Looking for other T3c’s on Libre 2

[JohnSimpson64]

Ampullary Cancer nearly 9 years ago treated with pylorous-preserving Whipple procedure in 2015 followed by chemo on a ‘just-in-case’ basis. Pronounced ‘cancer-cured’ by Oncologist a couple of years ago, but as we all know that’s not the end of it by a long straw. The surgeon back in 2015 predicted that I was likely to become diabetic as the remaining pancreas atrophied over the years (his words) and I am now under the Diabetes/Endo Consultant team at the hospital who have now given me Libre 2. Have done the basic system workshop run by Abbott and am comfortable with the operation etc of the Libre. But would be interested to hear from anyone else with similar and techniques for smoothing out the daytime high peaks.

Managed by 1 basal Semglee evenings and bolus Truapi (Aspart) during day.

 

[soupdragon]

Hi and welcome @JohnSimpson64
I'm Type 3c following a single episode of severe pancreatitis
Can you tell us about your current treatment? I'm assuming you're on insulin?
The first thing that springs to mind is prebolousing fast acting insulin a suitable amount of time before eating (suitable time varies with person, insulin and time of day).
Tagging @Proud to be erratic who may have some other suggestions that are particularly relevant to your situation.

 

[JohnSimpson64]

Added treatment above …

 

[Proud to be erratic]

Ampullary Cancer nearly 9 years ago treated with pylorous-preserving Whipple procedure in 2015 followed by chemo on a ‘just-in-case’ basis. Pronounced ‘cancer-cured’ by Oncologist a couple of years ago, but as we all know that’s not the end of it by a long straw. The surgeon back in 2015 predicted that I was likely to become diabetic as the remaining pancreas atrophied over the years (his words) and I am now under the Diabetes/Endo Consultant team at the hospital who have now given me Libre 2. Have done the basic system workshop run by Abbott and am comfortable with the operation etc of the Libre. But would be interested to hear from anyone else with similar and techniques for smoothing out the daytime high peaks.

Managed by 1 basal Semglee evenings and bolus Truapi (Aspart) during day.

Hello @JohnSimpson64 and Welcome also from me,

My Whipple was in Feb 2020 for a cancerous tumour around my pancreas, the pancreatectomy was total, pylorus preserving and like you followed by adjuvant chemo. My Whipple instantaneously made me insulin dependent. My discharge paperwork stated that I was T1 and I subsequently found out about the T3c diagnosis from this forum. In the last 3+ years I have encountered numerous Health Care Professionals (HCPs) who have absolutely no awareness of T3c as a diagnosed condition and who are oblivious to the practical medical realities of having no pancreas. It is useful for you to know and be aware that you are in strange medical territory for most HCPs.

I see you already have Libre 2 and seen the Abbott Freestyle training material. Have you come across the limitations of CGM which Abbott (not surprisingly) don't readily draw your attention to? CGM has been absolutely invaluable to me; understanding its limitations is essential. A link to that is:

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

My instinct is to immediately agree with @soupdragon that the spikes you see on your CGM graphs are a consequence of timings: I nearly typed in poor timings, but that is unfair. In an ideal scenario your digested food needs to arrive in your blood as glucose at the same time as your insulin becomes available to facilitate the transfer of glucose from your blood into the multitude of cells for tissues and muscles etc. But this is easy said and extremely difficult to manage.

I know nothing about Semglee or Truapi, but each will have a declared typical release profile - that may (or may not!) be similar to how your body actually releases the injected insulin. The other significant part of this process is dependent on the speed of digestion of what you've eaten and not only does that need you to get the Creon in place in a timely manner to be fairly sure of actual digestion but also the Glycaemic load of what you've eaten affects the speed of digestion. Simple (?) ... well not really. And then the behaviour of insulin is also affected by your natural ever present insulin resistance, which for the vast majority of us varies at different times of the day/year and varies according to how low or high our blood glucose is. So now this apparent set of mathematical problems are really no longer using numbers but mental judgements. Oh, and of course there are also 40 known factors that can affect our blood glucose 365 days a year and many are not at all quantifiable numerically. Diabetes is complex.

