I had gall stones giving me pancreatitis ever since I have diabetes having to manage with insulin, now have Libre 2, brilliant! But they still say I have type 2, they can't check for type 3c, about 9% of people are misdiagnosed and it it took a long phone call with diabetes.uk for me to actually rea!ise there are more than type 1 and 2, I wouldn't have known about type 3c and any tips on how to best manage it.
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Hello, i was diagnosed with type 2, wrongly imo. fed up with people saying i'm too blame for type 2. I'm 5'6" and 9.5 st. I'm type 3C imo.
- Thread starter Boatee
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I think I may well be in the same boat. Did you have your gallbladder removed or just the gallstones. What was the time period between pancreatitis and diabetes diagnosis. I had ny gallbladder removed and it was about 6 months later that I was diagnosed as "type 2" diabetes. I'm still having issues with occasional vomiting and pain. I believe that it may be due to pancreatic enzyme deficiency which would normally help with food digestion. Doing as much research as I can. Hope you get your correct diagnosis and plan of action sorted x
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Sorry to hear what a difficult time you've been having @Boatee 
We have a number of people with Type 3c on the forum from surgery, cancer, or pancreatitis. @eggyg @Proud to be erratic @soupdragon and @martindt1606 are fairly frequent posters.
Problems with gall bladder can give rise to pancreatitis I believe?
There's a basic overview of type 3c here
www.diabetes.org.uk
We have a number of people with Type 3c on the forum from surgery, cancer, or pancreatitis. @eggyg @Proud to be erratic @soupdragon and @martindt1606 are fairly frequent posters.
Problems with gall bladder can give rise to pancreatitis I believe?
There's a basic overview of type 3c here
What is type 3c diabetes?
You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...
martindt1606
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@Boatee @Mummy Fox - We are all different and have different issues, however hopefully my history may help. I had my Gall Bladder removed in 2003. This followed a "random" blood test result which led to quite a lot of investigation as I had no symptoms / health issues. I was prescribed CREON immediately after the operation.
The gall bladder was removed through a Whipple Operation as the consultants were not convinced that the gall stone explained the initial blood test result. The operation allowed the surgeon eyes on access to the Pancreas where scaring / Pancreatitis was found.
At this stage I was not diabetic - I had no blood glucose issues.
A regular scan in 2009 identified that the "scaring" was in fact tumours that had grown. Despite the fact i still had no blood glucose issues or pancreatic pain, the pancreas was removed. After the operation I was referred to Type 1 clinic and have lived the last 13 years as a Type 1 diabetic.
The gall bladder was removed through a Whipple Operation as the consultants were not convinced that the gall stone explained the initial blood test result. The operation allowed the surgeon eyes on access to the Pancreas where scaring / Pancreatitis was found.
At this stage I was not diabetic - I had no blood glucose issues.
A regular scan in 2009 identified that the "scaring" was in fact tumours that had grown. Despite the fact i still had no blood glucose issues or pancreatic pain, the pancreas was removed. After the operation I was referred to Type 1 clinic and have lived the last 13 years as a Type 1 diabetic.
soupdragon
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Hi and welcome @Boatee
I'm type 3c following pancreatitis. I've been treated by insulin from the start and there was never any doubt that the pancreatitis caused my diabetes.
Are you taking Creon (or other digestive enzymes)? Generally 3cs also need Creon due to the damage to the cells in the pancreas that produce the digestive enzymes. Signs that Creon is needed are loose stools/diarrhoea due to poor absorption of nutrients (especially fat). There is a test (faecal elastase test) that can be carried out to see if digestive enzyme (PERT) treatment is needed.
In terms of reclassification the need for Creon would give an indication that you could have 3c. Also are you able to request a CT scan of the pancreas which would indicate the degree of pancreatic damage? That could also help.
It must be very frustrating to have this confusion over the type of diabetes that you have. Hope you are able to get things clarified soon.
I'm type 3c following pancreatitis. I've been treated by insulin from the start and there was never any doubt that the pancreatitis caused my diabetes.
Are you taking Creon (or other digestive enzymes)? Generally 3cs also need Creon due to the damage to the cells in the pancreas that produce the digestive enzymes. Signs that Creon is needed are loose stools/diarrhoea due to poor absorption of nutrients (especially fat). There is a test (faecal elastase test) that can be carried out to see if digestive enzyme (PERT) treatment is needed.
