whatever reason, what ones do I write down? Can't do all of them. I used to do about 3 a day but with snacking in between larger meals, I still felt it was an inaccurate tale of glucose readings.

Impatient nurses or time constraints. I've been asked in the past to colour code doses and readings because of confusion for them, however it's really just laziness. Though my diaries used to be full, crammed in with pointless info, wherever they asked me about certain readings, I couldn't recall what happened. There is always a series of events beyond food that could be the reasoning for a glucose reading, none of which can be entered and if it could, could still be misinterpreted due to the varying opinions of individuals that make up a Diabetic team.

I struggle to see the point of writing down carb counting glucose results. Set doses at set meal times I totally understand, but doses for carb counting, corrections or miscalculations only really make sense to me and give a **** portrayal for Diabetic nurses who then give suggestions which sound ever do stupid to me.

I don't actually go to Diabetic nurses anymore for this reason, and I did l don't write them down on the limited space of a few sheets of paper. Instead I write my bloods down in Samsung S Health, which isn't ideal but from an entry point of view, it isn't as limiting. I suppose I could always show my Diabetic nurse the graph the next time I'm moaned at to go see them but I'm beginning to think that my understanding of Diabetes and the way I control it is superior to their 10-15 minute judgements and assumptions.

For a good number of years my hba1c has been below 9. Though my glucose is very up and down, thus giving a misleading result, I blame depression primarily for ruining what would otherwise be very good control.

Any carb counters here who struggle to see the point of showing their written/diary results to their Diabetic team? And is there anyone here who had depression and finds it makes Diabetes control difficult when it otherwise wouldn't be so bad?

 

[ButtterflyLady]

Hi Lee, I'm not T1 but have depression and I'm wondering if you are having any treatment for that? In what way does it affect your control... is it a chemical thing in the body or does your mood affect your food choices or is it something else?

 

[Lee Riley]

Hi Lee, I'm not T1 but have depression and I'm wondering if you are having any treatment for that? In what way does it affect your control... is it a chemical thing in the body or does your mood affect your food choices or is it something else?

I'm on Venlafaxine 375mg. The tablets don't affect my Diabetes but depression itself does. Delaying injections, or misjudging a dose only to delay a correction. Mostly comes down to not wanting to do anything. I eat more junk food as a result of depression, to fill time as well as pep me up but obviously simple sugars are much harder to control and the spikes in glucose can be harder to interpret. Being tired all the time doesn't help either, since some times I'll wake up and feel like **** because of high glucose, only to immediately fall back to sleep because my body is physically exhausted (or rather, my brain is being a ***** and is telling my body it is exhausted).

Depression and Diabetes is a horrible mix. Tiredness from either Depression or Diabetes is bad enough, but combine the two... ****.

 

[ButtterflyLady]

I'm on Venlafaxine 375mg. The tablets don't affect my Diabetes but depression itself does. Delaying injections, or misjudging a dose only to delay a correction. Mostly comes down to not wanting to do anything. I eat more junk food as a result of depression, to fill time as well as pep me up but obviously simple sugars are much harder to control and the spikes in glucose can be harder to interpret. Being tired all the time doesn't help either, since some times I'll wake up and feel like **** because of high glucose, only to immediately fall back to sleep because my body is physically exhausted (or rather, my brain is being a ***** and is telling my body it is exhausted).

Depression and Diabetes is a horrible mix. Tiredness from either Depression or Diabetes is bad enough, but combine the two... ****.

I have found the LCHF diet really good for my moods and also for avoiding carb cravings and overeating. I feel full all the time. Changing your eating habits could be the key to diabetic control, which would help with depression.

You might want to ask for a referral to a psychiatrist to check that your depression diagnosis is correct, as there are several different types of depression and mood disorders and they require different meds. Being on a high dose of a fairly strong SNRI without feeling better should be reason enough to get in to a specialist.

 

[ArtemisBow]

I swapped to using an app for my readings as like you I found the paper diaries didn't have enough space. I can then download a report and it colour codes it for me. I can also put notes wherever I want such as for hypos if I think it was exercise related etc.

I use mySugr but there are plenty of other options too. The other benefit is it's all on the phone so I don't have to carry a load of paper around!

 

[tim2000s]

I was also going to suggest the use of an app. Diabetes Connect is one I have found to work well for me. Apps also give you the opportunity to add notes when necessary.

I doubt many T1s record all of their data all of the time (although there are always people who pop up to tell me otherwise).

 

[Neemo]

Hi Lee,

I can relate to your post.

While there are some nurses who are highly cognizant of the day to day realities of type 1, a proportion of diabetes professionals seem to be ticking off a (at times) seemingly arbitrary checklist.

