Cumbrianjudith
Well-Known Member
- Messages
- 85
- Type of diabetes
- Type 3c
- Treatment type
- Insulin
A rant, but also advice please.
I had acute pancreatitis and septic shock in Intensive Care following a routine procedure to unblock my bile duct going ‘wrong’ in 2014…then in following weeks sent by GP to A&E twice as BG and ketones all over the place. Even with hospital stay didn’t get to see anyone from diabetic team, till GP pressed again and then got what I now understand is just the procedure for poorly controlled type 2 diabetes: humulin. Then following year, before gallbladder removal lost 3 stones in weight ‘without trying’. Took till 2023 on a Type 2 training course to get diabetic team at hospital to recognise I had no natural insulin and was type 3c, so got Libre monitors, Toujeo and Fiasp. Meanwhile was getting gut problems, diarrhoea and pain, which I can see had been bad enough to see GP about from about 5 years ago, nothing done as infection tests ok. Two+ years ago the gut was getting worse and I did a systematic purge and recording of foods, supplements etc etc to see if anything obvious made it worse. Like many of you the immediate need to get to the lavatory when out was getting too much! So a year ago, after much research, I self diagnosed pancreatic insuffiency being at least a contributor to my problems ( I’m also hypothyroid and have dysautonomia from Long Covid) and in July 2025 wrote to my GP with details asking to be referred to gastroenterology. Somewhere along the lines, and I suspect as this particular consultant was embarrassed at the gastro.waiting times I ended up seeing a NHS colorectal surgeon on a Sunday morning in May in a very deserted outpatients; he agreed with my diagnosis and ordered a Fecal Elastase test, and to rule out anything else a colonoscopy! Test showed ‘severe pancreatic insuffiency’ but still after nudges for ‘urgent care’ from 2 different specialities’ consultants no news from gastro.section responsible ( it’s a small Trust). Chasing this up myself I got an appointment 12 months to the week from my letter to GP, but this was cancelled and again with more chivying new one created 5 weeks later.Then on Friday this was cancelled too, so looked like I’d be lucky to see a gastro.by late Sept., 5 months after ‘severe’ test, and probably due to colonoscopy wiping out and good gut biome I had to just about cope with gut, I was now constantly nauseous, being sick, very bad gut pain, needing to visit loo 3+ times a day in seconds…. So I phoned up GP surgery for advice/ support…receptionist said ’no, you cannot talk to GP today, phone 111 or go to A&E’. Phoned up 111 who said urgent/A&E in 2 hours: 3 departments and triage later saw the GP attached to A&E.She recognised the problem having a patient on Creon ( but she didn’t recognise the term ‘type 3c diabetes’). Ironically she said had I been in her surgery she could have produced a prescription for a PERT, but not while in A&E, but she would try to get situation moving. Home a few hours later: phone message from GP surgery asking for emergency call back ( which they denied all knowledge off knowing why), but the phone call with GP denied earlier materialised, and a new email confirming a gastro.appointment two days earlier than the one cancelled. Within the hour, 6.15 Friday evening, the GP had heard from the gastro.dept with recommendation for Creon prescription, to be ordered in by surgery pharmacy ‘25,000 3 pills with meals’. That was all the advice. Should I start straight in or build up to the 3 pills? Does ‘severe’ indicate a likely dose? I had hoped for a conversation with GP about getting vit A,D,E,K, B12 and ferritin tested but is this better to wait for the gastro.to order? As I said this is being done within the small North Cumbria Trust, so not convinced there is anyone in any team who will have experience about how pancreatic damage affects digestive enzymes and insulin etc…should I ask for a referral in Newcastle 40 miles away to where there are pancreatic- biliary specialist teams?
I had acute pancreatitis and septic shock in Intensive Care following a routine procedure to unblock my bile duct going ‘wrong’ in 2014…then in following weeks sent by GP to A&E twice as BG and ketones all over the place. Even with hospital stay didn’t get to see anyone from diabetic team, till GP pressed again and then got what I now understand is just the procedure for poorly controlled type 2 diabetes: humulin. Then following year, before gallbladder removal lost 3 stones in weight ‘without trying’. Took till 2023 on a Type 2 training course to get diabetic team at hospital to recognise I had no natural insulin and was type 3c, so got Libre monitors, Toujeo and Fiasp. Meanwhile was getting gut problems, diarrhoea and pain, which I can see had been bad enough to see GP about from about 5 years ago, nothing done as infection tests ok. Two+ years ago the gut was getting worse and I did a systematic purge and recording of foods, supplements etc etc to see if anything obvious made it worse. Like many of you the immediate need to get to the lavatory when out was getting too much! So a year ago, after much research, I self diagnosed pancreatic insuffiency being at least a contributor to my problems ( I’m also hypothyroid and have dysautonomia from Long Covid) and in July 2025 wrote to my GP with details asking to be referred to gastroenterology. Somewhere along the lines, and I suspect as this particular consultant was embarrassed at the gastro.waiting times I ended up seeing a NHS colorectal surgeon on a Sunday morning in May in a very deserted outpatients; he agreed with my diagnosis and ordered a Fecal Elastase test, and to rule out anything else a colonoscopy! Test showed ‘severe pancreatic insuffiency’ but still after nudges for ‘urgent care’ from 2 different specialities’ consultants no news from gastro.section responsible ( it’s a small Trust). Chasing this up myself I got an appointment 12 months to the week from my letter to GP, but this was cancelled and again with more chivying new one created 5 weeks later.Then on Friday this was cancelled too, so looked like I’d be lucky to see a gastro.by late Sept., 5 months after ‘severe’ test, and probably due to colonoscopy wiping out and good gut biome I had to just about cope with gut, I was now constantly nauseous, being sick, very bad gut pain, needing to visit loo 3+ times a day in seconds…. So I phoned up GP surgery for advice/ support…receptionist said ’no, you cannot talk to GP today, phone 111 or go to A&E’. Phoned up 111 who said urgent/A&E in 2 hours: 3 departments and triage later saw the GP attached to A&E.She recognised the problem having a patient on Creon ( but she didn’t recognise the term ‘type 3c diabetes’). Ironically she said had I been in her surgery she could have produced a prescription for a PERT, but not while in A&E, but she would try to get situation moving. Home a few hours later: phone message from GP surgery asking for emergency call back ( which they denied all knowledge off knowing why), but the phone call with GP denied earlier materialised, and a new email confirming a gastro.appointment two days earlier than the one cancelled. Within the hour, 6.15 Friday evening, the GP had heard from the gastro.dept with recommendation for Creon prescription, to be ordered in by surgery pharmacy ‘25,000 3 pills with meals’. That was all the advice. Should I start straight in or build up to the 3 pills? Does ‘severe’ indicate a likely dose? I had hoped for a conversation with GP about getting vit A,D,E,K, B12 and ferritin tested but is this better to wait for the gastro.to order? As I said this is being done within the small North Cumbria Trust, so not convinced there is anyone in any team who will have experience about how pancreatic damage affects digestive enzymes and insulin etc…should I ask for a referral in Newcastle 40 miles away to where there are pancreatic- biliary specialist teams?
