Lots to learn since being diagnosed Type 2 (ish) a few weeks ago ...

[zippyjojo]

Goodness @zippyjojo - what a lot you’ve been through!

This page will give you a basic introduction to type 3c

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

And of course you have our friendly forum ‘creonistas’ whose brains you can pick 🙂

Thank you - yes I suppose I have, but it could have been worse 🙂

 

[Proud to be erratic]

Thank you - yes I suppose I have, but it could have been worse 🙂

Jo,
It will probably help you to consider yourself as T3c, not T2ish. In an earlier post you refer to a Diabetes Nurse, presumably in a Specialist Team and you've had major surgery to your pancreas; so it's more than reasonable to conclude that your diabetes is a result of damage to your pancreas - the classic start point for T3.

The type of diabetes is determined by the cause, not the treatment. T1s have an autoimmune problem that stops them making insulin, they have to inject insulin to manage their BG (Blood Glucose). T2s have substantial resistance to the insulin they are making and thus need medication to assist with BG control; the medication ranges from oral tablets (eg Metformin) to injected Insulin, with options in between. T3s, various flavours from a to h, have physical damage to their pancreas.

If it sounds pedantic to get your condition correctly described, it really isn't. Many T2s are not supported very well because their treatment is, by direction of NICE, covered by GP surgeries where the diabetes expertise is frequently weak. T1s and T3s come under the umbrella of Specialist Teams and can directly seek help from these Teams, including an Endocrinilogist, without GP referral.

With T2 as your categorisation you could be signed off from your Spec Team and put back under your GP, when you appear stable. In the event of being rushed to A& E when you might not be very composed or clear, you might not get the best treatment for your circumstances; the A&E triage might see T2 on your notes and consider that a secondary issue.

I strongly suggest you pester to get your T2 categorisation adjusted to T3c. If your diabetes remains unchanged - then you will be fortunate. But you are taking metformin, which makes an already badly compromised pancreas work harder and there is a realistic prospect of that not being sustainable in the longer term. Diabetes is complicated and confusing; you're probably recognising that from reading threads on this forum. You may need the bigger umbrella of T3c in the future.

 

[Lucyr]

I strongly suggest you pester to get your T2 categorisation adjusted to T3c. If your diabetes remains unchanged - then you will be fortunate. But you are taking metformin, which makes an already badly compromised pancreas work harder and there is a realistic prospect of that not being sustainable in the longer term. Diabetes is complicated and confusing; you're probably recognising that from reading threads on this forum. You may need the bigger umbrella of T3c in the future.

Metformin does not make the pancreas work harder, it makes you more sensitive to the insulin you produce

 

[zippyjojo]

Jo,
It will probably help you to consider yourself as T3c, not T2ish. In an earlier post you refer to a Diabetes Nurse, presumably in a Specialist Team and you've had major surgery to your pancreas; so it's more than reasonable to conclude that your diabetes is a result of damage to your pancreas - the classic start point for T3.

The type of diabetes is determined by the cause, not the treatment. T1s have an autoimmune problem that stops them making insulin, they have to inject insulin to manage their BG (Blood Glucose). T2s have substantial resistance to the insulin they are making and thus need medication to assist with BG control; the medication ranges from oral tablets (eg Metformin) to injected Insulin, with options in between. T3s, various flavours from a to h, have physical damage to their pancreas.

If it sounds pedantic to get your condition correctly described, it really isn't. Many T2s are not supported very well because their treatment is, by direction of NICE, covered by GP surgeries where the diabetes expertise is frequently weak. T1s and T3s come under the umbrella of Specialist Teams and can directly seek help from these Teams, including an Endocrinilogist, without GP referral.

With T2 as your categorisation you could be signed off from your Spec Team and put back under your GP, when you appear stable. In the event of being rushed to A& E when you might not be very composed or clear, you might not get the best treatment for your circumstances; the A&E triage might see T2 on your notes and consider that a secondary issue.

I strongly suggest you pester to get your T2 categorisation adjusted to T3c. If your diabetes remains unchanged - then you will be fortunate. But you are taking metformin, which makes an already badly compromised pancreas work harder and there is a realistic prospect of that not being sustainable in the longer term. Diabetes is complicated and confusing; you're probably recognising that from reading threads on this forum. You may need the bigger umbrella of T3c in the future.

