New Type 3C

[Kris85]

Hi There, my name is Kris and am type 3C from Distal Pancreatectomy. I currently struggle because I have pancreatic enzyme insufficiency and I struggle with hypoglycemia in the mornings particularly. Looking for some help from anyone that can give it. I am not too sure what to eat and how to treat it. I want to eat healthy and keep my sugars from surging too high, but then I get hypo Really struggling.

 

[Robin]

Hi There, my name is Kris and am type 3C from Distal Pancreatectomy. I currently struggle because I have pancreatic enzyme insufficiency and I struggle with hypoglycemia in the mornings particularly. Looking for some help from anyone that can give it. I am not too sure what to eat and how to treat it. I want to eat healthy and keep my sugars from surging too high, but then I get hypo Really struggling.

Hi, Kris, and welcome to the forum. I'll flag this up for @eggyg who is our resident expert, having had a Distal Pancreatectomy herself, so hopefully she will be along with some help.

 

[Ljc]

Hello @Kris85 . Welcome to the forum. Sorry I can’t help. But a little more info may help others to give you the most appropriate advise.
What medications are to on.

When you say you have hypo’s in the morning is that on waking or later in the morning .

We normally treat hypo’s with around 15 g of carbohydrates something sugary ie full sugar coke, fruit juice, glucose tablets, jelly babies etc but nothing fatty ie chocolate as the fat slows absorption of the carbohydrates down too much.
We test our BGs every 15 minutes and re treat as necessary until we get to 4.0 .

If you put Creonistas into the search box and tick titles only you will come across several threads that you may find helpful.
Also do a search on here for 3c

 

[rebrascora]

Hi and welcome from me too.
Can't help with experience of Type 3c specifically but it would help to know which insulins you are on (hopefully a basal/bolus system) and how and when they are delivered and as mentioned, more info about when the hypos happen ie before you wake up or before breakfast or after breakfast and if after breakfast, it might help to know what you normally eat?

 

[Kris85]

Hello @Kris85 . Welcome to the forum. Sorry I can’t help. But a little more info may help others to give you the most appropriate advise.
What medications are to on.

When you say you have hypo’s in the morning is that on waking or later in the morning .

We normally treat hypo’s with around 15 g of carbohydrates something sugary ie full sugar coke, fruit juice, glucose tablets, jelly babies etc but nothing fatty ie chocolate as the fat slows absorption of the carbohydrates down too much.
We test our BGs every 15 minutes and re treat as necessary until we get to 4.0 .

If you put Creonistas into the search box and tick titles only you will come across several threads that you may find helpful.
Also do a search on here for 3c

Thank you for your reply. So, I currently take Creon as well as Metformin ER 500mg daily.
What I mean by mornings, you're right I should have been more clear 🙂 So this is my day yesterday, and it might help understand where I'm at. I wake up and I'm good, around 5.8. I eat, two pieces of whole grain toast, egg, cheese and 500ml water, two hours later I'm at 5.3. At 11:57 I felt weird and knew I was going low, it was 3.0. I eat 15g carbs (Glucose tabs for a quick lift) and checked 15 minutes later, 2.9. 15g carbs more, 15 mins later 3.2, drink half a regular coke and make a sandwich because lunch is a ways away, and I get a whopping 3.8! I cannot seem to get this sugar to rise! With drinking the rest of the coke and the sandwich starting to digest, by 1:15pm I finally get to 5.6, the sugar and the sandwich starting to work its magic. I had a decent lunch and my sugar starts to rise, 7.6 2 hours later. Pre dinner, 8.4, after dinner 10.1, before bed 12.8. Now the sugar just keeps rising through the night until about 3am (hits 17.9) where it starts to go down FAST so that I wake up at 5.8 or so and start the cycle again.
It's like when I get low, the things I am putting in my body are not reacting fast enough, then later in the day, my pancreas gives up and the sugar wont go down. I keep thinking it is something I am doing wrong, the meals I make are not enough, or the wrong thing. Plus, when you get low, you feel so terrible and you are so desperate to feel a little better to deal with it, that you will just eat or drink anything...
I'm kind of hoping that someone goes through this too, or has heard of it, or can even identify where I am going wrong. I have a Continuous Glucose Monitor and am currently taking Metformin to see some results, but the Endocrinologist may give me a short acting insulin starting in Feb when I have an appt with him.

