New - anyone battle being seen as Type 3c ?

[evolsidog]

Hi

I had Acute Necrotising Pancreatitis 7 years ago... Was a fight to get diagnosed with diabetes although HbA1c levels were over 20. Finally, after 3 months was diagnosed.

Was popped onto Insulin as a precaution. Then advised that my c-peptides showed I was producing good amounts of insulin (just weren't doing what we're supposed to).

HbA1c levels I managed to maintain for a while.. however again all over the place. They can be high in mornings and near normal levels by lunchtime.

Keep being advised I am "type 2". I think the diet for Type 3c may differ as read should have starchy carbs?

However, again. Told to eat high fibre diet. Another issue is, due to current shortages of pancreatic meds, I have also been advised to reduce fibre intake.

I'd have hoped after all this time I'd have had some consistency in advice.

Currently bloods averaging 12+ since lack of meds for pancreas enzymes (and subsequently subdural haematoma after a 10 week headache diagnosed as sinuses)

 

[Leadinglights]

Hi

I had Acute Necrotising Pancreatitis 7 years ago... Was a fight to get diagnosed with diabetes although HbA1c levels were over 20. Finally, after 3 months was diagnosed.

Was popped onto Insulin as a precaution. Then advised that my c-peptides showed I was producing good amounts of insulin (just weren't doing what we're supposed to).

HbA1c levels I managed to maintain for a while.. however again all over the place. They can be high in mornings and near normal levels by lunchtime.

Keep being advised I am "type 2". I think the diet for Type 3c may differ as read should have starchy carbs?

However, again. Told to eat high fibre diet. Another issue is, due to current shortages of pancreatic meds, I have also been advised to reduce fibre intake.

I'd have hoped after all this time I'd have had some consistency in advice.

Currently bloods averaging 12+ since lack of meds for pancreas enzymes (and subsequently subdural haematoma after a 10 week headache diagnosed as sinuses)

Welcome to the forum, sorry to hear you are having problems getting the correct treatment for you condition, there are several members who are Type 3c and they have found problems getting the enzymes but it hasn't been mentioned it a while so maybe the issue is improving.
I'm sure people will be along soon to give you some words of wisdom based on their experience of managing the condition.

 

[Standup]

I'm type 3c following surgery and wasn't given any special advice about diet. The only guidance was take your Creon enzymes and the amount varies depending on how much fat in the meal. Haven't been able to get any for some time now so taking a (much) reduced amount does have an impact on weight and general well being but I'm not aware of enzymes lowering glucose levels.

There is a school of thought that means if you're absorbing more from the meal then levels might rise or then again they might go into the bloodstream quicker or for some makes no difference. Similarly one dietitian recommended anti acids to help with lack of Creon but hospital consultant wasn't convinced.

The guidance around Creon shortages does recommend not over doing the fibre though if you can't take your full Creon dose.

 

[Lucyr]

Keep being advised I am "type 2".

Sounds likely T2 as you’re producing good amounts of insulin. Type 3c would have lower amounts of insulin as damage to the pancreas stops you producing enough insulin in type 3c

 

[Wendal]

Hi

I had Acute Necrotising Pancreatitis 7 years ago... Was a fight to get diagnosed with diabetes although HbA1c levels were over 20. Finally, after 3 months was diagnosed.

Was popped onto Insulin as a precaution. Then advised that my c-peptides showed I was producing good amounts of insulin (just weren't doing what we're supposed to).

HbA1c levels I managed to maintain for a while.. however again all over the place. They can be high in mornings and near normal levels by lunchtime.

Keep being advised I am "type 2". I think the diet for Type 3c may differ as read should have starchy carbs?

However, again. Told to eat high fibre diet. Another issue is, due to current shortages of pancreatic meds, I have also been advised to reduce fibre intake.

I'd have hoped after all this time I'd have had some consistency in advice.

Currently bloods averaging 12+ since lack of meds for pancreas enzymes (and subsequently subdural haematoma after a 10 week headache diagnosed as sinuses)

Hi and sorry you find yourself here and for your situation I can relate to.
I had acute necrotising pancreatitis nearly 3 years ago and developed diabetes just over a year ago.
I did not have a C Peptide test so not sure how much insulin I am producing.
It depends exactly whereabouts in your pancreas the necrosis happened so your exocrine cells will be very likely damaged as they are situated all over the Pancreas and you can still function even with very limited numbers.
That would fit in with you still producing good levels of insulin ( so little or no endocrine damage) and then developing diabetes years later.
Plus explain why you can still go high even if you are not taking exogenous insulin.Or of course you could have a different type of diabetes.
One of difficulties we 3Cs all face is the over lap between the Upper GI and Endo Depts.
Suggest you take this up with your Diabetes Team as you may be able to manage on meds rather than insulin or have a different Type of diabetes.
As for specific diet I find I can eat more or less what I want and only modify based on my insulin requirement rather than my pancreatic issues.Mind you I have no trouble currently sourcing Creon and can get good supply after a few months of difficulties.
Good luck

 

[stephenS50]

Hello and welcome to the forum @evolsidog.I'm sorry to read about the problems you're having getting the correct treatment for your condition.I hope and pray that you do so and quickly.