Newbie says hello!

[NickiW]

Hi everyone! I’m so glad to have found this website, I was told last week that I’m diabetic following a second blood test. I’ve had pancreatic exocrine insufficiency for 8 years so it didn’t come as a huge surprise. Im hoping to find some info on type 3c as I suspect that is what I have.

 

[42istheanswer]

Hi @NickiW there are a few members with type 3c who regularly post. @eggyg comes to mind but my brain is currently not providing the names of the others!

 

[rebrascora]

Hi and welcome.

Presumably you take Creon for your PEI? Do you know what caused your PEI? Chronic or acute pancreatitis perhaps?

Do you know the result of your HbA1c blood test which is used to diagnose diabetes?

What dietary advice or and/or medication have you been given for the diabetes?

Have your health care professionals mentioned Type 3c? Unfortunately many GPs are unaware of the classification but essentially it is diabetes caused by damage to the pancreas through disease, trauma or surgery and eventually you will need insulin if this is the case and should be treated similar to Type 1 diabetics rather than Type 2, but unfortunately many GPs are unaware of this.

You would be well advised to push for a referral to a specialist diabetes clinic because Type 3c is more complicated than straight forward Type 1 in many respects although you may get away with Type 2 oral medication plus dietary changes for a while.

Other regular contributors on the forum who are Type 3c are @Proud to be erratic and @soupdragon and hopefully the will be along in due course to offer their experiences..... and correct me if I have misstated anything 🙄 .

 

[soupdragon]

Hi @NickiW and welcome to the forum.
I'm 3c following pancreatitis. Others on the forum are Type 3c following removal of part or all of their pancreas. I've not much pancreas left so have been on insulin from the start and treated in the same way as Type 1 (injecting long acting and short acting insulin) with the addition of Creon for the PEI.
As @rebrascora mentioned, it would be helpful to know what your HBA1C result was as it allows us to make more useful suggestions.
The hospital clinic that I attend has a lot of experience of treating Type 3cs, which is great for me.

Do you have any particular questions about Type 3c? If so please ask.

 

[Proud to be erratic]

Hi everyone! I’m so glad to have found this website, I was told last week that I’m diabetic following a second blood test. I’ve had pancreatic exocrine insufficiency for 8 years so it didn’t come as a huge surprise. Im hoping to find some info on type 3c as I suspect that is what I have.

Hi @NickiW and welcome,
I'm T3c as a result of a total pancreatectomy so I can't particularly relate to your circumstances and I know very little about pancreatitis. But I wish you all success in managing your PEI and there are others on this forum who should be able to offer more constructive help.

 

[NickiW]

Hi and welcome.

Presumably you take Creon for your PEI? Do you know what caused your PEI? Chronic or acute pancreatitis perhaps?

Do you know the result of your HbA1c blood test which is used to diagnose diabetes?

What dietary advice or and/or medication have you been given for the diabetes?

Have your health care professionals mentioned Type 3c? Unfortunately many GPs are unaware of the classification but essentially it is diabetes caused by damage to the pancreas through disease, trauma or surgery and eventually you will need insulin if this is the case and should be treated similar to Type 1 diabetics rather than Type 2, but unfortunately many GPs are unaware of this.

You would be well advised to push for a referral to a specialist diabetes clinic because Type 3c is more complicated than straight forward Type 1 in many respects although you may get away with Type 2 oral medication plus dietary changes for a while.

Other regular contributors on the forum who are Type 3c are @Proud to be erratic and @soupdragon and hopefully the will be along in due course to offer their experiences..... and correct me if I have misstated anything 🙄 .

Hi there, thanks so much for you reply. Yes, I’ve been taking 25000ui creon tabs since 2016, my dose was doubled in December after I was hospitalised and developed re-feeding system so now taking 8-10 with meals. I’ve had lots of problems with malabsorbtion especially potassium so I now take 3 high dose potassium daily, 20 mg Omeprazole, high strength multi vit and 20 mg rosuvastatin.
Tests couldn’t confirm what caused PEI but there is history of very high cholesterol and heart disease on my dads side, when I was tested 3 years ago my level was 13 so it may be that.
My HBA1c was 49 when tested in September, second test last week was same, so not really bad but flagging as diabetic. I’ve had no advice / medication yet and my first session with my GP practice nurse on 24/11.
I guess my big worry is managing BG along with the PEI digestive issues I have, hoping I’ll find some advice from others on this site with similar problem ☺️

 

[Proud to be erratic]

Hi there, thanks so much for you reply. Yes, I’ve been taking 25000ui creon tabs since 2016, my dose was doubled in December after I was hospitalised and developed re-feeding system

Don't know what re-feeding system means? Apologies for my ignorance.

so now taking 8-10 with meals. I’ve had lots of problems with malabsorbtion especially potassium so I now take 3 high dose potassium daily, 20 mg Omeprazole, high strength multi vit and 20 mg rosuvastatin.

