Type 3c … very erratic BG …. Is this normal?

[Ronnie5cakes]

I had my pancreas removed 11 weeks ago so now dependant on Creon & Insulin. I take Lantus long acting & Novorapid short acting. After all these weeks my readings are more erratic than ever & hoped by now things might have settled down a bit. I have a freestyle libre.
I was on 14 Lantus daily from last Tuesday & my BG reading start falling really rapidly late afternoon… I do rescue JBs or orange juice to prevent it falling too low… At teatime I’m dreading taking the Novorapid because even without that in my system the BG suddenly drops really fast again so that I have ended up drinking OJ before & in the middle of my meal… I am injecting half way through the meal (my idea to delay it taking effect) usually only 1 unit as the read pre meal is so low…After I’ve eaten the BG will drop again because of the insulin & it takes about 3 hours for the food to kick in & start to raise the BG level. This is absolutely awful, spoiling any idea of a nice evening meal & then relaxing… I am feeling so frustrated that the DSN thinks it’s great when my readings are so low… but I know unless I prevent the downward spiral I could potentially have 3 hypos in a few hours….From today I gone down to 12 Lantus thinking this may have contributed to this new situation. Any other type 3c experiencing this awful situation….??

 

[martindt1606]

Hi Ronnie, I had my Total Pancreatectomy in 2010 and it will take a while to build up confidence and land on a formula that brings some predictability. I started as you are doing, couldn't find long term predictability so was switched to splitting the Lantus every 12 hours. This had some impact but my Diabetic Consultant had concerns and we switched from Lantus to Levermir and repeated what we had tried with Lantus - one injection and then 2. My consultant remained concerned especially as we were only able to make decisions based on finger testing (pre CGM). I was the first TP in clinic and the first she had seen in her career. As her retirement gift she found a discretionary budget and got me a pump as she believed my issues were due to the longer lasting insulin. The pump came with DAFNE Training, which if i'd received immediately after the TP would have made that initial 2.5 years a lot easier.
I'm sure you are aware of the following but just in case:
1. After 11 weeks your body is still in recovery, this impacts your blood glucose
2. Over time you need to refine your basal and bolus rates and these will change over time
3. You need to carb count and understand the type of carbohydrate you are eating
4. Exercise, stress, fatigue, illness..... will all impact your BS
5. Creon, like your insulin ratios, the number of capsules you take will change over time, also the number of capsules you take will impact your blood sugars. If you don't take enough you will not fully digest resulting in a bolus based on carbs you are not seeing the full benefit of. If you are taking Creon based on the fat content of food you may not be taking enough to absorb all the carbs.

As mentioned most of the first 2.5 years was experimental trying to find what worked best for me. The next 6 years I had the diabetes controlled as well as most Type 1s. Unfortunately I now have liver mets so every day seems to present a different challenge, but at least now I have the closed loop and Dexcom warning me if I need to consider Tangtastics or a sneaky bolus.

I'm now 14 years in so happy to share experiences etc

 

[everydayupsanddowns]

Sorry you are having such a difficult time @Ronnie5cakes

I think Roland @Proud to be erratic has mentioned before that those who have had a total pancreatectomy are stastistically more likely to have a rather erratic experience of diabetes unfortunately.

Good to hear from @martindt1606 that things can get easier in time.

 

[Ronnie5cakes]

Hi Ronnie, I had my Total Pancreatectomy in 2010 and it will take a while to build up confidence and land on a formula that brings some predictability. I started as you are doing, couldn't find long term predictability so was switched to splitting the Lantus every 12 hours. This had some impact but my Diabetic Consultant had concerns and we switched from Lantus to Levermir and repeated what we had tried with Lantus - one injection and then 2. My consultant remained concerned especially as we were only able to make decisions based on finger testing (pre CGM). I was the first TP in clinic and the first she had seen in her career. As her retirement gift she found a discretionary budget and got me a pump as she believed my issues were due to the longer lasting insulin. The pump came with DAFNE Training, which if i'd received immediately after the TP would have made that initial 2.5 years a lot easier.
I'm sure you are aware of the following but just in case:
1. After 11 weeks your body is still in recovery, this impacts your blood glucose
2. Over time you need to refine your basal and bolus rates and these will change over time
3. You need to carb count and understand the type of carbohydrate you are eating
4. Exercise, stress, fatigue, illness..... will all impact your BS
5. Creon, like your insulin ratios, the number of capsules you take will change over time, also the number of capsules you take will impact your blood sugars. If you don't take enough you will not fully digest resulting in a bolus based on carbs you are not seeing the full benefit of. If you are taking Creon based on the fat content of food you may not be taking enough to absorb all the carbs.