Creonistas. I like it 🙂)

 

[Kris85]

Hi, Kris, and welcome to the forum. I'll flag this up for @eggyg who is our resident expert, having had a Distal Pancreatectomy herself, so hopefully she will be along with some help.

Thank you! Resident experts sound good to me! I have read a few threads on the forums and I have learned a lot, it's been nice. Hard to find too much information for my condition.

 

[eggyg]

Hi @Kris85 I’m the “ resident expert”! Thanks @Robin, no pressure! I’ve never met anyone else who has had a distal pancreatectomy. I had mine 13 years ago! Firstly can I ask, how long ago was your op? Did you become diabetic straight away? Type 3c is a relatively new type, in so much it’s always been there but no one understood it or named it. I can’t relate to the morning hypos at all I’m afraid. I didn’t become diabetic for three years as my pancreas was obviously still working. (Although I did take Creon even before my operation). When I did I was pigeon holed type 2, told to diet, exercise and take Metformin. My BGs just went up! I’m on insulin now. I have read that Creon can interfere with BGs but as I was taking it for three years before becoming diabetic I don’t know any different I suppose. I really don’t feel like I’m much help, what do your docs say about it? Could it possibly be reactive hypoglycaemia? I don’t know much about it but non diabetics get it, your body produces too much insulin after a meal ( usually high carb) causing hypos. I’m no expert but it sounds like your pancreas doesn’t know whether it’s coming or going! Mine is dead now, which truth be told is much better, I almost wish they’d taken the blooming lot! It might sound counter intuitive but cut right down on your carbs, bang goes the wholemeal bread, or any other type TBF. You possibly could be “feeding” your pancreas every time you have a hypo remedy and it’s spluttering insulin out to cover the sugar! This is all supposition but kinda makes sense. I won’t lie it isn’t the easiest of diabetes to have but hey, I’m still here, living life to the full. Did they whip your spleen out too? They did mine and it means I’ll get my Covid vaccine very soon, although I have to shield which is pants! Any questions ask away, although I’m only an expert in my diabetes I will try and help. Elaine.

 

[rebrascora]

So are you saying at the moment that you don't inject any insulin at all and you are still going low or did I miss something?
If so, as @eggyg says it may be reactive hypoglycaemia and eating small regular low carb meals may help.

The CGM you have, is that a freestyle Libre or something else? Are you aware that there is a delay between your BG levels coming up and the interstitial fluid which the sensor reads catching up.... Just wonder if you might be over treating by not waiting long enough. Do you finger prick when you go low to check that levels are a) as low as the CGM suggests and b) that they have come up but the CGM is delayed in registering it.

If I misunderstood and you are using a long acting insulin (basal insulin) the dose may be too high.

Are you aware that glucose absorption starts in the mouth, so if your digestive system is slow, you might be better chewing glucose tablets until they dissolve in your mouth to get a faster result than a quick chew and swallow. Something to try anyway.

 

[Kris85]

Hi @Kris85 I’m the “ resident expert”! Thanks @Robin, no pressure! I’ve never met anyone else who has had a distal pancreatectomy. I had mine 13 years ago! Firstly can I ask, how long ago was your op? Did you become diabetic straight away? Type 3c is a relatively new type, in so much it’s always been there but no one understood it or named it. I can’t relate to the morning hypos at all I’m afraid. I didn’t become diabetic for three years as my pancreas was obviously still working. (Although I did take Creon even before my operation). When I did I was pigeon holed type 2, told to diet, exercise and take Metformin. My BGs just went up! I’m on insulin now. I have read that Creon can interfere with BGs but as I was taking it for three years before becoming diabetic I don’t know any different I suppose. I really don’t feel like I’m much help, what do your docs say about it? Could it possibly be reactive hypoglycaemia? I don’t know much about it but non diabetics get it, your body produces too much insulin after a meal ( usually high carb) causing hypos. I’m no expert but it sounds like your pancreas doesn’t know whether it’s coming or going! Mine is dead now, which truth be told is much better, I almost wish they’d taken the blooming lot! It might sound counter intuitive but cut right down on your carbs, bang goes the wholemeal bread, or any other type TBF. You possibly could be “feeding” your pancreas every time you have a hypo remedy and it’s spluttering insulin out to cover the sugar! This is all supposition but kinda makes sense. I won’t lie it isn’t the easiest of diabetes to have but hey, I’m still here, living life to the full. Did they whip your spleen out too? They did mine and it means I’ll get my Covid vaccine very soon, although I have to shield which is pants! Any questions ask away, although I’m only an expert in my diabetes I will try and help. Elaine.

