Any Type 3C people out there?

[miahara]

It just seems a lot when other diabetics I talk to, inject around 5 units

We are all different in our insulin requirements : I normally have 10 units with breakast (about 25 gm carbs), 2 units with lunch and anything between 6 and 8 units with my evening meal which can comprise anything up to 100 gm carbs.

 

[Steve 007]

Hi, I’m so pleased to have been pointed to this forum as I’m a year in to, now what I’ve learnt is T3 rather than T1. The good, all unaware of, gallstones created acute pancreatitus and subsequent large cyst, while on holiday in Italy - that’s history with gall bladder having been removed but sugars for the last 2 and a half mths have been all over the place. At least I have a review next week, but suspect I’ll be put on quick acting insulin, rather than the current 21 units of slow release, which I assume is all about bringing sugars down quickly? The best blood sugar I’ve had this mth is 8.6, the worst is meter saying Hi, and that’s not just being friendly! Keystones are good. Are most people in this situation on quick release rather than slow, diet is good although have had a few naughties over past 2mths, but reigned them back now. Will get results of blood test next week, in prep, what is a good HB score?

 

[destiny]

Hi,
I really need some help, or advise please. I myself am a type 1 diabetic, as was my Father. So I know a lot of the terminology and info on this site.
HOWEVER, my Mother has type 3c, and reading everyone’s comments on this page has made me realise that the treatment she’s receiving from her GP is lacking.
firstly, I apologise, but I had been one of those people who did not know that there was such a thing as type 3c. I obviously know my Mom didn’t get diabetes from being overweight (she weighs 7.5 stone, and always has), but she is receiving typical type two treatments. She is on metaformin, and has been for 4 years now. She has complained to her GP that she is having dizzy spells, and her blood sugars drop to 3.5, she also gets high bloodsugars, but her GP has told her she can’t have hypo’s and to stop doing blood tests. She has been on Creon tablets for years, but is unsure if there are any long term issues with taking them. Some Doctors tell her there are, others say no?
Has anyone got any advice or questions that she should be asking her GP?
I am particularly interested in her having low blood sugars, because the Doctors keep telling her she can’t get them on metaformin, but the fact that she keeps getting dizzy and falls over is particularly worrying, especially as she is 83. Thanks in advance to anyone who takes the time to help.

She needs to be seen by someone who understands diabetes and metformin, of course she can still have hypos. Her tests prove it. She needs a support team, its not good to have frequent swings in glucose levels. Ask for a referral, but it will have to be made by her doctor.

 

[Angusc]

hi type 1 here, on t-slim x2 pump with a dexcom 6 CGM they have 10-20 min delay on readings due to not reading blood sugars directly(this is what causes the differences between blood test and cgm readings) but the control-iq hybrid-closed loop can level out spikes and lows and does a pritty good job

 

[Ledzeptt]

Hi, I’m so pleased to have been pointed to this forum as I’m a year in to, now what I’ve learnt is T3 rather than T1. The good, all unaware of, gallstones created acute pancreatitus and subsequent large cyst, while on holiday in Italy - that’s history with gall bladder having been removed but sugars for the last 2 and a half mths have been all over the place. At least I have a review next week, but suspect I’ll be put on quick acting insulin, rather than the current 21 units of slow release, which I assume is all about bringing sugars down quickly? The best blood sugar I’ve had this mth is 8.6, the worst is meter saying Hi, and that’s not just being friendly! Keystones are good. Are most people in this situation on quick release rather than slow, diet is good although have had a few naughties over past 2mths, but reigned them back now. Will get results of blood test next week, in prep, what is a good HB score?

I was in a similar situation, although 8 years ago. I think the first year was the worst: not just hospital, but the huge learning curve and change in life. So, first well done for all you’ve gone through and achieved so far.

I was on slow release insulin for the first year; I think it’s easier to learn and then later prescribed multiple daily injections I.e. slow insulin plus fast insulin taken with every meal, to give better control but it’s more complicated to learn.

There’s not a specific good HBa1C number and there’s no point in you knowing my latest number. It’s very difficult to get a number equivalent to someone without diabetes if that’s what you mean. You need to learn the mindset that all these numbers (including blood glucose = 8.6) aren’t good or bad, but just information. You can then decide, perhaps with help, what to do with the information. Do you take/adjust insulin? Eat or adjust your diet? Exercise, etc.

It does get better and you will be able to get on with your life; perhaps re-visit Italy and have a more enjoyable time!