In terms of reclassification the need for Creon would give an indication that you could have 3c. Also are you able to request a CT scan of the pancreas which would indicate the degree of pancreatic damage? That could also help.
It must be very frustrating to have this confusion over the type of diabetes that you have. Hope you are able to get things clarified soon.
Hi there and thank you for your reply. I was wondering if Creon is what I need but having read your reply I'm now questioning myself. My digestive issues are at the other end. It is fairly quickly after eating that I have had abdominal pain and quite violent vomiting. So, does Creon work on digesting food once it reaches the stomach? I think my problem is that the bile duct on its own is insufficient to cope sometimes as opposed to a gallbladder where food is sitting in the bile whichnis obviously more effective. I need to re check my biology, but is the stomach past the bile duct? Getting confused now. I didn't realise that a ct scan would show what level of damage has been caused by the acute pancreatitis. I need to know that and also how much I am lacking in enzyme production from the pancreas and I seem to recall that is checked by blood test. I think I've taken in so much information this weekend I'm just a bit confused. I thought I was so clear yesterday. This forum has been more help to me in 48 hours than the experts have been over many years. I think I can see a glimmer of light at the end of what has been a bloomin long tunnel. I'll re check my anatomy and the I might be clearer. Thank you so much x
Leadinglights
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I think the test is a fecal elastase test but there are other tests as well. Look up pancreatic enzyme insufficiency and you will find information about causes, tests, etc.
soupdragon
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Having a go at answering your questions.
Just from my experience - I had significant pain and nausea/vomiting after eating for a long time after I left hospital. For me this was due to my pancreas still being inflamed and having fluid collections behind the stomach. I'm not sure from your posts how long it is since your pancreatitis?
CT scans have shown that I have very little pancreas left. I don't know how effective it would be at detecting smaller amounts of pancreatic damage.
Yes, Creon is taken with food so it acts in the stomach (and small intestine) to help to digest food. It contains enzymes which digest proteins, carbohydrates and fats. As some digestion of carbohydrates and proteins can occur elsewhere in the digestive system it is most important for the digestion of fats, which is why fatty stools/diarrhoea are an indication of a lack of digestive enzymes.
The faecal elastase test (carried out on a stool sample) is the test to detect pancreatic enzyme insufficiency (lack of digestive enzymes).
Bile from the gall bladder also assists with digestion of fats. I understood (from information given when I had my gall bladder removed) that after the gall bladder is removed bile still reaches the small intestine but instead of being released in larger quantities in response to a fatty meal it is released continuously in smaller amounts.
I assume that your gall bladder was removed?
The bile duct is after the stomach. The bile duct and pancreatic duct both enter the small intestine. They enter close together which is why a gallstone can lodge at the entrance to the pancreatic duct, stop digestive enzymes from the pancreas from leaving the pancreas and so cause pancreatitis.
Hope that helps.
Thank you so much. That makes sense now that I know that the stomach comes first, so, in theory, Creon could help me. My gallbladder removal was carried out a few months after my episode of acute pancreatitis. They said it was to allow everything to settle down before the surgery. I vaguely remember trying to keep to a low fat diet during that time. It was 5+ years ago for me. I know that the bile duct still releases bile in a drip drip way, but just cant imagine that this is ever going to be as effective as bile within a gallbladder but obviously I'm no expert.The only issue that I have (hope you are not eating) with bowel movements is that I have an urgency to go sometimes but not diarrhoea, just loose and a lot. My body seems to hold a lot of waste matter and then I get little notice that I need to go and it is always a lot. I wouldnt say that my stools are fatty but I will pay more attention now and perhaps the test is still well worth requesting. I had a scan once via a gastroenterologist and he said that it looked like I'd got an anaconda inside me, but according to their tests, I was still passing everything within normal timescales. He said that when I am full, my sphincter muscle is then under pressure to release and that's when I get the urgency to go. I have to know where toilets are everywhere I go! I also get a lot of wind. I've had a lot of anxiety issues which is why it has taken me a long time to finally investigate this myself to try and get a resolution. Everyone has been incredibly helpful and I am so grateful. X
Hi,
I had a distal pancreatectomy last year, where they took the tail of my pancreas. I left hospital neither diabetic or needing creon. Three months later I was diagnosed as diabetic. At the moment they are treating me as a type 2 with metformin. However, I was getting considerable pain when eating and the worst indigestion ever. I did not have diarrhea but in fact I was the opposite I was constipated- but when I did go they floated which is a sign. I had an elastase test done 3 months after my pancreatectomy which came back as 211 -normal is between 200 and 1000 I think. After a conversation with the gasterenterologist in February she prescribed me creon as she thought I had an enzyme deficiency and food was sitting in my stomach undigested. I only take one with a snack and 2 with main meals to top up what I do produce but the pain has gone, the indigestion has gone and I have normal bowel movements (Sorry for tmi) It has been the best thing ever!
