Hi everyone!

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Hi and welcome from me too.

Balancing insulin to food and other situations like exercise and stress etc is a bit of a "dark art" and involves experimenting lots and getting it not quite right a good bit of the time, in order to get better at it. Basically it comes with experience and there is no short cut to gaining that. 🙄
Take comfort that we all struggled for the first few months and still struggle to some extent 4 years down the line, but I get it right more frequently now and more importantly I am more laid back when I do get it wrong. I try to learn lessons from what happened when it went wrong, I rebalance my BG levels afterwards and then move on.

Do you have Freestyle Libre or other CGM sensor to monitor your levels? I found this an invaluable tool in helping me to understand how my body responds to different foods and my insulin and this will vary at different times of the day as well as with different foods.
 
Welcome also from me. Once you have your question (s) ready I'm sure we will be ready to rise to that challenge. Meanwhile, would you like to whet our appetites and share some background about yourself. I had a total pancreatectomy in Feb 20 and I certainly still have some struggles, with finding that insulin / food balance. [In conjunction with exercise, activity, timings, weather, stress ... and about 30 other factors].
 
Smileyc said:
I`ve recently been diagnosed with type 3c and am still struggling with balancing insulin Vs food intake. Once I`m familiar with navigating the forum I`m sure I`ll have some questions for you.
Click to expand...
Hey, I’m new also on here. Would love to know more about 3C, I’ve had Type 1 since birth.
 
Hello again @Smileyc,
My initial post to you last night wasn't as helpful as it might have been - so I thought a bit mire info might help you.

T3c is rarely diagnosed, partly because it's a rare Type of Diabetes and partly because some medical folks rather stubbornly or lazily don't recognise this type; yet diabetes is defined by its cause, not the treatment path - and if T3c you are definitely not T1 (that loss of insulin production comes from an autoimmune condition damaging the pancreas) and not T2 (caused by high continuing insulin resistance preventing one's body from managing ample insulin production). T1 and T2 make up almost 100% of the diabetes community and all the other types add up to less than 1%, apparently.

One book I found very helpful was Gary Scheiner's "Think Like a Pancreas". In that book he describes Diabetes as Comolicated, Confusing and Contradictory. Personally I completely agree and can recall numerous examples of each of those descriptors. I also found it Frightening, early on. But I've grown up with a background bit of dogma that Knowledge Dispels Fear; so I've made it my business to try and understand as much as I reasonably can about My Diabetes. That has certainly helped me.

Most of the already rare T3cs are insulin dependent; but not all. It seems that damage to our pancreas, from whatever source (accident, major surgery, Endocrinology probs such as pancreatitis, steroids, alcohol poisoning and many other reasons) does mean that extra insulin becomes necessary and oral meds are generally less helpful. That pancy damage can also affect some or all of the other key functions of your pancreas. Total removal of my panc'y meant that I was left in no doubt that: I have no insulin hormone, nor the glucagon hormone (which my brain would use to tell the liver to open the glucose store - but can't!), no somostatin hormone (sometimes called an enzyme not a hormone) that does some balancing or regulating between insulin and glucose in the blood, and no digestive enzymes. It seems that one's pancreas may be a small organ, but does a lot for our everyday living and plays a big part in our metabolism.

There are some 42 factors that affect our blood glucose [Did I say that D is complicated?] . We need food and liquid to keep us alive; our brain only uses glucose which it normally gets from carbohydrates; but will convert proteins or fats into glucose if we starve it of carbs, but at different speeds and in different proportions [Complicated and Confusing?] and even carbs convert at different speeds according to their Glycaemic Index (GI). Oh, also despite our best endeavours to count carbs, apply our best guesses at carb/insulin ratios, inject at the optimum times and check the weather first - sometimes this still doesn't keep our BG in control!!! [D can be very Contradictory].

So please don't be alarmed or overwhelmed by this gloomy picture I'm painting. Just be aware that managing your D to the best of your ability is a reasonable aspiration, getting it about right day by day is achievable, but controlling your D is, in my opinion, not possible or realistic. All that gloom said, there are lots of people on this forum who have had D for decades, who are still alive and who lead happy and full lives. T3c is a bit more complex than T1 or T2, I think, because there is inevitably a cause of the panc'y damage that might also need managing as well as managing the D. But this doesn't make it impossible and there are lots of people with 2 or more comorbidities that they wrestle with daily.

