Glucose Variability

billpearson

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Insulin
Hi

I've had Type 1 Diabetes since September 1980. I am currently on a Humalog and Lantus regime (I would prefer to be on a quicker acting insulin than Humalog - but can't persuade my prescribers to alter it). I am told that I cannot yet have an Insulin Pump (despite meeting the criteria), as I need training on Counting Carbs first - and there is a 1 year+ waiting list for this! I am baffled why I need this training - I have been counting carbs since September 1980....

I'm afraid that my control has not been as good as I would have liked. Since I retired (in 2018) I have really tried to improve my control. I aim to do a minimum of 10,000 steps a day (and sometimes do 12 miles+ walks). I am a keen cook, and have a diet rich in wholegrains, pulses etc. I eat 30+ different plants a week and most of these are veg and not fruit. I have radically cut back on drinking alcohol, and currently aren't drinking alcohol at all. My HbA1C results were typically around 63 and always above 58.

I have been using Freestyle Libre from before it was available on prescription, and have found it to be the most useful thing that I have had, to help my diabetes control. I have asked for Dexcom - as I have heard that it's more accurate, but I can't persuade my prescribers to prescribe a Dexcom...

Last year (against my better judgement) I agreed to accept support from my local team of Diabetes specialists - and let them see my Freestyle Libre results. My specialist told me that my highs were caused by preceding lows, and correctly pointed out that if your blood sugar ever drops below 4, you will not have good control the following day.
However, her advice was to drastically cut all my insulin. I was taking 18 units of Lantus - she cut this to 10 units. Similar drastic cuts were made to my Humalog doses.
Predictably (to my mind) my blood sugars went through the roof! My HbA1Cs have never been higher (over 70) and I have lost over 6 kgs in weight! She told me that I shouldn't worry about HbA1C results and Glucose Variability is far more important. I have read a recent paper that supports this suggestion.

I have given up following her advice, and wonder what others think?
 

CheeseSeaker

Well-Known Member
Messages
202
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People arguing over silly stuff
Hi @billpearson,

Sounds you're having fun at the mo - taking this a bit at a time....

So the DAFNE course is brilliant - you've been counting carbs since the 80's but in that time the training and knowledge has altered hugely, you'll be amazed and delighted by what they can now tell you about how food works in the body and blood stream. I found (did DAFNE in 2006 (or 8)), was diagnosed in 1973 and learned a heck of a lot of new stuff.

This is essential to pumping (and now HCL where a brain 'semi-replaces' your pancreas - you need to tell it the carb amounts when eating, but anything else it works out and takes any of your work away - amazing stuff).

Ultrafast insulins - (I'd recommend you try Lyumjev if you need an ultrafast as it based on humalog) may help - however if you've spent years using your current insulin it might be as simple as site rotation to make it work better (I over-injected my legs and got huge resistance - I've since found new locations make it all work really well again).

The difference between Dex and Libre - Dex 1+ is the Dex G7 (with functionality turned off) Dex One is the G6 (with less functions in the software). My comparison between the 1+ and L2 is the 1+ is 'slightly' more accurate but not massively so if you struggle to get moved from L2 to 1+ its not that big a deal. The L2 is being removed from manufacture and replaced by L2+ (extra day but the same kit) in July this year (in the uk anyway) - so they will need to change that anyway.

I've found over the years the Diabetes teams (had many different ones as time goes by) can be a bit sweeping with changes to keep you safe - they don't want you dropping low (as that could be immediately life threatening) so might cut too much insulin, and work forward to get you at the right level. I implement recommendations cautiously and step down rather than big cuts - but thats my preference to manage changes slowly.

Does sound a bit like it might be insulin resistance - I'd honestly give injecting 'somewhere new' on your body a go and see if it changes how you react to the insulin - just be ready with lucozade in case it kicks in 'as expected' rather than what you have.

For the future - HCL (pumps and intelligence) are life changing - you only need the fast acting insulins (ultrafast works better as it responds to the changes faster than 'Fast' (like humalog) insulins - I went DIY as the HCL wasn't available to me when I started my changes (3 years now) and it works really well - I have a FCL (fully closed) where I don't do anything other than monitor and add insulin etc when the pump runs out ( I do need to tell it about pizza and difficult foods) and its like having my long-lost pancreas back - thats the next stage for the commercial systems, and you'll love it.

Hope that helps a bit :)
 
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Juicyj

Expert
Retired Moderator
Messages
9,195
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Hello @billpearson

With the greatest respect to your team - no one knows you better than you. Personally I would take any advice given with a pinch of salt and remembering that they don't live with this 24/7. Making such a drastic change in insulin doses isn't what i've been told, 2-3 units perhaps if the need really warranted it but not around a 44% reduction. I was also given the advice to change one thing at a time over a week to measure the result first before next adjustment. In regards to hypos and 24 hours, from an exercise point of view it's something I do factor in if I have an high intensity activity to keep levels slightly elevated but it's not something I would change my basal ratio for unless it was a repeat event with a pattern, so unsure if this is the case with you, but regardless such a big reduction will raise your BG levels.

I refer to glucose variation as 'time in range' and yes is important now as it was always considered that hypos can affect the HbA1c which isn't a wholly accurate guide for measurement,, my DSN is also keen to use this data, I know that I prefer to keep my range fairly tight and to try and avoid the swinging highs and lows but am using TIR as my guide now, despite keeping my TIR at around 80% my HbA1c is still 52 and has been for over a year now.

Personally I do not adjust my basal unless I do some fasting tests first to rule this out - it is the most important guide to managing insulin and is the starting point to look at before doing anything else.

Trust you gut Bill, do what you feel is right, after all it's our lives that are affected so it's vital we take full ownership.
 

becca59

Well-Known Member
Messages
3,027
Type of diabetes
Type 1
Treatment type
Insulin
Hi @billpearson we are now able to have a choice on Libre/Dexcom. It is in the guidelines. If you ask for it they cannot be awkward about prescribing.
Sounds like they are putting too many obstacles in your way.