Type 3c - how many are we?

[skoz]

I’m a rare visitor to this forum (sorry), so hadn’t seen the T3 sub-forum before. I’ve struggled for years to properly describe my form of diabetes to medics/nurses, with so many not properly understanding the fundamental differences between T1 and T2, let alone anything else. If I start talking to them about T3, the eyes will really glaze over.

My “journey” into diabetes started with misdiagnosis/mistreatment of a gallstone. Two visits to A&E with severe abdominal pains resulted in discharge and “not heart attack; something gastric; see your GP” advice. The third time (blue lights, sirens etc.) was taken a little more seriously, but too late. I was in hospital for seven months, in intensive care for weeks and “technically” died a number of times from multiple organ failure. Major surgery to remove my gall bladder and various bits of necrotic tissue followed a while later.

In the midst of all the drama, leaking enzymes “digested” various internal structures including 96% of my pancreas and beta-cells. On hospital documentation, I’m identified as having “severe acute pancreatitis”. I no longer produce insulin or digestive enzymes, so I require injections (Novorapid and Lantus) and Creon tablets to keep things ticking over.

I’m not sure whether or not that qualifies me as a member of the T3c club.

I'm a new member. My story is almost identical to yours, including the 7 months in hospital, codes and complications. I'm incredibly lucky to be alive. I have found the lack of information, education and understanding incredibly frustrating. I'm on Basalgar, Fiasp and Cotazym amongst a raft of other meds. I'd love to connect with others of a similar experience.

 

[skoz]

Hello ... I have Diabetes due to pancreatic failure ans had major surgery and I’m constantly put in the type 2 category .. I’m insulin dependant and doctors have struggled to treat me for years very frustrating as I’m not type 2.. some doctors have even looked at books whilst seeing me .. I now have the libre sensor which is helping greatly with my control ... anyone else have this ? And how are they getting on?

I have been using the Freestyle Libre sensor for almost 2 yrs.This is an amazing product! I was having to strip test more than 8 times a day previously. Now I know my glucose on demand. I have paired it with the DiabetesM app and scan the sensor with my phone. I couldn't be happier with this app. It has made an incredible difference in my control.

 

[skoz]

I'm a type 3c due to Acute Necrotizing Pancreatitis. I have been left with virtually no pancreas plus a lot of other organ damage. Among a host of other meds, I was initially prescribed Metformin. I found that it resulted in horrible diarrhea. I have since stopped using it. I question the logic of prescribing it, since my understanding is that I process insulin normally, I just dont have a pancreas to produce any. Does anyone have similar experiences with Metformin or Glicozide?
I also struggle with weight gain since constant fatigue makes exercise difficult. My glucose also drops extremely quickly upon exertion. Anyone else have the same problem and/or strategies to help?

 

[Civilised Devil]

I'm a type 3c due to Acute Necrotizing Pancreatitis. I have been left with virtually no pancreas plus a lot of other organ damage. Among a host of other meds, I was initially prescribed Metformin. I found that it resulted in horrible diarrhea. I have since stopped using it. I question the logic of prescribing it, since my understanding is that I process insulin normally, I just dont have a pancreas to produce any. Does anyone have similar experiences with Metformin or Glicozide?
I also struggle with weight gain since constant fatigue makes exercise difficult. My glucose also drops extremely quickly upon exertion. Anyone else have the same problem and/or strategies to help?

Hi skoz sort of similar chronic pancreatitis type 3c diabetes 3months in hospital lost 5 stone in weight. Real problems putting on weight started to graze constantly nuts, low carb and low/ no sugar snacks made some myself recipes on line hunt them out. Don't exercise, wait till things settle down and only then light exercise eg walking only after 5 months did I start to do things around the house and most importantly stop when you start to feel weak/tired and please give your self time in October it will be a year for me and I'm not even 50% now. Look after yourself and take it easy a sedatary lifestyle is now the way of life.

 

[armstrongfj]

Hi, type 3c since about a year after distal pancreactomy with en bloc splenectomy,
Pre lockdown I was around 7ish mmol/l, now its closer to 10. I managed to get a consultation outside of my authority (my authority they kept cancelling due to lack of specialty asistance). So heading toward insulin. in September/October when an appointment comes available.

Regards,
Francis,.

 

[JAEC1954]

As type 3c is a rare form of diabetes, and as we now have our own sub-forum, I'm curious to know how many of us are accessing the forum! So are you a member of the 3c club?? Sue xx

I am guessing I am type 3c although I have not been told. 9 years ago I was diagnosed with type diabetes then 3 years ago chronic pancreatitis was diagnosed, and px croon which I cannot do without. My bs were fairly ok below 10 after food and following a healthy diet. Now my bs levels are high 14-15 first thing in the morning and 18-20 at bedtime, taking 4x 80 mgs of gliclazide a day. Not able to tolerate metformin any more. So fed up

 

[Awmaines]

I am guessing I am type 3c although I have not been told. 9 years ago I was diagnosed with type diabetes then 3 years ago chronic pancreatitis was diagnosed, and px croon which I cannot do without. My bs were fairly ok below 10 after food and following a healthy diet. Now my bs levels are high 14-15 first thing in the morning and 18-20 at bedtime, taking 4x 80 mgs of gliclazide a day. Not able to tolerate metformin any more. So fed up

From my personal experience, because the pancreas is compromised and gliclazide works by stimulating the pancreas, gliclazide did little to control my blood sugars. Quadrupling the dose made no difference to my blood sugars and I ended up on insulin.

