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type3c diagnosis and treatment discussions

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
drguiom

drguiom

New Member
Relationship to Diabetes
Type 3c
I can't find a specific group for type 3

anyone else here with this type? Looking to share experience with treatment and management
 
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
 
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
Click to expand...
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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My two brain cells have fired up lol
@eggyg may be able to help
 
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.
 
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.
 
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.
Click to expand...
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?
 
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 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?
Click to expand...
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.
 
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?
 
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?
Click to expand...
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?
 
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.
Click to expand...

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
 
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.
 
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.
Click to expand...
you last point hits the nail on the head!
 
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?
Click to expand...
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.
 
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.
Click to expand...
yes that must be really tough. Am on Creon myself but mostly pain free and digest ok-ish without.
 
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.
 
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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