A final passing thought at this stage: there is a huge amount of detail available through the Internet and if in English but from N America its expressed using different units! But a lot of that detail starts from different analysis of Diabetes with different backgrounds of diets and lifestyles. I found it easiest and safest to 'stay local' and there is a massive amount of knowledge on the Diabetes UK website as well as this forum - more than enough to keep things Complicated, Confusing and Contradictory - but in a relatively safe way.

Good luck.
 
Welcome to the forum @Smileyc

Which insulins are you on? And have you been given an introduction to carb counting? There’s a brief overview here which may help:

The nuts and bolts of carb counting

When you live with type 1 diabetes, carb counting is a great way of managing your blood sugar or glucose levels. It can give you more freedom and flexibility in what you eat when you're preparing meals at home, grabbing food on the go or eating out. Carb counting does take some time and effort...
www.diabetes.org.uk www.diabetes.org.uk
 
rebrascora said:
Hi and welcome from me too.

Balancing insulin to food and other situations like exercise and stress etc is a bit of a "dark art" and involves experimenting lots and getting it not quite right a good bit of the time, in order to get better at it. Basically it comes with experience and there is no short cut to gaining that. 🙄
Take comfort that we all struggled for the first few months and still struggle to some extent 4 years down the line, but I get it right more frequently now and more importantly I am more laid back when I do get it wrong. I try to learn lessons from what happened when it went wrong, I rebalance my BG levels afterwards and then move on.

Do you have Freestyle Libre or other CGM sensor to monitor your levels? I found this an invaluable tool in helping me to understand how my body responds to different foods and my insulin and this will vary at different times of the day as well as with different foods.
Click to expand...
No unfortunately still finger pricking at the moment will look at this as an option but I do the occasional test 2 hours after eating to get an indication of the rise. Thanks for your reply
 
Proud to be erratic said:
Welcome also from me. Once you have your question (s) ready I'm sure we will be ready to rise to that challenge. Meanwhile, would you like to whet our appetites and share some background about yourself. I had a total pancreatectomy in Feb 20 and I certainly still have some struggles, with finding that insulin / food balance. [In conjunction with exercise, activity, timings, weather, stress ... and about 30 other factors].
Click to expand...
No problem, was diagnosed and treated for acute necrotising pancreatitis around 8 weeks ago. Also major fluid collection under the lower curvature of the stomach which I still have 3 stents in place, should be coming out in three weeks.
All in all I`m in a much better place now and I`m sure the combined knowledge of this forum will be of great help.
 
Juss said:
Hey, I’m new also on here. Would love to know more about 3C, I’ve had Type 1 since birth.
Click to expand...
I don`t know that much tbh, type 3c as I understand it develops when there is damage to the Pancreas, mine was Necrotising which means part of the Pancreas had died. This can happen through inflammation or injury, I was unlucky as mine was also infected. The damage caused a lack of insulin and here we are 🙄
 
Proud to be erratic said:
Hello again @Smileyc,
My initial post to you last night wasn't as helpful as it might have been - so I thought a bit mire info might help you.

T3c is rarely diagnosed, partly because it's a rare Type of Diabetes and partly because some medical folks rather stubbornly or lazily don't recognise this type; yet diabetes is defined by its cause, not the treatment path - and if T3c you are definitely not T1 (that loss of insulin production comes from an autoimmune condition damaging the pancreas) and not T2 (caused by high continuing insulin resistance preventing one's body from managing ample insulin production). T1 and T2 make up almost 100% of the diabetes community and all the other types add up to less than 1%, apparently.

One book I found very helpful was Gary Scheiner's "Think Like a Pancreas". In that book he describes Diabetes as Comolicated, Confusing and Contradictory. Personally I completely agree and can recall numerous examples of each of those descriptors. I also found it Frightening, early on. But I've grown up with a background bit of dogma that Knowledge Dispels Fear; so I've made it my business to try and understand as much as I reasonably can about My Diabetes. That has certainly helped me.

Most of the already rare T3cs are insulin dependent; but not all. It seems that damage to our pancreas, from whatever source (accident, major surgery, Endocrinology probs such as pancreatitis, steroids, alcohol poisoning and many other reasons) does mean that extra insulin becomes necessary and oral meds are generally less helpful. That pancy damage can also affect some or all of the other key functions of your pancreas. Total removal of my panc'y meant that I was left in no doubt that: I have no insulin hormone, nor the glucagon hormone (which my brain would use to tell the liver to open the glucose store - but can't!), no somostatin hormone (sometimes called an enzyme not a hormone) that does some balancing or regulating between insulin and glucose in the blood, and no digestive enzymes. It seems that one's pancreas may be a small organ, but does a lot for our everyday living and plays a big part in our metabolism.

