Any Type 3C people out there?

Bethchar

Newbie
Messages
1
Hi everyone, i am type 3c I have had it for 30 years 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 am a fellow type 3c i have had it 30 years and as a result of mismanagement and a lack of awareness i am miw crippled with serious diabetic complications. My diagnosis on my mefical record us still type 1 and it angers me greayly. The only similatity between me and a type 1 is that we both need insulin. I have no pancreas and cannot digest my food. I suffered with chronic abd sudden inset diahrea for 17 years and nobody linked this to my diabetes. Whilst tgere are lots if type 3c diabetics out there I suspect there are few who have lived with the undiagnosed condition as long as I. Today I discovered I have stage 2 nepropathy.
 
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rolandxkey

Member
Messages
12
hi.
I am a fellow type 3c i have had it 30 years and as a result of mismanagement and a lack of awareness i am miw crippled with serious diabetic complications. My diagnosis on my mefical record us still type 1 and it angers me greayly. The only similatity between me and a type 1 is that we both need insulin. I have no pancreas and cannot digest my food. I suffered with chronic abd sudden inset diahrea for 17 years and nobody linked this to my diabetes. Whilst tgere are lots if type 3c diabetics out there I suspect there are few who have lived with the undiagnosed condition as long as I. Today I discovered I have stage 2 nepropathy.
Yes, it annoys me too that medical people who should know better are just lazy; they could write "Type3c, insulin dependent" - but sometimes there isn't a "drop-down box" to tick as Type3c: the NHS needs to catch up.
 

JamesEaster

Member
Messages
5
Yes, it annoys me too that medical people who should know better are just lazy; they could write "Type3c, insulin dependent" - but sometimes there isn't a "drop-down box" to tick as Type3c: the NHS needs to catch up.
What bugs me is that if the records say type 3c and a practitioner doesn't know about it then they can **look it up**; if its in the notes by a professional then they should show a level of respect for their judgement.
 

Mick Quinn

Newbie
Messages
1
Hi

I have type 3C due to Heamochromotosis effecting my Pancreas. I knew I did not have type 2 and was happy to hear that people have now adopted the type 3C name. My big issue at the moment is scared to use too much insulin on a night due to a recent Hypo, this is not helped by me having COVID at the moment so not really eating a lot
 

Toasey

Newbie
Messages
1
Hi,
I'm another type 3C. Mine is due to acute necrotising pancreatitis in 2010. The diabetes became apparent some three years later. First I was put on metformin and a year or so later I was put on insulin.
In reply to Mick Quinn, I sympathise with your concern about taking too much insulin before bed. I usually go to bed around midnight and try to avoid eating anything substantial after 9pm, just coffee (decaffeinated). This allows any food I've eaten, and any insulin that I have injected, to fight it out and result in a stabilised blood sugar reading by the time I'm preparing for bed.
I always take a blood sugar reading before sleeping and want to avoid getting that blood sugar reading that is high enough to require an insulin injection because, obviously, while you are asleep you cannot continue monitoring and compensate if blood sugar drops more than planned.
 
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rolandxkey

Member
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12
Hi,
I'm another type 3C. Mine is due to acute necrotising pancreatitis in 2010. The diabetes became apparent some three years later. First I was put on metformin and a year or so later I was put on insulin.
In reply to Mick Quinn, I sympathise with your concern about taking too much insulin before bed. I usually go to bed around midnight and try to avoid eating anything substantial after 9pm, just coffee (decaffeinated). This allows any food I've eaten, and any insulin that I have injected, to fight it out and result in a stabilised blood sugar reading by the time I'm preparing for bed.
I always take a blood sugar reading before sleeping and want to avoid getting that blood sugar reading that is high enough to require an insulin injection because, obviously, while you are asleep you cannot continue monitoring and compensate if blood sugar drops more than planned.
Are you using Freestyle Libre 2 or just finger pricking?

If on Libre 2 are you aware of the app called Diabox? This uses the Libre 2 sensor and takes the basic reading, applies its own algorithm (not surprisingly it can't use the Freestyle algorithm for commercial reasons) and provides a Continuous Glucose Monitor (CGM). This is displayed on your phone, refreshed either in 1 min or 5 min intervals along with displaying other useful info. CGM has been a total game changer for me; I thought Libre 2 was good, but now appreciate it is actually very limiting in comparison to Libre 2. My T3c is very erratic and I suspect that is going to be so for most T3cs; it's called brittle diabetes.

Diabox also has more alarms with 2x upper and 2x lower levels, which I use to give early warning and then urgent warning of change. Diabox also has better sounds, more varied and to some extent interpretative audibly; eg for changing BG I selected a rising or falling set of notes - you select the sound you want. And I use different sirens for Urgent alarms. The sirens always wake me before I'm officially hypo - so while its not desirable to get noisy alarms in the night it does remove my worry about hypos while I sleep. The urgent high I've set at 16, then I can choose if I need to check Ketones

Diabox is free, written by techs who are themselves diabetic; so they incorporate features that make sense (I sometimes feel Libre 2 was coded by a committee of laymen - no doubt well intended, but ...). It can, when BG is in steady state, be calibrated to actual BG; I've found it pretty consistent. It's no longer available on Playstore or Apple store, but can be found from the Telegraph app. The android version has been stable for several months, the ios version was re-released only this year, having been forced off ios and their store during last year! I use android.
 
