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Any Type 3C people out there?

Discussion in 'Type 3c (Pancreatic) Diabetes' started by Jdi, Mar 13, 2021.

  1. Jdi

    Jdi · Newbie

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    Hi everyone, i am Type 3c due to acute pancreatitis and then cysts on my pancreas which wiped out my pancreas in 2019. Now i am insulin dependent and also take creon with all meals. Just wondered if there is anyone else on this forum with similar condition.
     
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  2. Civilised Devil

    Civilised Devil · Member

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    Hi Jdi, first no your not alone there are stacks of people same as you and me. Acute pancreatitis two years ago left me 5 stone lighter after 3 months in hospital and 7 surgery's to deal with a cyst and necrotic tissue on the pancreas, type three diabetes on and off since then and yes Creon with all meals.
    Read this forum and you will find numerous similar stories and that's just the ones who know about this site, I came across it by accident!!!! And have met several people at the diabetes clinic in the same boat as well.
    It has been my experience that type 3 is not well known or accepted with most calling it type 2, it's not. Different docs have used different terms for it, eg pancreas induced diabetes, insulin dependant, I was even told by one doc that worked in America "yes type 3, we don't use that terminology here" so don't let it get to you when you are met with ignorance.
    So, unfortunately welcome to the club.
     
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  3. Jdi

    Jdi · Newbie

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    Thanks for the response Civilised Devil, sorry to here about your awful experience. Sounds similar to what i went through in 2019. They could not save my pancreas to much damage just head and tail left and still 1 cyst. Do you suffer with wild swings in your blood glucose levels hypos and hypers?
     
  4. Chrisc9492

    Chrisc9492 · Newbie

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    Hi, I was told 3 weeks ago I have diabetes & am in the middle of my doctor figuring out what to do as I'm still suffering from pain and extreme tiredness..
    I have been living with chronic pancreatitis since 2007 & have just found out about 3c from another forum...
    I have stopped sugar as soon as I was told & that has helped the pain but my tiredness & total lack of energy is still present & preventing me from working!
    Any advice would be much appreciated...
     
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  5. Jdi

    Jdi · Newbie

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    Hi, What diabetes did they tell you you have?
     
  6. Kaydee59

    Kaydee59 Type 2 · Newbie

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    I found out on Christmas Eve that I had a neuro endocrine tumour in my pancreas which is slow growing and the cause of my diabetes which is not Type 2 as I was originally told, but Type 3C. I had my gallbladder out 3 years ago and suffer from mal-absorption so have just been put on Creon with all meals and snacks and am now awaiting surgery to remove the neck, body and tail of my pancreas and also my spleen
     
  7. Jdi

    Jdi · Newbie

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    Hi, due to type3c not being well known it seems to be common that you get diagnosed with type2 when you have type3c. Type3c is related to levels of damage to the pancreas, so in my case i have no pancreas function, therefore i am insulin dependant and take Creon with meals, i have unpredictable large swings in my blood glucose levels, hyperglycaemia and hypoglycaemia, my digestions is still a work in progress. Have the doctors told you how much pancreas function you currently have? Are you monitoring your blood glucose levels? Are you taking metformin or injecting insulin?
     
  8. FranM52

    FranM52 · Newbie

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    Hi, I am type 3c after pancreatic attack 2 years ago while on holidays in Asia. Took time to get things under control but since I was put on creon 6 months ago I am doing really well. I take diamichron, metformin and now inject insulin once a day. My blood sugars are now under control and I feel very good. It seems my pancreas it still working to about 60%
     
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  9. Kaydee59

    Kaydee59 Type 2 · Newbie

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    It is all still fairly new to me, I have been on met Forman for about 8 years and take jardiance too. Was on xuoltophy insulin but now can’t take it as it is contra-indicated in pancreatic conditions so have been given tressida and now also have to take a rapid acting insulin depending on what I am eating. Have been doing a food diary and finger pricking (8 times a day) for the past 2 weeks. Waiting for a date for surgery, hopefully within the next 2 weeks.
     
