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Understanding Type 3C diabetes

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Cherrang

New Member
Relationship to Diabetes
Type 3c
Hi,
just come back from my appointment with the diabetic nurse. Three months ago I had a distal pancreatectomy and splenectomy. Before the op my level was 42 making me prediabetic - I did question whether it was the large cyst on my pancreas causing this but nobody could tell. Three months on my level has risen to 56 and I am due to start on Metformin. I was prewarned I could become diabetic but it was still a shock to the system. My diabetic nurse gave me a pack for type 2 but I know the rise in levels is due to me losing some of my pancreas, but is type 3C only diagnosed if you are both diabetic and need to take creon (enzymes for digestion) or can I be classed as type 3C as I don’t need creon?
Also The nurse suggested I take statins with the metformin, my cholesterol levels were good but she said that it would help prevent chronic heart disease. Is this something I should take her up on? I just felt very old and very I’ll very quickly.
Thank you for your help.
 
As you are type 3c then you need insulin, you are not type 2 as I understand it.
Edited to add welcome to the forum 🙂
 
Last edited:
As you are type 3c then you need insulin, you are not type 2 as I understand it.
Edited to add welcome to the forum 🙂
diabetes uk say you can be started off on metformin to help control blood sugars.
 

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diabetes uk say you can be started off on metformin to help control blood sugars.
It say Metformin or insulin which does surprise me but if Metformin isn't working then it's insulin and you are then treated as if you have type1 🙂 Being type 1 is better as you can eat what you want 🙂
 
Welcome @Cherrang I too had the same op in 2007 aged 47. I didn’t become diabetic for three years, got treat with Metformin for another 3.5 years before going onto insulin. Unfortunately, we can’t grow a new pancreas so insulin is inevitable eventually. Lots of health professionals, including DSNs, don’t know much, if anything, about 3c. It took me a lot of nagging my nurse and doing lots of my own research before they even “allowed” me to go on a course to learn how to be a insulin dependent diabetic. DAFNE. I also got my type changed from type 2 to type 3c to enable me to access technology like the Freestyle Libre 2 and possibly a pump in later years. If you see your numbers rising whatever you do to control them you will probably need insulin. Any questions fire away. Elaine.
 
Hello @Cherrang, and welcome to this forum. Apologies if this reply feels lengthy - you're diagnosis is complex and I hope all below helps.

Taking one step back: the type of diabetes you have is defined by the cause, not the treatment.
So Type 1, some 10% 0f the diabetic population, is for people who can't make insulin because of an auto immune condition. Once this happens they MUST take insulin (or die), invariably taken by injection.
Type 2, some 90% of the diabetic population, is for people who make insulin, but develop a very high resistance (usually as adults) to that insulin, for a variety of reasons and so can't use the insulin they make. Their treatment tends to start with oral meds, including metformin, which help them overcome this insulin resistance and treatment sometimes ends up with insulin by injection. That change in treatment does NOT change their T2 diagnosis. Slightly confusingly, it is becoming clear that some folks are initially (wrongly) diagnosed as T2, but are actually T1 - so their diagnosis has to change, because the autoimmune condition has finally become clear.
That leaves a few other types of diabetes, which make up around 1% of the total diabetic population. A few have titles that make things clear, such as gestational diabetes, usually a temporary status and akin to T2, ie temporary increased insulin resistance. Others have types such as LADA, Type 1.5 and Type 3; there are more.

This latter group, T3, includes people whose pancreas has been damaged from a wide range of circumstances, such as (in no particular order): excess of alcohol, steroids, cystic fibrosis, hemochromatosis, serious external injury, pancreatitis with various degrees of consequent pancreatic damage, including partial pancreatic surgery (yourself); and in my case a total pancreatectomy for pancreatic cancer. There are various flavours of T3, from a-k and explaining those further is tricky - since they originate in the USA, are not fully agreed internationally and often frequently neither recognised nor is the significance of these appreciated by too many UK medical practicioners; they are either in denial or failing to keep up and invariably these causes just (often inappropriately) attract the tag of T2!

By no means all T3s are totally insulin dependent and specifically NOR are all T3cs. They might be, but might also just be needing oral meds to help their metabolism deal with excess of glucose in their blood.

I am T3c. Clearly not T1, nor T2. Yet my hospital discharge paperwork records me as T1, which at least confirms my total insulin dependency and eligibility for T1 treatments; despite my claiming T3c status, still some Consultants see my original discharge record and sustain the original erroneous T1 diagnosis. My 1st DSN brushed that aside by saying accept it and move on; if I ended up unconscious in A&E most Drs there would not know what T3c was and might treat me as T2 without that paper record of T1. Damning indictment of medical knowledge in A&E - but presumably realistic. But my diabetes is not because of pancreatitis (which I infer is the original cause of your pancreatic problems - please correct me if that is wrong). I (just!) have no pancreas, with many of the T1 issues associated with insulin dependency; plus missing other key hormones including glucagon and somostatin (which balance insulin and glucagon activity); no digestive enzymes, hence total dependency on Creon; a slightly rearranged internal plumbing; and (as I've just found out following emergency abdominal surgery) scar tissue which hardens with time and can snag and block that internal plumbing!!

