New to T3c

[Graham2406]

Hi, not technically a newbie as I have had diabetes for about 6 years following 4 episodes of acute pancreatitis, the last one leading to pancreatic necrosis. BS managed by 1,000mg of Metformin and no insulin.
However, I have now been confirmed as T3c following a PEI result of 57. I luckily don't have an serious bowel issues but am vitamin deficient and feel tired and am concerned about the possible long-term affects of PEI.
My doctor has admitted that she had no knowledge of T3c and is in the process of asking for advice on what treatment I need - not very reassuring!!
Any advice would be gratefully received.
Graham

 

[Proud to be erratic]

Hi, not technically a newbie as I have had diabetes for about 6 years following 4 episodes of acute pancreatitis, the last one leading to pancreatic necrosis. BS managed by 1,000mg of Metformin and no insulin.
However, I have now been confirmed as T3c following a PEI result of 57. I luckily don't have an serious bowel issues but am vitamin deficient and feel tired and am concerned about the possible long-term affects of PEI.
My doctor has admitted that she had no knowledge of T3c and is in the process of asking for advice on what treatment I need - not very reassuring!!
Any advice would be gratefully received.
Graham

Hi Graham, welcome to the Forum.

You need referral to an Endocrinologist. Slightly surprised that after your bouts of pancreatitis you aren't already tied into one; but perhaps Covid has changed the 'norms'
Who, specifically, confirmed your T3c status? It's absolutely correct, but unusual to get it written down. You have a great GP, honest and graceful enough to say what she doesn't know and accepting this is not T1 or T2.
PEI in the future should become apparent from your bowel activity: frequency, urgency, stool shape and colour, downright offensiveness! Your GP should advise on vitamin deficiency or refer you to a Diabetes dietician; such a Specialist might be within a Specialist Diabetes Clinic or in the HPB Surgical team.

I lost my pancreas to Pancreatic Cancer, so have only a scant knowledge of pancreatitis problems. There are a few other T3cs on the forum from pancreatitis origins, who should appear soon.

Good luck.

 

[Graham2406]

Hi Graham, welcome to the Forum.

You need referral to an Endocrinologist. Slightly surprised that after your bouts of pancreatitis you aren't already tied into one; but perhaps Covid has changed the 'norms'
Who, specifically, confirmed your T3c status? It's absolutely correct, but unusual to get it written down. You have a great GP, honest and graceful enough to say what she doesn't know and accepting this is not T1 or T2.
PEI in the future should become apparent from your bowel activity: frequency, urgency, stool shape and colour, downright offensiveness! Your GP should advise on vitamin deficiency or refer you to a Diabetes dietician; such a Specialist might be within a Specialist Diabetes Clinic or in the HPB Surgical team.

I lost my pancreas to Pancreatic Cancer, so have only a scant knowledge of pancreatitis problems. There are a few other T3cs on the forum from pancreatitis origins, who should appear soon.

Good luck.

Not sure why I wasn't referred to an Endocrinologist, as all my pancreatitis episodes happened pre-Covid. The "diagnosis" was more a case of my doctor reading the details I had printed off from this website, looking at my PEI results and saying "well I assume that makes you T3c"!! But, I agree, despite her lack of knowledge on this relatively rare condition, she is a really good GP.
But I am still a little confused how I can have such a low PEI, but bowel activity seems ok. I expect already eating a very low fat diet has disguised the symptoms.
Already been found to be vitamin D deficient (don't know if they checked for any others) and am on supplements, but I assume these will be of limited use until they have resolved the PEI.
Thanks for the quick response. I see that I will need to be on a very steep learning curve.
Cheers Graham

 

[Leadinglights]

I think vitamin D deficiency is something that people can have even without any conditions. but if you are avoiding foods that would be supplemented with Vit D that could be the reason. People are often lacking because of lack of exposure to sunlight and slapping on the sunscreen.
I was found to be low in folate, I suspect because of cutting out bread and cereals which are fortified with folic acid.

 

[khskel]

You definitely need referring to an endocrinologist for the diabetes side of things. Probably at a diabetes clinic at your nearest hospital. Have you also been prescribed Creon?

