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Type 3c - how many are we?

  • Thread starter Thread starter mrspuddleduck
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We learn everyday, only on here today that I must be T3c? Last year I had a BIG tumor on my spleen so I was peeled open to have it removed, when I came to was told they had, had to take out most of my pancreas as well. It was not until end of feb this year diagnosed diabetic, Just getting used to things.
 
@peterjones6000 You are type 3c when both alpha and beta cells are destroyed, partial pncreas can still function. You will need a blood test to define type. You can still be type 1 or 2. Do you need enzyme replacement therapy
 
Shar67 said:
@peterjones6000 You are type 3c when both alpha and beta cells are destroyed, partial pncreas can still function. You will need a blood test to define type. You can still be type 1 or 2. Do you need enzyme replacement therapy
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Thanks for you reply, after my spleen was removed they did leave my a wee bit of pancreas they gave me Creon and hoped that I would be ok, that op was in March. September Had pneumonia hospital again the usual xrasy scans, after 2 weeks went home then they called me back and said I had lung cancer. October had right lung taken away after thay about christmas the diabetis seems to have kicked in not that I realised went to see doc in feb again hospital. It seems the shock of the cancer op was to much. I have no idea about the enzyme therapy due to see specialist next month and will see then.
Shar67 said:
@peterjones6000 You are type 3c when both alpha and beta cells are destroyed, partial pncreas can still function. You will need a blood test to define type. You can still be type 1 or 2. Do you need enzyme replacement therapy
Click to expand...
 
Ok. Thanks to this forum I now know what to call my diabetes. I had type 2 for many years and treatment was attempted using Victosa. I was unfortunate in that it gave me pancreatitis and I have been what I have called 'type 1' since. But now I know better!! Hello fellow Type 3Cers!
 
Hi and welsome @mattuk
You might still be type 1 to be type 3c you have to have no alpha and beta cells.
Having pancreatitis doesnt rule out type 1 or 2
I will tag @daisy1 to give you some info about site
 
@mattuk As mentioned above, here in my signature are the links to the Basic Information for new members and the Low Carb Program. I hope these will be useful to you and other members too.
 

Crikey Peter. What a terrible run.

Good luck and best wishes to you.

BTW - Creon is enzyme replacement therapy. So you are 3c.

Hello and welcome Mattuk.

So we have yet to find one Doctor / diabetes specialist in the UK who has any general advice / procedure on how best to deal with 3c and the brittle diabetes / malabsorption complications that often come attached?
No guidelines?
I don't think that is very good.

Shar - how rare do you think 3c is?
Every person that has had the panc out + some partials + panc disease etc.
Depends what you call rare. Also is rarity a reason for providing no help / guidlines?
I bet a snakebite is more rare in the UK, but i would guess you can find much better medical help or guidance somewhere in the UK. What if you took a child into hospital with a rare disease. They say "sorry, we don't do that one it's rare"?

Rant over, and probs in the wrong section.

Regards fellow 3c's, Sean
 
Well hi folks...I'm shocked to find this group...never seen panceatic diabetes mentioned before....i was t2 on tablets...but 3 years ago suffered pancreatitis....and was soon after put on insulin.....even the consultant and dn arent really sure what to label me as....lol....will be reading all your posts soon.
 
mrspuddleduck said:
As type 3c is a rare form of diabetes, and as we now have our own sub-forum, I'm curious to know how many of us are accessing the forum! So are you a member of the 3c club?? Sue xx
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Just diagnosed after nearly two years of pain after having gallbladder removed.
I'm actually a female.
 
hi,i had never listen about type 3c.and curious to know more about same,because i m little bit confused of myself .
 
sean1964 said:

Shar - how rare do you think 3c is?
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Approx 10,000 per year people will have panc damage, Im not sure how many will die out of that number but lets say 1000 leaving 9000, out of that number only 5% will have further on going problems, so roughly 450 people, out of that it's 50/50 if you develop diabetes (not including those who have panc removed)
250 people, some may have been type one or 2 before hand. But lets say 250 per year out of 60 million people will develop type 3c so pretty rare. unfortunately children and adults with "rare" conditions dont find the doctor or research available even if you do there is not a great deal of medical information to help
 
Not sure what I Am!!! Thought I was type 2 but found out in July I had pancreatic Endocrine Insufficiency. Never heard of it before. Now taking creon with all food. Sigh.... Any help gratefully received!
 
Jaded Judi said:
Not sure what I Am!!! Thought I was type 2 but found out in July I had pancreatic Endocrine Insufficiency. Never heard of it before. Now taking creon with all food. Sigh.... Any help gratefully received!
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Hello. I am new to this forum. Have been taking Creon for pancreatic insufficiency for close to 14 years. If you have specific questions, I will be happy to share any applicable experience.
 
TYPE 3c this is the first time ever I've heard this mentioned.
In 2013 I had probably the worst form of pancreatitis... NECROTISING. Suffice to say nearly died as the secondary complication was it burnt a hole in bowel and everything leaked out. I had a loop ileostomy as,a result and,spent many many months recovering.

They told me I would be insulin dependant forever and have to take Creon forever as well as Omprazole. I was told I was a Type 1 Diabetic so this is brand new news to me thanks for sharing.

I'll have to get reasons why all the medical in charge of me which included a Pancreatic, Colorectal and Endocrinologist specialist never diagnosed me with form of Diabetes.

Just wondering if my control is all over the place as I still have 10% of my pancreas, dead tissue mainly, left. Even taking high doses the levels don't flatten or is that insulin resistance?
 
Romeo

You mean you get high BG? Do you carb count - basal / bolus?

If u had insulin resistance then it wouldn't you be able to just increase your doses?

Sean
 
Hi Sean

I'm not too sure what's going on with me. I'm not using this Type 3c as an excuse but it could explain why the BS levels bizarrely come down even without injecting.

I need to book an appointment to get re-classified mate to see if indeed I fall into this new Type 3c group as it would explain massive swings in readings and excessive weight gain.

I'm probably one of the worst diabetics on this forum and probably need complete retraining with help of the Diabetic Team.

Cheers

Romeo
 
Hello, I've noticed a couple of people with a history of necrotizing pancreatitis, and that's me, too. I had acute gallstone pancreatitis in Jan, my gallbladder out in Feb, and then necrotizing pancreatitis in March. I'm still in the final recovery from the nec panc, but I am monitoring my blood sugar frequently. Some of my panc was destroyed by the nec panc (the body and tail), but it's unclear how well the remaining will function. So far, my digestive function seems fine. My primary wants to put me on insulin, but I convinced her to give the panc another few weeks to see if it recovers and to see if I can control things with diet and exercise. Now that I know that type 3c exists, I think I should see an expert - only, I can't seem to find one. Does anyone know where the experts are for type 3c? Or should we call it pancreatogenic diabetes? I'm in the US, and I'd be willing to go anywhere in the US for at least a consult.

Thanks, it's nice to find a forum like this!
 
Hiya Getting used to taking creon. Blood sugar is creeping up though. On metaformin 500g, so wondering if I need a higher dose. Not been to doctor as HBA1C was 53 in March so not too bad. Just worry on bad bowel days if I am deteriorating!!! Some days fine, then bad for no reason I can tell. Feel down today!!
 
Hi Jaded Judi

If you don't do so, I'd recommend keeping a food diary to see if certain foods trigger an adverse reaction and hence inflammation and higher BG levels. I'm not thinking of high carb foods, but innocuous foods (for me it's anything spicy, but also things like cabbage or kale and odd items such as rocket). Sometimes I get a reaction within minutes, other times the next day: hence a diary helps to identify the cause.
 
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