Any Type 3C people out there?

Pam*

Active Member
Messages
32
Type of diabetes
Type 3c
Treatment type
Insulin
Dear Pam,

I have just read your message and response with much interest and I have a lot of empathy for you.

I also have a similar problem and take both insulin and Creon to help the rather defunct Pancreas I have now due to auto immune problems. I agree it’s so difficult to smooth out the peaks and troughs and sometimes it can be very demoralising. But there is always hope.

This year I went on what the specialists name a DAFNE course ( dose adjustment for normal eating ) it was excellent and gave me an insight as to how to use insulin more effectively, both the long acting and rapid acting. I was also fitted with a Libre 2 disc which enables monitoring the Sugar levels more effectively and timely.

It is difficult to assess what to inject and and monitor what you eat when out and about and that can only come with time. I purchased a pair of scales for the kitchen when at home which, by entering a food code and then weighing the food they calculate and inform me exactly how many grams of Carbs I am eating. So by using the Scales going on the DAFNE course and having the Libre 2 disc fitted has helped me produce better results than before. My Ha1bc was 88 mmol but now I have been able to reduce that down to 55 mmol a better but not perfect result

It will never be perfect but if we can improve our readings just a little, I would say every little thing we do helps.

Hope this helps you a little. Fingers crossed.
I'm so sorry Nick Ive only just seen your reply - a month late. Unfortunately the DAFNE course is not available where I live unless I travel a long way. I did an online course though that was similar.
I also use kitchen scales and weigh absolutely everything at home to work out the carbs. I even have a small set in my campervan :)
My last Ha1bc was 53 mmol (7%) so could be better but not too bad.
I find bread spikes me a lot. I bought some Hilo bread in Sainsburys as it is only 5 carbs per slice BUT it still spikes me. Best Ive found is sourdough but cant always find it. I totally avoid pasta & rice but small baked potatoes seem ok.
My go to when I'm low BG are jelly babies, orange juice or 150ml can of Coke (not diet one)
Any tips greatly received. I'm still a novice with a lot to learn even though Ive now been diabetic for 21 months.
 

Steve 007

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Hi Pam and Nick, I can equally recommend the DAFNE course - Pam, did you do the DAFNE online or was it another type - DAFNE is available via the OU to do online at your own pace, your local support should be able to send you the link & login details. Provided you’ve carb counted OK, do not worry about spikes - it’s normal. They key is to target you BG for the next meal/overnight. If you’re say 7 at breakfast time, if you’ve counted carbs and injected accordingly your target will be to be 7 by lunchtime. Likewise if you’re 11 at breakfast and you aim to be 7 by lunchtime, then you may have to add a unit of insulin to breakfast to accommodate carbs going in and aiming to get to 7 by lunch.
 
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Pam*

Active Member
Messages
32
Type of diabetes
Type 3c
Treatment type
Insulin
Hi Pam and Nick, I can equally recommend the DAFNE course - Pam, did you do the DAFNE online or was it another type - DAFNE is available via the OU to do online at your own pace, your local support should be able to send you the link & login details. Provided you’ve carb counted OK, do not worry about spikes - it’s normal. They key is to target you BG for the next meal/overnight. If you’re say 7 at breakfast time, if you’ve counted carbs and injected accordingly your target will be to be 7 by lunchtime. Likewise if you’re 11 at breakfast and you aim to be 7 by lunchtime, then you may have to add a unit of insulin to breakfast to accommodate carbs going in and aiming to get to 7 by lunch.
Thanks for your reply Steve.
I did this online course. My Type 1 Diabetes Online Courses.
It's all I was offered. I would like to do the DAFNE course so I will ask my diabetes team if I can have a link to the OU.
I count carbs religiously for every meal, even working them out for things like gravy. Its become a nightmare really and rules my life. If I stick to very low carb meals all day then I can often stay more or less in target.... but I do eat carbs :confused:.
My Nova Rapid seems to take ages to actually work so by the time it does Ive often rocketed up into the red zone. I do add on units of insulin if Im high at my next meal. I was going to try and take my insulin 20 mins before I eat but I nearly always forget. My team told me to take it immediately before I eat.
Lately I have been going low at bedtime so I reduced my Tresiba Degludec by 1 unit. Im on 14 units a day now. Doesnt seem to have made any difference and its day 5 now of trying that.
Couple of weeks ago I was going high at bedtime, if it was up to 12 I just drank water and crossed my fingers it would come down. When over 14 I had a unit of NR insulin, over 18 Id have 2 units, but it might take up to 2 hours to come down. Other times it would crash down in 20 minutes. I can never tell what it will do :rolleyes:
 

