# type3c diagnosis and treatment discussions



## drguiom (May 29, 2021)

I can't find a specific group for type 3

anyone else here with this type? Looking to share experience with treatment and management


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## Ljc (May 29, 2021)

Hi @drguiom .  Welcome to the forum. We do have some who have 3c , hopefully they will be along soon , at the mo I am wracking my brain trying to think who to alert


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## drguiom (May 29, 2021)

Ljc said:


> Hi @drguiom .  Welcome to the forum. We do have some who have 3c , hopefully they will be along soon , at the mo I am wracking my brain trying to think who to alert


Thanks, I tried a search but it doesn't work as 3 as a single character is too short ;-)

It's tricky as there is little Info about


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## Ljc (May 29, 2021)

My two brain cells have fired up lol 
@eggyg may be able to help


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## Pumper_Sue (May 29, 2021)

Hello and welcome to the forum
There are quite a few 3c'ers on the forum, but no separate groups as we all muck in together.
How did you get your diagnoses?

I'm off to see the pancreatic surgeons on Tuesday due to very high amylase levels already taking Creon and feeling a lot better thank goodness.


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## everydayupsanddowns (May 30, 2021)

Welcome to the forum @drguiom

Yes @eggyg is often very helpful to Type 3c newcomers.

We also have @Hepato-pancreato @martindt1606 @SianyBee @SBorny and @Proud to be erratic among many others


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## eggyg (May 30, 2021)

Hi @drguiom. I’m type 3c, if you’re looking for type 3 it will bring up American sites about Alzheimer patients with diabetes. Totally different to type 3c, which I’m assuming you mean. That is, diabetes caused by surgery/ damage or disease of the pancreas. I’m the surgery type, fire away with questions. I’ll try and help,  but as indicated type 3c isn’t straight forward and treatment may differ amongst us. Can you tell us a little bit about how you were diagnosed with type 3c diabetes, what treatment you’re currently on. Insulin, Metformin or other? Are you on Creon to replace digestive enzymes? Elaine.


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## drguiom (Jun 2, 2021)

eggyg said:


> Hi @drguiom. I’m type 3c, if you’re looking for type 3 it will bring up American sites about Alzheimer patients with diabetes. Totally different to type 3c, which I’m assuming you mean. That is, diabetes caused by surgery/ damage or disease of the pancreas. I’m the surgery type, fire away with questions. I’ll try and help,  but as indicated type 3c isn’t straight forward and treatment may differ amongst us. Can you tell us a little bit about how you were diagnosed with type 3c diabetes, what treatment you’re currently on. Insulin, Metformin or other? Are you on Creon to replace digestive enzymes? Elaine.


yes am type 3c, I have chronic pancreatitis, take creon with meals but generally pain free. Was diagnosed after obvious symptoms, blurred vision, frequent urination, extreme tiredness. Initially, the GP told me I was type 2 (I have no weight issue) but I quickly self-diagnosed Type3c which was then confirmed at the hospital. I was given Gliclazide initially which pushed my pancreas further and gave me pain until I looked it up and told the GPs they were wrong. Its quite worrying how little their diabetes lead knows.

The diabetes centre eventually got me on Tresiba (8 units in morning initially, I have switched to 5.30pm now) but this also is a problem, I wake up at 5am wish, levels are all over the place. I sometimes wake up with a reading above 10 and have to walk the glucose off. There is little pattern as cleary some days my pancreas decide to work fine.

I have another appointment in an hour to get some fast acting insulin also.

would be interested to know what everybody's experience has been re treatment and what worked/didint?


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## eggyg (Jun 2, 2021)

drguiom said:


> yes am type 3c, I have chronic pancreatitis, take creon with meals but generally pain free. Was diagnosed after obvious symptoms, blurred vision, frequent urination, extreme tiredness. Initially, the GP told me I was type 2 (I have no weight issue) but I quickly self-diagnosed Type3c which was then confirmed at the hospital. I was given Gliclazide initially which pushed my pancreas further and gave me pain until I looked it up and told the GPs they were wrong. Its quite worrying how little their diabetes lead knows.
> 
> The diabetes centre eventually got me on Tresiba (8 units in morning initially, I have switched to 5.30pm now) but this also is a problem, I wake up at 5am wish, levels are all over the place. I sometimes wake up with a reading above 10 and have to walk the glucose off. There is little pattern as cleary some days my pancreas decide to work fine.
> 
> ...


