Howdy

[Stubbs]

Hello everyone.

My name is Tim (Stubbs) and I have been living with Type 1 diabetes for over 30 years - back in the days of syringes and twice daily mixed-insulin injections. I have seen technical and medical advances that have been marvelous and allowed me to witness a positive side to life I'd not necessarily have been able to without the condition.

I am 55, still work full time (from home right now) and am pretty well controlled, diabetes-wise. I carb count, use the Libre 2 and the app vociferously, and I am quite fit and active (I walk 9 miles a day on average, work out each day including 120 press ups and sit ups throughout the day. I have just started a planking regime - it's very tough!) and eat as healthily as I can. The traffic light system on food packaging, which was not around 30-odd years ago, is another 'advancement' that I simply love! But, I am getting on and have lived with the condition for such a long time that complications will (and have) come - this is why I am joining Diabetes UK and this forum, to bolster the already excellent support that is available to me.

My philosophy is that (my type of) Diabetes is a terminal condition that I'll have when I pass on, but I do not have to pass on because of it. Hopefully that resonates with all of you.

Cheers,
Tim.

 

[Inka]

Welcome @Stubbs 🙂 I’m just astounded at your 120 press-ups! I’ve had Type 1 almost 30 years and started on mixed insulin too.

 

[trophywench]

Hi Tim - another been there done that one here, too - had T1 a bit longer than yourself though.

May I enquire what complications you find yourself lumbered with?

 

[Stubbs]

Hi Tim - another been there done that one here, too - had T1 a bit longer than yourself though.

May I enquire what complications you find yourself lumbered with?

Hello Jenny. I have had bleeding in one eye about 2.5 years ago, retinopathy with laser treatment in both eyes. And, in general, try as I might, of late the 90 day daily pattern graph on my Libre app looks like a cross section of the Andes while everything I do & eat is generally consistent! Never has controlling my sugar levels been so frustrating.

 

[trophywench]

Gosh, the Andes ..... BUT - how does that compare to the graph you get when you compare your meter readings? cos you are always doing your meter readings as well to compare and see if/when they don't match? I ask this because mine don't, all that often, but the discrepancies are neither regular enough to draw any comparisons nor conclusions from.

 

[Stubbs]

Gosh, the Andes ..... BUT - how does that compare to the graph you get when you compare your meter readings? cos you are always doing your meter readings as well to compare and see if/when they don't match? I ask this because mine don't, all that often, but the discrepancies are neither regular enough to draw any comparisons nor conclusions from.

I use the Libre sensor all the time and I also finger prick test 1-2 times a day to check it's in sync. By that I mean that when I finger prick test, I scan the sensor 15 minutes later to make sure the readings are the same, or as near as damn it - and they are pretty much 100% of the time. I also finger prick test if my levels are dropping and/or I am going into a hypo, as a matter of course.

Whether it's meter readings or Libre scans, my levels are all over the place (hence the Andes' peaks and troughs reference) of late, and me and my diabetic team are struggling to understand why!

 

[Flower]

Hi and welcome @Stubbs glad you've joined us 🙂

What is your TIR like as I sometimes look at my daily graph when it is contracted into 24 hours view and it does look like a rocky mountain range but my TIR is not so bad. Do you pre bolus as that is one of the most beneficial things I started to do after reading what other forum members were doing, it's taken some tweaking but definitely flattened a lot of my peaks/spikes. Are you using a pump or MDI?

I hope things have settled down with your sight since laser or are you having ongoing treatment?

I don't think I've ever managed more than 1 press up in my diabetes career!

 

[rebrascora]

Hi and welcome from me too.

As @ Flower mentioned, If your levels are spiking high after meals but then returning back into range then pre bolusing further in advance is usually the answer. Most DSNs advise not to prebolus more that 15-20 mins in advance of a meal, but I needed an hour and a quarter every morning at breakfast with NovoRapid and now 45 mins with Fiasp before I eat. Other times of the day, it is about 20mins in advance but it also depends on my starting level and if I am say 8 or 9 in the evening when I test to calculate bolus, I can sometimes wait over an hour before eating to prevent a spike. I use my Libre to show me when the insulin is kicking in and my levels are at a reasonable reading (usually 5-6) to start eating. I seem to have a rather fast digestive system, so glucose from food (even low GI and fatty foods) hits my blood stream much faster than insulin. It is frustrating but I have learned to work around it mostly. I inject my breakfast bolus before I get out of bed and then potter on getting washed and dressed and having a coffee and prepping my breakfast until my Libre shows the insulin dropping my levels and then I eat. It is a pretty reproduceable 45 mins most mornings and I barely get a bump on my graph. 90 day patterns is a straight line


Of course, ensuring that your basal insulin is as closely matching your body's needs both in terms of profile of activity and dose also makes a huge difference and I regularly need to tweak my basal doses to keep me level. Personally, Tresiba wouldn't suit me but I love my split dose Levemir because it is so flexible.

 

[Stubbs]

Hi and welcome @Stubbs glad you've joined us 🙂

What is your TIR like as I sometimes look at my daily graph when it is contracted into 24 hours view and it does look like a rocky mountain range but my TIR is not so bad. Do you pre bolus as that is one of the most beneficial things I started to do after reading what other forum members were doing, it's taken some tweaking but definitely flattened a lot of my peaks/spikes. Are you using a pump or MDI?

I hope things have settled down with your sight since laser or are you having ongoing treatment?

I don't think I've ever managed more than 1 press up in my diabetes career!