As mentioned most of the first 2.5 years was experimental trying to find what worked best for me. The next 6 years I had the diabetes controlled as well as most Type 1s. Unfortunately I now have liver mets so every day seems to present a different challenge, but at least now I have the closed loop and Dexcom warning me if I need to consider Tangtastics or a sneaky bolus.

I'm now 14 years in so happy to share experiences etc

Thank you Martin….I have taken everything onboard….No one prepares you at all for this …. It’s so hard to live with as the BG is like a yo-yo. Really pleased you have a pump & life is easier for you with that…but sorry to hear you are struggling again now with your new meds & the liver condition… Good luck to you my friend with all you have going on…kind regards Ron

 

[Ronnie5cakes]

Sorry you are having such a difficult time @Ronnie5cakes

I think Roland @Proud to be erratic has mentioned before that those who have had a total pancreatectomy are stastistically more likely to have a rather erratic experience of diabetes unfortunately.

Good to hear from @martindt1606 that things can get easier in time.

Thank you…I appreciate joining this conversation…. At least here I know people will understand my anxiety with all of this…kind regards Ron

 

[Wendal]

Hi Ronnie,
So sorry you are having such difficulty and although I am 3c I had necrotising pancreatitis so still have some pancreatic function just not sure how much.
I think there may be a difference between those that have a total pancreatectomy as everyday suggests and the likes of other 3Cs who still have some pancreatic cells.
I know my diabetes is brittle but I am able to manage it pretty well and am happy I can live a fairly normal life but likes of Roland who has had his pancreas removed are in a better position to identify with your particular situation.
Best wishes moving forward

 

[Ronnie5cakes]

Hi Ronnie,
So sorry you are having such difficulty and although I am 3c I had necrotising pancreatitis so still have some pancreatic function just not sure how much.
I think there may be a difference between those that have a total pancreatectomy as everyday suggests and the likes of other 3Cs who still have some pancreatic cells.
I know my diabetes is brittle but I am able to manage it pretty well and am happy I can live a fairly normal life but likes of Roland who has had his pancreas removed are in a better position to identify with your particular situation.
Best wishes moving forward

Thank you so much for joining in the conversation… Yes it’s definitely brittle diabetes… I’ve taken less insulin today as it’s been plummeting for a few days & now today on a bit less my BG is through the roof… Just thinking I should take a walk to try & get it down a bit before bedtime…. Kind regards Ron

 

[Proud to be erratic]

Hello again Ronnie;

It's difficult to pinpoint what you might try changing to improve your situation without a little more detail. If I'm truthful, I can't detect if you have set about systematically standardising your breakfast, lunches and dinners (boring as that is) just to find out what is working for you with your current basal dose and your current assumed bolus insulin ratios and staying with a consistent physical activity level. As I have mentioned previously this is a marathon and perhaps you are experimenting by changing more than one of your variable "tools" together too frequently.

Also, without seeing some samples of your libre graphs PLUS the essential data showing timings and amounts of insulin and carbs along with at the very least indications of where exercise and/or activity fit into those graphs. If you don't have those graphs available now could you try and get at least 2, better 3, consecutive days of graphs with as near to standard days as you practically can achieve - then some scrutiny might help identify what could be tweaked.

I fully agree with @martindt1606 that in practice your body is still healing and that healing process will be causing background changes as your body manages all of that. Of course you can't possibly accommodate that ongoing healing process and consequent response by your body.

You mention changing your basal doses. Could I ask how many times have you changed your basal in the last 11 weeks?