 

[Proud to be erratic]

Not sure why I wasn't referred to an Endocrinologist, as all my pancreatitis episodes happened pre-Covid. The "diagnosis" was more a case of my doctor reading the details I had printed off from this website, looking at my PEI results and saying "well I assume that makes you T3c"!! But, I agree, despite her lack of knowledge on this relatively rare condition, she is a really good GP.
But I am still a little confused how I can have such a low PEI, but bowel activity seems ok. I expect already eating a very low fat diet has disguised the symptoms.
Already been found to be vitamin D deficient (don't know if they checked for any others) and am on supplements, but I assume these will be of limited use until they have resolved the PEI.
Thanks for the quick response. I see that I will need to be on a very steep learning curve.
Cheers Graham

The significance of the PEI number means nothing to me. But can't help wondering what brought about the test to get your result of 57?
Regardless I'm flagging this up to some of the T3cs that I can recall and no doubt some will add value, if they can:
@eggyg, long term T3c (who is on holiday so might not have quick WiFi access); @soupdragon, had pancreatitis since 2019(?), @nonethewiser, a T1 originally now with exocrine insufficiency, @Jaec, a T2 with chronic pancreatitis, @Hepato-pancreato, @stackingcups , T3c after loss of gall bladder and 2? yrs of acute panc'y, @mikeyB , I think, @martindt1606, total panc'in 2010, @The robin, Judy who became T3c fairly recently after a total panc'y from lots of prior panc'y problems. There are others, but their tags aren't leaping out for me; bit brain dead this am!

 

[soupdragon]

Welcome @Graham2406 from another type 3c caused by one severe episode of necrotising pancreatitis.

As you may know, your PEI result shows severe enzyme insufficiency (below 200 is insufficiency, below 100 severe insufficiency). I've just had mine checked so the numbers stuck in my mind!

Referral to an HPB dietician with good knowledge of pancreatic issues for Creon (or similar replacement enzymes) and advice on dosage is needed.

You should then have a detailed vitamin and mineral screen every year and a bone density scan every 2 years so that any issues can be picked up early.

Creon dosing can take a bit of juggling to get right. I had a suggestion of 3 to 5 capsules with meals and 1 to 2 with snacks at one point but now manage with less. I am producing more pancreatic enzymes than you, though. You need to start taking Creon at the start of a meal. I've been told the enzymes keep working for 20 to 30 minutes so if still eating then you need more. You need more Creon with high fat meals so that may allow more flexibility with higher fat meals, if that's what you'd like.

How are your blood sugar levels with just metformin? I've been on insulin from the start. Access to an endocrinologist and specialist diabetes nurses would also be really helpful.

Good luck and please ask if there is anything else you'd like to know.

 

[soupdragon]

@Graham2406 I've assumed your PEI results were from a faecal elastase test?

 

[Proud to be erratic]

@Graham2406 you haven't mentioned if you are already on Creon. If not, perhaps that is something you and your GP should consider, even if only initially until you get Specialist advice. You can't overdose on Creon, so as a contingency it could be helpful.

 

[Graham2406]

Welcome @Graham2406 from another type 3c caused by one severe episode of necrotising pancreatitis.

As you may know, your PEI result shows severe enzyme insufficiency (below 200 is insufficiency, below 100 severe insufficiency). I've just had mine checked so the numbers stuck in my mind!

Referral to an HPB dietician with good knowledge of pancreatic issues for Creon (or similar replacement enzymes) and advice on dosage is needed.

You should then have a detailed vitamin and mineral screen every year and a bone density scan every 2 years so that any issues can be picked up early.

Creon dosing can take a bit of juggling to get right. I had a suggestion of 3 to 5 capsules with meals and 1 to 2 with snacks at one point but now manage with less. I am producing more pancreatic enzymes than you, though. You need to start taking Creon at the start of a meal. I've been told the enzymes keep working for 20 to 30 minutes so if still eating then you need more. You need more Creon with high fat meals so that may allow more flexibility with higher fat meals, if that's what you'd like.

How are your blood sugar levels with just metformin? I've been on insulin from the start. Access to an endocrinologist and specialist diabetes nurses would also be really helpful.

Good luck and please ask if there is anything else you'd like to know.

My HBA1c is pretty steady at 42 with just having the Metformin, but I was wondering if the very low PEI meant that I wasn't absorbing sugars as well as vitamins, fats etc (not sure if that is a stupid idea, but I'm still new to all this).
Thanks for you response, I found it very useful and it will help me have an informed discussion with my GP.

 

[Graham2406]

The significance of the PEI number means nothing to me. But can't help wondering what brought about the test to get your result of 57?
Regardless I'm flagging this up to some of the T3cs that I can recall and no doubt some will add value, if they can:
@eggyg, long term T3c (who is on holiday so might not have quick WiFi access); @soupdragon, had pancreatitis since 2019(?), @nonethewiser, a T1 originally now with exocrine insufficiency, @Jaec, a T2 with chronic pancreatitis, @Hepato-pancreato, @stackingcups , T3c after loss of gall bladder and 2? yrs of acute panc'y, @mikeyB , I think, @martindt1606, total panc'in 2010, @The robin, Judy who became T3c fairly recently after a total panc'y from lots of prior panc'y problems. There are others, but their tags aren't leaping out for me; bit brain dead this am!