Steve 007

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
There’s nothing wrong with eating carbs - According to Libre I have averaged 204 carbs a day over the past 2 weeks with an average of 24 QA units a day and 16 slow release, and that’s eating as normal as I can. DAFNE suggest (see attached) novorapid needs to be injected 15mins before a meal, hits its peak between 50 & 90mins but hangs around for between 2-5hrs. I hate the jab before 15mins idea, so I’ve been put on Fiasp which supposedly starts working straight away-only time will tell, but it should save me some grief!. May be worth discussing with your team. We were told, 1 unit of insulin lowers sugars by 2-3mml, so if I’m 12 at bed I’ll consider 1 or 2 units to get it to around 6-8, and while the concept is the same for most people, everybody is slightly different so chat to your team
Sounds like you’ve got similar frustrations to a lot of us but this forum is excellent for support and understanding. I struggle with eating out and carb counting with buffet style meals - especially abroad, and understanding alcohol and it’s impact just does my head in, but we’ll all get there with support.
 

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Pam*

Active Member
Messages
32
Type of diabetes
Type 3c
Treatment type
Insulin
There’s nothing wrong with eating carbs - According to Libre I have averaged 204 carbs a day over the past 2 weeks with an average of 24 QA units a day and 16 slow release, and that’s eating as normal as I can. DAFNE suggest (see attached) novorapid needs to be injected 15mins before a meal, hits its peak between 50 & 90mins but hangs around for between 2-5hrs. I hate the jab before 15mins idea, so I’ve been put on Fiasp which supposedly starts working straight away-only time will tell, but it should save me some grief!. May be worth discussing with your team. We were told, 1 unit of insulin lowers sugars by 2-3mml, so if I’m 12 at bed I’ll consider 1 or 2 units to get it to around 6-8, and while the concept is the same for most people, everybody is slightly different so chat to your team
Sounds like you’ve got similar frustrations to a lot of us but this forum is excellent for support and understanding. I struggle with eating out and carb counting with buffet style meals - especially abroad, and understanding alcohol and it’s impact just does my head in, but we’ll all get there with support.
Thanks Steve. Interesting Dafne sugests to inject 15 mins before eating. I will try and remember to do that. I think it might help.
I was told 1 unit of insulin will lower my BG by 4mml and not to inject on a high (without food) unless over 14. So 1 unit if 14, and 2 units if 18. I do sometimes inject even if lower than 14 though to get a nights sleep without the alarms going off.
I agree eating out is a nightmare. I have a fully inclusive holiday abroad booked for this year so will have to wing it :confused: . Wondering if injecting some before the meal then injecting again afterwards when I have guessed the carbs Ive eaten might work. I'll be having a few drinks too and I know that useually lowers my BG so long as its not high sugar cocktails :joyful:
Do you use ratios? Im still trying to get mine right so tweak them. I'm 5% for breakfast but if I eat bread its more like 4%. Then 10% at lunchtime and 15% at dinner time.
 

Steve 007

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
We’re all inclusive in April, so that’s when the readings will go crazy, oh and my libre normally dies when I’m abroad for some random reason - but it’s all worth it, provided you’re prepared.
My QA ratio is a flat 1unit to 10grms of carbs, and then 16units once a day of slow release. Other than when I abuse it (ie all inc hols) the ratio seems pretty spot on. Good to see you’re not letting diabetes rule your life and still having hols - that’s good for your wellbeing, even if you have to juggle things while there - continue enjoying.
 
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Messages
7
Type of diabetes
Type 3c
Treatment type
Insulin
Heya
I have type 3c after developing severe acute pancreatitis in Aug 2021. I take Metformin, Empagliflozin, Creon with the stuff I eat and a Toujeo Insulin baseline. I'm also prescribed the Libre 2 sensor as I'm non-symptomatic. I would love to chat with anyone who is in a similar position to me.
 
