Type 3c - how many are we?

[caryann48]

I was diagnosed with type 2 Diabetes about 8 years ago about a year after having acute Pancreatitis caused by Gall Stones.
For the last 8 years my medication has gradually increased and I am now insulin dependant,my consultant has along the way questioned as to whether I might be Type1 but never took the query further..... Now I'm starting to read about Type 3 Diabetes and think that maybe me! I'm about to embark on a low carb lifestyle so maybe things will become clearer.

 

[Mie]

I am the carer for my partner, 3 years ago he started falling ill, it took us a year to convince our, then GP, that the problem he was having absorbing food wasn't a side effect of his insulin, it wasn't until his weight dropped to just under 8 stone, and he started to have Hypoglycaemic fits, that they did something, since then it has been a long struggle to get him back to reasonable health, he still has bad days, and is still signed off, by our new GP.
I was so desperate for support and information that I started a Facebook page (His Failed pancreas), hoping that people would find it and I could garner new information. I for one am glad of the new classification, I am looking forward to speaking to ATOS who insist on categorising him as typical T1, who won't control his sugars, one idiot there even went so far as to say that he would be better in a year! Perhaps with the new categories we can now get some more much needed support.

 

[bgriffith]

I'm a 3c (although most people say 3). Had recurrent acute pancreatitis as a teenager which eventually became chronic pancreatitis.

It ruined my life and I ended up with a huge pseudocyst which eroded in to my stomach so they removed around 85% of my pancreas in 2009 and I got diabetes within a few months.

I'm on insulin now, which can be hard but I would rather be living with diabetes than chronic pancreatitis.

I take creon too, which hasn't been too fun lately with the shortage of the 40,000's!!

 

[Mie]

Beth,
My partner was prescribed 40'000's for his meals, and 25,000's for his snacks late last year, I was advised by Boots in February this year that they could not honour his prescription because 40,000's were not available due to a quality control issue. It took a little time for the prescription clerk at our Dr's to modify the prescription.
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My partner was diagnosed as a T1 at the age of 32, and has been on Creon for the past 2½ years.
His last CT scan, earlier this year, diagnosed an atrophied pancreas

 

[mrspuddleduck]

Hi guys, just to let you know they stopped manufacturing Creon 40000 in April this year. All GPs etc were informed but sadly it appears this wasn't picked up upon across the board!! You need to ask your GP to change you over to Creon 25000 asap because at the moment they are only supplying what is left over stock of the 40000. It's not an easy switch (I've just been through it). I would suggest you start off doubling the amount if tablets you take then adjust down accordingly. Not an idea situation, I'm now on 600 tablets a month and at £100 a bottle I am not my GPs favourite patient!!!

 

[bgriffith]

I know I ended up having to go in for a consultation (which I avoid!) to get mine change. I work in a hospital and the rumour is that it'll be August 2016 at the earliest that the 40000 come back. It's an issue with the pigs that they extract the enzyme from, they can't get the higher concentration.

 

[Cablecar69]

I guess that Im Type 3c although everyone has always said type1. I had to have most of my pancreas due to necrotising pancreatitis due to gall stones. I was in hospital for 9 months and nearly left the planet a few times. Ive since had my Gall bladder out as well but i dont need cryon. So a new one on me that im 3c. I do need insulin though.

 

[Wallin]

HI,
I had a Whipple operation a year ago including a total pancreactetomy. My diabetes has been very brittle, and I have felt totally out of control.mive been given very contradictory advice by diabetes nurses. The diabetes Doctor I saw tried every different insulin on the market.
From day 1 I asked to go on the DAPHNE course, and was initially told "There isn't one." Then told by another diabetes nurse that she could tell me everything I needed to know, but our 10 minute consultation each week was taken up with going through my weeks log book, and changing doses. Eventually the diabetes doctor suggested that I might benefit by doing the DAPHNE, at which point I said "Hallelujah ". However, he then told me that in my area there was an 18 month waiting list.
Ringing around I managed to find a course in another area where the waiting list was six months. I completed the course three weeks ago, and feel so much more confident, and in control. I think it is disgraceful that anyone should have to wait, and fight for so long to be able to do this very important course.
My BG levels are still erratic, but no where near as bad as they were before the course, I too take Creons before I eat. By the time I've taken my BG, injected, taken the creons, and written everything down in my log book my dinner is usually cold, but at least I am able to eat fairly normally again.
Before my operation the surgeon, and medics all told me what major, and grueling surgery it was going to be. Nobody warned me about how hard the diabetes would be.
However, I suppose I have to count myself lucky, as six months down the line I would have had pancreatic cancer had it not been found so soon.
I do long for a day when I have energy, and can feel 'normal'. Maybe 2016 will be a better year.