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jasholden

Member
Messages
14
Type of diabetes
Type 3c
Treatment type
Insulin
Are you using Freestyle Libre 2 or just finger pricking?

If on Libre 2 are you aware of the app called Diabox? This uses the Libre 2 sensor and takes the basic reading, applies its own algorithm (not surprisingly it can't use the Freestyle algorithm for commercial reasons) and provides a Continuous Glucose Monitor (CGM). This is displayed on your phone, refreshed either in 1 min or 5 min intervals along with displaying other useful info. CGM has been a total game changer for me; I thought Libre 2 was good, but now appreciate it is actually very limiting in comparison to Libre 2. My T3c is very erratic and I suspect that is going to be so for most T3cs; it's called brittle diabetes.

Diabox also has more alarms with 2x upper and 2x lower levels, which I use to give early warning and then urgent warning of change. Diabox also has better sounds, more varied and to some extent interpretative audibly; eg for changing BG I selected a rising or falling set of notes - you select the sound you want. And I use different sirens for Urgent alarms. The sirens always wake me before I'm officially hypo - so while its not desirable to get noisy alarms in the night it does remove my worry about hypos while I sleep. The urgent high I've set at 16, then I can choose if I need to check Ketones

Diabox is free, written by techs who are themselves diabetic; so they incorporate features that make sense (I sometimes feel Libre 2 was coded by a committee of laymen - no doubt well intended, but ...). It can, when BG is in steady state, be calibrated to actual BG; I've found it pretty consistent. It's no longer available on Playstore or Apple store, but can be found from the Telegraph app. The android version has been stable for several months, the ios version was re-released only this year, having been forced off ios and their store during last year! I use android.

Ho there I am 3c and have brittle too - highs and lows, sometimes very difficult to control or predict... I like the sound of the Diabox app but am unclear as to where to get it. Could you please elucidate? Thanks, Jamie :)
 

Antje77

Oracle
Retired Moderator
Messages
19,711
Type of diabetes
LADA
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Insulin
Ho there I am 3c and have brittle too - highs and lows, sometimes very difficult to control or predict... I like the sound of the Diabox app but am unclear as to where to get it. Could you please elucidate? Thanks, Jamie :)
Are you using the Freestyle Libre? You need it to use DiaBox.
If you use the Libre1 you'll need a separate add on device, with the Libre2 it works with the app alone.
 

rolandxkey

Member
Messages
12
Ho there I am 3c and have brittle too - highs and lows, sometimes very difficult to control or predict... I like the sound of the Diabox app but am unclear as to where to get it. Could you please elucidate? Thanks, Jamie :)
Hi Jamie @jasholden.
I originally found Diabox through Bubblan as an app to make best use of my mini bubble. But that quickly changed, since shortly after I set up my mini bubble it became clear that Diabox would work direct from Libre 2, so I adjusted and removed my mini bubble.

I believe that Diabox currently only works on android phones; if there is an ios solution it is not obvious. For android there is a site called telegram and the Diabox app can be installed from there. I understand if you Google "telegram for diabox" you will be able to start from there. I am on version v.2021.08.02.1. The Diabox developer is working on getting an ios approved version.

My diabetes is very brittle and I suspect that will continue for the foreseeable future. By rigorously responding to alarms I've reduced my hypos and Libre "low glucose events" to very, very few. On the rare occasion I do go low it is very shallow, 3.8 or 3.9. I set the upper low alarm at c.6.0 and monitor closely from that start point, ready to snack on medium GI foods such as Nature Valley (or similar) cereal bars [no chocolate, this slows down the carb intake], or oatcake biscuits (eg Nairns); if that doesn't stop a downward trend at around 4.5, I'll take 1x jelly baby. My lower low alarm (ie my Urgent low alarm) is set at 4.3; when that goes I immediately take 1 or 2 jelly babies and don't waste time finger pricking, which I will then do if I am feeling hypoish. Almost always this heads off the hypo before it becomes a hypo. But this requires commitment and time to be effective.

Sometimes my Libre gives false low readings which influences Diabox readings. This is a nuisance and can lead to an over-reaction by me; but by staying calm and waiting to see how things develop I generally avoid the former rapid bounce back to hyper.

Sometimes, for reasons I simply don't understand, I go lowish and seem to stick there. It's frustrating, but manageable. Eventually I get a steady raise in my BG.

I'm now working on reducing hyper periods. As my BG rises I'll get active, finding things to do or going for short walks. I start getting active at 8.0 and with a sloping arrow up. This is still "work in progress" and very time consuming. Its not sustainable in the long term, but currently I'm exploring what options are open to me with the benefit of continuous glucose monitoring from Diabox reading continously from Libre 2. I will take corrective bolus doses but try to avoid insulin stacking.