So you, in my non- medical opinion, are T3c (from distal pancreatectomy) and not T2. You have a damaged pancreas, or in more medical parlance 'impaired pancreatic endocrine function' - not undue insulin resistance akin to T2. Whether you need insulin at this stage is for others to assess; you might not. But you should be under a Specialist Diabetes Team, ie a DSN and Endocrinologist.

My, non-medical but strong advice, is do NOT assume, no matter how well intentioned, that your GP surgery and the frequently encountered Practice Diabetes Nurse have any understanding of the complexity of your medical condition. I think it is highly likely that in due course your condition will alter and I would not be surprised if you at some future stage will need insulin; should I be right, my advice would be don't resist that; it will, at that stage, make managing your D easier. If you are already under the umbrella of a hospital based Specialist Team you will have somewhere to turn to if things change, without needing a specific GP referral. If you are not under such a Team seek a referral now for this; there are specific tests which can determine your pancreatic endocrine insufficiency and thus provide a starting baseline for reference in the future.

I can't speak about statins; I don't need these and have a strong personal view that I don't readily take medications I don't need. Too many chemicals already going into me daily!

I hope this (too long) reply helps with understanding T3c diabetes.
 
Welcome @Cherrang I too had the same op in 2007 aged 47. I didn’t become diabetic for three years, got treat with Metformin for another 3.5 years before going onto insulin. Unfortunately, we can’t grow a new pancreas so insulin is inevitable eventually. Lots of health professionals, including DSNs, don’t know much, if anything, about 3c. It took me a lot of nagging my nurse and doing lots of my own research before they even “allowed” me to go on a course to learn how to be a insulin dependent diabetic. DAFNE. I also got my type changed from type 2 to type 3c to enable me to access technology like the Freestyle Libre 2 and possibly a pump in later years. If you see your numbers rising whatever you do to control them you will probably need insulin. Any questions fire away. Elaine.
Thank you for replying with your experience. Forums like this one have been invaluable for finding out information the doctors don’t give you. I have a follow up call with the nurse this week and have already lined up my questions.
 
Hello @Cherrang, and welcome to this forum. Apologies if this reply feels lengthy - you're diagnosis is complex and I hope all below helps.

Taking one step back: the type of diabetes you have is defined by the cause, not the treatment.
So Type 1, some 10% 0f the diabetic population, is for people who can't make insulin because of an auto immune condition. Once this happens they MUST take insulin (or die), invariably taken by injection.
Type 2, some 90% of the diabetic population, is for people who make insulin, but develop a very high resistance (usually as adults) to that insulin, for a variety of reasons and so can't use the insulin they make. Their treatment tends to start with oral meds, including metformin, which help them overcome this insulin resistance and treatment sometimes ends up with insulin by injection. That change in treatment does NOT change their T2 diagnosis. Slightly confusingly, it is becoming clear that some folks are initially (wrongly) diagnosed as T2, but are actually T1 - so their diagnosis has to change, because the autoimmune condition has finally become clear.
That leaves a few other types of diabetes, which make up around 1% of the total diabetic population. A few have titles that make things clear, such as gestational diabetes, usually a temporary status and akin to T2, ie temporary increased insulin resistance. Others have types such as LADA, Type 1.5 and Type 3; there are more.

This latter group, T3, includes people whose pancreas has been damaged from a wide range of circumstances, such as (in no particular order): excess of alcohol, steroids, cystic fibrosis, hemochromatosis, serious external injury, pancreatitis with various degrees of consequent pancreatic damage, including partial pancreatic surgery (yourself); and in my case a total pancreatectomy for pancreatic cancer. There are various flavours of T3, from a-k and explaining those further is tricky - since they originate in the USA, are not fully agreed internationally and often frequently neither recognised nor is the significance of these appreciated by too many UK medical practicioners; they are either in denial or failing to keep up and invariably these causes just (often inappropriately) attract the tag of T2!

By no means all T3s are totally insulin dependent and specifically NOR are all T3cs. They might be, but might also just be needing oral meds to help their metabolism deal with excess of glucose in their blood.

I am T3c. Clearly not T1, nor T2. Yet my hospital discharge paperwork records me as T1, which at least confirms my total insulin dependency and eligibility for T1 treatments; despite my claiming T3c status, still some Consultants see my original discharge record and sustain the original erroneous T1 diagnosis. My 1st DSN brushed that aside by saying accept it and move on; if I ended up unconscious in A&E most Drs there would not know what T3c was and might treat me as T2 without that paper record of T1. Damning indictment of medical knowledge in A&E - but presumably realistic. But my diabetes is not because of pancreatitis (which I infer is the original cause of your pancreatic problems - please correct me if that is wrong). I (just!) have no pancreas, with many of the T1 issues associated with insulin dependency; plus missing other key hormones including glucagon and somostatin (which balance insulin and glucagon activity); no digestive enzymes, hence total dependency on Creon; a slightly rearranged internal plumbing; and (as I've just found out following emergency abdominal surgery) scar tissue which hardens with time and can snag and block that internal plumbing!!