You mention needing to drink OJ either before or in the middle of a meal. One bit of guidance I gleaned from my DAFNE course was never to start a meal if already hypo or very close. If you are hypo or close, you must treat that hypo, wait a good 15 mins and be sure that recovery is properly underway. Only then consider eating your planned meal. If you treat then eat without waiting, you will be diluting the hypo treatment and it won't work properly. The same principle would apply if you need to have OJ while eating. Meanwhile, from this scenario you are also at risk of eventually eating more carbs than you originally presumed for the bolus you took and inevitably you subsequently go hyper.

Also , are you fully confirming that your hypos or close to hypos are real from finger prick tests. Sometimes you can feel (false) hypo symptoms even when you aren't actually hypo because your body hasn't fully regulated your self to hypo warning symptoms when actual BG is really close to 4. It's been likened to needing to get that hypo warning thermostat on the correct setting.

You have one significant advantage over my first 12 months by having Libre 2. You might have to accept that interstitial readings aren't as close to actual BG as you would wish or expect - but my experience was that the trend arrows were habitually about right and rarely misleading me. Once I put my trust in that bit of my BG management I could make decisions in good faith and set about "judging" what to do next.

As well as having your hypo treatments of c.15gm of fast carbs do you have available slower carbs to follow up and consolidate a hypo recovery. Because I'd been told to eat the secondary snack c.20 mins after a hypo - when this sometimes was needed and sometimes wasn't needed my hypo recoveries were just amplifying the roller coaster effects. Once I got used to having Libre to look at, I realised that I could monitor the trend arrows and react accordingly.

The other thing I realised was that when I was very low I could and usually would over-react to that low and eat too much while low. After a few seemingly very deep and very low hypos in the mid 2s I came to realise that I hadn't died from the experience! I just needed to "hold my nerve" and let the hypo response have its 15 mins, even 20 mins, then retest by fp AND take account of the trend arrow. This all went a long way to smoothing out my mountain graphs, reducing my glycaemic variability and generally restoring my confidence in what I was doing.

BUT it did take time; needed a modestly systematic approach and was extremely antisocial. There was and sometimes still is meals which I've known when they were going to be ready and had to wait because I wasn't ready. My wife was extremely tolerant of my difficulty and interruption to planned meal times.

I must close now. I'm out from early tomorrow for much of the day (our grandson's speech day and end of term sports day, but then onto his normal evening cricket practice!). I will watch out for your replies and thoughts.

 

[Ronnie5cakes]

Hello again Ronnie;

It's difficult to pinpoint what you might try changing to improve your situation without a little more detail. If I'm truthful, I can't detect if you have set about systematically standardising your breakfast, lunches and dinners (boring as that is) just to find out what is working for you with your current basal dose and your current assumed bolus insulin ratios and staying with a consistent physical activity level. As I have mentioned previously this is a marathon and perhaps you are experimenting by changing more than one of your variable "tools" together too frequently.

Also, without seeing some samples of your libre graphs PLUS the essential data showing timings and amounts of insulin and carbs along with at the very least indications of where exercise and/or activity fit into those graphs. If you don't have those graphs available now could you try and get at least 2, better 3, consecutive days of graphs with as near to standard days as you practically can achieve - then some scrutiny might help identify what could be tweaked.

I fully agree with @martindt1606 that in practice your body is still healing and that healing process will be causing background changes as your body manages all of that. Of course you can't possibly accommodate that ongoing healing process and consequent response by your body.

You mention changing your basal doses. Could I ask how many times have you changed your basal in the last 11 weeks?

You mention needing to drink OJ either before or in the middle of a meal. One bit of guidance I gleaned from my DAFNE course was never to start a meal if already hypo or very close. If you are hypo or close, you must treat that hypo, wait a good 15 mins and be sure that recovery is properly underway. Only then consider eating your planned meal. If you treat then eat without waiting, you will be diluting the hypo treatment and it won't work properly. The same principle would apply if you need to have OJ while eating. Meanwhile, from this scenario you are also at risk of eventually eating more carbs than you originally presumed for the bolus you took and inevitably you subsequently go hyper.