I hadn't even heard of a Distal until mine, I joined a FB group and that's where I met a lot of other people all over the world who have had this surgery. Who knew? So my surgery was Dec 2019, so just over a year, my sugar ran high right after surgery and then by April 2020 was too high and they got concerned and sent me to the dietician and the endo. There they decided to keep and eye on it. It seems to be getting worse as the year progresses. With COVID and all the lockdowns, I can't get the resources I need. They want to pigeon hole me into type 2 also, but there are defined differences between and type 2 and myself, yet the health care team struggles to understand me. I had heard that Creon interfered with blood sugar, but my endo told me that it would increase my blood sugar, not decrease it, but I have heard of others who have had low sugars from Creon, but you would think you would struggle with low every day, all day, not just morning...
I shall look into reactive hypoglycemia for sure. I don't know a lot about that. It's true, the remaining part of my pancreas has no idea whether it is coming or going, I only have 30 percent remaining and at first I thought maybe it was struggling with my new norm, now I just feel it is spasmodic and needs a chill pill lol.
You're theory does make sense, I will have to research those ideas and see what I can come up with. Hopefully a solution, like I said, I felt like maybe my diet was all wrong, but with the information I got from the nutritionist, I am actually doing the right thing, and that's why this is so confusing.
Other than the diabetes issue, I am living a totally normal life, popping Creon with my meals, not so hot for a single girl on a first date 🙂 No, they left my spleen, but it is enlarged, so there is talk about it, but again COVID and lockdowns make everything difficult. I will also receive a vaccine soon as I work in healthcare. Looking forward to the day when we can all return to normal, or close to normal, living.
Thank you for all your help Elaine, it is always nice to hash things out with people who get it, instead of doctors who don't get you!

 

[trophywench]

Are you aware that glucose absorption starts in the mouth, so if your digestive system is slow, you might be better chewing glucose tablets until they dissolve in your mouth to get a faster result than a quick chew and swallow. Something to try anyway.

Yes!

 

[Kris85]

So are you saying at the moment that you don't inject any insulin at all and you are still going low or did I miss something?
If so, as @eggyg says it may be reactive hypoglycaemia and eating small regular low carb meals may help.

The CGM you have, is that a freestyle Libre or something else? Are you aware that there is a delay between your BG levels coming up and the interstitial fluid which the sensor reads catching up.... Just wonder if you might be over treating by not waiting long enough. Do you finger prick when you go low to check that levels are a) as low as the CGM suggests and b) that they have come up but the CGM is delayed in registering it.

If I misunderstood and you are using a long acting insulin (basal insulin) the dose may be too high.

Are you aware that glucose absorption starts in the mouth, so if your digestive system is slow, you might be better chewing glucose tablets until they dissolve in your mouth to get a faster result than a quick chew and swallow. Something to try anyway.

