Type 3c newbie

[Mezza1964]

Hi all, I became a type 3c in August when I had my cystic pancreas removed & although it's very early days, I'm finding it daunting trying to manage my blood sugars from one meal to the next

 

[rebrascora]

Hello and welcome.

Sorry to hear you have had to part with your pancreas and therefore qualify to join our forum, but it is a great place to be for support and information, so I am pleased that you have found us.

Type 3c can cover quite a broad range of damage to the pancreas and a broad range of treatments as a result. Have you had a total removal or just partial?

Would you like to tell us which insulin(s) you are using and do you also take Creon or other pancreatic enzyme supplement?
Hopefully you have a Constant Glucose Monitor (CGM) to help to track your Blood Glucose (BG) levels but also a finger prick kit to double check the CGM when necessary.

I will tag a few of our regular 3c members who will I am sure be happy to share their experiences and compare notes with you.... @Proud to be erratic @soupdragon @Wendal @eggyg @martindt1606.

 

[Mezza1964]

Hi Barbara, I had all of the pancreas removed so am now on Novorapid for meals & Abasaglar in the evening, along with Creon
Yes, thank goodness I do have a CGM as well as the prick test kit, so that's definitely making life easier 🙂
Any advice will be gratefully received tho

 

[rebrascora]

Good to hear you have a basal(Abasaglar)/bolus(NovoRapid) insulin regime and CGM to help you monitor your levels. Do you have Libre 2(+) or Dexcom One?
Are you using fixed doses of NR with your meals or have you been taught to carb count and adjust your doses?
What have you been told about using Creon? ie How much to use and when? I believe doses vary between individuals much like insulin doses do and finding the right dose for you for particular meals can be a case of trail and improvement.

Type 3c can be more tricky and brittle than Type 1, so it is important not to have too high an expectation of yourself in getting everything right all the time or even most of the time. Type 1 is difficult enough and I know it was hard for me to accept that perfection is impossible and doing the best we can, is good enough, but we will get it wrong from time to time and that is OK and indeed normal. I think one of the great things about CGM is that we are only aiming to be in range 70% of the time and if you can work towards achieving that you are doing great, whereas with the previous guidelines of between 4 and 7 before meals, I felt that I was failing a lot of the time when I didn't hit those targets. Aiming for being in range 70% of the time is somehow acknowledging that hitting targets all the time is not possible with diabetes and therefore seems more achievable and less challenging or judgemental. Not sure if that makes sense to you but it is easy to be very self critical with diabetes management and focus more on the times you get it wrong than the times you get it right when we should be celebrating our achievements because impersonating a pancreas is an extremely tricky task, especially as we do not have control or even sight of all the factors involved.

Anyway, are there any particular issues that you are having problems with that we might be able to give you some tips on? Or any questions about things that you might not have picked up on from the nurses. I know my appointments were a bit of a blur and some, perhaps quite a lot of what was said, went in one ear and out of the other. The forum has been great for filling in those blanks, so don't feel awkward about asking anything. We all know how overwhelming it is, particularly in the first few months.

 

[soupdragon]

Welcome @Mezza1964 from another 3c. Sorry that you've had to join us, though.
I have a little bit of pancreas remaining after severe pancreatitis but it doesn't seem to be particularly useful.
Great advice from @rebrascora above about the difficulty of juggling food, insulin and Creon and also not aiming for perfection. Managing blood glucose levels will be particularly hard for you with no insulin or glucagon, especially at such an early stage.
Any particular problems at the moment that we can help with?

 

[everydayupsanddowns]

Welcome to the forum @Mezza1964

And welcome to our elite and cherished band of ‘Creonistas’.

Both @martindt1606 and @Proud to be erratic have had total pancreatectomies, so may be able to share their experiences.

We also have a range of other routes to 3c including various shades of pancreatitis, so you are in good company.

And yes, feeling daunted and overwhelmed is an entirely appropriate and understandable reaction!

 

[martindt1606]

@Mezza1964 welcome to the forum and to that rare band of diabetics with no pancreas who live with the vagaries and challenges of insulin and creon. I had my pancreas removed 14 years ago and have now progressed to closed loop for insulin management. I have been using creon for over 20 years and am currently seeing an endocrinologist for the first time….
Good to see you have a CGM it does make a massive difference, I’d also recommend that you commence discussions with your diabetes team to agree a pathway towards a pump and a closed loop solution once you have gained basic experience and knowledge of living with diabetes.
How long have you been using creon? I’ve seen in the recent creon shortage position statements that the neuroendocrine and pancreatic cancer charities are working with cystic fibrosis charities so would be good to learn more about how creon has helped in the past to fill in that gap in my creon knowledge.

