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.

 

[Ieva DUK]

Hi @evolsidog and welcome to the forum!

I'm so sorry to hear that even after seven years there are still so many question marks in your diagnosis. Are you getting different advice from different health professionals (fibre vs low fibre in your food, T2 vs T3c)? We do have quite a few Users who are T3c specifically, so have a read amongst the threads. Alternatively, post your questions here or in the general message board and someone will surely have an answer!
The subdural haematoma on top of all that sounds absolutely dreadful, I hope you're receiving treatment and appropriate care.
I know it might sound silly, but sometimes in your appointments it's worth asking the health professionals to write down any advice they give in your case too, so that when you see another one - you could ask them to refer to those notes if they contradict one another.

 

[evolsidog]

My issues mainly have been I was initially advised at the hospital by the diabetes nurse that I had type 3c but they'd treat me as a type 2.

I don't think my GPs are aware of Type 3c and even the district diabetes nurse questioned there being more than 2 types of diabetes.

The diabetes was aligned with the necrotising Pancreatitis. At one stage I was told 50% of the pancreas had necrosis (although in reality I think was about 25%).

I read on the pancreaticanceraction.org site that....

"Advice for patients with Type 3c Diabetes

Eat meals little and often in a regular pattern (at similar times every day) and *include starchy carbohydrates such as potatoes, bread, rice or pasta.*"

Which seems against my advice to not eat white carbs.

My blood sugars are mainly only controlled on a liquid diet of soup... And very limited intakes. I can eat a large salad and have blood spikes, yet can have a Mars bar and packet of crisps and be fine (well a lesser spike).

 

[evolsidog]

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

I didn't developer diabetes years later. I was admitted to hospital late 2017 with the pancreatitis. My blood sugars at the time were in the 20s. It wasn't until February 2018 that my GPs, after me challenging due to knowing I had high blood sugars that they tested and agreed. With this they referred me to the hospital diabetes nurse who confirmed I was type 3c but would treat me as a Type 2 (as most don't understand more that 2 types). And she thought insulin wasn't required.

 

[trophywench]

And she thought insulin wasn't required.

Well - she could be either right or wrong - depends on exactly which particular bits of your pancreas have necrotised and therefore completely ceased to function, forever.

In particular, the contents of the islets of Langerhans since that's where the insulin is produced.

Also depends on whether the necrotisation action has been stopped in its tracks, so couldn't yet kill more of your pancreas, or whether its still active. Somebody must know the answer to that question!

 

[Proud to be erratic]

Yes, that seems a valid question to put back to your GP or better the Hospital DSN. Not every DSN is well trained when it comes to T3c; the DSN who looked after me for the 12 months after my pancreatectomy was a delightful person but I came to realise she didn't remotely understand my complexity - even agreeing with my GP that I didn't need to FP more than 4 times daily; leading to a momentary withdrawal of test strips (so unbelievably stupid!).

 

[martindt1606]

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.

Hi i've been using creon for 20+ years, 14 of which i've had no pancreas. Creon (other brands available) primarily impacts the absorbtion of carbs, fat, and proteins and the number of capsules taken should be based on the higher your need for each of these. For example I need the same creon for a high carb low fat meal as i take for a low carb high fat meal. If you don't take enough for fat you should see the evidence of this in the toilet, if you don't take enough creon to cover your carbs then you run the risk of a hypo - you bolus for the carbs in your meal but if you have insufficient creon you may not absorb all your carbs ie lack of enzymes could result in low glucose levels. Taking too much creon should not impact your blood glucose levels.
I have always been prescribed esomaprazole with the creon - i take 1 with breakfast and one with evening meal. Every 12 months a GP will question why i take esomaprazole and why i've had it for 20 years. As as soon as i say i have no pancreas take industrial quantities of creon they check on line and say "ok its needed".
If you are on Creon and having difficulty obtaining CREON call 0800 808 6410. This is the PERT help line. They will tell you which Pharmacies have had recent PERT deliveries in or close to your Post Code area. My number one tip for obtaining owed creon is to go to (or call) your pharmacy and ask them to place a manual order whilst you are talking to them. They are supposed to check every day but in all probability don't. Every month I seem to receive about half my prescription, I wait 7 days for them to manually source the outstanding balance, I call them and they say they have used there quota or there is no creon available, i politely say i know whats going on could you please process an order for whats outstanding, they do so..........and before 14:30 the next day i get a text saying prescription ready.