Also , are you fully confirming that your hypos or close to hypos are real from finger prick tests. Sometimes you can feel (false) hypo symptoms even when you aren't actually hypo because your body hasn't fully regulated your self to hypo warning symptoms when actual BG is really close to 4. It's been likened to needing to get that hypo warning thermostat on the correct setting.

You have one significant advantage over my first 12 months by having Libre 2. You might have to accept that interstitial readings aren't as close to actual BG as you would wish or expect - but my experience was that the trend arrows were habitually about right and rarely misleading me. Once I put my trust in that bit of my BG management I could make decisions in good faith and set about "judging" what to do next.

As well as having your hypo treatments of c.15gm of fast carbs do you have available slower carbs to follow up and consolidate a hypo recovery. Because I'd been told to eat the secondary snack c.20 mins after a hypo - when this sometimes was needed and sometimes wasn't needed my hypo recoveries were just amplifying the roller coaster effects. Once I got used to having Libre to look at, I realised that I could monitor the trend arrows and react accordingly.

The other thing I realised was that when I was very low I could and usually would over-react to that low and eat too much while low. After a few seemingly very deep and very low hypos in the mid 2s I came to realise that I hadn't died from the experience! I just needed to "hold my nerve" and let the hypo response have its 15 mins, even 20 mins, then retest by fp AND take account of the trend arrow. This all went a long way to smoothing out my mountain graphs, reducing my glycaemic variability and generally restoring my confidence in what I was doing.

BUT it did take time; needed a modestly systematic approach and was extremely antisocial. There was and sometimes still is meals which I've known when they were going to be ready and had to wait because I wasn't ready. My wife was extremely tolerant of my difficulty and interruption to planned meal times.

I must close now. I'm out from early tomorrow for much of the day (our grandson's speech day and end of term sports day, but then onto his normal evening cricket practice!). I will watch out for your replies and thoughts.

Thank you so much for your really helpful reply…. It’s late I just wanted to thank you & in the near future I will definitely put into practice your suggestions & I’ll show you the graphs with details of what was happening…thank you again…I very much appreciate you helping me like this…kind regards Ron

 

[Standup]

I had my pancreas (and quite a few other bits) removed about 10 weeks ago. I was getting a lot of lows and the DSN approach was to tell me to lower the alarm from 4 to 3.8 or even lower. I found that didn't help but someone here suggested the other approach of setting it much higher (Martin or Wendal I suspect) and that allows you to see the downward trend and react in a more controlled manner. Previously I found I tended to overdo it and the numbers would rise in the other direction. Someone else suggested Skittles with about 5 to a Jelly Baby allowed even more finer control. I found if I had a digestive at a downward 5.2 it was a lot more even.

My main problem at the moment is high levels as I'm fairly determined to try live a normal life which means eating what I did before (well minus all the snacks, crisps and chocolate digestives) and it takes a while to work out how different foods with nominally the same carbs behave. Baked Beans caught me out as the high sugar content meant I should have taken my Rapid earlier than I did, Pizza with lots of fats caught me out as it took longer to get into my system and the Insulin had passed through when it did. That meant a low and then a high from the same meal. Tonight has been a bit of failure from a numbers point of view as the 'healthy' vegan pasty turned out to have twice as much carbs as a Cornish pasty with me assuming they're similar.

You don't say what you're eating but if 1 unit of rapid if causing lows do you need more carbs? I've been told I need to eat more to put lost weight back on and that I'm not snacking enough although snacking just feels too complicated at the moment.

 

[Wendal]

I had my pancreas (and quite a few other bits) removed about 10 weeks ago. I was getting a lot of lows and the DSN approach was to tell me to lower the alarm from 4 to 3.8 or even lower. I found that didn't help but someone here suggested the other approach of setting it much higher (Martin or Wendal I suspect) and that allows you to see the downward trend and react in a more controlled manner. Previously I found I tended to overdo it and the numbers would rise in the other direction. Someone else suggested Skittles with about 5 to a Jelly Baby allowed even more finer control. I found if I had a digestive at a downward 5.2 it was a lot more even.