So, smoothing the spikes on your graphs is a natural desire and at first glance seems essential. BUT spikes exist with non-diabetic folks. Also thanks to CGM you are now aware of what your body is doing; before CGM became more widely available (only in very recent years) insulin dependent people had no idea of what was going on with their BG, other than from a modest number of finger pricks - literally momentary snapshots. Yet we have today many insulin dependent folk living to a great age, preceding today's tech age. I, with no pancreas, not only have no insulin hormone production, nor digestive enzymes, nor the hormone glucagon to stimulate my liver to open my body's main glucose store, I also don't have the (infrequently mentioned) hormone somatostatin that plays a balancing act between insulin and glucose in my blood. So I don't get anxious or stressed by my spiky graphs. I do what I can and every tomorrow is a new day, regardless of how I did today.

I do make a very determined effort to not get as low as 4.0, never mind the more accurate figure of 3.5 for official hypoglycaemia. I have been advised going low a lot is really bad for my long term mental state. Similarly I try reasonably hard to not go above 10.0 for long periods, which can bring about a greater risk of those problems associated with diabetes. I am achieving c.70% Time in Range (TIR), >4 & <10. Realistically that is about as good as I can achieve. Fortunately and reassuringly that is rated as very good by my Consultant and his Team as well as the NICE Guidance. It can be too easy to get obsessed and too anxious in trying to control one's BG and many of us accept that we can't "control" only manage as best we can.

Have you come across Gary Scheiner's book "Think Like a Pancreas". This is very much pitched at insulin dependent diabetics and Gary Scheiner is himself T1 since his late teens - so is an author who has that personal experience of insulin dependency.

All for now, again Welcome. Ask anything - no question is stupid and the forum membership has between us a vast store of D knowledge.

 

[JohnSimpson64]

@Proud to be erratic Firstly many thanks for taking the time to post a pretty big chunk of pretty good info. Before I became managed by the hospital Diabetes/Endo unit I had a difficult time with my GP who ‘diagnosed’ me as T2 for a couple of years and with who I had to actually argue with when he said there was ‘no such thing as T3c’. Long story short, he got a letter from the Endo Consultant advising him to go visit the Diabetes UK website and do some reading up. Quite amused me that. But all now water under the bridge.

I read the stuff about the limitations, especially the compression lows. Funnily enough, I’ve had two or three low alarms in the middle of thenight over these first ten days. BUT. Because of my whipples surgery I do actually sleep on the opposite side to the arm the sensor is currently on. Now, I know what you’ll think …. I might not know if I roll over in sleep LOL. But pretty sure not, as ‘halfway there’ would be on my back which is when I immediately start snoring, incurring the wrath of dear partner who always (lovingly) digs me in the ribs and shouts “SNORING”. Not something that one naturally sleeps through. And like Pavlov’s puppies, I suspect I’m now trained for life to stay-on-one-side. As an aside, have to say she’s not currently hugely impressed by the low alarms at 3.00am but is putting on a brave face in the cause of medical discovery. Possibly.

Funnily enough I found out about “Think Like a Pancreas” only yesterday and spent a lot of today speed reading it. To a newcomer to all of this it looks hellish complicated. And I used to think that working out how many Creon to take was tricky! But I do get yours and Soupdragon’s view on timing and Gary Scheiner handily provides the ‘why’ on the methodology. So I get the theory, just need to now put it into practice and the habit of doing the calculations at the right time. And avoid the danger both of getting obsessed and it taking over my life.

Loads more questions coming I feel. 🙂

 

[rebrascora]

Funnily enough, I’ve had two or three low alarms in the middle of thenight over these first ten days.

You are double checking the night time lows with a finger prick though, aren't you, even if you are quite sure it's not a compression low?

 

[Wendal]

Hello @JohnSimpson64 and Welcome also from me,

My Whipple was in Feb 2020 for a cancerous tumour around my pancreas, the pancreatectomy was total, pylorus preserving and like you followed by adjuvant chemo. My Whipple instantaneously made me insulin dependent. My discharge paperwork stated that I was T1 and I subsequently found out about the T3c diagnosis from this forum. In the last 3+ years I have encountered numerous Health Care Professionals (HCPs) who have absolutely no awareness of T3c as a diagnosed condition and who are oblivious to the practical medical realities of having no pancreas. It is useful for you to know and be aware that you are in strange medical territory for most HCPs.

