Confused newbie

[Ciris]

Hello

I'm 71 years old and just over 10 years ago my pancreas "blew up", severe acute necrotising pancreatitis (hundreds of gallstones). Four years later I was diagnosed diabetic whilst in hospital due to sepsis and side effects from chemo after having breast cancer surgery. I expected to be treated as having type 3c diabetes (no pancreas as badly damaged), but being treated for type 1 as I'm not producing insulin, but a new consultant insisted on treating me for type 2 also with metphormin as I have antibodies killing off the insulin (Nova rapid and Lantus). He dismissed my claims that I was told metphormin could cause pancreatitis, consequently, my GP was close to admitting me to hospital due to a bad pancreatitis attack after taking it. Thankfully, I now have a different consultant. Eager to learn from other sufferers. Just been fitted with a Libre 2 monitor. Thank you.

 

[Inka]

Welcome @Ciris 🙂 That does sound like Type 3c initially but then you mentioned antibodies There are what are called Type 1 antibodies which are auto-immune and kill the insulin-producing cells in the pancreas. I suppose there’s no reason why a person with a damaged pancreas couldn’t get Type 1 (auto-immune).

But then you mentioned Type 2, which is often connected to insulin resistance. I don’t understand the comment about Metformin. Are you sure the consultant didn’t say you have resistance to insulin rather than antibodies? Metformin helps insulin resistance. How much of each insulin do you take and when?

 

[Ciris]

Welcome @Ciris 🙂 That does sound like Type 3c initially but then you mentioned antibodies There are what are called Type 1 antibodies which are auto-immune and kill the insulin-producing cells in the pancreas. I suppose there’s no reason why a person with a damaged pancreas couldn’t get Type 1 (auto-immune).

But then you mentioned Type 2, which is often connected to insulin resistance. I don’t understand the comment about Metformin. Are you sure the consultant didn’t say you have resistance to insulin rather than antibodies? Metformin helps insulin resistance. How much of each insulin do you take and when?

Thank you for your reply Inka. I don't have a pancreas as it "blew up", just the tiny end where I was producing a tiny bit of insulin for the first 4 years before I was diagnosed with (according to the hospital where I was admitted for sepsis) type 3c. The diabetic unit at my home town hospital later diagnosed type 1 and then in a letter (the consultant who wanted me to take Metphormin) said I wasn't producing insulin so was being treated as type 1, and as I had anti bodies destroying the insulin I should also be treated with Metphormin for type 2 - that's in print so don't know whether it's the same thing you mention.

I understand diabetic units are reluctant to give diabetics an absolute diagnosis for type 3c, and my remarks were flippantly dismissed at the time, I was very low at the time and in no frame of mind to argue the point not having the full facts. Not sure if the treatment would be the same anyway.

Before 21 Dec 23 I took 12-15 units of Nova Rapid before each of my three meals (this was an educated guess after a glucose test and what I was having to eat, which wasn't a problem for breakfast and lunch - but I could take a few extra units if my glucose spiked to bring it down in the evenings, but this wasn't regularly). I also took 20 units of Lantus in the evening. However, since I have had the Libre 2 everything has changed and I can see exactly what is happening. I now take 22 units Lantus, but found I need 15 units before each meal to keep my glucose levels below 10 (with the highest spike of 12 after food). I don't get much exercise due to other health problems, but if I occasionally walk around the supermarket for half an hour my glucose level drops to below 4, so the Libre 2 is great in this respect. Hope this clears a few points up.

 

[Wendal]

Evening Ciris,
Your history of nectrotizing pancreatitis is similar to mine so a 3c diagnosis would be very consistent.
I make a couple of points there is evidence that in some cases Metaformin can be used to medicate 3c but as you are aware it is mainly used in managing Type 2 which is much more about insulin resistance.
To me 3c if you have severe necrosis of your pancreatic cells leading to diabetes then this is much more likely to be much more in common with Type 1 so essentially an insulin deficiency ( even if there is some Beta cell production) just with a different cause to Type 1 so pancreatic damage rather than auto immune and hence in my case I was prescribed insulin rather than Metaformin but my GP has said that is an option but I am managing very well on insulin so happy to stay on it.