You're right, I do not inject insulin at all at this point. I have an Endo appt in Feb at which time we are going to make decisions regarding insulin and diet etc. I had tried the low carb meals more often and to be honest, it didn't change very much. In addition, I work a very busy job and I find it difficult to take the time to eat so often, which I know is to my own detriment, but a reality of my life. Yes my CGM is a Freestyle Libre, I also have a finger prick BGM which I use when I feel low. The readings I record are from the BGM not the CGM.
You're right, the glucose tabs in my mouth def work better, but the delay is still there, and because I feel so horrible, I rush into something like reg coke to start feeling better sooner. I often feel like my legs are going to give out and I'll end up on the floor.
I suppose, the real thing I would like to solve is this, can I do something in the morning to prevent the low from happening, and if so, will that prevent the highs I experience throughout the rest of the day?
Thank yo ufor taking time to repy to me, I truly appreciate all the help I can get, because this is confusing to me 🙂

 

[rebrascora]

Have you tried fasting in the morning and just having lunch... maybe just a cup of coffee, to see what happens? ... I don't know if this is a bad idea for a Type 3c and you perhaps need to eat regular meals... maybe @eggyg would know if this is not appropriate to experiment with for a Type 3c

 

[rebrascora]

Definitely sit down whilst you are having a hypo if you feel your legs are going to buckle.... You are no good to anyone if you hit the deck, so take time out to recover properly.

 

[Kris85]

Have you tried fasting in the morning and just having lunch... maybe just a cup of coffee, to see what happens? ... I don't know if this is a bad idea for a Type 3c and you perhaps need to eat regular meals... maybe @eggyg would know if this is not appropriate to experiment with for a Type 3c

You know, I had thought of this, because I have this idea that perhaps my pancreas is being "triggered" if you will, to work because I have eaten something, and maybe might be quite content if I don't eat, especially considering that I am not currently using insulin... it's a good thought. I mean if I go low, I will anyways, so in the end if it doesn't work, it's the same result 🙂

 

[eggyg]

I hadn't even heard of a Distal until mine, I joined a FB group and that's where I met a lot of other people all over the world who have had this surgery. Who knew? So my surgery was Dec 2019, so just over a year, my sugar ran high right after surgery and then by April 2020 was too high and they got concerned and sent me to the dietician and the endo. There they decided to keep and eye on it. It seems to be getting worse as the year progresses. With COVID and all the lockdowns, I can't get the resources I need. They want to pigeon hole me into type 2 also, but there are defined differences between and type 2 and myself, yet the health care team struggles to understand me. I had heard that Creon interfered with blood sugar, but my endo told me that it would increase my blood sugar, not decrease it, but I have heard of others who have had low sugars from Creon, but you would think you would struggle with low every day, all day, not just morning...
I shall look into reactive hypoglycemia for sure. I don't know a lot about that. It's true, the remaining part of my pancreas has no idea whether it is coming or going, I only have 30 percent remaining and at first I thought maybe it was struggling with my new norm, now I just feel it is spasmodic and needs a chill pill lol.
You're theory does make sense, I will have to research those ideas and see what I can come up with. Hopefully a solution, like I said, I felt like maybe my diet was all wrong, but with the information I got from the nutritionist, I am actually doing the right thing, and that's why this is so confusing.
Other than the diabetes issue, I am living a totally normal life, popping Creon with my meals, not so hot for a single girl on a first date 🙂 No, they left my spleen, but it is enlarged, so there is talk about it, but again COVID and lockdowns make everything difficult. I will also receive a vaccine soon as I work in healthcare. Looking forward to the day when we can all return to normal, or close to normal, living.
Thank you for all your help Elaine, it is always nice to hash things out with people who get it, instead of doctors who don't get you!

I’ve been trying to get doctors to get me for 13 years! They basically don’t have a clue about our sort of diabetes. We don’t fit into any pigeon hole so they just leave us to it. It took me 8 years until someone took me seriously, it was a diabetes specialist nurse at the diabetes clinic. I only got an appointment there after years of nagging the diabetes “ specialist” nurse at my surgery. I cried because at last someone understood. I would say do as much research as you can and you will end up knowing more than any HCP. I would say try what Barbara mentioned, fasting on a morning, it won’t do any harm as you’re not on insulin. If you’re hungry just eat protein, no carbs at all, no fruit, no juice anything. Fingers crossed your teeny tiny bit of pancreas will sort it’s self out, eventually. PS I would think the Creon on a first date would be a good icebreaker! Good luck and keep in touch. Elaine.