I see you already have Libre 2 and seen the Abbott Freestyle training material. Have you come across the limitations of CGM which Abbott (not surprisingly) don't readily draw your attention to? CGM has been absolutely invaluable to me; understanding its limitations is essential. A link to that is:

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

My instinct is to immediately agree with @soupdragon that the spikes you see on your CGM graphs are a consequence of timings: I nearly typed in poor timings, but that is unfair. In an ideal scenario your digested food needs to arrive in your blood as glucose at the same time as your insulin becomes available to facilitate the transfer of glucose from your blood into the multitude of cells for tissues and muscles etc. But this is easy said and extremely difficult to manage.

I know nothing about Semglee or Truapi, but each will have a declared typical release profile - that may (or may not!) be similar to how your body actually releases the injected insulin. The other significant part of this process is dependent on the speed of digestion of what you've eaten and not only does that need you to get the Creon in place in a timely manner to be fairly sure of actual digestion but also the Glycaemic load of what you've eaten affects the speed of digestion. Simple (?) ... well not really. And then the behaviour of insulin is also affected by your natural ever present insulin resistance, which for the vast majority of us varies at different times of the day/year and varies according to how low or high our blood glucose is. So now this apparent set of mathematical problems are really no longer using numbers but mental judgements. Oh, and of course there are also 40 known factors that can affect our blood glucose 365 days a year and many are not at all quantifiable numerically. Diabetes is complex.

So, smoothing the spikes on your graphs is a natural desire and at first glance seems essential. BUT spikes exist with non-diabetic folks. Also thanks to CGM you are now aware of what your body is doing; before CGM became more widely available (only in very recent years) insulin dependent people had no idea of what was going on with their BG, other than from a modest number of finger pricks - literally momentary snapshots. Yet we have today many insulin dependent folk living to a great age, preceding today's tech age. I, with no pancreas, not only have no insulin hormone production, nor digestive enzymes, nor the hormone glucagon to stimulate my liver to open my body's main glucose store, I also don't have the (infrequently mentioned) hormone somatostatin that plays a balancing act between insulin and glucose in my blood. So I don't get anxious or stressed by my spiky graphs. I do what I can and every tomorrow is a new day, regardless of how I did today.

I do make a very determined effort to not get as low as 4.0, never mind the more accurate figure of 3.5 for official hypoglycaemia. I have been advised going low a lot is really bad for my long term mental state. Similarly I try reasonably hard to not go above 10.0 for long periods, which can bring about a greater risk of those problems associated with diabetes. I am achieving c.70% Time in Range (TIR), >4 & <10. Realistically that is about as good as I can achieve. Fortunately and reassuringly that is rated as very good by my Consultant and his Team as well as the NICE Guidance. It can be too easy to get obsessed and too anxious in trying to control one's BG and many of us accept that we can't "control" only manage as best we can.

Have you come across Gary Scheiner's book "Think Like a Pancreas". This is very much pitched at insulin dependent diabetics and Gary Scheiner is himself T1 since his late teens - so is an author who has that personal experience of insulin dependency.

All for now, again Welcome. Ask anything - no question is stupid and the forum membership has between us a vast store of D knowledge.

Morning John,
Sorry about your diagnosis but you will find this forum is great for support and info.
Have to say a very good post above from Proudtobeerrattic as per usual who always gives a very detailed and informative post in a logical fashion.
I can only endorse his thoughts and the importance of taking control of managing your condition as best you can but not expecting perfection.
Managing diabetes ( plus other conditions) especially without a Pancreas is complex and calls for a lot of judgement calls based on a mixture of art and science on a daily basis.
I manage mine both proactively and reactively based on a mixture of diet/ exercise and medication and as I still have some pancreatic function( not sure how much) and no other co morbidities and fairly new into my diagnosis then my journey so far has been fairly straightforward but I am under no illusions about how things can rapidly change.
So I would not worry too much about the peaks and troughs as long as you try your best to stay within the targeted range and avoid the very lows.
You also have to balance all your discipline and hard work required to manage your condition with the need to enjoy your life and consider those close to you like friends and family.
Getting “ Think like a Pancreas” to improve your understanding is a great first step and good luck on your journey.