Thank you SO much!! To be fair to my GP surgery and lovely nurse it is still very early days and she has been very keen to point out to me that this hasn't happened because of lifestyle but because of surgery and has said that I'm neither one nor the other (T1 or T2) but there wasn't any mention of T3. She got my referral to various things done very quickly, within a few days - Diabetes Medicine dept at Churchill Hospital in Oxford, Diabetes education course (which I did last week but such a range of types and lengths of diagnosis there it was basic, but that's probably a good thing), eye screening and medical exemption certificate. At first the Diabetes Specialist that she was speaking too after my initial blood tests had said for me to start Metformin and Insulin (Humulin overnight) - but on seeing my measurements for the first 5 days without any treatment but just adjusting my diet they said to hold off on the insulin and try Metformin for 4 weeks and then they would re-assess. I must admit that I have been thinking "Yippee I don't need to be on insulin" but your comment about the already badly compromised pancreas having to work harder makes so much sense. I'm looking forward to my appointment with the specialists in 2½ weeks time. I'm going to change my profile now to T3 and we'll wait to see what letter I need to put next to it. Thank you

 

[zippyjojo]

Metformin does not make the pancreas work harder, it makes you more sensitive to the insulin you produce

Thanks Lucy - presumably diet is super important if "just" on Metformin?

 

[Mrs Mimoo]

I said type 2 because I'm not really sure. I've become diabetic because of the surgery rather than lifestyle but don't even know what Type3C is (I'm going to google it now!)

welcome. You may not be type 2 (which I am) as you have had the pancreas issues. Hope you are ok. This is a great forum to learn. I don't know about type 3C but with my type you need to reduce carbs - but i would get more advice for your type. hugs.

 

[Lucyr]

Thanks Lucy - presumably diet is super important if "just" on Metformin?

Only taking metformin doesn't mean you're forced to eat a super strict diet. You need to balance a sustainable diet and lifestyle for you, with appropriate medication and exercise. If you aren't getting the bgs you want, you then have the choices of more medication or dietary changes or exercise changes or a combination of those.

 

[Proud to be erratic]

Thank you SO much!! To be fair to my GP surgery and lovely nurse it is still very early days and she has been very keen to point out to me that this hasn't happened because of lifestyle but because of surgery and has said that I'm neither one nor the other (T1 or T2) but there wasn't any mention of T3. She got my referral to various things done very quickly, within a few days - Diabetes Medicine dept at Churchill Hospital in Oxford,

By chance I live in Bucks but get my Endo support from the Churchill, a consultant who is (I believe) the Head of the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). Those last 3 letters very neatly encapsulate the complexity of diabetes.

Diabetes education course (which I did last week but such a range of types and lengths of diagnosis there it was basic, but that's probably a good thing), eye screening and medical exemption certificate. At first the Diabetes Specialist that she was speaking too after my initial blood tests had said for me to start Metformin and Insulin (Humulin overnight) - but on seeing my measurements for the first 5 days without any treatment but just adjusting my diet they said to hold off on the insulin and try Metformin for 4 weeks and then they would re-assess. I must admit that I have been thinking "Yippee I don't need to be on insulin" but your comment about the already badly compromised pancreas having to work harder makes so much sense. I'm looking forward to my appointment with the specialists in 2½ weeks time. I'm going to change my profile now to T3 and we'll wait to see what letter I need to put next to it. Thank you

Pancreatectomy makes you T3c.
Apologies for misrepresenting Metformin; but the underlying principle remains. Even at my age, its worth looking ahead; things change, financial pressures (or a different virus lock-down!) can cause rearrangements of resources and priorities, with little discussion about the impact on individuals. Just politics for the perceived greater good.