I was initially told I was type 2 which looking back seems daft when I’d had 2/3 of my pancreas removed. Started on Metformin and told to lose weight, I was probably 10lbs or so overweight. That didn’t work so after 4 years and from doing my own research I asked to go on insulin. Put on a mixed insulin twice a day, still wasn’t right so I asked to be put on a basal/bolus regime. That did the trick! This has taken years unfortunately when it really shouldn’t have. Not many HCPs,  including GPs have a clue about 3c. I badgered them for a long time to go on a course to learn how to control my diabetes but for a long time I was told I wasn’t allowed as I wasn’t a “real type 1 diabetic”! I insisted, and eventually I saw a wonderful DSN at the hospital clinic. She knew all about type 3c, although she only had one other on her “ books”. She put me on DAFNE course (dose adjustment  for normal eating). It was intense, five full days, but it changed my life. Much more confident in how I deal with my diabetes and more confident in telling the HCPs what I need. The NICE guidelines do suggest type 3c to be treat the same as type 1 if nothing else is working. My suggestion is, do your research, ask questions on here, and go fully armed with what you want and require to your doc or nurse. It can be a hard slog but after 13 years I’m finally getting there. Good luck and any more questions fire away. Elaine.


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## martindt1606 (Jun 2, 2021)

Hi, I posted a question a few weeks ago asking how many 3c's were about as I was wondering if I should start confusing people by saying I was Type 3c rather than insulin dependent.   I was aware of the Alzheimer definition and responses to my question seemed to suggest a growing reclassification from Type 2 to Type 3c.  Given that if you fill out a form or a survey its unlikely that you will be given the option to enter 3c, I'm going to continue to self classify in discussions as insulin dependent and when filling out forms as Type 1. Since my total pancreatectomy both of the clinics I've been allocated to have treated me as Type 1 from the initial dose setting, through DAFNE,  insulin pump, and now CGM.  Its a 24*7 commitment do I really have time to worry about classification?


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## drguiom (Jun 4, 2021)

martindt1606 said:


> Hi, I posted a question a few weeks ago asking how many 3c's were about as I was wondering if I should start confusing people by saying I was Type 3c rather than insulin dependent.   I was aware of the Alzheimer definition and responses to my question seemed to suggest a growing reclassification from Type 2 to Type 3c.  Given that if you fill out a form or a survey its unlikely that you will be given the option to enter 3c, I'm going to continue to self classify in discussions as insulin dependent and when filling out forms as Type 1. Since my total pancreatectomy both of the clinics I've been allocated to have treated me as Type 1 from the initial dose setting, through DAFNE,  insulin pump, and now CGM.  Its a 24*7 commitment do I really have time to worry about classification?


how would Type 2 be re-classified as 3c? I thought type 2 were insulin resistant? Type 3c would if anything be closer to type 1 but with the added complication that the pancreas occasionally releases insulin and this complicates treatment?


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## drguiom (Jun 4, 2021)

eggyg said:


> I was initially told I was type 2 which looking back seems daft when I’d had 2/3 of my pancreas removed. Started on Metformin and told to lose weight, I was probably 10lbs or so overweight. That didn’t work so after 4 years and from doing my own research I asked to go on insulin. Put on a mixed insulin twice a day, still wasn’t right so I asked to be put on a basal/bolus regime. That did the trick! This has taken years unfortunately when it really shouldn’t have. Not many HCPs,  including GPs have a clue about 3c. I badgered them for a long time to go on a course to learn how to control my diabetes but for a long time I was told I wasn’t allowed as I wasn’t a “real type 1 diabetic”! I insisted, and eventually I saw a wonderful DSN at the hospital clinic. She knew all about type 3c, although she only had one other on her “ books”. She put me on DAFNE course (dose adjustment  for normal eating). It was intense, five full days, but it changed my life. Much more confident in how I deal with my diabetes and more confident in telling the HCPs what I need. The NICE guidelines do suggest type 3c to be treat the same as type 1 if nothing else is working. My suggestion is, do your research, ask questions on here, and go fully armed with what you want and require to your doc or nurse. It can be a hard slog but after 13 years I’m finally getting there. Good luck and any more questions fire away. Elaine.



Yes thats the same here re the diagnosis, I think the assumption of non specialist is still that if you generate some insulin you must be type 2 and insulin resistant. Your comment on basal/bolus regime confirmed what I thought was logical in that background insulin + fast acting based on the carb amount eaten would make sense. I discussed with the diabetes centre at the hospital yesterday and they agreed it should have been done this way from day one. So I started on Humalog yesterday evening and will see how it progresses. Also did more blood tests and urine tests while I was at the hospital and will see how the last few month on Tresiba affected my HbA1c results.