There are some 42 factors that affect our blood glucose [Did I say that D is complicated?] . We need food and liquid to keep us alive; our brain only uses glucose which it normally gets from carbohydrates; but will convert proteins or fats into glucose if we starve it of carbs, but at different speeds and in different proportions [Complicated and Confusing?] and even carbs convert at different speeds according to their Glycaemic Index (GI). Oh, also despite our best endeavours to count carbs, apply our best guesses at carb/insulin ratios, inject at the optimum times and check the weather first - sometimes this still doesn't keep our BG in control!!! [D can be very Contradictory].

So please don't be alarmed or overwhelmed by this gloomy picture I'm painting. Just be aware that managing your D to the best of your ability is a reasonable aspiration, getting it about right day by day is achievable, but controlling your D is, in my opinion, not possible or realistic. All that gloom said, there are lots of people on this forum who have had D for decades, who are still alive and who lead happy and full lives. T3c is a bit more complex than T1 or T2, I think, because there is inevitably a cause of the panc'y damage that might also need managing as well as managing the D. But this doesn't make it impossible and there are lots of people with 2 or more comorbidities that they wrestle with daily.

A final passing thought at this stage: there is a huge amount of detail available through the Internet and if in English but from N America its expressed using different units! But a lot of that detail starts from different analysis of Diabetes with different backgrounds of diets and lifestyles. I found it easiest and safest to 'stay local' and there is a massive amount of knowledge on the Diabetes UK website as well as this forum - more than enough to keep things Complicated, Confusing and Contradictory - but in a relatively safe way.

Good luck.
Click to expand...
Wow, so much to take in. Thanks for the info and advice, plenty of reading to do I think. I`m only 8 weeks into this so still finding my feet.
 
everydayupsanddowns said:
Welcome to the forum @Smileyc

Which insulins are you on? And have you been given an introduction to carb counting? There’s a brief overview here which may help:

The nuts and bolts of carb counting

When you live with type 1 diabetes, carb counting is a great way of managing your blood sugar or glucose levels. It can give you more freedom and flexibility in what you eat when you're preparing meals at home, grabbing food on the go or eating out. Carb counting does take some time and effort...
www.diabetes.org.uk www.diabetes.org.uk
Click to expand...
glARGine in an Abasaglar Quick Pen (27 units)
Aspart in a Trurapi Pen (10 units before food)
I`ll have a look at the link you sent thanks.
 
Smileyc said:
glARGine in an Abasaglar Quick Pen (27 units)
Aspart in a Trurapi Pen (10 units before food)
I`ll have a look at the link you sent thanks.
Click to expand...

Good to hear that you are on basal:bolus.

This is a flexible system of insulin therapy that should eventually allow you to adjust and tailor your doses on a meal-by-meal basis to give you almost complete freedom in what and when you eat (though you may find some things are easier to dose for than others!)
 
Smileyc said:
Wow, so much to take in. Thanks for the info and advice, plenty of reading to do I think. I`m only 8 weeks into this so still finding my feet.
Click to expand...
You are welcome.

One other cautionary note: threads and responses in this forum about T2 aspects are NOT relevant to you. How T2s, who generally are not insulin dependent, manage their D is pretty different from those of us who are insulin dependent. So remarks about avoiding certain foods, or staying under certain daily carb totals and testing after 2 hrs (3 examples) won't apply to yourself - UNLESS they are in the context of managing your pancreatitis. Broadly without any pancreatitis issues you will be able to eat whatever you wish, whenever you wish - but you will need to master an insulin dosing regime to cover whatever the carb content is for your chosen food.

All of this D malarkey is complex and can feel very daunting. Stay calm; there is an endless amount of help available from this forum, from people who have been novices themselves and who have masses of first hand experience. Nurses in GP Surgeries who deal with the diabetic folks in that practice (often called the Diabetes Nurse) generally only deal with T2s and rarely with people who are insulin dependent. Hopefully you should be under the care of a Diabetes Specialist Nurse (DSN) who usually is only found in a Hospital team (in certain regions there can be DSNs in the community). You need a DSN who you can contact when you feel really adrift!

Glad you are on a basal/bolus system. This is sometimes referred to as Multiple Daily Injections (MDI).