My main problem at the moment is high levels as I'm fairly determined to try live a normal life which means eating what I did before (well minus all the snacks, crisps and chocolate digestives) and it takes a while to work out how different foods with nominally the same carbs behave. Baked Beans caught me out as the high sugar content meant I should have taken my Rapid earlier than I did, Pizza with lots of fats caught me out as it took longer to get into my system and the Insulin had passed through when it did. That meant a low and then a high from the same meal. Tonight has been a bit of failure from a numbers point of view as the 'healthy' vegan pasty turned out to have twice as much carbs as a Cornish pasty with me assuming they're similar.

You don't say what you're eating but if 1 unit of rapid if causing lows do you need more carbs? I've been told I need to eat more to put lost weight back on and that I'm not snacking enough although snacking just feels too complicated at the moment.

Morning nice post Standup and hope you are doing well.
This forum often provides very good info and experiences from knowledgeable folk in a non judgemental way which should help address the questions/ concerns that get raised.
One point I would make is to remember we are all individuals in terms of response to particular suggestions and also how we may want to achieve BG control and how they may be modified in a timely manner.
For eg at first and I have been diagnosed 11 months and still have limited insulin production my first priority was to get to bring my BG levels into the targeted range within a steady timeframe.
Once down there my focus switched to getting a tighter level of control both Time in Range and trying to reduce volatility whilst at the same time as learning much more about how to best manage my condition.
So first to get my basal level as ideal as possible to settle my overnight trend and then to work on getting my daily control so starting with breakfast then moving onto lunch and evening meal and then trying to put it all together.
Once I had done that I then decided to allow myself more freedom in terms of being less disciplined in my approach and seeking a less stringent approach.
This modification was based on a few considerations but as I stressed earlier these are particular to my own situation so are not meant as advice.
I know what I need to do in terms of being disciplined to regain a very high level of control if necessary but I want to live as normal a life as possible so that to me is most important aspect.
This is due to I do not get anxious about if I go hyperglycaemic for short periods or of my trend is more volatile( the way exogenous insulin works means this is inevitable to sone extent).
Apart from my pancreatic issues and diabetes my general health is very good and as I did not have my diagnosis fairly late in life I do not worry about any potential long term damage but just deal with it if and when it may or may not arise.
For me to live as normal a life as possible ( I do not drink alcohol any more) it is so important both from an enjoyment perspective and also to motivate me to fully comply with managing my condition.
Sorry if I am rambling on but hopefully it may be if interest.
Have a good w/end all

 

[martindt1606]

I had my pancreas removed 11 weeks ago so now dependant on Creon & Insulin. I take Lantus long acting & Novorapid short acting. After all these weeks my readings are more erratic than ever & hoped by now things might have settled down a bit. I have a freestyle libre.
I was on 14 Lantus daily from last Tuesday & my BG reading start falling really rapidly late afternoon… I do rescue JBs or orange juice to prevent it falling too low… At teatime I’m dreading taking the Novorapid because even without that in my system the BG suddenly drops really fast again so that I have ended up drinking OJ before & in the middle of my meal… I am injecting half way through the meal (my idea to delay it taking effect) usually only 1 unit as the read pre meal is so low…After I’ve eaten the BG will drop again because of the insulin & it takes about 3 hours for the food to kick in & start to raise the BG level. This is absolutely awful, spoiling any idea of a nice evening meal & then relaxing… I am feeling so frustrated that the DSN thinks it’s great when my readings are so low… but I know unless I prevent the downward spiral I could potentially have 3 hypos in a few hours….From today I gone down to 12 Lantus thinking this may have contributed to this new situation. Any other type 3c experiencing this awful situation….??

Ronnie just another thought which i missed earlier. The normal pancreas controls blood glucose by automatically adjusting for increasing blood glucose levels with insulin and automatically adjusting for falling blood glucose with glucagon. Currently you have one half of this equation under manual "control" based on some predefined rules / guestimates for calculating insulin requirements. You are probably been left to figure out the falling blood sugars yourself. I'm struggling to think back 12 years (hopefully someone with more recent history can jump in) but at some stage your liver should recognise the new you and kick in and start releasing glucagon when your bloods start falling. As i said before i had a long period managing as well as a typical T1 which would not have been possible without the body partially compensating for falling blood glucose. Don't know if its possible for your DSN to test your glucagon response.