Many thanks for your help


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## trophywench (Jun 4, 2021)

Because there is no set pattern which those with 3c always follow and it really is a case of every one is different - it's tricky - esp as some 3c patients' diabetes can respond to T2 drugs for sometimes a few years - but the NHS recording categories haven't caught up with there even being an official category of 3c yet - it is fairly logical they slap you into the category that the drugs you need to treat it normally apply to - which is OK as long as they don't believe it means your drug treatment will never change and you'll never need solely insulin treatment and carb counting etc to stay alive.  And that last bit is 100% key!  Some GPs just don't accept that they don't know everything about Diabetes in the first place whereas the more enlightened ones already know they don't know everything - and refer you to experts PDQ.


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## drguiom (Jun 5, 2021)

trophywench said:


> Because there is no set pattern which those with 3c always follow and it really is a case of every one is different - it's tricky - esp as some 3c patients' diabetes can respond to T2 drugs for sometimes a few years - but the NHS recording categories haven't caught up with there even being an official category of 3c yet - it is fairly logical they slap you into the category that the drugs you need to treat it normally apply to - which is OK as long as they don't believe it means your drug treatment will never change and you'll never need solely insulin treatment and carb counting etc to stay alive.  And that last bit is 100% key!  Some GPs just don't accept that they don't know everything about Diabetes in the first place whereas the more enlightened ones already know they don't know everything - and refer you to experts PDQ.


you last point hits the nail on the head!


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## martindt1606 (Jun 10, 2021)

drguiom said:


> how would Type 2 be re-classified as 3c? I thought type 2 were insulin resistant? Type 3c would if anything be closer to type 1 but with the added complication that the pancreas occasionally releases insulin and this complicates treatment?


In my case i don't have a pancreas to release anything,  This means i need drugs to help digest food - I'm similar to a Type 1 with the added complication I'm not always sure how the carbs are going to be digested.


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## drguiom (Jun 11, 2021)

martindt1606 said:


> In my case i don't have a pancreas to release anything,  This means i need drugs to help digest food - I'm similar to a Type 1 with the added complication I'm not always sure how the carbs are going to be digested.


yes that must be really tough. Am on Creon myself but mostly pain free and digest ok-ish without.


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## Phil45 (Jun 15, 2021)

drguiom said:


> I can't find a specific group for type 3
> 
> anyone else here with this type? Looking to share experience with treatment and management


I have recently been diagnosed with type 3c diabetes


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## drguiom (Jun 16, 2021)

Phil45 said:


> I have recently been diagnosed with type 3c diabetes


how are you finding treatment and management? what have you been prescribed?


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## Hepato-pancreato (Jun 18, 2021)

Fellow type 3c, which i've been for 8 years now. I find being a type3c, gets the conversations going at hospital appointments. ( not at the moment that is!). Following major pancreatic surgery i have approx 15% of my pancreas remaining ( according to my surgeon). On basal-bolus regime.(lantus & humalog). Also the customary creon for digestion. Root cause of mine was/is! chronic pancreatitis. Diabetes the umbrella description as there are a few different types eg... type 1, 1.5, 2, 3c etc........ Actually it is so personal to yourself you will find there is a lot of trial and error involved . Your on a learning curve forever. You will discover that when you read the posts on the forum. Basically we are all diabetics who can inadvertantly help one another so don't need pigeon holes for each different type. Hello and welcome to the forum.


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## drguiom (Jul 11, 2021)

so Tresiba in the morning and Humalog with evening meals (based on carb amount) is doing the trick at the moment. I am trialling a Libre to get some insight into how my blood sugars behave in the night when I can't test. 14 days trial and maybe some more adjustments. I still find I am awake really too early and need to understand why.


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## everydayupsanddowns (Jul 11, 2021)

Good to hear @drguiom 

Hope you find the Libre informative.


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## SB2015 (Jul 11, 2021)

Glad to hear that you have now got the Libre @drguiom , and hope that that helps you to make decisions about any changes to your doses that might help you.

Let us know how you get on.


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## s.e london (Aug 20, 2022)

eggyg said:


> Hi @drguiom. I’m type 3c, if you’re looking for type 3 it will bring up American sites about Alzheimer patients with diabetes. Totally different to type 3c, which I’m assuming you mean. That is, diabetes caused by surgery/ damage or disease of the pancreas. I’m the surgery type, fire away with questions. I’ll try and help,  but as indicated type 3c isn’t straight forward and treatment may differ amongst us. Can you tell us a little bit about how you were diagnosed with type 3c diabetes, what treatment you’re currently on. Insulin, Metformin or other? Are you on Creon to replace digestive enzymes? Elaine.


hello[s.e london] 18 months  ago approx i had pancreatitus spent 3 days in hospital took me of metformin and put me on nova mix 30  70 .  10 units in morning 12 units in the evening later i was put on creon  5 capsules a day . my question is i have developed pains in my calves could that be the contents of the insulin
aspart.