I take about the same Creon, up to 30 @25k daily, even 1 with a milky coffee; along with 20mg Omneprazole, multi vit and vit D. No statins, have good cholesterol levels.

Tests couldn’t confirm what caused PEI

What Specialist is helping you with your PEI? I imagine it should be an Endocrinologist, but for malabsorption I came under a Gastroenterologist and a great dietician; my experience of dieticians is very mixed - I know I've been lucky to come across more than one, but my treatment has straddled 2 Counties and 2 Trusts. My first dietician was excellent, which allowed me to realise that my second one was well adrift!

Apart from the cause of PEI it is important to find out what damage might have been caused, particularly to your pancreas, but also other associated organs. Have you had any scans recently.

but there is history of very high cholesterol and heart disease on my dads side, when I was tested 3 years ago my level was 13 so it may be that.
My HBA1c was 49 when tested in September, second test last week was same, so not really bad but flagging as diabetic. I’ve had no advice / medication yet and my first session with my GP practice nurse on 24/11.

GP Practice nurses are not necessarily the best people to advise on dealing with elevated BG for T3cs. They encounter mainly T2s and have fairly standard NHS driven protocols - which does not include providing a meter for testing BG on a daily basis. If your Practice won't provide a test meter on prescription you might find it helpful to purchase one; the meter cost is relatively slight, the test strips are the main expense. It really helps to know precisely which foods suit your needs and we each can respond very differently to what might seem to be the same food item.

This is not the fault of Practice nurses; T3c is truly unusual, inevitably outside of their experience and it is highly likely that yours may not have even heard of T3c. There are still GPs not only unaware of the existence of T3c but denying its existence, believing there only 2 types of diabetes and you are not T1. Given your longstanding PEI experiences you would be best supported by a referral to a Specialist, which also has a dietician within that team; even though you are a long way from being insulin dependent.

I guess my big worry is managing BG along with the PEI digestive issues I have, hoping I’ll find some advice from others on this site with similar problem ☺️

Meanwhile, with HbA1c at 49 (as you say that's not too bad) I would guess that you don't particularly want any other medications to join your existing modest cocktail! So I suspect you first need to either reduce the carb content of your meals, by looking specifically for lower carb replacements; or reduce portion sizes (or even a mix of both) - rather than any more medications at this stage. You will already know what food works better for you, so it's a matter of identifying the higher carb items and whittling those down. It is better to make changes steadily rather than drastically.

There is loads of advice on this forum about reduction of carbs for T2s generally. Not so much advice specifically for T3s, because there are so few of us. However just knowing that T3c advice is limited means you know you have to weave your own way in selecting what things work for you - both for PEI and diabetes. I hope that doesn't sound too obvious or unhelpful. There is an abundance of knowledge here about many aspects of metabolism and health in general, not just diabetes. Just ask, no question is considered stupid.

 

[NickiW]

Don't know what re-feeding system means? Apologies for my ignorance.

I take about the same Creon, up to 30 @25k daily, even 1 with a milky coffee; along with 20mg Omneprazole, multi vit and vit D. No statins, have good cholesterol levels.

What Specialist is helping you with your PEI? I imagine it should be an Endocrinologist, but for malabsorption I came under a Gastroenterologist and a great dietician; my experience of dieticians is very mixed - I know I've been lucky to come across more than one, but my treatment has straddled 2 Counties and 2 Trusts. My first dietician was excellent, which allowed me to realise that my second one was well adrift!

Apart from the cause of PEI it is important to find out what damage might have been caused, particularly to your pancreas, but also other associated organs. Have you had any scans recently.