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Kaydee59

Member
Messages
24
Type of diabetes
Type 3c
Treatment type
Insulin
Heya
I have type 3c after developing severe acute pancreatitis in Aug 2021. I take Metformin, Empagliflozin, Creon with the stuff I eat and a Toujeo Insulin baseline. I'm also prescribed the Libre 2 sensor as I'm non-symptomatic. I would love to chat with anyone who is in a similar position to me.
Happy to chat. I also have Type 3C which was originally diagnosed as Type 2. After a severe bought of pancreatitis in 2020 they discovered I had a slow growing tumour (neuro endocrine tumour (NET)) which I had had probably the 10 years I had been diabetic. This tumour was killing off my pancreas hence the lack of insulin being produced. In 2021 they removed my pancreas and spleen so now I have to take Metformin, Empagliflozin, insulin and creon with meals and Tresiba as my basal insulin. I too wear a Libre 2 sensor.
 

nicky762

Newbie
Messages
2
Type of diabetes
Type 3c
Treatment type
Insulin
Heya
I have type 3c after developing severe acute pancreatitis in Aug 2021. I take Metformin, Empagliflozin, Creon with the stuff I eat and a Toujeo Insulin baseline. I'm also prescribed the Libre 2 sensor as I'm non-symptomatic. I would love to chat with anyone who is in a similar position to me.
Hi.
I had necrotising pancreatitus 12 years ago due to gallbladder. Had that removed.
On Creon. Toujeo. Metfornin and humalog.
I have the Libre 2 sensor since Aug 2023.
And I'm now 45 (normal).
 

Steve 007

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Heya
I have type 3c after developing severe acute pancreatitis in Aug 2021. I take Metformin, Empagliflozin, Creon with the stuff I eat and a Toujeo Insulin baseline. I'm also prescribed the Libre 2 sensor as I'm non-symptomatic. I would love to chat with anyone who is in a similar position to me.
 

Steve 007

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Hi, your time line is similar, type3c since unknown gallstones decided to visit pancreas. Started on and still on toujeo, recently moved to quick acting Fiasp, recent med review that cut omeprezole down by 75% a day which is a result. Sugars generally in control, but still struggle with alcohol in beer, as all the books say alcohol can cause hypos but my sugars in the main go the other way. Read the news yesterday about this new artificial pancreas sensor/pump thing, which I’d like to be offered but not holding breath as I can’t see it being offered general within the quoted 5yr.
 

Jane 1973

Member
Messages
9
Type of diabetes
Family member
Treatment type
Non-insulin injectable medication (incretin mimetics)
Hi, due to type3c not being well known it seems to be common that you get diagnosed with type2 when you have type3c. Type3c is related to levels of damage to the pancreas, so in my case i have no pancreas function, therefore i am insulin dependant and take Creon with meals, i have unpredictable large swings in my blood glucose levels, hyperglycaemia and hypoglycaemia, my digestions is still a work in progress. Have the doctors told you how much pancreas function you currently have? Are you monitoring your blood glucose levels? Are you taking metformin or injecting insulin?
Morning I hope you are well I wanted to reach out to you as my husband is in the same position as you and wanted to know how your draling with things,?
 

Jane 1973

Member
Messages
9
Type of diabetes
Family member
Treatment type
Non-insulin injectable medication (incretin mimetics)
Happy to chat. I also have Type 3C which was originally diagnosed as Type 2. After a severe bought of pancreatitis in 2020 they discovered I had a slow growing tumour (neuro endocrine tumour (NET)) which I had had probably the 10 years I had been diabetic. This tumour was killing off my pancreas hence the lack of insulin being produced. In 2021 they removed my pancreas and spleen so now I have to take Metformin, Empagliflozin, insulin and creon with meals and Tresiba as my basal insulin. I too wear a Libre 2 sensor.
Good morning I hope you are ok, just reading your previous post and I wanted to contact you as my husband has a NET in his pancreas with mets in his liver,he’s currently in hospital after a severe hypo at the weekend,no one seems to know what to do as he now needs to be on a glucose drip constantly, did you experience anything like this? I’m desperate to find any answers! Thanks
 

Jane 1973

Member
Messages
9
Type of diabetes
Family member
Treatment type
Non-insulin injectable medication (incretin mimetics)
Good morning I hope you are ok, just reading your previous post and I wanted to contact you as my husband has a NET in his pancreas with mets in his liver,he’s currently in hospital after a severe hypo at the weekend,no one seems to know what to do as he now needs to be on a glucose drip constantly, did you experience anything like this? I’m desperate to find any answers! Thanks
 

melbells

Newbie
Messages
1
Type of diabetes
Type 3c
Treatment type
Other
Dislikes
Sun, Doctors, Doctors instructions
Me got 3C as welll. Mine is from Pancreatitis which put me in a Coma. Wasn’t told I was diabetic until 2 months later when I had a DKA. Had another Pancreatitis. Found out after that I have Pancreatic Divisum. Currently I’m taking Sukkarto, Tresiba & NovoRapid. My current HBa1c 76, so my insulin currently is going higher and higher
 