 

[Steve 007]

Hi again, re my earlier post, the review went as predicted - got to slightly reduce units of slow release and was given quick release to do with every meal - something to get my head round, but sure it will become the norm.There was a slight intake of breath when the sugars over the last 2 mths were discussed, and they didn’t like the HB score. Suggested to start with that I have same number of units, 4, to start with regardless of what the meal is. How do people work the timing of the injection if say going out for a meal which may be 30mins away and then wait for food to be delivered to table - is it jab before leaving home, jab when meal arrives, does it matter?
They recommended a book called carbs & calorie counter which on first skim, looks pretty useful. I’d always really focussed on sugars rather than carbs so a bit of a shift in mindset. Anyway we’ll see how it all goes over the next few weeks, ready for a follow up mid Jan. Good health to every fellow reader or poster

 

[miahara]

Hi again, re my earlier post, the review went as predicted - got to slightly reduce units of slow release and was given quick release to do with every meal - something to get my head round, but sure it will become the norm.There was a slight intake of breath when the sugars over the last 2 mths were discussed, and they didn’t like the HB score. Suggested to start with that I have same number of units, 4, to start with regardless of what the meal is. How do people work the timing of the injection if say going out for a meal which may be 30mins away and then wait for food to be delivered to table - is it jab before leaving home, jab when meal arrives, does it matter?
They recommended a book called carbs & calorie counter which on first skim, looks pretty useful. I’d always really focussed on sugars rather than carbs so a bit of a shift in mindset. Anyway we’ll see how it all goes over the next few weeks, ready for a follow up mid Jan. Good health to every fellow reader or poster

Hi Steve and welcome to the world of multiple daily injecting: it does take a bit of getting used to but one thing that might help you work out how much rapid acting insulin to take is to start a diary and note your blood sugar at the start of a meal, the amount of insulin you take and then your levels 1 and 2 hours later. You'll probably discover that your ideal insulin:carb ratio varies considerably through breafast, lunch and evening meals. I know I require very much more insulin:carbs at breakfast than I do for my evening meal. As for timing of insulin when eating out, I just wait until the meal is about to be served - it seems to work reasonably well.
The book 'Carbs and Cals' is quite a useful tool for judging carb contents and it is also available as a phone app. If you need accurate info about packaged food you can get that from the back of most food packaging though may need to do a bit of maths to calculate a specific portion size e.g. the one third of a tin of baked beans I shared with my meal last night. Just remember that it's 'carbs' you are looking for and the 'sugars' are irrelevant.

 

[Jakerz79]

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.

Hello. Jake here I am 3c as well due to acute necrotizing pancreatitis. I have only been out of hospital for 2 weeks. Man is it a lifestyle change. Small price though considering the Dr told my family I had about a 10% chance of making it. Well noone told me so I just got better. It is nice to know I am not alone. Never even heard of 3c

 

[Steve 007]

Hi Jake, welcome to life as a 3C, and pleased to read that you’re where you are now. I’ve gone a year now, and it is all about understanding, adapting, being sensible, and not letting it control you. I’m still trying to get my head round the link between carbs, and insulin, especially at this time of year, and not necessarily focussing too much on the sugars. A year without alcohol was certainly a shock, but there are some good alcohol free drinks out there. I’ve been told I can have alcohol now in moderation so 2023 will be different again. Will find out in 2 weeks time exactly what the pancreas is doing or not doing, so that will be interesting. Your post reads as though your headspace is in the right place, this is a good forum for questions, support, and guidance, so use it if you feel the need. Welcome again Steve

 

[Kaydee59]

Hello. Jake here I am 3c as well due to acute necrotizing pancreatitis. I have only been out of hospital for 2 weeks. Man is it a lifestyle change. Small price though considering the Dr told my family I had about a 10% chance of making it. Well noone told me so I just got better. It is nice to know I am not alone. Never even heard of 3c

Hi Jake, I was orig diagnosed as Type 2 about 11 years ago but Christmas Eve 2020 after a bout in hospital with abdominal Pain and high white blood cell count they scanned me and discovered I had a neuro endocrine tumour in my pancreas. A slow growing encaps tumour which had slowly been killing off the pancreas hence the diabetes. April 21 my spleen and most of the pancreas was removed so I too am on rapid acting insulin with lunch and dinner and long acting one when I go to bed. I have to take creon with anything I eat and also because of severe malabsorption of bile salts, I also have to take cholestagel with meals too. If that is not enough, with no spleen, I have a compromised immune system so have to take antibiotics twice a day for the rest of my life. I have adjusted and got used to my new way of life and actually am grateful to be alive and so well.

 

[Pam*]

I am type 3C. I had a Neuroendocrine pancreatic tumour (PNET) found by chance after a scan. Huge shock! I had surgery at Kings, London in April 2022 when my whole pancreas, spleen, duodenum and gall bladder were removed. I am now on insulin, Creon (pancreatic enzymes) and daily antibiotics due to having no spleen. My blood glucose levels are VERY up and down and hard to control.

 

[Pam*]

Hi Jake, I was orig diagnosed as Type 2 about 11 years ago but Christmas Eve 2020 after a bout in hospital with abdominal Pain and high white blood cell count they scanned me and discovered I had a neuro endocrine tumour in my pancreas. A slow growing encaps tumour which had slowly been killing off the pancreas hence the diabetes. April 21 my spleen and most of the pancreas was removed so I too am on rapid acting insulin with lunch and dinner and long acting one when I go to bed. I have to take creon with anything I eat and also because of severe malabsorption of bile salts, I also have to take cholestagel with meals too. If that is not enough, with no spleen, I have a compromised immune system so have to take antibiotics twice a day for the rest of my life. I have adjusted and got used to my new way of life and actually am grateful to be alive and so well.