I read an article in Balance that talked about "unusual" types of diabetes and T3c seemed to tick the boxes for me. Especially as I didn't present with any of the risk factors normally associated with T2, and also with my diabetes starting so soon after the pancreatic necrosis. So I asked my GP for the test.

 

[Graham2406]

You definitely need referring to an endocrinologist for the diabetes side of things. Probably at a diabetes clinic at your nearest hospital. Have you also been prescribed Creon?

I've not been prescribed anything yet for the PEI, so will be chasing this up with my GP next week.

 

[Graham2406]

@Graham2406 I've assumed your PEI results were from a faecal elastase test?

Yes, they were.

 

[trophywench]

I'm so sorry @Graham2406 - it's far from a laughing matter - but whoever knew faeces could be stretchy?

(yes - I do realise it isn't that .... just my stupid sense of humour)

 

[Graham2406]

I'm so sorry @Graham2406 - it's far from a laughing matter - but whoever knew faeces could be stretchy?

(yes - I do realise it isn't that .... just my stupid sense of humour)

I think we need to keep a sense of humour when dealing with something like this.

 

[nonethewiser]

Yes, they were.

That result is really low my friend, for comparison think mine was 130 which was classed as moderate or mild on scale.

You need to be referred to specialist & started on Creon, you will start on low dose where you will adjust amount taken depending on meals, so bit of trial & error. Creon isn't a drug & is classed as a supplement so its safe to take, comes from pigs pancreas no other animals.

 

[Graham2406]

That result is really low my friend, for comparison think mine was 130 which was classed as moderate or mild on scale.

You need to be referred to specialist & started on Creon, you will start on low dose where you will adjust amount taken depending on meals, so bit of trial & error. Creon isn't a drug & is classed as a supplement so its safe to take, comes from pigs pancreas no other animals.

Still can't get my head around why my result is so low, but I don't have the usual bowel symptoms. Trust me to be different

 

[trophywench]

I think we need to keep a sense of humour when dealing with something like this.

Well exactly! My late MiL (with terminal bowel cancer) said no way was she going to have chemo because it makes your hair fall out. I said Your decision entirely and we all respect that. Just imagine, when you drop dead we'll all be able to gather round Jack Hackett's (local funeral director) to view your body and obviously all be able to comfort each other as you do, by saying what a terrible pity it was that Mum had to leave us so soon - but didn't she still have a beautiful head of hair until the end? Ah well.

And changed the subject.

Two days later she told both her sons and DiLs she'd changed her mind ! Even said, 'I was being daft, wasn't I?' I laughed and said Good! but I'd never have said that about you Mum!

 

[soupdragon]

My HBA1c is pretty steady at 42 with just having the Metformin, but I was wondering if the very low PEI meant that I wasn't absorbing sugars as well as vitamins, fats etc (not sure if that is a stupid idea, but I'm still new to all this).
Thanks for you response, I found it very useful and it will help me have an informed discussion with my GP.

Not a stupid idea at all @Graham2406 ! Amylase, to digest carbohydrates, is produced by the pancreas so Creon does contain amylase (as well as protease and lipase). Not quite as big an issue as the lack of lipase to digest fats, though, as lipase is only produced by the pancreas whereas amylase production also happens in the mouth.
So, it is possible that you're not absorbing all the carbohydrate that you're eating and when Creon is started your blood glucose could increase.

Good luck with getting the Creon started as that should help with absorption and hopefully you'll start to feel better. I'd be pushing for the full vitamin and mineral screen as well. Mine is organised by the HPB dietician. It picked up a couple of low levels for me and I'm now starting to feel a bit more human with some more supplements!

 

[Graham2406]

Not a stupid idea at all @Graham2406 ! Amylase, to digest carbohydrates, is produced by the pancreas so Creon does contain amylase (as well as protease and lipase). Not quite as big an issue as the lack of lipase to digest fats, though, as lipase is only produced by the pancreas whereas amylase production also happens in the mouth.
So, it is possible that you're not absorbing all the carbohydrate that you're eating and when Creon is started your blood glucose could increase.

Good luck with getting the Creon started as that should help with absorption and hopefully you'll start to feel better. I'd be pushing for the full vitamin and mineral screen as well. Mine is organised by the HPB dietician. It picked up a couple of low levels for me and I'm now starting to feel a bit more human with some more supplements!

Once again, thanks for all the details.
I really feel that I am so much better prepared for when I do get to see an Endocrinologist.
But, I'm sure that I will be back with more questions as some point!!