I had a distal pancreatectomy last year, where they took the tail of my pancreas. I left hospital neither diabetic or needing creon. Three months later I was diagnosed as diabetic. At the moment they are treating me as a type 2 with metformin. However, I was getting considerable pain when eating and the worst indigestion ever. I did not have diarrhea but in fact I was the opposite I was constipated- but when I did go they floated which is a sign. I had an elastase test done 3 months after my pancreatectomy which came back as 211 -normal is between 200 and 1000 I think. After a conversation with the gasterenterologist in February she prescribed me creon as she thought I had an enzyme deficiency and food was sitting in my stomach undigested. I only take one with a snack and 2 with main meals to top up what I do produce but the pain has gone, the indigestion has gone and I have normal bowel movements (Sorry for tmi) It has been the best thing ever!
Oh to have normal bowel movements!! . There is hope for me I think! We are all so different, no 2 people have had exactly the same operation or symptoms but I am picking out pieces from each reply that I'm getting and putting my own jigsaw together. I can't believe that I've left it this long to sort, but in my defence, I've had anxiety and issues going on as well. I can only cope with a certain amount of disaster at any one time . Now my diabetes is a priority and I'm not taking no for an answer anymore. Thank you again for your replies. No replies are TMI if you know what I mean xx
Hi Mummyfox, yes gallbladder gone... Thanks for replying to my post because I feel less alone now I know there are so many more people suffering with 3c. It took about 2 months before they put me on metformin, didn't work, went back to hospital then. now on Novorapid and Toujeo and after years of arguing with the doctor I now have Libre 2 which you couldn't get for type 2
Thank you Soupdragon, I will definitely do some research on the Creon thing, already had the scan straight after the pancreatitis, which by the way the most painful thing ever, worse than appendicitis!
I have been desperate to get Libre 2 on prescription. Currently paying just under £100 for 2 sensors. It is crippling me financially as I only work part-time. The pharmacy are on my side and cant belueve that I have to pay for them, but the GP says that they are governed by rules. Have you officially been diagnosed as type 3C now and is that why you are allowed them now? My hopes are getting higher now!! I'm not normally outspoken, I just think the system is unfair. I am so glad that I joined this forum. It is giving me hope and encouragement to get this sorted x
Hi Cherrang, luckily I didn't have too many digestive problems, do have to take Macrogol to make me go, do carbcounting, running walkin g does help, as I mentioned in another reply I did start off with Metformin and had a lot of stomach cramps, now insulin dependent. I'm going to try the Creon that Soupdragon told me about. I can't believe how many people responded to my post... So many 3c's
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Hi Mummyfox, try your doctor again, unfortunately the Metformin gave me pain and didn't work! Collapsed in town with , unbelievable, 33.1 bloodsugar, put on insulin straight away. The hospital found it out. They have changed the rules now and can't discriminate on what diabetes you have. Actually Diabetes UK told me about 3c and then I had to tell my doctor about it, he didn't even know it existed
I just joined yesterday and already have loads more info than I had
Can I claim back the millions of pounds that I've paid out on Libre 2 do you think??? Due to ignorance of medical team! . I'll share! . It is a minefield, but I have kept saying to my gp that I am not your standard type 2 diabetic. Even if there was a gap of 6 months, my diabetes is still directly relayed to my acute pancreatitis. So frustrating and it makes you wonder how many others are in the same boat x
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