 

[Standup]

Morning nice post Standup and hope you are doing well.
This forum often provides very good info and experiences from knowledgeable folk in a non judgemental way which should help address the questions/ concerns that get raised.
One point I would make is to remember we are all individuals in terms of response to particular suggestions and also how we may want to achieve BG control and how they may be modified in a timely manner.
For eg at first and I have been diagnosed 11 months and still have limited insulin production my first priority was to get to bring my BG levels into the targeted range within a steady timeframe.
Once down there my focus switched to getting a tighter level of control both Time in Range and trying to reduce volatility whilst at the same time as learning much more about how to best manage my condition.
So first to get my basal level as ideal as possible to settle my overnight trend and then to work on getting my daily control so starting with breakfast then moving onto lunch and evening meal and then trying to put it all together.
Once I had done that I then decided to allow myself more freedom in terms of being less disciplined in my approach and seeking a less stringent approach.
This modification was based on a few considerations but as I stressed earlier these are particular to my own situation so are not meant as advice.
I know what I need to do in terms of being disciplined to regain a very high level of control if necessary but I want to live as normal a life as possible so that to me is most important aspect.
This is due to I do not get anxious about if I go hyperglycaemic for short periods or of my trend is more volatile( the way exogenous insulin works means this is inevitable to sone extent).
Apart from my pancreatic issues and diabetes my general health is very good and as I did not have my diagnosis fairly late in life I do not worry about any potential long term damage but just deal with it if and when it may or may not arise.
For me to live as normal a life as possible ( I do not drink alcohol any more) it is so important both from an enjoyment perspective and also to motivate me to fully comply with managing my condition.
Sorry if I am rambling on but hopefully it may be if interest.
Have a good w/end all

Afternoon, I think we're both saying to Ronnie 'find what works for you' and hopefully all the different suggestions means he can find some useful approaches.

I seem to have had more support than many of the 3c's on here and most of the medical folks didn't seem too concerned about the first few months of my diabetes. And that's definitely not a recommendation to ignore advice but I think like you I'm relatively mature (50s) for an initial diabetes diagnosis and I suspect there's also an element of pancreatic cancer having such a poor survival rate that the thinking might be a bit shorter term.

I probably do need to look at my Basal levels as I tend to wake about 3am and need a biscuit to raise levels although that gets me through to breakfast. If I fast then levels drop slowly although that's easy to manage and gives me an excuse for a Jaffa cake. As Martin says this can take a while to settle.

Next experiment is seeing the difference between things like brown rice and whole grain pasta against 'normal'. My thinking being the more I can learn in a controlled environment the sooner I can start going out again.

My time in range is about 91% and A1C was 42 just in case you think I'm being a bit cavalier 🙂

As everyone keeps telling me it does take time and there will be blips.

 

[Proud to be erratic]

Ronnie just another thought which i missed earlier. The normal pancreas controls blood glucose by automatically adjusting for increasing blood glucose levels with insulin and automatically adjusting for falling blood glucose with glucagon. Currently you have one half of this equation under manual "control" based on some predefined rules / guestimates for calculating insulin requirements. You are probably been left to figure out the falling blood sugars yourself. I'm struggling to think back 12 years (hopefully someone with more recent history can jump in) but at some stage your liver should recognise the new you and kick in and start releasing glucagon when your bloods start falling. As i said before i had a long period managing as well as a typical T1 which would not have been possible without the body partially compensating for falling blood glucose. Don't know if its possible for your DSN to test your glucagon response.