  10. Civilised Devil

    Civilised Devil · Member

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    Hi,Jdi sorry for the late response haven't been too well, yes, wild swings like 27 BG reading then later that day 6.5 BG no insulin taken and sometimes the other way around. Here's the thing, the consultant I got told me that as I was getting wild swings panky must be still producing insulin, but on and off and that's type 3c the beta cells that make insulin are not being attacked by the body's immune system like type 1 diabetes, they are damaged!! The insulin is not being ignored like type 2, there is at times not enough. This in my experience is a big problem as the vast majority of the health care professionals I have dealt with do not recognise this, one Doc was gonna prescribe Metaformin like type 2 only this has a side effect of causing pancreatitis!!!! Laugh, I nearly died. Expert medic, my ass.
    I have, sometimes for months not needed insulin as my BS count is well in range so panky must be making insulin, by the way insulin making beta cells are located in the head or tail of the pancreas, keep an eye on your blood sugar level and what sugars and carbs you eat, see is there a pattern. Keep well
     
  11. rolandxkey

    rolandxkey · Member

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    Hi Jdi,
    I am Type 3c, from a total pancreaectomy in Feb 2000 as part of Whipple's Procedure for pancreatic cancer. Like you, I'm insulin dependent and take 30-40 Creon (25,000) capsules daily. Because of adjuvant chemo I only rejoined the real world in Nov 2000 and so only have 6 months of true (memorable) experience of my DM experiences and my DM management!

    I experience large swings from hypo to hyper and the reverse which can be very fast. I've been using the Freestyle Libre 2 system for just over 3 months. This does help me realise when I've got a downward crash coming; but the "low alarm" upper limit setting is capped by Abbott at 5.6, which is sometimes too late. The dilemma is deciding if I'm crashing or just falling steadily and thus whether to respond aggressively with 20gm of Lucozade or Jelly Babies - or take a more measured response. The "experts" say test independently with a finger prick, but that takes too long. I've also found that resetting the low alarm to a lower point also takes too long!

    This morning I spent over 3 hours trying to "manage" a pending hypo; I did keep myself at 3.9 before recovering a bit, but wobbled around 4.5-5 for a couple of hours, which included 53gm of small snacks. I inevitably, eventually, swung up to 10+ and briefly touched 13.1. The frustrating thing is that this not only happens once or twice a week, but I can find no explicable reason. I have the same breakfast daily and even from similar waking up readings and similar activity levels I sometimes get normal days and sometimes not.

    I do find my sensors and their readings are NOT matched by my meter readings when I'm below 4 or above 9; at the low points the interstitial is always below the meter by 0.5-1.0 units and when high the interstitial can be over 3 units above the meter. In the middle there is reasonable correlation.

    I think the confusion about whether Type 3c is Type 1 or Type 2 is because it is neither! But even so-called medical DM experts are unsure what Type 3c actually is. For sure some Type 3cs are insulin dependent and some are not. It depends what damage has occurred to their pancreas. In America they have a term " secondary diabetes" which includes damage to the pancreas from accident or injury. That fits for me. But the important thing for me is to make sure that others who need to know do know: that I'm insulin dependent. My DSN recently wrote a formal report after a consultation and described me as Type 1; I questioned her understanding of my status and she pragmatically replied that if I was in A&E no-one there would appreciate I was insulin dependent, but by (wrongly) describing me as Type 1 the insulin dependence would be picked up straightaway. I can live with that pragmatism. I asked the GP who gave me my Covid jab at the Town Hall if she knew what Type 3c was and she paused and then honestly said NO.

    Anyway, I still have a huge amount to learn about DM management and have come to this part very late in my life. At times Diabetes is frightening; knowledge helps dispel fear.
     
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  12. jane d

    jane d Type 2 · Member

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    The tiredness would go away if you have insulin. In 2017 I was diagnosed with cysts in my pancreas. The main symptoms were tiredness and abdominal swelling/bloating. I started on insulin prior to surgery, and the tiredness disappeared. I felt wonderful. Then I had surgery to remove the tail of my pancreas, spleen and gallbladder. I found that the creon capsules made me constipated so stopped taking them, much to the surgeon's dismay. I seem to be fine without it. So I take metformin modified release, penicillin, short and long acting insulin. Control of glucose levels has been much improved since I got the libre system, had been having overnight low glucose levels but fingerprick before bed and on waking didn't pick that up. Hope you get sorted and feel better soon.
     
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    #12 jane d, May 13, 2021 at 5:47 PM
    Last edited by a moderator: May 13, 2021
  13. rolandxkey

    rolandxkey · Member

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    Hi Jdi, again.

    I didn't say, but my digestion is also still "work in progress". The uncertainty about how much malabsorption is occurring makes accurate carb counting a bit of a lottery, never mind what ratios to use at what times of day or what correction factors apply. [Or what the weather is doing, or any other uncertainty factor might apply]. I have just had my first phone consult with a gastroenteritis consultant which I found reassuring and informative; he seemed to fully understand my dilemma and has grasped the nettle, so to speak, to help me get things more stable. I had to push for this, but had a background of Ulcerative Colitis which might have been reactivated by the surgery.