 

[JRW]

I guess that Im Type 3c although everyone has always said type1. I had to have most of my pancreas due to necrotising pancreatitis due to gall stones. I was in hospital for 9 months and nearly left the planet a few times. Ive since had my Gall bladder out as well but i dont need cryon. So a new one on me that im 3c. I do need insulin though.

I had an episode of acute sever pancreatitis at the end of 2008, I nearly died, and I think it's something like a 25% death rate for acute severe pancreatitis in the UK anyway. I wasn't in hospital that long, and they released me when my BG started to normalise. It was quite strange the consultant told me that with what I had been through I should be on a ventilator not walking out the hospital, a large part of my pancreas had been destroyed they said. A terrible experience, with a few comedy moments, mainly down to huge amounts of morphine, and tripping out.

Three years later I was diagnosed with T1, and I'm insulin dependent, was 45mmol when diagnosed, I can only conclude it was down to the pancreatitis, so I guess I'm type 3C.

Worryingly have had an irritated pancreas in the last few days, abdominal pain and resonating through my back, plus running a temperature. Nothing like the pain of full blown pancreatitis, I can only sympathise with anyone who has been through that. When I first started getting the pains for pancreatitis I went to see an emergency doctor as i was visiting my parents, she kindly diagnosed me with 'overdoing it' despite me not having taken a drink for a week, a day later when the enzymes actually spilled out and I was in agony I was ambulances in agony to hospital, bit of a rant but dr's really need to know more about this.

 

[FNDodd]

I'm type 3c after having a whipple operation in 2013. Since then I've had to take Creon with every meal and it's been a challenge maintaining my weight. I'm still producing some insulin with what remains of my pancreas but have been told when my HbA1C gets to 58 (9.3) I'll have to start on insulin and from the results of my monthly tests since September it's likely to be soon. I can't do LCHF as I can't manage the fat but I keep a careful watch on the carbs I eat but without carbs my weight drops dramatically. I also can't eat leafy green veg eg lettuce, cabbage etc, if I do I'm in agony. However I'm grateful to still be here

 

[RohanP01]

Yep. Me too..... insulin Novorapid and Levemir and creon. And slow release metformin. I was advised that having some of a pancreas can make things a little harder to keep steady but I may be less likely to get exceedingly high or low as the body still has the mechanism for self correcting and it works a bit. I've also not had any issues with ketones yet, even when ill, which is likely to be due to this as well.

 

[Annie3]

Just joining in to say that I am a member of the Type 3c Club, too.
I was so pleased to see this group had been started.
I had a distal pancreatectomy in 2009 and a Whipple in 2010 so have had no pancreas for just over five years.
My pancreatogenic diabetes started overnight post-op in December 2010.
My diabetes is well controlled with Lantus and Novorapid.
I have only ever used Creon 10,000's maximum twenty per day.
Best wishes to all!

 

[Refandy]

Really pleased, and I must say, very surprised to see the 3c forum appear - been trying to explain it to my DNS for years but she won't have it. I had chronic pancreatitis due to pancreas divisum resulting in the removal of my pancreas 4 months ago. I was on metformin for a few years prior to my surgery and would have changed to gliclazide had I not had the surgery as the metformin was starting to behave weirdly. I've been on creon for the past 7 years.

 

[Shar67]

@Refandy, Hello dis I Jamal, or Unclemorris, @mrspuddleduck worked hard to get this set up.

 

[Siesta]

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

 

[Siesta]

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

Hi,just been reading your thread and I didn't realise this existed either ..I am no sure if I type 3 but had afull whipples following chancer and consequently on insulin/ creon/ I have recently been suffering with severe reflux episodes too

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

 

[Siesta]

Hi,just been reading your thread and I didn't realise this existed either ..I am no sure if I type 3 but had afull whipples following chancer and consequently on insulin/ creon/ I have recently been suffering with severe reflux episodes too

 

[Siesta]

Sorry that was an awful but of writing I posted before I am
Lying down half asleep ! Just to conclude yes many of these threads ring so true ! However I am very lucky to be here but non the less do find it hard for friends and family to know quite how much I suffer so it is comforting to know that there are people with the same problems and interesting to hear how you cope .. Thanks .. Hope the spelling isn't too bad .. Predictive text !! Ha

 

[Refandy]

@Refandy, Hello dis I Jamal, or Unclemorris, @mrspuddleduck worked hard to get this set up.

Fancy seeing you here . Well done and thank you @mrspuddleduck

 

[Moosepig]

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.

I'm so interested to read about this 3c form - I was diagnosed type 2 after I had to have my gall bladder removed and the surgery damaged my pancreas. I'm only on drug and diet control, no insulin and I manage to keep in single numbers most of the time. Am I also potentially 3c then or just a big standard 2 but with damaged pancreas?