I don't use the Libre alarms, they can interfere with Diabox alarms, which are far superior to Libre alarms: Diabox has 2 upper and 2 lower alarms; better sounds; better range, particularly for lower alarms. Libre caps one to 5.6 for top of low range; this is too low for me - I need to be responding by 6.0 sometimes 6.5; 5.6 is too late for me.
 

jasholden

Member
Messages
14
Type of diabetes
Type 3c
Treatment type
Insulin
Are you using the Freestyle Libre? You need it to use DiaBox.
If you use the Libre1 you'll need a separate add on device, with the Libre2 it works with the app alone.

Yes I use the Libre 2 system but I use my iPhone for scanning
 

Antje77

Oracle
Retired Moderator
Messages
19,711
Type of diabetes
LADA
Treatment type
Insulin
Yes I use the Libre 2 system but I use my iPhone for scanning
Diabox doesn't currently work with iPhone sadly.
I think people with iPhone often use xDrip instead, but I don't know how that works.
 

JamesEaster

Member
Messages
5
I am type 3c following an injury to my pancreas in second half of 2020 from a wandering gallstone rupturing the pancreatic duct. I had a drain for about 6 months, had and have Creon with meals and snacks, and eventually onto Insulin. After a while, I was feeding the insulin, so they cut and cut my insulin dose until I no longer need insulin. I have hypos so I got the Libre2 sensor.

In March this year, I had a CT scan following abdominal pain and they discovered that my pancreas had healed; this time it was gallstones in my bile duct, but no injury. I went into hospital again about a month ago with more pain and I had an infection at the neck of my gallbladder which required a lot of IV antibiotics.

I don't know what is causing the hypos now that my pancreas has healed but I suspect that the issue is with the alpha cells which produce the glucagon hormone which causes the liver to release sugars when blood glucose levels go low. Because of the nature of the issue, I fall between Hepatobiliary and the Diabetes team so I think that I will just have to manage it myself by experience. The consultants want me to have my gallbladder out as I am young enough for the gallbladder to cause me lots of problems.

I feel a little bit of survivor's guilt as my pancreas has healed.
 
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JamesEaster

Member
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5
Hi i was just curious to know what kind of diet should one take once experienced acute pancreatitis and do these restrictions remain lifelong?
From my experience, the best tips are to have a generally controlled carb and otherwise balanced healthy meals:
* more fruit and veg, especially veg.
* cut the quantity of carbs (200g is more than enough for me for main meal)
* keep control on snacks
* have snacks like 14g snack boxes of raisins (60kcal/9g carbs), skinny brand cereal bars (69-99kcal/10g carbs), Nature Valley cereal bars (200kcal/26g carbs) to respond according to the amount of correction you need.
* Freddo's are a nice infrequent treat
* Discovered Jerky; no carbs, plenty of protein.

If the cause of the pancreatitis is connected to gallstones then manage fat quantities too.

Tracking calories and carbs made a big difference in seeing what impact different foods had on me. Libre2 can take manual recordings of carbs so that can help find useful patterns that you can act on.
 

JamesEaster

Member
Messages
5
Well, I had my surgery 3 weeks ago and was fortunate to have had spleen and neck, body and tail of pancreas removed laparoscopically so am up and about and doing well. Learning to cope with fluctuating blood sugars and new regime of novorapid twice a day and tress a at night. Figuring out how much Creon to take at present and am now up to about 16 a day. Was given my follow-up appointment as a phone consultation but have managed to have that changed to a face to face one. Also have an appointment to see specialist dietitian and diabetes specialist in a week’s time. Hoping to also get GP to agree to me getting the freestyle Libre monitor when I speak to her tomorrow as my fingers are like pin cushions. On a big learning curve at the moment.
I got the Libre2 due to having hypos. Knowing that might help find the justification the diabetes team need to get it sorted for you.
 

Kerry48

Member
Messages
14
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Litter, depression, fake people
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.
 

Kaydee59

Member
Messages
24
Type of diabetes
Type 3c
Treatment type
Insulin
I got the Libre2 due to having hypos. Knowing that might help find the justification the diabetes team need to get it sorted for you.
I have the libre2 system and I am managing to keep within target around 85 - 95% of the time which the Diabetic Specialist Team seem happy about. My concern really is that I am injecting myself with around 15 units of Novorapid at lunch and dinner. It is obviously the right amount for me as I don’t often go low.
 

Kaydee59

Member
Messages
24
Type of diabetes
Type 3c
Treatment type
Insulin
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.
I think your Mom probably needs to be seen by a Specialist Diabetic Team to get the right help and support. I have metformin tablets twice a day, empagliflozin once a day, Novorapid insulin with lunch and dinner and Tresiba injection at night. I do have lows but because I have a Freestyle Libre Sensor, I am able to rectify the situation before it becomes too late. I too am on Creon with meals and because I also suffer with severe malabsorption of bile salts, need to take Colesevelam with meals too. Maybe you need to change her GP
 

Antje77

Oracle
Retired Moderator
Messages
19,711
Type of diabetes
LADA
Treatment type
Insulin
It just seems a lot when other diabetics I talk to, inject around 5 units
The amount of insulin people need varies a lot between people. Some need only acouple of units a day, others need a couple of hundred units a day.
The right amount is the mount that keeps your BG as stable as possible!