But you should DEFINITELY continue to go to checkups, as the blood/urine test check a number of 'markers' which indicate the health of say the kidney for instance.

I agree with the notion that 6 tests throughout a day does not give a 'fully' comprehensive representation of your BS over 24hrs - but it can be a useful snapshot.

I don't physically record my own results, rather I export them into excel (line chart, pivot charts), this allows me to see my last 1000 results ( I can filter day, week, month accordingly) . Human memory, is fleeting, and as a consequence we can't easily visualise BS readings over a long period of time. - That's why (IMO), having the data can be a powerful catalyst to drive a positive change. I've certainly made a number of positive changes by visualising my own readings..and don't forget it's much easier then having to write it down manually.

In a perfect world, we would all have the CGM - it would make life a LOT easier. The analogy I would use is that those who 'test' have BS blindfold on over 24 hrs, which they are only (either for reasons of finance, or practicality) able to 'take off' 6-10 times a day.

 

[Lee Riley]

Yeah I'd love a CGM. It still infuriates me that greed is why Diabetes care in the UK is so far behind. Insulin pumps privately still cost up to £3,000, which, for a bit of plastic and a cheap pump mechanism is absolutely ridiculous. Of course the NHS hate giving these out. I'm not really in need of one but a CGM would be great.

Recently new tech has allowed the design of CGMs that last months and cheaper to manufacturer, so hopefully in future these can be bought for a reasonable price (unlikely) or available on the NHS. It'd be the single most useful tool in Diabetes health since the inception of glucose metres themselves IMO.

Eating fresh fruit and veg, or nutritionally unlabelled foods is my weakness when it comes to Diabetes, alongside depression. And to those who asked, yes I have been Diagnosed but I'm still in the process of treatment and other possible alternative treatments. Word of warning, if anyone here suffers depression and is offered Venlafaxine... Avoid. Venlafaxine is useful to start but has a list of side effects that is crazy and the drug itself is notoriously difficult to come off. Given how high my dose is, doctors are aiming to get me to the local Complex Care Team to try solve my issues before changing meds because, I presume, this is one of the reasons.

 

[azure]

I don't write my results in a diary (although I did when first diagnosed) and its for much the same reasons as you - no space, not a full picture.

But I do discuss my readings with my team and if there's a problem area we can discuss the best way to deal with that.

I used to find that my BS diary was just flicked through and random results picked out for comment (and often not a very helpful comment at that).

You need to find a system that suits you and helps you.

Sorry you're suffering with depression. Diabetes is enough of a drain without that. I hope you're getting the support you need. Diabetes is a daily slog, and I've found the trick is to fit it into my life rather than letting it control my life. If ditching the diary would help maybe you could talk to your team about that?

 

[Lee Riley]

I most likely will go if asked to see a Diabetic Nurse, but I'll just bring my phone or find a way to export and print. I think that glucose Diaries for anything other than set meals and doses is the completely wrong approach and as said before, doesn't give the full story. A new approach alongside the use of apps on phones should be launched. Why the NHS doesn't design an app all Diabetics can use and all their Diabetic staff are familiar with I just do not know. There are many negatives to paper diaries and far fewer electronically.

 

[bridkid_74]

I personally havent used a diary for ages. I try to but afyrr a week it just gets chucked to one sidr. Most blood sugar monitors have computer software that goes with them. My abbott insulinx does. Thankfully my consultant doesnt mind a computer print out as long as she has something to look at. Ok theres nothing written down as to whether ive bin unwell etc but suppose i could write it in my normal appointment diary. Just gone on pump and dsn said shes fine with computer printouts too thankfully. You have to do what works for you and makes life easier. Xx

 

[lizdeluz]

My DSN would only want to see my results if I had a question relating to my control. Same with my consultant. I don't think my control is good enough and I think I'm the only person who can improve it. My body weight and diabetes control have improved since I started a LCHF diet, I've reduced considerably the amount of insulin I have to inject. But I'm still looking for perfection and a better HbA1c.
I like mySugr because it works out my 7-day averages, but I think it gets some things a bit wrong. So I use a paper diary as well, constantly, and I designed it myself so that I could include everything I wanted to know, rather than what some app thinks I want to know. I study developments over about 2 weeks, and then those paper diaries are out of date and can be chucked. I then use mySugr for longer term analysis and records, but personally I find its printouts a waste of paper, and when once I gave one to my DSN, she did too.

 

[tim2000s]

Hi @Lee Riley, you don't say where in the UK you live or whether you have recently visited a diabetic clinic. Guys and St Thomas's in London have an electronic port that connects to the majority of meters on the market. On arrival, you plug your meter in and your details are automagically uploaded to the hospital systems. The DSN and consultant are then able to look at all of the data with associated useful graphs.