My world is made even more complex, simply because I live in Bucks but treated for diabetes in Oxford and each Hospital Trust can't see my medical notes from the other - Trusts don't trust! I have to transfer info from one to the other, using my judgement about who needs to see what; eg blood tests in Bucks are not (even on my request) passed to Oxford.I get them by email and forward them on - big bone of contention with me! Oncology straddles the 2 Trusts: my current Oncologist is based in Oxford and has 2 offices - one in Bucks at Stoke Mandeville Hospital and the other at the Churchill; how wasteful is that?

 

[zippyjojo]

By chance I live in Bucks but get my Endo support from the Churchill, Dr Lumb, who is (I believe) the Head of the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). Those last 3 letters very neatly encapsulate the complexity of diabetes.

Pancreatectomy makes you T3c.
Apologies for misrepresenting Metformin; but the underlying principle remains. Even at my age, its worth looking ahead; things change, financial pressures (or a different virus lock-down!) can cause rearrangements of resources and priorities, with little discussion about the impact on individuals. Just politics for the perceived greater good.

My world is made even more complex, simply because I live in Bucks but treated for diabetes in Oxford and each Hospital Trust can't see my medical notes from the other - Trusts don't trust! I have to transfer info from one to the other, using my judgement about who needs to see what; eg blood tests in Bucks are not (even on my request) passed to Oxford.I get them by email and forward them on - big bone of contention with me! Oncology straddles the 2 Trusts: my current Oncologist is based in Oxford and has 2 offices - one in Bucks at Stoke Mandeville Hospital and the other at the Churchill; how wasteful is that?

What a pain for you - I presume you had your pancreatectomy at the Churchill? That's where I was in November last year - very special place.

 

[zippyjojo]

By chance I live in Bucks but get my Endo support from the Churchill, Dr Lumb, who is (I believe) the Head of the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). Those last 3 letters very neatly encapsulate the complexity of diabetes.

Pancreatectomy makes you T3c.
Apologies for misrepresenting Metformin; but the underlying principle remains. Even at my age, its worth looking ahead; things change, financial pressures (or a different virus lock-down!) can cause rearrangements of resources and priorities, with little discussion about the impact on individuals. Just politics for the perceived greater good.

My world is made even more complex, simply because I live in Bucks but treated for diabetes in Oxford and each Hospital Trust can't see my medical notes from the other - Trusts don't trust! I have to transfer info from one to the other, using my judgement about who needs to see what; eg blood tests in Bucks are not (even on my request) passed to Oxford.I get them by email and forward them on - big bone of contention with me! Oncology straddles the 2 Trusts: my current Oncologist is based in Oxford and has 2 offices - one in Bucks at Stoke Mandeville Hospital and the other at the Churchill; how wasteful is that?

What does the c stand for on T3c?

 

[gll]

I agree with getting your type clarified and down in records. Some T2 drugs in the normal protocols couple be entirely unsuitable for you and nothing with GP care feels urgent.
I think its gliclazide you are thinking about @Proud to be erratic that pushes your pancreas 😉 Don't worry I loose track of T2 drugs and I am T2.
Metformin not only helps you use your own insulin better as @Lucyr said but it also tells your liver to chill out on the glucose dumps it makes.
It's not one of those drugs that's off the table for T1 if they have insulin resistance as well but not going to be effective to control BG in any impactful way, just can support your bodies' insulin use and not make it for you.
Not sure about type 3 but I would assume for it to be in the same bracket as T1 🙂

Honestly, as lovely as the GP team are (well some of them), its like fighting an uphill battle sometimes. I learned more about my diabetes than they could ever tell me from here. Because there is no super immediate danger of running high without ketones present, its a slow process to get anywhere with them. (the system and protocols not the people who actually want to help their patients).

 

[Proud to be erratic]

What does the c stand for on T3c?

I'd like to say c for Churchill - but alas not. Yes did my time in HPB at the Churchill, and had my op there.

T3 covers various forms of panc'y damage. 'c' is simply to distinguish it from a, b, d - h - each of which has its own variant. Such as from alcohol, drugs, accidental injury. I thought I had the list, but can't find it right now. I'll do a deep dive into my chaotic index and files, hope to find it tomorrow.

 

[zippyjojo]

I'd like to say c for Churchill - but alas not. Yes did my time in HPB at the Churchill, and had my op there.