 

[JohnSimpson64]

You are double checking the night time lows with a finger prick though, aren't you, even if you are quite sure it's not a compression low?

Well, sort of. At 3.00am, by the time I had reacted to the alarm, switched on the brain, found the glasses, sorted out the BG kit etc etc, the graph on the Libre had already started to climb back from 3.something ….. But I was getting low 5’s on BG so allowing for lag etc, it kind of feels like they may be for real?

 

[JohnSimpson64]

Managing diabetes ( plus other conditions) especially without a Pancreas is complex and calls for a lot of judgement calls based on a mixture of art and science on a daily basis.

Yes, that sounds like a good summation. I referred in earlier post to having to also take pancreatic enzymes (Creon) with a variable dosage calculation before every meal and that is very similar - but even after 8 years of ‘practice’ it‘s still what I’d call kind of hit-and-miss. The main difference being that getting-it-wrong manifests itself usually some 12 hours later in the smallest room. Probably TMI lol.

 

[Wendal]

Again John highlights that all our individual situations are different and my experience with Creon has been very straightforward with it allowing me to have a very free choice diet and no digestive issues after 15 months use.
The only real enforced behavioural change I have done is a strict no alcohol intake since my attack 18 months ago but of course that requires ongoing medication and recognition that I need to think about planning and judging my activity and diet etc so yes that impact on spontaneity.
ATB

 

[everydayupsanddowns]

Welcome to the forum @JohnSimpson64

Glad to heat that you have found some of the suggestions from forum-members helpful. If nothing else, just knowing that it wasn’t only me that found the endless glucose juggling tricksy, fickle and frequently infuriating was hugely reassuring and helpful when I first joined diabetes forums!

Although not originally specifically designed for Type 3c, I wonder if you might find the free online BERTIE course helpful? It’s quite similar to DAFNE, which has a great reputation for improving management in T1, and might give you some insights around juggling some of the impacts of things like exercise, illness, alcohol, and even things like mood/stress and the weather, along with reinforcing the basic principles of balancing insulin doses with the carbohydrate content of meals.

If you are interested, you can register here:

Bertie Diabetes

 

[Proud to be erratic]

A thought about Creon (and alcohol)

Again John highlights that all our individual situations are different and my experience with Creon has been very straightforward with it allowing me to have a very free choice diet and no digestive issues after 15 months use.

@everydayupsanddowns has elevated those of us with a penchant for snacking on Creon to being "Creonistas". There are a couple of informative posts about Creon which, if I were cleverer, I would find and provide links to.

What was clear from those threads and posts was that there is a fair amount of difference within us Creonistas in how much Creon we need (or think we need) as well as exactly how we take it. I got bored with trying to accurately calculate my Creon and clung to the professional advice that you can't overdose on Creon. So I take one 25k capsule for every15 gms of carbs and one or 2 with any snack. I know that the Creon is not mathematically related to carbs - but it gives me a simple "rule of thumb" (and my thumbs are a fair match as a pair) that works. My Gastroenterologist in 2021/22 described my consumption as being in industrial quantities; I used to take about 30 capsules daily but lately this has reduced to about 20 daily and because of the hiatus with supply of 25k capsules recently I have a mix of 10k and 25k capsules. At least one Forum member takes a great deal more capsules than myself

When I forget my Creon I also know later.