Well, I have never even heard of pre-bolus before - it's never been mentioned nor suggested to me in all my time as a T1. Already, joining this forum is proving beneficial. That being said, up until about 6 months ago, all was pretty stable. Now, it's so erratic. I can have days of steady levels then it all goes haywire. It's certainly perplexing my medical team. My TIR, which is quite broad, due to the amount of exercise I do, (3.9-10.00), is 45%

My latest eye screening points to more changes, which is why I am so very keen to get things under control.

Early 2020, in trying to do more exercise than the hours walking outside permitted during lockdown, I started doing some in-house exercise including push ups. I couldn't do more than 3! I stuck at it and now do 6 lots of 21 each day, among many other things. Same goes for sit ups - I actually couldn't even do one to start off with.

As I mentioned, planking is my new, additional thing. That's crazily hard work but worth it, I reckon - but I absolutely hate it!

 

[Flower]

A really vital piece of information when trying to improve control and living with retinopathy/proliferative retinopathy is to lower glucose levels slowly and steadily. A rapid drop in HbA1c can perversely speed up the progression of retinopathy which is the last thing anyone needs in that position. Unfortunately I didn't know this 20 years back and am an example of what can happen. Slow and steady is the safest way.

This site has good information on all things retinopathy and the need for gradual changes - http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

 

[rebrascora]

Ok, well that is a bit of a revelation! Can't believe no one has mentioned pre bolusing to you at all although with you starting off on a mixed insulin, it wouldn't be so relevant and then maybe with you being so experienced when you started on basal/bolus regime, no one mentioned it then because you probably didn't need any instruction on using insulin by then, if you know what I mean. Also, the very limited testing regime of waking before meals and bedtimes doesn't show all those spikes because 4-5 hours later when you tested before your next meal it should have returned to range. Libre allows you to see everything that is going on in between and enables you to devise tactics to get s smoother graph.

I came into my Type 1 via a Type 2 misdiagnosis, so because of that I was interested in seeing what happened at the 2 hour post meal point and what I found was that even prebolusing 20mins at breakfast time I spiked to mid teens every day and then rapidly dropped back down to about 5. That rapid drop made me feel rubbish so I started experimenting to see how I could prevent it and slowly increased my prebolus time by 5 mins each day and did lots of finger pricking until I found the sweet spot timing for me for that meal. Later in the day it is a bit quicker. Libre has made the whole process so much easier as I just keep scanning every few mins until I see the arrow start to turn downwards and or my levels hit the 5s.
I also follow a low carb, higher fat way of eating due to my initial misdiagnosis. I found that helped to slow down my digestion a bit, provided a steady release of energy over a much longer period than the 2 hours carbs provide (release is usually 2-8hrs post meal which is why I often don't need lunch) and meant that I didn't have to top up so much with carbs during exercise and can sometimes get away with just 2 or even 1 injection of bolus insulin a day. I don't need to eat so much like this because my food is calorie dense but slow release and I don't get hungry or cravings like I used to, even if I just have breakfast and evening meal. My body runs mostly on fat and protein and I feel really good for it. Fitter than I have been for years although no where near your levels of fitness and it has been a fascinating journey. Surprisingly, despite eating a lot of saturated fat my cholesterol has steadily and consistently reduced and ratios are good without a need for statins. I tend now to dose based on my Libre readings rather than calculating carbs and using ratios most of the time and it works really well most of the time for me, but I get spells when things go swry for a few days or a week and I have learned that this is part of the natural ebb and flow of organic systems.

I wonder if your sudden change is anything to do with Covid or perhaps the Covid vaccines. I found there was a notable increase in my basal needs after the first vaccine and my dose almost doubled over the following 3 months. My theory is that the vaccine triggered my immune system to "have a go" at some of my remaining beta cells. I believe there was some research done in the USA of very long term Type 1 diabetics who still had some of their own insulin production even after 30-50 yrs with the condition, so it may be that you had some cells which were helping to take the edges peaks off your Andean mountains prior to that, but that your immune system got a bit too wound up by the vaccine and got confused about who the enemy was, and took out some of your last few insulin producing cells.

Just a theory but it might kind of fit your circumstances if you have been monitoring with Libre for much longer than the last 6 months and suddenly seen a change. Of course, if you are relatively new to Libre then it may just be that you were blissfully unaware of the mountain ranges that your daily BG levels were scaling.

 

[trophywench]

Good grief @Stubbs - in the olden days when we were all on animal insulins, as they hadn't yet invented anything else - you injected insulin about when you put the spuds on to boil or if that was too early, after they'd been boiling for 5. They then chucked the babby out with the bath water when they stopped recommending it BUT it is perfectly true that when I was 20+ years younger, Novorapid (which did work for me within the first 10 minutes so if I pre-bolused I'd be hypo before the food hit the spot, so NP. I know I'm nowhere near as fit and active as I was then so I spose it's pretty 'normal' for my metabolism to slow down? But anyway, I asked my DSN in the summer whether I she thought ought to prebolus and she said absolutely not.

 

[everydayupsanddowns]

Hope the pre-bolusing tip works for you @Stubbs . Start cautiously with meals where you expect a big spike and bring the dose back 5 mins at a time, while keeping an eye on your Libre.

When moving from Actrapid to Novorapid, one of the benefits mentioned to me was that your could inject straight before eating, rather than 20 minutes before. Whereas I guess really they should have been saying ‘only 10-15 minutes before, rather than 20-40 minutes before for Actrapid’

And of course no one said it would be different for everyone (or might need to be completely different for you at different times of the day) - I only really found that out comparing notes with others on forums!

How are your sites after 30 years? Any lumps or bumps? Any areas that are a bit patchy absorption-wise?