 

[Ciris]

Evening Ciris,
Your history of nectrotizing pancreatitis is similar to mine so a 3c diagnosis would be very consistent.
I make a couple of points there is evidence that in some cases Metaformin can be used to medicate 3c but as you are aware it is mainly used in managing Type 2 which is much more about insulin resistance.
To me 3c if you have severe necrosis of your pancreatic cells leading to diabetes then this is much more likely to be much more in common with Type 1 so essentially an insulin deficiency ( even if there is some Beta cell production) just with a different cause to Type 1 so pancreatic damage rather than auto immune and hence in my case I was prescribed insulin rather than Metaformin but my GP has said that is an option but I am managing very well on insulin so happy to stay on it.

Thank you for replying Wendal. I am also managing very well on insulin and refuse to take Metphormin ever again. I don't have a pancreas after it "blew up", just the tiny end where I was producing a tiny bit of insulin 10 years ago but it's defunct now. I can't digest food having no pancreas and take Creon to digest protein and fat. Since being fitted with a Libre 2 in December it has been a revelation regarding my food spikes and how much insulin I should be taking (just a few minor teething problems). I think I will mention type 3c to my new consultant next time I have an appointment as he was very helpful during my last appointment. Thank you again.

 

[Wendal]

Thanks for response and like you I had extensive necrosis following a severe AP attack but that was in March 22 but exocrine cells affected and like you as the endocrine are located in a different part of pancreas it can take a while( varies a lot) to develop the diabetes so in my case it was Aug 23.
Like you I take Creon and have generally got everything under control and the Libre 2 helps a lot.
Good to mention the 3c as the extra potential complication is the possible impairment of the Glucagon producing as well as the insulin Beta cells and that can make the diabetes more brittle than pure Type 1.

 

[everydayupsanddowns]

Welcome to the forum @Ciris

You aren’t alone in having experienced some reluctance from healthcare professionals to embrace the relatively new Type 3c classification. One of our members @eggyg found she had to be quite persistent!

But your description fits very well with the descriptions on this page

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

I can't say I really understand what the consultant meant by antibodies ‘destroying the insulin’ and needing Metformin… Because that’s not what the antibodies do, or how Metformin works! I wonder if there was a mix-up between the letter being dictated and transcribed?

As I understand it, metformin can be used in some cases of Type 3c where there is still a reasonable amount of insulin production and the damage to the pancreas is only minor (because it helps the remaining insulin to work more effectively) - but that doesn’t seem to be the case in your situation.

Glad you have the Libre2, and that you now have a new consultant who seems more helpful 🙂

 

[Wendal]

Welcome to the forum @Ciris

You aren’t alone in having experienced some reluctance from healthcare professionals to embrace the relatively new Type 3c classification. One of our members @eggyg found she had to be quite persistent!

But your description fits very well with the descriptions on this page

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

I can't say I really understand what the consultant meant by antibodies ‘destroying the insulin’ and needing Metformin… Because that’s not what the antibodies do, or how Metformin works! I wonder if there was a mix-up between the letter being dictated and transcribed?

As I understand it, metformin can be used in some cases of Type 3c where there is still a reasonable amount of insulin production and the damage to the pancreas is only minor (because it helps the remaining insulin to work more effectively) - but that doesn’t seem to be the case in your situation.

Glad you have the Libre2, and that you now have a new consultant who seems more helpful 🙂

Morning everyday,
Your logic is absolutely correct that the way any non insulin medication works whether Metaformin or for eg an SGLT2 inhibitor works is totally dependent on sufficient insulin being produced as effectively they are improving the insulin resistance aspect as well as maybe giving the Beta cells a rest to then possibly produce a bit more.
As you say with 3c the level of insulin production can vary depending on extent of pancreatic damage hence whether you can get away with Metaformin or need insulin.
It does make sense to me that likes of myself and Ciris who both seem happy on insulin just stick with it given our history and current managemen.
My GP has mentioned the possibility of Metaformin for myself but am very happy on the insulin and don’t quite see the benefits of even considering a switch at the moment