I suspect others do as well. Have you discussed this with them?

I'd also suggest that, during times where control is less good than normal, additional testing and note taking is important, so you can go back and review to understand what happened.

 

[ButtterflyLady]

And to those who asked, yes I have been Diagnosed but I'm still in the process of treatment and other possible alternative treatments. Word of warning, if anyone here suffers depression and is offered Venlafaxine... Avoid. Venlafaxine is useful to start but has a list of side effects that is crazy and the drug itself is notoriously difficult to come off. Given how high my dose is, doctors are aiming to get me to the local Complex Care Team to try solve my issues before changing meds because, I presume, this is one of the reasons.

I am on venlafaxine and I find it the most effective drug I've tried and the side effects are tolerable. I took it a few years ago so I have experience of coming off it, and gladly chose to go back on it later. As long as you come off very slowly it's ok. I had a week or two of zapping feelings in my arms but I knew to expect those so it wasn't distressing. Its important to never run out of pills because within about 6 hours of missing a dose I start to feel dreadful. I wish you the best of luck!

 

[Jaylee]

I most likely will go if asked to see a Diabetic Nurse, but I'll just bring my phone or find a way to export and print. I think that glucose Diaries for anything other than set meals and doses is the completely wrong approach and as said before, doesn't give the full story. A new approach alongside the use of apps on phones should be launched. Why the NHS doesn't design an app all Diabetics can use and all their Diabetic staff are familiar with I just do not know. There are many negatives to paper diaries and far fewer electronically.

This is a fair point made. The iPad app I use keeps me on the "straight & narrow"..
In my experience an app showing what's going on gives you more control in these D appointments when the text book Diabetes by numbers questioning comes from the professionals...

 

[bickmops]

Aviva expert records all testing and you generally only need to do a food diary if things are not going well , what monitor do you have ?

 

[JayPRocks]

Record testing.... Yeah I remember them asking me to do that and my thoughts were more or less the same as yours Lee. As in "Ahhh hello whats the point?!?" Like you I carb count and eat what I want when I want and count then inject. If I feel like **** later on I simply retest and if needs inject the remedy. I have done this for.... ahhh years and years and my Hba1c is within the normal range. When I say years I am 47 and been Type1 for 45 of them. No long term complications. I strongly belive in that is only you who knows how to control your diabetes and no wiffle waffle from professionals will ever really cut it. Yes when I have a hypo I eat a Mars bar and love it. Yes if high I inject and then retest to make sure I am not dropping too low. Having an app diary blood meter storage really only tells the past and will not predict the future.

 

[janejanejane]

I refuse to use those silly logbooks they give out, I keep missing days or forgetting what time I ate or how much I ate and I was just getting really frustrated with myself and j didn't feel like they had a massive effect on my treatment or the advice o was given. I've tried some of the apps but am a huge stickler for interfaces.

Recently I've been wanting to tighten up my control and lose a bit of weight so have set up a private Instagram account. It sounds silly, but it's been really helpful. I take a picture of my food and write the time and carbohydrates in the description, then if I have additional comments later (too much carbohydrates or didn't finish this portion). I can then use it when looking at my pump download information.

 

[wiserkurtious]

Record testing.... Yeah I remember them asking me to do that and my thoughts were more or less the same as yours Lee. As in "Ahhh hello whats the point?!?" Like you I carb count and eat what I want when I want and count then inject. If I feel like **** later on I simply retest and if needs inject the remedy. I have done this for.... ahhh years and years and my Hba1c is within the normal range. When I say years I am 47 and been Type1 for 45 of them. No long term complications. I strongly belive in that is only you who knows how to control your diabetes and no wiffle waffle from professionals will ever really cut it. Yes when I have a hypo I eat a Mars bar and love it. Yes if high I inject and then retest to make sure I am not dropping too low. Having an app diary blood meter storage really only tells the past and will not predict the future.

love it,great read bud

 

[52O342UOIF]

I refuse to use those silly logbooks they give out, I keep missing days or forgetting what time I ate or how much I ate and I was just getting really frustrated with myself and j didn't feel like they had a massive effect on my treatment or the advice o was given. I've tried some of the apps but am a huge stickler for interfaces.

Recently I've been wanting to tighten up my control and lose a bit of weight so have set up a private Instagram account. It sounds silly, but it's been really helpful. I take a picture of my food and write the time and carbohydrates in the description, then if I have additional comments later (too much carbohydrates or didn't finish this portion). I can then use it when looking at my pump download information.

Check out BG monitor if you have an android device, there's maybe one to IOS too. The only application I've found so far that does what I want without "extra" things that just slows down the app application. You can also photograph meals and save with the current BG reading and how much insulin you take.