My understanding, from both Gary Scheiner's book and the PC website is that a TP in removing all your panc'y removes all insulin, glucagon and somostatin hormone production. The insulin messaging we all understand. The glucagon many of us understand; due to an oddity in our evolution human brains can't communicate directly with the liver's glycogen store, or the liver. So for those with a fully functioning panc'y when BG is low the brain sends a message to their panc'y and tells the panc'y to tell the liver to open its store which the panc'y does using glucagon. Somostatin does a degree of balancing between glucagon and insulin releases. I was told on my DAFNE course by the Endo who added her knowledge and value to the course, from a Uni hospital deeply into islet transplants etc, that the liver relearnt nothing new from my TP. It is in some ways a remarkably inert organ, (but does regrow after partial liver surgery). Other hormones such as adrenaline and cortisol still did their business from their places away from the panc'y, hence fear and excitement producing glucose rushes. So as a T3c from a TP I was left to accept that I was on my own for most aspects of D management; but at least I had the tiny advantage of knowing these hormones were no longer there and wouldn't bubble up periodically to add to the confusion of D.

I've never reviewed that, nor done any further reading into this aspect. It's been a struggle at times to just manage my D based on what I knew then; plus along the way manage the odd gastro hic-cup with sometimes just "dumping" (sorry, a horrible yet so accurate term) (still happens, always totally unforewarned) and
along with a couple of years of lost bladder control. So what my body has relearnt with respect to my missing hormones has never got near the top of my future research list. But if I'm adrift of something important I'm willing to adjust my reading priorities.

 

[Wendal]

Afternoon, I think we're both saying to Ronnie 'find what works for you' and hopefully all the different suggestions means he can find some useful approaches.

I seem to have had more support than many of the 3c's on here and most of the medical folks didn't seem too concerned about the first few months of my diabetes. And that's definitely not a recommendation to ignore advice but I think like you I'm relatively mature (50s) for an initial diabetes diagnosis and I suspect there's also an element of pancreatic cancer having such a poor survival rate that the thinking might be a bit shorter term.

I probably do need to look at my Basal levels as I tend to wake about 3am and need a biscuit to raise levels although that gets me through to breakfast. If I fast then levels drop slowly although that's easy to manage and gives me an excuse for a Jaffa cake. As Martin says this can take a while to settle.

Next experiment is seeing the difference between things like brown rice and whole grain pasta against 'normal'. My thinking being the more I can learn in a controlled environment the sooner I can start going out again.

My time in range is about 91% and A1C was 42 just in case you think I'm being a bit cavalier 🙂

As everyone keeps telling me it does take time and there will be blips.

Nice response and as Roland explains the exact way the Pancreas works is pretty complex and I have found the best way to manage is to use your own experiences and I will try and explain further.
My Upper GI consultant never mentioned about the risk of diabetes until I raised the question and his response was he thought it unlikely to happen based on the area of damage to my pancreas was heavily weighted towards the location of my exocrine rather than endocrine cells.
However I had looked at a couple of research papers that quantified the likelihood of developing diabetes after necrosis of pancreatic cells and found that it often developed years afterwards.
I thought the pancreatic cells acted independently but since concluded that there is an interdependency that we don’t fully understand.
Like you am very lucky to have a supportive GP/ family/ employer and had a great DSN ( they took me off their register as I as getting such good control ) plus I work in this space so have a reasonable understanding of how to manage it.
I am in my 60s and although have recovered very well from my hospital experience there were one or two tricky situations whereby I think you do become a bit more “ fatalistic” and as I said before I don’t get anxious about most things and simply deal with as they arise.
I know that 3Cs are much less common and the medical profession less informed but I think there are more than we realise and the benefit of looking at the more Scientific articles means that you can gain a nice insight and to me knowledge is power in helping you manage your condition.