 

[T3cCindy]

Pancreatogenic diabetes is classified by the World Health Organization as type 3c diabetes mellitus (T3cDM) and refers to diabetes due to impairment in pancreatic endocrine function related to pancreatic exocrine damage due to acute, relapsing and chronic pancreatitis (of any etiology), cystic fibrosis, hemochromatosis, pancreatic cancer, and pancreatectomy, and as well rare causes such as neonatal diabetes due to pancreatic agenesis (1). Prevalence data on T3cDM are scarce because of insufficient research in this area and challenges with accurate diabetes classification in clinical practice.

In ordinary terms, damage to pancreas through, accident, illness, operation or genetic disposition, we are often misdiagnosed as type 1 as we are insulin dependant, we can go hypo/hyper for no reason.

 

[T3cCindy]

I would also like to add that most of us (especially those who no longer have a pancreas) do not have glycogen to stop the insulin from dropping, which is what is responsible for the unpredictability of our lows, resulting in the hypoglycemia. An additional factor is that most of us do not have pancreatic digestive enzymes either, which unless we are taking digestive enzymes properly, our food is not leaving the stomach in a timely fashion, which affects the proper dosing of our insulin needs.

 

[JAEC1954]

From my personal experience, because the pancreas is compromised and gliclazide works by stimulating the pancreas, gliclazide did little to control my blood sugars. Quadrupling the dose made no difference to my blood sugars and I ended up on insulin.

Hi, gliclazide has made no difference to my blood sugars, I am about to go onto Trulicity, I have no problem with injecting but am nervous about the common side effects.

 

[sweet levels]

my mum has diabetes after a whipples operation. I suspect it is type 3c, does anyone have any information to offer regarding this? I am new and completely confused

 

[Majii]

never heard of 3c diabetes... now I got to look and see what it is

Caused by damage to pancreas either through surgery or accident as far as I am aware
It’s treated the same as diabetes

 

[PatsyB]

thank you for explain this I never knew there was a type 3

 

[FranM52]

thank you for explain this I never knew there was a type 3

Hi,
I am now type 3 having having had an attack of pancreatitis while on holiday nearly 2years ago. Type 3 has gradually developed and I now take insulin once a day and digestive enzymes. Both have made a good difference to my health. I have put on some weight and my glucose levels are improving. Curious to know how many times a day people are take enzymes?

 

[Gran1]

I am so pleased to discover this forum. 9 years ago I was diagnosed with pancreatic cancer and had my pancreas removed,
together with my duodenum and half my stomach. I now inject regularly with novorapid and levermir and also
have to have creon everytime I eat. It has been a roller-coaster ride ever since! Not every diabetic
professional appreciates how different my situation is. I very much appreciate how lucky I am to have
survived! I left hospital on my 70th birthday! M y husband, three children and four grandchildren have been
marvellous throughout and I endeavour to 'just get on with life'.
We have isolated over Christmas and I had my Covid vaccination 10 days ago (no side-effects).
I hope we all have a better 2021 and wish you all belated good wishes for Christmas and warm wishes for
2021.

 

[tamar]

I am so pleased to discover this forum. 9 years ago I was diagnosed with pancreatic cancer and had my pancreas removed,
together with my duodenum and half my stomach. I now inject regularly with novorapid and levermir and also
have to have creon everytime I eat. It has been a roller-coaster ride ever since! Not every diabetic
professional appreciates how different my situation is. I very much appreciate how lucky I am to have
survived! I left hospital on my 70th birthday! M y husband, three children and four grandchildren have been
marvellous throughout and I endeavour to 'just get on with life'.
We have isolated over Christmas and I had my Covid vaccination 10 days ago (no side-effects).
I hope we all have a better 2021 and wish you all belated good wishes for Christmas and warm wishes for
2021.

It's always encouraging to hear from other post pancreatectomy patients and know that you are thriving and well. I am 11 years in and as you say it has been a 'roller coaster ride' and still continues to be so! I approach everyday as a new challenge try not to get downhearted when my body does not respond as expected! No, not every diabetic professional understands the complexity of our situation wish they undertook more targeted training! This enforced isolation is no picnic but it does help enormously if you have a supportive family, my husband helps me through the ups and downs and I have a great friend who underwent the same operation, we met at our hospital clinic, great having a someone to sound off to who understands is so wonderful. Pleased to know that you have had the vaccination with no ill effects. Happy New Year and fingers crossed in the coming months life improves for everyone.

 

[Gran1]

Tamar ,Good to hear from you and glad you are doing well and have a friend who understands!,
It is unnerving when highs and lows blood sugar readings happen for no reason. I have even tried
duplicarting days - same food and same routine to see what happens. One day I would have a hypo
and the next be fine with normal blood sugar readings. I now just get on with it and deal with whatever
happens. Off for my follow-up Covid vaccine on Thursday which is reassuring. New lockdown is a
bummer but shall just get on with it. The sun is shining so off for my walk. Keep well eveyone.

 

[tamar]

Tamar ,Good to hear from you and glad you are doing well and have a friend who understands!,
It is unnerving when highs and lows blood sugar readings happen for no reason. I have even tried
duplicarting days - same food and same routine to see what happens. One day I would have a hypo
and the next be fine with normal blood sugar readings. I now just get on with it and deal with whatever
happens. Off for my follow-up Covid vaccine on Thursday which is reassuring. New lockdown is a
bummer but shall just get on with it. The sun is shining so off for my walk. Keep well eveyone.

 

[Abav]

As type 3c is a rare form of diabetes, and as we now have our own sub-forum, I'm curious to know how many of us are accessing the forum! So are you a member of the 3c club?? Sue xx

I am technically a 3C but my endo told me it isn't a recognized diagnosis so all my paperwork says T1D so insurance will pay.

 

[Philbert 2]

How is Type 3c diagnosed? Can I ask my GP to arrange whatever test might highlight it? Thanks