 

[Mezza1964]

Good to hear you have a basal(Abasaglar)/bolus(NovoRapid) insulin regime and CGM to help you monitor your levels. Do you have Libre 2(+) or Dexcom One?
Are you using fixed doses of NR with your meals or have you been taught to carb count and adjust your doses?
What have you been told about using Creon? ie How much to use and when? I believe doses vary between individuals much like insulin doses do and finding the right dose for you for particular meals can be a case of trail and improvement.

Type 3c can be more tricky and brittle than Type 1, so it is important not to have too high an expectation of yourself in getting everything right all the time or even most of the time. Type 1 is difficult enough and I know it was hard for me to accept that perfection is impossible and doing the best we can, is good enough, but we will get it wrong from time to time and that is OK and indeed normal. I think one of the great things about CGM is that we are only aiming to be in range 70% of the time and if you can work towards achieving that you are doing great, whereas with the previous guidelines of between 4 and 7 before meals, I felt that I was failing a lot of the time when I didn't hit those targets. Aiming for being in range 70% of the time is somehow acknowledging that hitting targets all the time is not possible with diabetes and therefore seems more achievable and less challenging or judgemental. Not sure if that makes sense to you but it is easy to be very self critical with diabetes management and focus more on the times you get it wrong than the times you get it right when we should be celebrating our achievements because impersonating a pancreas is an extremely tricky task, especially as we do not have control or even sight of all the factors involved.

Anyway, are there any particular issues that you are having problems with that we might be able to give you some tips on? Or any questions about things that you might not have picked up on from the nurses. I know my appointments were a bit of a blur and some, perhaps quite a lot of what was said, went in one ear and out of the other. The forum has been great for filling in those blanks, so don't feel awkward about asking anything. We all know how overwhelming it is, particularly in the first few months.

I have a Libre & although I started with fixed NR doses, the DM nurses suggested I use the Carbs & Cals app to calculate the carbs & adjust accordingly........it seems some foods have a higher impact on my sugars than the carb count would suggest tho, so I'm trying to get to grips with that by keeping a food diary

I also seem to get a higher spike after breakfast rather than lunch/dinner, so I've increased the NR here too, but obviously any rise impacts the 'time in range'/avge glucose count & I'm not really sure how to combat these yet. As you say, with type 3c being brittle, I've had a few occasions where I've had a very sharp drop for which I've had to use 'rescue' carbs & I find I'd rather err on the higher side than risk a hypo (I stress about both tho, which I'm aware doesn't help)

I also try to walk when my sugars start rising, although sometimes this increases rather than decreases the reading. Further education is something I need as although the DM team are just a phone call away, I find they all have varying opinions on dosages, etc. In the hope of further education, I've filled out the questionnaire for the DAFNE course (although this appears to be for Type 1s only), & am just waiting to hear if/when I can start it.....has anyone here done it & did they find it helpful?

 

[martindt1606]

I have a Libre & although I started with fixed NR doses, the DM nurses suggested I use the Carbs & Cals app to calculate the carbs & adjust accordingly........it seems some foods have a higher impact on my sugars than the carb count would suggest tho, so I'm trying to get to grips with that by keeping a food diary

I also seem to get a higher spike after breakfast rather than lunch/dinner, so I've increased the NR here too, but obviously any rise impacts the 'time in range'/avge glucose count & I'm not really sure how to combat these yet. As you say, with type 3c being brittle, I've had a few occasions where I've had a very sharp drop for which I've had to use 'rescue' carbs & I find I'd rather err on the higher side than risk a hypo (I stress about both tho, which I'm aware doesn't help)

I also try to walk when my sugars start rising, although sometimes this increases rather than decreases the reading. Further education is something I need as although the DM team are just a phone call away, I find they all have varying opinions on dosages, etc. In the hope of further education, I've filled out the questionnaire for the DAFNE course (although this appears to be for Type 1s only), & am just waiting to hear if/when I can start it.....has anyone here done it & did they find it helpful?