 

[Kris85]

I’ve been trying to get doctors to get me for 13 years! They basically don’t have a clue about our sort of diabetes. We don’t fit into any pigeon hole so they just leave us to it. It took me 8 years until someone took me seriously, it was a diabetes specialist nurse at the diabetes clinic. I only got an appointment there after years of nagging the diabetes “ specialist” nurse at my surgery. I cried because at last someone understood. I would say do as much research as you can and you will end up knowing more than any HCP. I would say try what Barbara mentioned, fasting on a morning, it won’t do any harm as you’re not on insulin. If you’re hungry just eat protein, no carbs at all, no fruit, no juice anything. Fingers crossed your teeny tiny bit of pancreas will sort it’s self out, eventually. PS I would think the Creon on a first date would be a good icebreaker! Good luck and keep in touch. Elaine.

It's so weird, it's so obvious, yet they are resistant to considering that we are different than type 2 lol. You are lucky to have found someone who is familiar with what you are dealing with. My Endo is pretty good, but I only see him every three months, and event then, with COVID, I don't "see" him per se. However he does deal with people who have diabetes because of surgery like mine, so that is comforting. I am def going to try the fasting thing and see what happens 🙂)
Creon+ Icebreaker, you're probably right 🙂

 

[rebrascora]

I am not by any means an expert on the workings of the pancreas or the communication between the pancreas and the liver but there are mechanisms for turning the insulin producing beta cells on and off and I wonder if the "off function" has been damaged in your surgery and/or your circadian rhythm has been affected somehow (You don't work shifts do you?) and this is somehow causing the problem in the morning but oddly not after other meals.

Please update us with any fasting experiments you do. I find a chunk of cheese or a boiled egg with no toast/bread or any other carbs quite filling if you can't get by without anything to eat and get hungry or just cream in my coffee makes me feel satisfied..... my coffee with cream is my daily luxury... although I don't know how your 3c copes with fat?

 

[Kris85]

I am not by any means an expert on the workings of the pancreas or the communication between the pancreas and the liver but there are mechanisms for turning the insulin producing beta cells on and off and I wonder if the "off function" has been damaged in your surgery and/or your circadian rhythm has been affected somehow (You don't work shifts do you?) and this is somehow causing the problem in the morning but oddly not after other meals.

Please update us with any fasting experiments you do. I find a chunk of cheese or a boiled egg with no toast/bread or any other carbs quite filling if you can't get by without anything to eat and get hungry or just cream in my coffee makes me feel satisfied..... my coffee with cream is my daily luxury... although I don't know how your 3c copes with fat?

That's a good thought about the Beta Cells. I will add it to the growing list of things to research. Thank goodness I came upon this forum! I don't work shift work 8-4 daily for me 🙂 That breakfast actually sounds pretty close to what I eat, minus my bread. I am going to try in Monday. I am going on a hike tomorrow and don't want to mess with it and then go out and get all jiggly legs 🙂 I don;t like coffee myself, aside from the odd tea I literally just drink water... I'm not very exciting 🙂 Plus, I do take Creon, so the fat isn't too much of an issue. Do you think tea would be ok?

 

[rebrascora]

I'm pretty sure having tea at breakfast time will not impact the "extended fasting" experiment, but if you are not going to be eating, I don't think you will need creon... hopefully someone will correct me if I am wrong on that.... was just thinking if you were having cream in coffee, that might need some.
Do you keep a food diary along with your readings? That can be really helpful, particularly when you are experimenting to see what works or doesn't. With diabetes, a one off result is rarely worth giving much credibility to as there are so many factors which affect BG levels other than food, so you are usually looking more for trends than individual test results. For instance, your walking tomorrow will almost certainly impact your readings tomorrow morning as your muscles can take up to 24 hours to claw back their reserves from your blood stream. So if you fast Monday morning and still drop low it is just as likely to be the after effects of your walk tomorrow as a reflection that the fasting test failed. I find exercise has a very significant but delayed effect on my levels.

 

[trophywench]

The effect of exercise lasts approx 48 hours. My clinic used to say (jokingly I stress!) that they advised Type 1s to only exercise every other day.