T3 covers various forms of panc'y damage. 'c' is simply to distinguish it from a, b, d - h - each of which has its own variant. Such as from alcohol, drugs, accidental injury. I thought I had the list, but can't find it right now. I'll do a deep dive into my chaotic index and files, hope to find it tomorrow.

I had my surgery there too.

 

[Proud to be erratic]

I agree with getting your type clarified and down in records. Some T2 drugs in the normal protocols couple be entirely unsuitable for you and nothing with GP care feels urgent.
I think its gliclazide you are thinking about @Proud to be erratic that pushes your pancreas 😉 Don't worry I loose track of T2 drugs and I am T2.

Thanks, I knew but as you said just muddled them up.

Metformin not only helps you use your own insulin better as @Lucyr said but it also tells your liver to chill out on the glucose dumps it makes.
It's not one of those drugs that's off the table for T1 if they have insulin resistance as well but not going to be effective to control BG in any impactful way, just can support your bodies' insulin use and not make it for you.
Not sure about type 3 but I would assume for it to be in the same bracket as T1 🙂

I was discharged post-op as T1, not T3. I was aware that I didn't fit the category, but was pre-occupied with my recovery to get bogged down in that, at that time. I've since found very few medical people who are even aware of T3 never mind T3c. But by having T1 on my discharge notes ensures there is no doubt (in extremis) that I need insulin and keeps doors open for necessary insulin dependent treatments.

Honestly, as lovely as the GP team are (well some of them), its like fighting an uphill battle sometimes. I learned more about my diabetes than they could ever tell me from here. Because there is no super immediate danger of running high without ketones present, its a slow process to get anywhere with them. (the system and protocols not the people who actually want to help their patients).

I hit all of this just as Covid hit the NHS. So I don't even have a particularly rosy view of my GP Surgery; just a sense of obstructiveness and entrance doors that are still locked. I can't imagine that a GP is not aware that stress is bad for DM, so having to wrestle for more than 4 test strips per day sits extremely badly with me. I wasn't aware of the NICE Guidance Note NG17 at that time. Like yourself this forum has been a revelation about DM.

 

[The robin]

Hi there - my name is Jo and I've recently been diagnosed with Diabetes following a distal pancreatectomy (& splenectomy & cholecystectomy) last November. I had a large mucinous cyst on my pancreas which fortunately was benign. We're trying to manage it with diet & metformin at the moment. I'm building up to 4 a day and today started on 2 with my morning meal - definitely feeling a little bit nauseous and a bit windy this evening (sorry if too much information!). I'm keen to get in touch with others who's had this surgery so that I can pick your brains on a few things ...

Hi Jo, my name is Judy ( not been on the forum for a while so only just picked this up).
I had a distal pancreatectomy/spleen removed in 2013,cysts on tail end which we’re starting to turn. I had all the nauseous feelings/wind for quite some time.Take penicillin daily. Was okay for a few years but unfortunately began getting bad bouts of pancreatitis ( wouldn’t wish that on anyone). Several hospital admissions. Calmed down for a while but then started again. After an MRI scan it showed that cysts had developed in the body of my pancreas. Had total pancreatectomy September 2021 and now type 3c diabetic. I have a very large wound that is still numb and a knot has developed ( internal stitches have not desolved but collected in a ball) .This is extremely painful and a hernia is underneath it,so now on waiting list to have this sorted. Oh joy.
Any questions please don’t hesitate.
Judy

 

[zippyjojo]

Hi Judy - thanks for responding. I'm sorry to hear about the pancreatitis - I didn't believe it when people said it was worse than labour pains, but oh how right they were! What a pain that the cysts returned - I've been told mine was a one-off but sort of not sure whether I believe that. It was a large mucinous cyst but it hadn't turned when it was caught, thankfully - although for a few weeks they thought it had. I've managed to arrange to have an ultrasound scan soon so feel reassured that I will at least know whether everything is where it should be. I do think that my "feeling" is probably my abdominal muscles and have been given some really good core exercises and stretches by a physio which I think may be helping although I've only done it a few times. Glad you're managing to get the hernia sorted. Hope you don't have to wait to long. Thanks again, Jo