Hi before my TP I had no knowledge of diabetes management and didn’t know anyone who used insulin. When I did DAFNE it was a one week course and I was in a room with 8 T1s. The course was invaluable due to its wide ranging content but sitting and hearing about the experiences of the other attendees was priceless. We do primarily need to think and live as a T1. However there are differences in how our blood glucose levels behave which means our Hab1c and time in range targets are less strict. I’ve been doing this for 14 years and it’s still confusing for example same thing for breakfast everyday but no two mornings are the same…. You seem to be doing well and I like that you are exercising rather than taking additional insulin. As you gain experience some things will become clearer (for example on DAFNE they will explain not all carbs are the same.

 

[Mezza1964]

@Mezza1964 welcome to the forum and to that rare band of diabetics with no pancreas who live with the vagaries and challenges of insulin and creon. I had my pancreas removed 14 years ago and have now progressed to closed loop for insulin management. I have been using creon for over 20 years and am currently seeing an endocrinologist for the first time….
Good to see you have a CGM it does make a massive difference, I’d also recommend that you commence discussions with your diabetes team to agree a pathway towards a pump and a closed loop solution once you have gained basic experience and knowledge of living with diabetes.
How long have you been using creon? I’ve seen in the recent creon shortage position statements that the neuroendocrine and pancreatic cancer charities are working with cystic fibrosis charities so would be good to learn more about how creon has helped in the past to fill in that gap in my creon knowledge.

Hi martindt1606, thank you!

I'm a little put off by the pump as most of my high readings are temporary, either due to mealtimes, or exercise, so I'd be worried that the pump would 'over-correct' them?

I've been using the Creon since my op in August this year & usually take 2 or 3 per meal, depending on what & how much I'm eating - this seems to be working for me, although I'm sure as my appetite returns, I may have to increase them, & so far the pharmacy has managed to fill the script with no probems...

 

[martindt1606]

For me having a pump made it easier to manage those temporary highs as I could define a basal pattern that is specific to my life style rather than one imposed by the slow acting insulin.
Over correcting / over thinking has only become an issue following the move to closed loop. Knowing your blood glucose every minute of the day could become overwhelming…
Creon is another challenge. I’m told that a pancreas produces over a million enzymes in response to a meal. - you are currently replacing this with 75,000. That’s fine as not all enzymes produced are used. I have progressed to 15 to 20 capsules per meal. Still less than half a pancreas would produce but enough for me.

 

[rebrascora]

Great to hear that you are carb counting and learning to adjust your doses. Yes, many of us respond differently to different types of carbs and it is very much a question of doing some experiments to figure out how to deal with them or even sometimes if they are worth bothering with at all. Porridge was like that for me, even with best quality jumbo oats. I could possibly get away with it in the evening when I am more insulin sensitive but in the morning when many of us are at our most insulin resistant, it was determined to spike me, so I found something else to have which I enjoy just as much if not more. Breakfast time is often the most challenging time for levels spiking and it is often more to do with prebolus timing (how far in advance of eating you inject) as insulin doses although many people need more insulin for the carbs they eat at breakfast than at other times of day, so they might use a 1:10 ratio for other meals but a 1:6 or 1:8 for breakfast. Again you have to experiment to see what works for you. I find injecting my breakfast insulin plus a couple of units to cover what we call Foot on the Floor syndrome, as soon as I wake up and before I get out of bed, helps the insulin to stay more or less in stride with the glucose that my liver pumps out as soon as I swing my legs out of bed and stand up and then I have about 30-40 mins depending upon my waking reading, to go the the loo and get washed and dressed and make my breakfast and get a coffee and by then the insulin is just starting to drop my levels and I can eat my breakfast. This prebolus timing varies for everyone and for their choice of breakfast. I used to need over an hour when I was first diagnosed and using Novo(not so 🙄)Rapid. Now I have a faster insulin and combined with injecting before I get out of bed, it is much easier to manage and if I am really lucky, some mornings, you can't even see breakfast on my graph, but mostly I manage to keep the spike below 8mmols. It has taken me about 5 years to master (well almost) it though, so don't expect miracles straight away.
The important thing is to err on he side of caution and make small adjustments every few days until you find the timing and dose that works for you and your insulin and your breakfast choice and lifestyle. For instance if you have to walk the dog before breakfast then definitely don't inject your breakfast insulin before you get out of bed!!