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Type 3c - how many are we?

Discussion in 'Type 3c (Pancreatic) Diabetes' started by mrspuddleduck, Nov 26, 2015.

  1. Kiggy

    Kiggy · Active Member

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    I have type 3c diabetes after having Whipple Surgery. I was diagnosed by Dr as type 2, but on reading on line I seemed to fit the 3C category. I too printed off what I had found but my GP had never heard of it. When I contacted the hospital who had performed the surgery this was confirmed. I take Creon but I don't seem to have any Ill effects if I forget to take it. I am presently controlling diabetes with diet but told I would probably need insulin too in time.
     
  2. lollyann1

    lollyann1 Type 1 · Well-Known Member

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    I too am type 3C but it seems to be the case that the specialist Hospital units that deal with Pancreatic surgery are the ones who are 'in the know' about 3C. One of the GP's I have seen had never heard of it either.
     
  3. Honeyend

    Honeyend · Well-Known Member

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    I went to my outpatients appointment yesterday, to get the results of my CT and I hoped discuss my future management. I had read the NICE guidelines,
    https://www.nice.org.uk/guidance/ng104/chapter/recommendations#pseudocysts-2
    so I have some idea what should be done. It was quite obvious that as far as they were concerned, they have treated the pancreatitis, so job done, once they take my gall bladder out and the doctor I spoke to had no idea about the futher problems I could have. This is a big teaching hospital.
    Its says in the guidelines how 3c should be treated so if the GP says your Type 2, print it off.
    https://www.nice.org.uk/guidance/ng104/chapter/recommendations#type-3c-diabetes-2

    What has shocked me the most, is I have been given no advice on diet what so ever, and that is asking a dietician what I should eat, several times,' just eat what I want'. No leaflets, no support groups, the hpb specialist nurses never saw me on the ward, apparently they concentrate on cancer patients, so people with pancreatitis are not seen unless its caused by tumours, and I was in five weeks. The doctor said to me yesterday, 'you have to put your self in our hands', to which I laughed and said not likely, and that I want to know as much as possible. Scary because it was a youngish doctor and usually it the older ones that have that sort of attitude, that's surgeons for you.
    So he is going to refer me to the diabetic specialist nurse for my area and hopefully referal to an endocrinologist. I think the thing I am most worried about is my bloods not being monitered, and the reluctance of GP's to start insulin if its needed
     
    • Hug Hug x 1
  4. JohnH2019

    JohnH2019 Prediabetes · Well-Known Member

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    It is scary how little focus there is on the nutrition, nutrition deficiencies, and all the impacts from exocrine pancreatic insufficiency side of the pancreas and malabsorption (lacking enzymes, bile, messed up microbiome etc.). Sadly, I had to learn from reading a few books on what to do as opposed to all my gastro docs. Here is the list I put together in the hope there is something there for you:

    https://www.diabetes.co.uk/forum/posts/2111414/
     
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  5. Grant1969

    Grant1969 Type 3c · Well-Known Member

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    Went for my annual review last week and the Dr told me I was to double my dosage of Gliclazide and start testing 4 times a day instead of once and I've to start on insulin so apparently an appointment is in the pipeline with a diabetic nurse. He seemed a bit perturbed by the lack of treatment and communication between myself and the diabetic nurses but as I informed him each time I did phone previously I was left wondering why I phoned about trivial matters and was always left feeling like I'm making mountains out of molehills cos it's type 2 when in reality it's type 3c but what would I know I'm merely the patient. So now I'm awaiting a whole new world of confusion as I get introduced to insulin and how to use it.
    Still in a world of pain and nausea as I've lost another stent somewhere which has now become the norm, so now I wait for the duct to close up, get sicker and vomit myself back into hospital where they stick another stent in until it either blocks up or falls out, this is my treatment plan for my chronic pancreatitis.
     
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  6. Emilia82

    Emilia82 Type 2 · Newbie

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    Hello ... I have Diabetes due to pancreatic failure ans had major surgery and I’m constantly put in the type 2 category .. I’m insulin dependant and doctors have struggled to treat me for years very frustrating as I’m not type 2.. some doctors have even looked at books whilst seeing me .. I now have the libre sensor which is helping greatly with my control ... anyone else have this ? And how are they getting on?
     
  7. VivD

    VivD Type 2 · Active Member

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    Well not found to be diabetic until I had acute pancreatitis but a history of overweight and sleeping after meals or even snacks for as long as I can remember - given insulin after illness and been on it 17 years. Think I probably fit.
    Need to get my insulin further under control but it is fairly stable. Hi fat low carb plus 15 units of slow release at night and have some fast release if I need it.
     