So you, in my non- medical opinion, are T3c (from distal pancreatectomy) and not T2. You have a damaged pancreas, or in more medical parlance 'impaired pancreatic endocrine function' - not undue insulin resistance akin to T2. Whether you need insulin at this stage is for others to assess; you might not. But you should be under a Specialist Diabetes Team, ie a DSN and Endocrinologist.

My, non-medical but strong advice, is do NOT assume, no matter how well intentioned, that your GP surgery and the frequently encountered Practice Diabetes Nurse have any understanding of the complexity of your medical condition. I think it is highly likely that in due course your condition will alter and I would not be surprised if you at some future stage will need insulin; should I be right, my advice would be don't resist that; it will, at that stage, make managing your D easier. If you are already under the umbrella of a hospital based Specialist Team you will have somewhere to turn to if things change, without needing a specific GP referral. If you are not under such a Team seek a referral now for this; there are specific tests which can determine your pancreatic endocrine insufficiency and thus provide a starting baseline for reference in the future.

I can't speak about statins; I don't need these and have a strong personal view that I don't readily take medications I don't need. Too many chemicals already going into me daily!

I hope this (too long) reply helps with understanding T3c diabetes.
Thank you for replying. I didn’t have pancreatitis (well not that I know of) but I had a very large cyst growing in the tail of my pancreas which was making me unwell. I have questions I want answering but who will answer them I don’t know. The hospital which operated on me discharged me, but i am still under a gastroenterologist at my local hospital so i can ask them. You have given me lots of to think about.
 
Welcome to the forum @Cherrang

Hope you find the shared experiences and suggestions of forum members helpful as you find your own way through the diabetes maze. 🙂

Hopefully the hospital can answer your questions, or give you pointers for where you can ask them 🙂
 
Welcome @Cherrang I too had the same op in 2007 aged 47. I didn’t become diabetic for three years, got treat with Metformin for another 3.5 years before going onto insulin. Unfortunately, we can’t grow a new pancreas so insulin is inevitable eventually. Lots of health professionals, including DSNs, don’t know much, if anything, about 3c. It took me a lot of nagging my nurse and doing lots of my own research before they even “allowed” me to go on a course to learn how to be a insulin dependent diabetic. DAFNE. I also got my type changed from type 2 to type 3c to enable me to access technology like the Freestyle Libre 2 and possibly a pump in later years. If you see your numbers rising whatever you do to control them you will probably need insulin. Any questions fire away. Elaine.
That was a great explanation, thanks for sharing. Diagnosed a couple of months ago at 55. My nurse said I am T2 and my paperwork from the endocrinology team said T3c. I don’t think the label means that much (except perhaps if your in A&E as you say). It seems to me they treat the blood sugar levels your at rather than the type. In my case I was told with a HbA1C level of 94 I would go on insulin immediately however my diet was terrible so with the changes I made immediately by the time I started testing I was recording about 12/13 mmol and now I’m taking Metformin (500mg twice a day) they are averaging at 6.7 mmol.
The reason endocrinology said T3c is because I was in A&E with stomach pains. A CT scan showed dilated pancreatic duct and calcification. They say I must have had acute pancreatitis in the past but I’ve never had that pain so I’m not convinced and waiting on further investigations.
 
My nurse said I am T2 and my paperwork from the endocrinology team said T3c. I don’t think the label means that much (except perhaps if your in A&E as you say). It seems to me they treat the blood sugar levels your at rather than the type.
At face value that might sound or seem correct - in the very short term. But if the practioner, be they a practice nurse or GP is treating you against the assumption that you are T2 and have increased insulin resistance so your metabolism needs help (eg metformin, which improves the way your body handles the insulin you do make and suppresses glucose releases from the liver) then when there is any change there might not be any consideration to the underlying impaired endocrinol functionality.
The reason endocrinology said T3c is because I was in A&E with stomach pains. A CT scan showed dilated pancreatic duct and calcification.
I would imagine most GP Surgeries will have no knowledge or awareness of the complexity of this pancreatic dilation and calcification, might then persist in oral meds for T2 without seeking a formal review
by a Consultant. Personally, I would be grateful for the T3c diagnosis, since it provides a signpost for the future, if you are unlucky enough to develop further difficulties. If these don't arise, then no harm done; but .....
They say I must have had acute pancreatitis in the past but I’ve never had that pain
Does that mean it never happened, or you just didn't know? I had none of the normal pancreatic cancer symptoms, until a tumour abruptly strangled my bile duct; one minute I was fit and active, the next day I started a rapid downhill slide as the excess bilirubin tried to make me a fully debilitated zombie.
so I’m not convinced and waiting on further investigations.
I wish you good fortune with those further investigations and hope you get fuller answers. I've had some woolly explanations from 2 Endocrinologists, then I stumbled into a couple of related research papers which gave me sufficient vocabulary to ask more specific questions, which my 3rd Endo seems prepared to answer - but still with a caveat that this is uncertain territory; too few T3cs around from total pancreatectomies. I've pretty much stopped researching; but I feel I now have a reasonable background understanding of my circumstances.
 
Thank you
 
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