@rebrascora asked a necessary question: Do you have Freestyle Libre or other CGM sensor to monitor your levels? I found this an invaluable tool in helping me to understand how my body responds to different foods and my insulin and this will vary at different times of the day as well as with different foods.
Continuous Glucose Monitoring (CGM) would be very helpful to you, particularly with everything else that you have going on. If you don't have CGM, it is in the gift of your GP to prescribe this, but certain GPs haven't caught up with that changed NICE Guidance Note - so sometimes it isn't offered and (worse) denied because a GP doesn't know it could be offered. Let us know your status with CGM and we will try to guide you onto a route that gets you this essential bit of tech. The 2 more common systems are the Abbott Freestyle Libre 2, or the Dexcom One.

Do keep asking questions - no question is stupid and the hive like mind of this Forum's members invariably can find an answer (you've already seen some of that). You are not alone, unless you choose to be!
 
Proud to be erratic said:
You are welcome.

One other cautionary note: threads and responses in this forum about T2 aspects are NOT relevant to you. How T2s, who generally are not insulin dependent, manage their D is pretty different from those of us who are insulin dependent. So remarks about avoiding certain foods, or staying under certain daily carb totals and testing after 2 hrs (3 examples) won't apply to yourself - UNLESS they are in the context of managing your pancreatitis. Broadly without any pancreatitis issues you will be able to eat whatever you wish, whenever you wish - but you will need to master an insulin dosing regime to cover whatever the carb content is for your chosen food.

All of this D malarkey is complex and can feel very daunting. Stay calm; there is an endless amount of help available from this forum, from people who have been novices themselves and who have masses of first hand experience. Nurses in GP Surgeries who deal with the diabetic folks in that practice (often called the Diabetes Nurse) generally only deal with T2s and rarely with people who are insulin dependent. Hopefully you should be under the care of a Diabetes Specialist Nurse (DSN) who usually is only found in a Hospital team (in certain regions there can be DSNs in the community). You need a DSN who you can contact when you feel really adrift!

Glad you are on a basal/bolus system. This is sometimes referred to as Multiple Daily Injections (MDI).

@rebrascora asked a necessary question: Do you have Freestyle Libre or other CGM sensor to monitor your levels? I found this an invaluable tool in helping me to understand how my body responds to different foods and my insulin and this will vary at different times of the day as well as with different foods.
Continuous Glucose Monitoring (CGM) would be very helpful to you, particularly with everything else that you have going on. If you don't have CGM, it is in the gift of your GP to prescribe this, but certain GPs haven't caught up with that changed NICE Guidance Note - so sometimes it isn't offered and (worse) denied because a GP doesn't know it could be offered. Let us know your status with CGM and we will try to guide you onto a route that gets you this essential bit of tech. The 2 more common systems are the Abbott Freestyle Libre 2, or the Dexcom One.

Do keep asking questions - no question is stupid and the hive like mind of this Forum's members invariably can find an answer (you've already seen some of that). You are not alone, unless you choose to be!
Click to expand...
Just been looking onto a CGM and the Nice guidelines on the forum, I have a call with my GP on 30th May so will try to address this then, now I have some knowledge on the NICE guidelines. Once again thanks so much for the advice.
 
Welcome @Smileyc

Very pleased that you have found the forum, and that you are already tapping into the vast depth of experience available on here.

Balancing the food you choose to eat to an appropriate (for you - we are all different) insulin dose takes a bit of getting used to. You are on fixed doses at present, but your team have already put you on the flexible system of basal/bolus, and will no doubt work with you to work out your ratios, and then how to work out the dose for whatever you eat.

You will soon become familiar with the carbs in foods that you eat regularly and then it is a case of dealing with the more unusual meals. It gets easier and easier.

As others have said, just keep questions coming. No one minds and there is a wealth of experience to tap into. I look forward to hearing more from you.
 
If you don't have any success with your GP, as sadly some are not up to date with current prescribing of Libre or other CGM, try your hospital team and get back to us. Professor Partha Kar who is the lead clinician for diabetes within NHS England is prepared to advocate individually for people whose GPs are dragging their feet on this, so come back to us if you get a "NO" and we will help you turn it into a "Yes". In the mean time, you can apply to Abbott laboratories for a free 14 day trial of the Freestyle Libre system. ie one sensor. The only qualifiers are that you have diabetes and you have a suitable phone to scan it and the phone list is quite extensive I believe. You will find details on the Freestyle Libre website.
 
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