 

[Standup]

Nice response and as Roland explains the exact way the Pancreas works is pretty complex and I have found the best way to manage is to use your own experiences and I will try and explain further.
My Upper GI consultant never mentioned about the risk of diabetes until I raised the question and his response was he thought it unlikely to happen based on the area of damage to my pancreas was heavily weighted towards the location of my exocrine rather than endocrine cells.
However I had looked at a couple of research papers that quantified the likelihood of developing diabetes after necrosis of pancreatic cells and found that it often developed years afterwards.
I thought the pancreatic cells acted independently but since concluded that there is an interdependency that we don’t fully understand.
Like you am very lucky to have a supportive GP/ family/ employer and had a great DSN ( they took me off their register as I as getting such good control ) plus I work in this space so have a reasonable understanding of how to manage it.
I am in my 60s and although have recovered very well from my hospital experience there were one or two tricky situations whereby I think you do become a bit more “ fatalistic” and as I said before I don’t get anxious about most things and simply deal with as they arise.
I know that 3Cs are much less common and the medical profession less informed but I think there are more than we realise and the benefit of looking at the more Scientific articles means that you can gain a nice insight and to me knowledge is power in helping you manage your condition.

Apologies to Ronnie for hijacking the thread a bit and please feel free to drag us back on topic which is how we can help you. I'm hoping the discussion is useful though.

Diabetes was never discussed for me when I went in for my Whipple (or the variant I had) as it was a very small tumour on the head. Apparently once the surgeon got in there my pancreas was shot and he thought the tumour had spread. It hadn't but it looks like there was something wrong or going wrong with my pancreas. I did try asking the surgeon about it but he'd lost interest after slicing and dicing but it sounds like I would have ended up here sooner rather than later. I did find the medical staff very well informed but I was in a specialist centre of excellence for pancreatic cancer. I don't think my GP knows much about 3c but they've basically said tell us what you need. The pharmacist after tentatively asking if I needed more than 3 months supply of my various drugs and bits of kit has been great as well. I've been able to add multi-vitamins to my prescriptions, variations on Creon as well as tell the GP when he can stop issuing sick notes and so on. I'm not an expert but it definitely helps to read up a bit so you know which questions to ask. I'm fortunate that they listen as well.

Next up is the diabetes dietitian in a week or so with my clinic after that and I'm preparing a long list of questions for them. And if they don't know the answers it gives them something to go and find out 🙂

 

[Proud to be erratic]

@Standup and @Wendal I'm sure your comments have great value in the generic question of what is normal for T3c. You are also, I think, implicitly adding to what I said about needing to approach the erraticness systematically: reduce any variables that you can reduce and use the CGM to observe as you try to make adjustments.

I also think that T3c during the early months is a very different experience for those managing D after a TP and those after pancreatitis treatments. For the TP it's very abrupt and finite, for pancreatitis it might not be finite and the getting to T3c was much more abstract. In fact there is a considerable variation in the details of getting to and being each variant of T3c. Enough philosophising, methinks.

 

[Wendal]

Morning Roland absolutely as my initial comment illustrated

“I know my diabetes is brittle but I am able to manage it pretty well and am happy I can live a fairly normal life but likes of Roland who has had his pancreas removed are in a better position to identify with your particular situation”.

All our situations are different and all our experiences here need to be taken in that context and of course need to be distilled as being part of the decision making process rather than sone kind of ready made answer .

Hope you are keeping well.

 

[Proud to be erratic]

Doing well enough thanks. Would like to see my TIR improve, but am now on paper as a slight possible for a pump - to be discussed next Consult (2025?). So a glimmer for the future. Meanwhile after 12 months sharing a house with our daughter, s-i-l and grandson we're ready for them to go!! September we all hope. Being close to family has great potential but in the same small house is challenging. When they get c.100m away in their 5 bed luxury home will be close enough for all of us.

 

[Wendal]

Doing well enough thanks. Would like to see my TIR improve, but am now on paper as a slight possible for a pump - to be discussed next Consult (2025?). So a glimmer for the future. Meanwhile after 12 months sharing a house with our daughter, s-i-l and grandson we're ready for them to go!! September we all hope. Being close to family has great potential but in the same small house is challenging. When they get c.100m away in their 5 bed luxury home will be close enough for all of us.

Good to hear Roland and wish you well in your quest for a pump and good to know your “ family” will be sorted very close by and you can get your house back.
I know we love them all and want to help them as much as possible but I think it is important that we all have our own bit of space.
Again we are lucky to have our two children living close by and very settled and whilst we have no grand children we have our four legged friends to keep us on our toes.