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Newbie - Type 3c???????????

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Simon1212

Simon1212

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Other Type
Hi, I have been recently diagnosed with diabetes, and although I haven't seen my consultant yet to discuss it, I'm led to believe I am type 3c following a partial pancreatectomy. I have gleaned this information from other forums, as the few trained people I have spoken to don't seem to know what category I fall into having only 1 or 2 as options. It is purely academic as I am being treated well with regular phone consultations with the diabetes clinic, GP and pharmacist, but it would be useful to know in the long term to help me accurately examine my prognosis.
Like most newbies, I am struggling with the regime of testing and medicating, it seems to take over your life, but I'm sure I will get used to it.
Any advice regarding management of 3c would be much appreciated.
 
Hi Simon, welcome. I am a type 3c but as you’ll have noticed there isn’t a drop down box for that. I had a distal pancreatectomy 11 and a half years ago along with a splenectomy. I’m still here to tell the tale. Amazingly I didn’t become diabetic for three years after my op. I was initially diagnosed as type 2 and of course I knew no better. Obviously diet, exercise and tablets didn’t help and after doing my own research and joining this forum I broached the idea I may be “ different” and was put on insulin, it took me 7 years to train my DSN/ GP nurse ( diabetes specialist nurse) in my type. Believe it or not I had my first hospital appointment last year after wearing the nurses at my GP surgery down and met a proper DSN who knew all about my type. I could have cried, she only has two of us on her books. I was then re diagonosed as Type 1 to enable me to access the services I require. I expect you will also be taking Creon for digestive problems. There’s a handful of us on here who have had full and partial pancreatectomies. Distal or Whipple. What did you have if you don’t mind me asking? I live life to the full now although it was a longish haul to full recovery, went back to work after 4 months on a phased return but am now retired due to ill health, not mine, my hubby’s! I am loving not having to go to work, I do lots of walking, I climb fells, not too big though! Look after my four grandchildren and my husband who has a very complex heart condition, although he is also quite well at the moment, considering. I show my scars off with pride on my numerous overseas holidays, it’s shows I have lived. I personally think although the diabetes is a pain in the backside at times, spontaneity doesn’t figure much in my life, it’s my gastric problems that concern me the most. You will learn what you can and can’t tolerate, cream is my nemesis as is mayonnaise. I do eat both but make sure I have plenty of Creon and am near a loo! TMI? Ask any questions you want, I will try my best to reassure you. Good luck on your Type 3 journey. Elaine.
 
Hi Elaine, thanks for your reply. Although I wouldn't wish this on anyone it is comforting to know I'm not alone. I had severe acute necrotising pancreatitis in Feb 2018 which eventually led to a partial (approx. 80%) pancreatectomy and gall bladder removal. I was in hospital for 4 months getting home in June. I'm due to retire from the fire service in Sep 2019. My hope was to be fit enough to return to work full time in time to retire but unfortunately that is looking unlikely. I still have very limited stamina and tire quickly.
I managed to dodge the diabetes bullet for a couple of months but a chest infection put me back in hospital and knocked me over the edge. It was hoped that once I had recovered from the chest infection I would dip back under the diabetes threshold, but sadly no.
I'm interested to hear you enjoy foreign travel because at present I can't get insurance. Once all of my conditions are added up the insurance companies are not prepared to accept the risk, even though they are connected to the pancreatitis. Any advice?
 
Wow! 4 months in hospital, thought I was hard done to spending 4 weeks in there! I didn’t travel abroad for a couple of years afterwards as my husband had a heart attack and quad bypass just 4 months after my op, what a pair eh? When we did eventually take the plunge it was my hubby who had the insurance problems. I had my op because of a tumour, thankfully discovered to be pre cancerous and didn’t need any chemo etc. so my insurance wasn’t too bad at first as unless it’s cancer or heart related you don’t have to declare it if it’s more than two years ago, trying to explain why I didn’t have a spleen was more difficult as it was healthy when it was removed, they took it out “ just in case” of malignancy. I had my gall removed 18 years ago due to acute pancreatitis which was the reason I developed a tumour 7 years later. The diabetes barely makes a dent in my insurance premium as I haven’t had any complications, I declare my medication of course and because I haven’t been in hospital for quite a few years now my insurance for my last holiday in March to Portugal cost me £8! So just hang fire before you decide to go whitewater rafting down the Amazon! There’s lots of lovely places in the UK and we do rent cottages or do hotels here too. I know at the moment you probably feel you will never be “normal”, to be fair we never will be, but it does get easier. I am a glass half full girl and don’t often throw my rattle out of the pram, what’s the point? If the only thing that came out of my op was diabetes and the skill to poo through the eye of a needle, I’m happy, it could have been worse! Keep in touch. 🙂
 
Meant to say @Simon1212 put “Type 3c” in the search forums tab and you will find more info from other members.
 
Hi, 4 months seems like a long time but I was as high as a kite for the first month and can remember very little, just as well from little bits I've been told. Unfortunately I have an apartment in Spain that I need to get to to sort out some housekeeping issues so I think I'm just going to have to pay when I finally find someone to take it on.
Why is it that 3c isn't mentioned anywhere other than in forums? Is it a newly discovered thing? My diabetic nurses don't seem to be aware of it, or my GP or my pharmacist. All have been extremely helpful and caring and seem to be giving me what I need despite their lack of knowledge of the condition. Even the diabetes sites like this one and Diabetes.co.UK, which I have also joined, don't give any specific advice.
 
That is the frustrating bit about it all. It’s a fact we know more than the GPs and DSNs. Hopefully you will get to see an endocrinologist eventually ( good luck with that, I haven’t in over 11 years) who SHOULD know something about it. I think it’s always been there but has never had a name and was treated like type 2 which we now know isn’t ever going to work. Are you on insulin? If not, it may be worth mentioning to your HCP, health care professional, that the NICE guidelines suggest that “ people with Type 3c diabetes should be assessed every 6 months for the potential benefit of insulin therapy”. Google it. I have asked @Hannah DUK on a thread on here about more info on Type 3c and at the very least a drop down box we could use as opposed to “ others” but unfortunately I was ignored! We need to unite and protest on the streets or at the very least have a leaflet campaign! I honestly can’t be a**ed to be fair, I am what I am and I just keep educating myself and my HCPs! Be assertive, question and suggest. There’s not many of us and when you learn that most GPs don’t even know how to deal with Type 1s, it’s a bit scary!
 
The NICE guidelines for 3c following pancreatectomy (there are some, so you you could refer your diabetes team to them.)
https://www.nice.org.uk/guidance/ng104/chapter/recommendations#type-3c-diabetes-2

Note that they highlight the fact that the diabetes is caused by destruction of insulin producing cells, which is the cause of Type 1. This should be screamingly obvious. If 3c diabetes develops after pancreatectomy insulin is the only sensible treatment.

On the pancreatitis forum, I don’t think any of the diabetics aren’t on insulin.
 
Welcome to the forum @Simon1212

We've a happy band of Creonistas here for you to share experiences and frustrations with.

I will raise the drop down box issue again @eggyg 🙂
 
Thank you all for your replies. it is very early days for me and I know I have a lot of reading to do but it is reassuring that there are so many informed and experienced people I can turn when required. Thanks again.
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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