    I've recently had my basal changed from Levermir 2x daily to Degludec once daily. Interestingly, from 2x8 standard units of Levermir to, currently, only 12 standard units of Degludec. This at present seems to be working. For bosul I'm on Novorapid, 2 or 3 times daily - depending on whether I eat lunch. If I take small snacks and keep active then I don't need the lunch bosul.

    Thanks to the Libre 2 I take BG readings up to 30+ times daily, particularly on days when I'm yo-yoing from hypo to hyper and back. I was finger pricking 9-10 times daily, now perhaps 10 times in a week. Libre 2 has trend arrows showing up or down - but these aren't completely reliable. Libre claims its interstitial BG readings lag meter readings by approx 2.5 mins, so sometimes I need to find out where my BG is really going.

    Hope some of this helps.
     
  14. Kaydee59

    Kaydee59 Type 2 · Newbie

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    Well, I had my surgery 3 weeks ago and was fortunate to have had spleen and neck, body and tail of pancreas removed laparoscopically so am up and about and doing well. Learning to cope with fluctuating blood sugars and new regime of novorapid twice a day and tress a at night. Figuring out how much Creon to take at present and am now up to about 16 a day. Was given my follow-up appointment as a phone consultation but have managed to have that changed to a face to face one. Also have an appointment to see specialist dietitian and diabetes specialist in a week’s time. Hoping to also get GP to agree to me getting the freestyle Libre monitor when I speak to her tomorrow as my fingers are like pin cushions. On a big learning curve at the moment.
     
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  15. rolandxkey

    rolandxkey · Member

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    Hi Jdi, I seem to have idiot fingers. My surgery was in Feb 2020 and so I'm really new to diabetes, which is why I picked up on your blog - anybody out there!
     
  16. Ledzeptt

    Ledzeptt Type 3c · Well-Known Member

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    Hi Rolandxkey

    I’m sorry to hear your problems, but glad you’re getting on top of them.

    One thing I use that may help, is a “Bluetooth bridge” for the Libre: I use a Bubble device from https://www.bubblan.org, others include https://miaomiao.cool. This sends the Libre sensor readings to my phone every 5 minutes, so I can always see what’s happening (it can also be connected to a smart watch): in practice I don’t check these readings that often: I rely on multiple alarms, as follows:

    I can set two low alarms and two high alarms: the custom upper limit of the low alarm is 6.7 which may suit you. However, I find it beneficial to utilise the Bubble’s additional alarms which warn of rapid changes in BG ie a sudden drop/sudden rise so that I’m not caught off guard: I have these set for a fast change of 0.5 mmol/L in 5 minutes (can be as little as 0.3, but I found this was triggered too often).

    Plus, I can calibrate the sensor readings with a finger prick test to improve accuracy.

    Fabulous and very helpful to me, but not on prescription… I had to buy it (currently €150 about £130, shipped from Sweden, but I don’t know if there are now Brexit customs duties on top).

    There are details threads if you search Bubble or MiaoMiao and there’s a good Facebook support group for “Bubblan.org - Libre CGM”.
     
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  17. rolandxkey

    rolandxkey · Member

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    Hi Ledzeptt, thanks for this info - extremely helpful. I'll certainly look into this. Roland
     
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  18. jonesmia

    jonesmia Type 2 · Well-Known Member

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    Hi i was just curious to know what kind of diet should one take once experienced acute pancreatitis and do these restrictions remain lifelong?
     
  19. rolandxkey

    rolandxkey · Member

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    Hi Ledzeptt,
    I've now got my mini bubble, but really struggling just to get started with it. How do I get the Diabox app?

    I followed a link from Bubblan which took me to Github (!?) and even though I'm absolutely not a developer I registered with Github hoping that would give me a route to the Diabox app. Alas - not so, or at least not that I can see?

    Any advice would be welcomed. Roland
     
  20. Ledzeptt

    Ledzeptt Type 3c · Well-Known Member

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    Hi @rolandxkey

    I’m sorry I didn’t see your question sooner.

    If you haven’t sorted it out, on an iPhone, the app is in a beta-test so you need to first install the TestFlight app from the App Store. Then DiaBox can be installed. There’s a page on Bubblan’s site with a little more info and links to the apps:

    https://www.bubblan.org/docs/installation-guide-for-bubblan/diabox/installation/

    If you have an Android phone, it seems more straightforward and you should be able to install DiaBox from the playstore (link on the above page).
     
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