Just posted on here and read your post. I'm in a similar situation as you.

 

[Steve 007]

Hi Pam, sounds like you’ve been through the mill a bit! I’m type 3 since sept 2021 when gall stones decided to cause havoc- I was on slow reacting insulin but since jan this year I’ve been on quick as well as my sugars were extremely high most of the time- this plus carb counting has really pulled blood sugars into line where as an example 79% are now in range over a 90day period - libre say a target should be 70%. There is a carbs & calories app that is really useful, and this plus injecting units based on carbs of a meal (units guided by my specific diabetes team) has really stabilised thing. I find it a total pain sometimes having to input what I’m eating or planning to eat into the app, other times with planning it’s a doddle. I’m also on Creon every meal. Maybe discuss some of this with your team to see their thoughts, stay with it, it does stabilise, but needs help and guidance

 

[Pam*]

Hi Pam, sounds like you’ve been through the mill a bit! I’m type 3 since sept 2021 when gall stones decided to cause havoc- I was on slow reacting insulin but since jan this year I’ve been on quick as well as my sugars were extremely high most of the time- this plus carb counting has really pulled blood sugars into line where as an example 79% are now in range over a 90day period - libre say a target should be 70%. There is a carbs & calories app that is really useful, and this plus injecting units based on carbs of a meal (units guided by my specific diabetes team) has really stabilised thing. I find it a total pain sometimes having to input what I’m eating or planning to eat into the app, other times with planning it’s a doddle. I’m also on Creon every meal. Maybe discuss some of this with your team to see their thoughts, stay with it, it does stabilise, but needs help and guidance

Hi Steve. Thanks for your reply. Yes it was all a bit of a shock to the system getting that diagnosis. Having no pancreas means that I don't produce insulin or glucagon, I think that's why my blood glucose are on a bit of a roller coaster. I do use the Carbs & Cals book and app and count the carbs in everything I eat. I have Degladec in the morning which is the slow acting insulin and then NovaRapid with every meal. I use the Freestyle Libre 2 which is helpful but I'm often woken at night with the low or high alarms going off. I log everything I eat and all of the insulin shots too. It does seem to take over my life. I'm not yet able to guess how many carbs are in a meal so eating out is difficult. My diabetic team seem to think I'm doing well but I would like to do better and achieve more even BG results, rather than the hills and valleys that I get now.

 

[Kaydee59]

Just posted on here and read your post. I'm in a similar situation as you.

Hi Pam, yes our situation is similar. I have a Freestyle Libre 2 sensor which I find a great help. I have also been doing the keto diet for the last 12 days and although it is early days, I have lost 4 Kg and have not needed my Novorapid at mealtimes. I have been 100% in target for the whole time I have been doing the diet. I am still taking my basal insulin at night and amongst my cocktail of tablets, I am still taking met Forman and empagliflozen.

 

[sealover]

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.

Hallo, If it's any comfort I had the head of my pancreas removed in 1977, was put on Creon and in 1990 needed to be on insulin. Different health problem from yours but I am now 84 and still enjoying life, so take heart!

 

[Kevo h]

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.

Yes I am my pancreas is working 12percent , I did try crayon tablets but it didn't agree with me , the doctor put on on that libra thing today so no more pricking my finger yoooooooooooooooooooo

 

[Nicksayer]

Hi Steve. Thanks for your reply. Yes it was all a bit of a shock to the system getting that diagnosis. Having no pancreas means that I don't produce insulin or glucagon, I think that's why my blood glucose are on a bit of a roller coaster. I do use the Carbs & Cals book and app and count the carbs in everything I eat. I have Degladec in the morning which is the slow acting insulin and then NovaRapid with every meal. I use the Freestyle Libre 2 which is helpful but I'm often woken at night with the low or high alarms going off. I log everything I eat and all of the insulin shots too. It does seem to take over my life. I'm not yet able to guess how many carbs are in a meal so eating out is difficult. My diabetic team seem to think I'm doing well but I would like to do better and achieve more even BG results, rather than the hills and valleys that I get now.

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.

 

[Steve 007]

I can strongly recommend the DAFNE course, went on it about a month ago, and it’s surprising what different messages have been given out to people in just basic management of symptoms - example some hadn’t been told to keep needle in for about 10seconds after injecting so were just in and out. Nothing major but simple consistency on things that matter. One thing I took away was to set my low alarm at 4.5, and have, say orange juice then, to prevent going into low, rather than reacting when it’s too late. That has worked wonderfully, a small thing but a good thing. Eating out is still a learning curve, especially at this time of year when you’re out and the eats are a fuddle! But we’ll get there. Stay safe and enjoy festivities, the course was a good way of sharing experiences with like minded people, and this forum is the next best thing - we’re in it together. Here’s to a good 2024.

 

[NellH]

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.

Yes, diagnosed with type 1 Diabetes after hospitalisation in 2021 with very high A1c reading. Pancreas atrophy with large lesion. I’m in the ‘honeymoon period’ and undergoing pancreas scans yearly.