Type 3c Newbie

[John Simmons]

Hi there. Introducing myself ...

I'm John Simmons from Morecambe, Lancs. I had my pancreas (and other bits and pieces) removed December 2021. So I now live with Type 3c (or pancreatogenic diabetes, as they used to call it). I'm managing it with Insulin and Creon, of course. But mostly with walking!

I have been approved for a pump and I'm hoping to aquire it this November.

I am a volunteer speaker for Diabetes UK, so do book me to come and speak to your adult group. I'm a retired maths teacher and church pastor so I know how to speak!

I am on a mission to get Type 3c diabetes widely understood, more accurately diagnosed, and much better managed. It's an uphill path. It is probably more common than Type 1 according to research, but you would not know that if you read about diabetes here and elsewhere.

Looking forward to hearing from you.

 

[nonethewiser]

Few on here with type 3, pump libre user myself & take Creon for PEI.

 

[mikeyB]

If you read the DUK magazine Balance you would barely know about Type3c, which as you rightly say that is now commoner than Type 1. I think that there is a way of thinking that it's not proper Type 1, so well done on getting a pump.

In fact the NICE treatment guidelines are up to date with its treatment - so not as many GPs or consultants regard it is as treatable as Type 2, flogging a dead horse with tablets, as used to be the case. (In those with a still available pancreas, that is). NICE advises that Insulin should be the from of treatment initially - that's obvious when the pancreas is removed - but also in conditions such as chronic pancreatitis. And the causes of chronic pancreatitis are gallstones, alcohol, trauma, and autoimmune. Smoking is commoner in those who develop CP. Interestingly, on the Pancreatitis Forum, though many are 3c, diabetes is little mentioned, the main discussion is the chronic pain that can result from Acute Pancreatitis causing the CP.

I'm a retro engineered 3c, my T1 started 25 years ago, when my body started to attack my insulin producing cells in the pancreas, and only 5 years ago it started on the rest of the pancreas, giving me chronic pancreatitis, adding to my collection of autoimmune conditions. I've never had any pain from that process. Just the entertainment from when the Creon starts to work.😉

 

[SB2015]

Not 3C but lots of other ‘snaps’
Volunteer speaker
retired Maths teacher

Pleased that you have found the forum and look forward to hearing more from you.
Which pump did you go for?

 

[everydayupsanddowns]

Welcome to the forum!

We have a fair few type 3c members including @eggyg @Proud to be erratic @soupdragon @martindt1606 @CoventryTrev @stackingcups @The robin and @zippyjojo (plus many more!)

So there are lots of folks for you to compare notes with 🙂

And yes the lack of knowledge of Type 3c, even among healthcare professionals, does seem to be a very common thread, unfortunately

 

[Pumper_Sue]

Welcome to the forum. 🙂

 

[eggyg]

Hi @John Simmons long term type 3c here. Distal pancreatectomy and splenectomy December 2007. Type 3c hadn’t been “invented” then! Been a battle but I’m slowly winning. Can’t believe you’ve been approved for a pump so soon. I struggled to get insulin as was told I was Type 2! It beggars belief when I think about it now. Good luck in spreading the word. Need any help I’m here, and live up north ( Cumbria) just spitting distance from you.

 

[soupdragon]

Hi @John Simmons and welcome from another 3c.

 

[Proud to be erratic]

Hello John, welcome to this forum and our select T3c club!

Hi there. Introducing myself ...

I'm John Simmons from Morecambe, Lancs. I had my pancreas (and other bits and pieces) removed December 2021. So I now live with Type 3c (or pancreatogenic diabetes, as they used to call it). I'm managing it with Insulin and Creon, of course. But mostly with walking!

You sound very buoyant and doing well after what would have been major surgery last December.

I have been approved for a pump and I'm hoping to aquire it this November.

I shall be fascinated to hear how you get on with pumping. Very shortly after my surgery I was very keen to go down that route. Covid intervened, very little discourse with anyone about managing my D, then various post op ailments followed by chemotherapy resulted in my needing to be realistic - I needed to get myself stable before taking on further challenges and as far as I can tell pumping does have its own learning and management challenges; but it should make your life easier in the longer term. On balance, I'm glad I've had a while to get stable AND to become very comfortable with MDI in conjunction with managing the multiple idiosyncrasies of my relatively brittle D.

I presume you have Libre 2. Out of curiosity what settings do you have your alarms set at? I keep my low alarm at 5.6 to tell me when things are changing, rather than when I've actually become hypo.

I am a volunteer speaker for Diabetes UK, so do book me to come and speak to your adult group. I'm a retired maths teacher and church pastor so I know how to speak!

I am on a mission to get Type 3c diabetes widely understood, more accurately diagnosed, and much better managed. It's an uphill path. It is probably more common than Type 1 according to research, but you would not know that if you read about diabetes here and elsewhere.

That is an excellent mission! I do my bit, when circumstances allow. My first 2 Endos and my first DSN clearly didn't know how having no pancreas made me different from T1, even though my broad treatment is the same. I still can't bring myself to forgive that DSN for telling my GP that I didn't really need to test and resulted in my test strips being rationed; it took a lengthy amount of rationale to overcome that rationing - stressful at the time.

I've found, mainly from this forum, that there are T3cs who are not insulin dependent. Their pancreatitis has clearly been disruptive and yet even with some surgery has not destroyed their insulin production. So we are quite a disparate group of people, proving that we are all different when it comes to D.

Looking forward to hearing from you.

Happy to chat in general or about specific T3c questions.

 

[CoventryTrev]

Hi @John Simmons . Welcome to the forum. The members on here are great and helped me in a massive way since I had my pancreas and spleen removed in June this year.
I agree with what you say about 3C. My hospital had me down as type 2 and it took me a while to get it changed.
So many health care providers don't know what 3C is. The look of confusion on a doctors face when I correct them and tell them I'm 3C! Then they say "oh yes but we treat you as a type 1" Not only do we have to work out how much insulin to have before a meal but we also have to remember to take our Creon tablets (I often forget). Then for those of us with no spleen, we have to remember to take our penacillin every day and due to low or no immune system, we have to be careful with what we are doing and where we go when their are large crowds.

 

[martindt1606]

Hi there. Introducing myself ...

I'm John Simmons from Morecambe, Lancs. I had my pancreas (and other bits and pieces) removed December 2021. So I now live with Type 3c (or pancreatogenic diabetes, as they used to call it). I'm managing it with Insulin and Creon, of course. But mostly with walking!

I have been approved for a pump and I'm hoping to aquire it this November.

I am a volunteer speaker for Diabetes UK, so do book me to come and speak to your adult group. I'm a retired maths teacher and church pastor so I know how to speak!

I am on a mission to get Type 3c diabetes widely understood, more accurately diagnosed, and much better managed. It's an uphill path. It is probably more common than Type 1 according to research, but you would not know that if you read about diabetes here and elsewhere.

Looking forward to hearing from you.

Hi John, I've been insulin & creon dependent since they took my pancreas in 2010. Have had a pump for around 8 years now. If not already in your plan I'd recommend asking for CGM Integration with your pump. I've had Dexcom G6 and T-slim pump for around 4 years and not sure how i would get through most days without it (my neuroendocrine pancreatic cancer has metastasised in the liver). Post Pancreatectomy I was transferred to a Diabetic Consultant who loved my "rarity" and spent many hours getting me through the early years. Unfortunately(?) this has meant i have problems recognising myself as Type 3c - I was educated as if i was Type 1. I'm an ambassador for Neuroendocrine Cancer helping (where I can) PNET and diabetic members.