Messages
14
Type of diabetes
Other
Treatment type
Insulin
HI everyone , I was diagnosed type 3c march 2023, it's been a nightmare ever since.
Gastro specialist, liver specialist 2 different diabetic teams I was 80kg last March and now fluctuating between 92kg and 97kg
After seeing the diabetic team linked to the liver team they've told me I need to loose weight but won't prescribe injectables like victoza as they aren't licensed for "type 1's"
I am struggling with mobility as I had an accident 3 years ago and broke all my ribs- 5 of them have fused with nerves between them plus ascites and odema from pancreas issues.
I feel like I'm going round in circles, trying to loose weight - just had a phone call from diabetic nurses who I asked if I could try a high protein low carb diet was told no because I need insulin with meals containing carbs, yet they've repeatedly told me if I don't eat carbs in a meal I shouldn't take any insulin.
Has anyone tried a vlcd or Aitkens type diet whilst having 3c?
The additional weight is adding to my issues and causing everything combined to really effect my mental health.
Tia to anyone who can offer any insight, advice or even just reads my post
:)
 

Peanut234

Well-Known Member
Messages
67
Type of diabetes
Type 3c
Treatment type
Insulin
HI everyone , I was diagnosed type 3c march 2023, it's been a nightmare ever since.
Gastro specialist, liver specialist 2 different diabetic teams I was 80kg last March and now fluctuating between 92kg and 97kg
After seeing the diabetic team linked to the liver team they've told me I need to loose weight but won't prescribe injectables like victoza as they aren't licensed for "type 1's"
I am struggling with mobility as I had an accident 3 years ago and broke all my ribs- 5 of them have fused with nerves between them plus ascites and odema from pancreas issues.
I feel like I'm going round in circles, trying to loose weight - just had a phone call from diabetic nurses who I asked if I could try a high protein low carb diet was told no because I need insulin with meals containing carbs, yet they've repeatedly told me if I don't eat carbs in a meal I shouldn't take any insulin.
Has anyone tried a vlcd or Aitkens type diet whilst having 3c?
The additional weight is adding to my issues and causing everything combined to really effect my mental health.
Tia to anyone who can offer any insight, advice or even just reads my post
:)
Hi @christmasfairy1

This may not be helpful, but Im in the sameish boat. So - you are not alone:)

Diagnosed December 2023, weight gain into the same range as you, liver unhappy, mobility issues - im waiting on hip surgeries x2. ive been told all the injectables for weight loss can cause pancreatitis so not good for us 3c's, and the metformin makes my liver numbers go up.
I have been trying to swim, but it makes be sooooo hungry!
I've been trying to make small changes including low carb breakfast. Usually quiche at the moment, I try and make a big batch on sundays.
Im greatful that I am a candidate for surgery, and that my mobility should increase eventually, although the swimming is mentally difficult to drag myself to, I come out with a smile, and some pain relief which is nice. There are also a group of friendly regulars too, most of whom are a similar shape as me, which is reassuring. This swimming has also increased my general fitness and lung capacity, and reduced breathlessness after going up stairs which is positive.
I agree, this all takes a toll on the mental health - I want to be doing 'normal' things, and feel a bit useless.
I'm at a point where I can see that the insulin itself is increasing my weight - as I was warned it would, and I think I need to focus on trying to reduce my intake/portion sizes of 'pointless' carbs eg white rice, rice noodles etc, and reduce the snacking. If I can find the self control...
Anyway, enough about my grumbling.
Do you think walking in a pool would be an option for you to start? And maybe a dip in the spa at the end if they have one? They might be gentle enough to count as exercise, and maybe help reduce some of the aches and pains.
It is really hard discussing diet with health professionals. Many of them seem to be trained on that 'food pyramid' thinking which involves a lot of carbs. There should be some really good posts/forums on here about eating lower carb - can anyone point us to them?

Best of luck Christmas Fairy. I think the main piece of advice I can offer is to find some support people. Whether on here, or in person at a diabetes group. People who have and are probably still walking the diabetes path. A few tips, and the odd stern look when we could be doing better, can do wonders.

:)
 
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Sueski

Newbie
Messages
1
Hi everyone, i am Type 3c due to acute pancreatitis and then cysts on my pancreas which wiped out my pancreas in 2019. Now i am insulin dependent and also take creon with all meals. Just wondered if there is anyone else on this forum with similar condition.
Hi, I have been type 3c for appprox 14-/15 years take insulin and metformiin. I lost the head. Of my pancreas after a whipple procedur.. in feb 2007