The only real enforced behavioural change I have done is a strict no alcohol intake since my attack 18 months ago but of course that requires ongoing medication and recognition that I need to think about planning and judging my activity and diet etc so yes that impact on spontaneity.
ATB

I've drifted into being a very low alcohol consumer. Not a concious decision, just I can't be bothered to calculate for extra carbs and now pretty well only drink a glass of red or a small malt whisky a couple of times monthly. The red wine, when imbibed, is with a meal and usually the meal is away from home and that carb count is vague and guestimated; so it's effect on my metabolism is not sufficiently frequent for me to see any kind of pattern for my bg behaviour. My infrequent whiskys are late in the evening and usually I no longer have any bolus on board so again I can't deduce much from that.

I've drunk my share of alcohol in previous decades; I don't miss it this decade!

 

[JohnSimpson64]

I got bored with trying to accurately calculate my Creon and clung to the professional advice that you can't overdose on Creon. So I take one 25k capsule for every15 gms of carbs and one or 2 with any snack. I know that the Creon is not mathematically related to carbs - but it gives me a simple "rule of thumb" (and my thumbs are a fair match as a pair) that works.

Having worked my way through Surgeons, Oncologists, GPs, Dieticians et al I share the same view that nothing can be calculated and it’s trial and error. We do soon learn about the errors. My rule of thumb (aka guesstimates) FWIW is for main meals a base of 8-9 25,000 capsules plus an add-on number depending on fat content rather than carbs. Snacks also at one two or three. Whilst everyone says that one can’t overdose on them I do find that too many turns me into something of a barrage balloon and not something to be anywhere near when it pops. Just saying lol.

I know this kind of deviates from the forum‘s purpose of Diabetes but might be helpful for any other Creonistas

 

[everydayupsanddowns]

@everydayupsanddowns has elevated those of us with a penchant for snacking on Creon to being "Creonistas". There are a couple of informative posts about Creon which, if I were cleverer, I would find and provide links to

Haha! Not me, I merely adopted it from @mikeyB I think.

I can offer the sledgehammer approach of the forum search for ‘Creon’ which might give you a start looking for the content?

https://forum.diabetes.org.uk/boards/search/198060/?q=creon&o=date

 

[Proud to be erratic]

Well, since Creon comes with most T3cs, I don't think we're deviating - so @JohnSimpson64 don't feel bad at continuing the discussion.

I thought there was a compilation of other discussions about Creon in one thread, but I can't find it (probably my memory playing tricks again). I did a search this afternoon against Creon, in titles, and there is a fair amount of background wash on the topic.

Returning, John, to your original query about peaks and troughs:
I deflected from answering that in my endeavour to first help you manage your expectations. But if this continues to bug you, or getting a series of low alarms continues, try asking again with an accompanying screenshot of your LibreLink graph PLUS some details about last meals (or snacks) and bolus, particularly times and sizes. I'm OK but not great at this; however certain members are terrific detectives and can spot a possible explanation for a trend.

Your comment that you thought your recent low in the last 10 days was not a compression low is interesting - since when one gets a fairly rapid drop, then an alarm and, after a sleepy blink, then a bounce back this, often, is from a compression low. But as you say (and I always have my sensor on my left and always sleep on my right) that compression low seems really unlikely recently then the brief interruption of the sensor must, of course, be for some other reason.

A reason could be a genuine brief excursion by your bg into a different world, but that would be unlikely for me. When I have a fairly rapid genuine and meter confirmed fall I personally very rarely get a 'quick' bounce back. Even after a moderately aggressive rush for 3 or even 4 Jelly Babies (3=15gms carbs) I'll certainly get some recovery and be back above 4 but I'll then linger somewhere between 4 and 5 and need to nudge my BG up a bit more with some extra but lower GI carbs, such as a plain biscuit. A different explanation could be just the LibreLink algorithm getting itself in a muddle, realising something is wrong and then redoing its "sums" to restore the status quo display. Sometimes that brief dip even disappears from the graph as part of the restoration and correction.

But generally a dip in the small hours of a normal night is, I think and others may have different experiences, unusual. The Dawn Phenomena can produce an increase in BG, as one's liver releases some insulin even before dawn, to help you start your day; but not normally the other way round. I had a 50% failure rate of Libre 2 sensors and unexpected blips usually were a forewarning to me that my latest sensor was moving into fail mode.