GP Practice nurses are not necessarily the best people to advise on dealing with elevated BG for T3cs. They encounter mainly T2s and have fairly standard NHS driven protocols - which does not include providing a meter for testing BG on a daily basis. If your Practice won't provide a test meter on prescription you might find it helpful to purchase one; the meter cost is relatively slight, the test strips are the main expense. It really helps to know precisely which foods suit your needs and we each can respond very differently to what might seem to be the same food item.

This is not the fault of Practice nurses; T3c is truly unusual, inevitably outside of their experience and it is highly likely that yours may not have even heard of T3c. There are still GPs not only unaware of the existence of T3c but denying its existence, believing there only 2 types of diabetes and you are not T1. Given your longstanding PEI experiences you would be best supported by a referral to a Specialist, which also has a dietician within that team; even though you are a long way from being insulin dependent.

Meanwhile, with HbA1c at 49 (as you say that's not too bad) I would guess that you don't particularly want any other medications to join your existing modest cocktail! So I suspect you first need to either reduce the carb content of your meals, by looking specifically for lower carb replacements; or reduce portion sizes (or even a mix of both) - rather than any more medications at this stage. You will already know what food works better for you, so it's a matter of identifying the higher carb items and whittling those down. It is better to make changes steadily rather than drastically.

There is loads of advice on this forum about reduction of carbs for T2s generally. Not so much advice specifically for T3s, because there are so few of us. However just knowing that T3c advice is limited means you know you have to weave your own way in selecting what things work for you - both for PEI and diabetes. I hope that doesn't sound too obvious or unhelpful. There is an abundance of knowledge here about many aspects of metabolism and health in general, not just diabetes. Just ask, no question is considered stupid.

Hi, re- feeding syndrome happens when you are severely malnourished. I had been very unwell following Covid in Nov 21 and had D&V, I couldn’t keep food or fluids down so went to A&E assuming it was just my potassium that was low as usual. POT was 1.7 ( normal is 5) and my digestive system had shut down and I had stopped producing insulin. They put me on a drip in resus but potassium kept dropping. Next my magnesium and sodium disappeared, then calcium and B12. I was in hospital for 2 weeks and only stayed out of ITC thanks to my fantastic doctor but the experience was pretty traumatic as re-feeding can cause heart attack and coma. Since then I have been back in for low pot again, and also been diagnosed with osteoporosis.

 

[NickiW]

Hi, re- feeding syndrome happens when you are severely malnourished. I had been very unwell following Covid in Nov 21 and had D&V, I couldn’t keep food or fluids down so went to A&E assuming it was just my potassium that was low as usual. POT was 1.7 ( normal is 5) and my digestive system had shut down and I had stopped producing insulin. They put me on a drip in resus but potassium kept dropping. Next my magnesium and sodium disappeared, then calcium and B12. I was in hospital for 2 weeks and only stayed out of ITC thanks to my fantastic doctor but the experience was pretty traumatic as re-feeding can cause heart attack and coma. Since then I have been back in for low pot again, and also been diagnosed with osteoporosis.

I also take creon with everything now, I had just been given the creon in 2016 with no advice on how to take or how much. I saw a dietician in December before being discharged who gave me proper guidance. Because I am nauseous a lot of the time and sick daily I find it hard to eat but have been forcing myself to have small meals.
a follow up in July with hospital was cancelled at last minute and I’ve had no new appointment scheduled so far So I’m just doing my best with no real medical support. I’ve probably had more info in last few days from this forum and website than I’ve had for 6 years! I’m so grateful for your help, I’ve never met anyone else with a similar problem.

 

[soupdragon]

Thanks for the extra information @NickiW
You're absolutely right that an HBA1C of 49 is not too bad so you may be able to manage by reducing your carb intake, although I do understand that juggling your food intake is already tricky.
Glad to hear that you've been given more guidance about the use of Creon and hope that you continue to get some dietician support.
If you're going to continue to be treated by the GP surgery for your diabetes I would just make absolutely sure that they remember the issues that you've had and that the standard approach for managing Type 2 diabetes may not be relevant for you. Also, that they keep monitoring your HBA1C.

I hope the appointment is useful for you. Any questions please ask.

 

[everydayupsanddowns]

Goodness! What a time of it you’ve been having @NickiW

Are they investigating the cause of tour nausea and sickness? That sounds pretty grim, and something it would greatly improve quality of life to try to reduce or resolve.

Welcome to the forum!