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## s.e london (Aug 20, 2022)

18 months ago approx i had pancreatitus spent a few days in hospital,took me off metformin slow release and on novamix 30.70 10 units in morning 12 unitsin the evening together with 5 creon over the day .my question is, i have developed pains in my calves could that be the contents of the insulin aspart


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## Faith_exx (Aug 20, 2022)

drguiom said:


> I can't find a specific group for type 3
> 
> anyone else here with this type? Looking to share experience with treatment and management


I’ve only just found out I have type 3c from this forum. I was under the impression I was type 1 for the last 14 years. I didn’t even know it existed. I have 5% of my pancreas left after it was removed because it was producing too much insulin for me to survive. I actually ended up dying 5 times.
I use an insulin pump to manage mine and take creon with every meal. I’ve recently discovered the libre 2 and finished my free trial. I’ve already bought another and waiting for it to arrive, I’m hoping to get it on the nhs. How did you become type 3? What do you do to manage it?


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## Faith_exx (Aug 20, 2022)

s.e london said:


> 18 months ago approx i had pancreatitus spent a few days in hospital,took me off metformin slow release and on novamix 30.70 10 units in morning 12 unitsin the evening together with 5 creon over the day .my question is, i have developed pains in my calves could that be the contents of the insulin aspart


I keep getting pains where my set changes go, could this be the same thing? Mine is like a shooting, sharp, burning pain but it comes and goes.


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## s.e london (Aug 20, 2022)

Faith_exx said:


> I keep getting pains where my set changes go, could this be the same thing? Mine is like a shooting, sharp, burning pain but it comes and goes.


the pains in my calves was not there when taking slow release metformin . the pain in my legs both legs up to and including knee caps only started after taking insulin coincidence i dont know. by the way i was told that slow release metformin has a higher than normal concentration of ndma   and has been removed from metformin the slow release part i believe.


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## Faith_exx (Aug 20, 2022)

s.e london said:


> the pains in my calves was not there when taking slow release metformin . the pain in my legs both legs up to and including knee caps only started after taking insulin coincidence i dont know. by the way i was told that slow release metformin has a higher than normal concentration of ndma   and has been removed from metformin the slow release part i believe.


Oh it might not be the same then. 
Sorry to hear about the pains your going through I couldn’t imagine that. It’ll be something for me to mention to the hospital when I get in. Is there anything they were able to suggest or do about the pains your getting?


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## s.e london (Aug 20, 2022)

Faith_exx said:


> Oh it might not be the same then.
> Sorry to hear about the pains your going through I couldn’t imagine that. It’ll be something for me to mention to the hospital when I get in. Is there anything they were able to suggest or do about the pains your getting?


unable to get to see the doctor face to face explained as best one can but all in vain. i said that a phone call to explain is in appropriate . why ?  .was the most intelligent question i have heard. the pain is there and dont hurt ,looks inflamed here not there . well i cant see where your pointing to on the phone was the explanation realy was my reply . you see there is no permanant doctor only locums and they only seem available on fridays but never the same one twice. so my joining the diabetes forum may well find some intelligent answers not idiotic guesses all the best with your hospital engagement ,and i am sure all will be well in safe hands.


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## Faith_exx (Aug 20, 2022)

s.e london said:


> unable to get to see the doctor face to face explained as best one can but all in vain. i said that a phone call to explain is in appropriate . why ?  .was the most intelligent question i have heard. the pain is there and dont hurt ,looks inflamed here not there . well i cant see where your pointing to on the phone was the explanation realy was my reply . you see there is no permanant doctor only locums and they only seem available on fridays but never the same one twice. so my joining the diabetes forum may well find some intelligent answers not idiotic guesses all the best with your hospital engagement ,and i am sure all will be well in safe hands.


Yeh I’ve not seen a diabetic specialist in 2 years so can relate to them being crap. My doctors didn’t acknowledge I was diabetic till I asked to be put in specialist care only then did they refer me to a hospital. I’ve found a lot out from the forum so I don’t blame you, definitely more than what doctors know. I hope you’re able to get it resolved and get a face to face meeting. I don’t feel like they understand how frustrating and serious it can be


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