Otherwise your brain, a big user of glucose during the night as it is doing the housekeeping, must have needed help! I think, not certain about this, but our brains don't need insulin to capture glucose from the blood. A different 'otherwise' could be you had an excessively active day preceding that small hours dip and there can often be a carry over of demand for glucose well after the actual period of activity - even 36 hours later or more - along with a reduced degree of natural insulin resistance; all leads to opportunity for hungry muscles to drain glucose from your blood.

Numerous possibilities.

You may have read in Think Like a Pancreas that Gary Scheiner describes Diabetes as "Complicated, Confusing and Contradictory". I think that applies particularly to me with absolutely no panc'y and without the normal enzymes or hormones. The rules of D are not fixed in the first place and panc'y not there allows further contradiction.

 

[trophywench]

A dip in BG in the early hours is FAR from unusual - it's virtually one of the normal characteristics of humans! (certainly a definite characteristic of the blood glucose of a human bean anyway, rather than what differs us from moo cows, effalumps, woof woofs etc) (having said that of course I've no idea whatsoever how the BG of other warm blooded mammals behaves)

It's well known when anybody works night shifts whatever they do for a living or eg volunteering to man helplines overnight, because pretty much all of em get 'the munchies' and even if not food, need a bit of a 'pick up' at around that time. Nice cup of tea/coffee etc.

 

[Proud to be erratic]

A dip in BG in the early hours is FAR from unusual - it's virtually one of the normal characteristics of humans! (certainly a definite characteristic of the blood glucose of a human bean anyway, rather than what differs us from moo cows, effalumps, woof woofs etc) (having said that of course I've no idea whatsoever how the BG of other warm blooded mammals behaves)

It's well known when anybody works night shifts whatever they do for a living or eg volunteering to man helplines overnight, because pretty much all of em get 'the munchies' and even if not food, need a bit of a 'pick up' at around that time. Nice cup of tea/coffee etc.

Thanks for that. Is there a medical explanation for this normal human characteristic, since such dips sit potentially in contradiction with the Dawn phenomenon? Do you see both dips and then rises on your graphs or are your pump bolus doses in the small hours just routinely altered to smooth these out?

I can understand anyone doing night shifts potentially experiencing dips in the small hours. My working life periodically needed me to do nights, sometimes irregularly and sometimes on 14 day repeats; and just once for 4 months in my 20s. I never felt I had settled into night time routines and certainly was hungry during the night, but this precedes having D and any sort of CGM to know what my BG was doing. Lunches in the small hours were normal for me and I deliberately did that to try and convince my body that day was naturally dark and it was OK to sleep in the afternoon until time to get up for breakfast and work.

Looking back at some of my own recent overnight graphs I don't seem to have such dips - whereas I used to get rises from what I assumed was DP. I no longer get rises, either; but for the last 3+ months I've had a pure protein mini-snack whenever I've been woken in the small hours for a bathroom visit and those tiny lumps of cheese and a couple of nuts have been sufficient to confuse the Dawn Fairy and stop early am rises, including FOTF rises. But with absolutely no panc'y my BG responses are not necessarily typical.

 

[trophywench]

Clinically I'm sorry - I simply do not know how/why - although I do understand by now that there's obviously nowt wrong with your liver. You see, I've never been interested enough in either to discover how/why, although the DP bodily process is fairly simple to grasp and has been explained fairly regularly by various online contributors over a good many years. However, I don't actually remember reading the nitty gritty of the early hours dip, just accepted that it simply occurs and, as you say, have long had to make its inevitable occurrence with my pump basal rates. But I actually saw a still interested doc at my last clinic appt who pointed out I now needed drop my basal a tiddly bit (less than 5%, which is a quite normal level of adjustment to an hourly rate for me as the highest rates were 0.58u/0.56u, mostly less than half of that) So - it isn't my own insulin that can cause my drop in BG then but the insulin I'd sent into my body. I've no idea whatever whether the rest of my still functioning pancreas has any effect at all but merely suppose that your basal can cause it just the same as mine can for me. (and I attempt to stop because I have the tools, though without a pump, you're using a very blunt instrument (if it has any shape at all) to deal with such things 24/7/365)