  8. tigrib

    tigrib · Member

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    Hi, I'm a type 3c, too.
     
  9. Grant1969

    Grant1969 Type 3c · Well-Known Member

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    Hi, yeah I've decided that I'm type 3c as well, my diabetes was diagnosed after 12years or so of chronic pancreatitis, but I keep getting labelled type 2 and now I've just started insulin (once a day, a.m.) my numbers are finally falling, still confused but hey ho I'm not the only one, it would appear.
    Keep on keeping on.
     
  10. davix

    davix Type 1 · Newbie

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    I have been a type 3 insulin dependent diabetic for nearly six years since the removal of my Pancreas, Spleen, a cyst the size of an orange and small growths in the area of my Pancreas. My Surgeon Mr. Thomas Armstrong of Southampton General Hospital did a first class job proven by the fact that at 84 years of age I am still active and only suffer minor difficulties with controlling my blood sugars and digestion controlled by Creon capsules which can cause tummy upsets and discomfort.
    Like so many writing to the forum ( which I have read for a few years but only written to once before asking for advice ) I have not had the best of treatment from my Gp's and at times feel I am fighting a lonely battle.
     
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  11. Craigh82

    Craigh82 Type 1 · Member

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    Hi I'm type 3c. I had pancreatitis 3 years ago. What a life change it has been but I'm coping well and accepting my condition.
     
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  12. milesrf

    milesrf Type 2 · Well-Known Member

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    I used to have a neighbor who was taking Creon, a medicine to replace the pancreatic output into the small intestine.

    Google found this for me:

    https://www.creon.com/
     
  13. John macf

    John macf · Newbie

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    Hi. I was told im type 3 in 2013, but ive had conflicting information.
    I spent a year in hospital with a 33cm pancreatic cyst eventually the HAD to operate and my pancreas was messed up as a result. Since then ive een on insulin.
    Some say im type 2....some say im type 3.
    As the people who say im type 3 are the people who also did the surgery im inclined to believe them. Does that sound correct?
     
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  14. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    I'd have to agree with the medical team. Based on what you have said.
     
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  15. Civilised Devil

    Civilised Devil · Member

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    Newly diagnosed diabetic "T2" after 8 months of chronic Pancreatitis, told by the Docter the pancreatitis was the cause of the diabetes. That was 7 days ago haven't got my head round it yet. So I'm type 3, this gives a whole new range of questions the primary one being what to eat? You see diabetes dictates you lower your carb intake and make up for it by increasing fat intake for energy but!!!!!, Pancreatitis dictates to not agrivate the pancreas, avoid fats especially red meat even with Creon,a inflamed pancreas is something to avoid at all costs. So a high protein, low fat, low carb diet is needed plus I was ill with pancreatitis for so long I lost 5 stone and am skin and bone with little muscle, I desperately need to put on weight. Anybody any recipes? Maybe start a thread?
     
  16. Civilised Devil

    Civilised Devil · Member

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    Similar story to yourself as far as I can tell type 3. If the diabetes was caused by the Pancreatitis then it's type 3 there are tests to confirm this and the slight differences to type 2 are shown in the results.
     
  17. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    Starting a new thread would get you more replies. I didn't have pancreatitis like you but my situation is a little different. I can most certainly eat all those things that are to be avoided and I do take creon. However, there is a limit to fat that I can eat, but it's not a low amount by any means. It seems to be a condition that varies, so experimenting is what I did. I do keto myself. And I eased into a higher fat content very gradually. There are of course other people with similar conditions who can offer their experiences.

    Forgot to mention, in regards to starting a new thread. Maybe post it in the discussions section or ask a question, you will get a lot more exposure there.
     
    #157 Tophat1900, May 14, 2020 at 3:31 AM
    Last edited: May 14, 2020
  18. Kassiedent

    Kassiedent Type 1 · Member

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    Hi, I’ve been classed as T1 since acute severe necrotising pancreatitis in 2003. Gall bladder & most of pancreas removed. ICU, HDU & over 4 months in hospital, I lived to tell the tale! Was very well behaved whilst having my family but not good at taking care of myself. Started on Creon but it caused me more problems than it solved (long term that may not be true!), insulin dependent. During a visit to an eye clinic about a year ago the consultant informed me I’m type 3c. I was completely unaware of the difference. It’s so good to read of other people who’ve had similar experiences. Add me to the list of members please!
     
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  19. Mark T D

    Mark T D · Newbie

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    Just been diagnosed with Type 3. Was taken into hospital with very high blood sugars (46) and now need to inject with insulin 4 times a day.
     
  20. skoz

    skoz · Newbie

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