Newly diagnosed type 3C

[Jllo]

Test type 3C does exist and I have that in writing from my diabetic consultant
I acquired my diabetes through pancreatic cancer and having my pancreas and other related organs removed through surgery
Thankfully my cancer was caught in time and I am now 6/12 post op and cancer free
The biggest dip in this is my diabetes which is so hard to control
I inject between 5-7 times daily
Night and morning long actin insulin in the form of Levemir
After meals x3 - on instruction from consultant - Novo rapid
I also have the option of quick fix doses if my blood sugars are too high particularly before bed
I am not stable yet and my team feel that this will take some time
Not your usual run of the mill diabetes as my digestive system is very much changed due to the surgery
Anyone else out there aquired their diabetes in a similar way to me
Would love to chat and compare in case you have mastered it !

 

[Neil457]

Hi, I suppose I am in a similar position to you. I had my pancreas, spleen and gall bladder removed in April 2020 due to a malignant tumour found on the pancreas. I am almost 4 years now and all going well will be signed off from the cancer clinic consultant next year. I take Creon with everything I eat, approx 6/7 with a meal and 3/4 with a snack. I have done the Dafne course and carb count accordingly. I am on Humalog (Bolus) and just changed to Levemir for the Basal. I probably inject around the same number as you per day. I had something similar to you i.e. stomach resection. My digestion is now stable but took a bit of re-adjustment early on. Got my Creon dosage about right now too for the digestive system of function correctly. I have always treated myself as a Type 1 and only discovered on this site today that in fact I am Type 3c ! Get back in touch if you want a chat about it. I am using Libra 2 system and today shows that over the last 7 days I am 74% in target range. All the best and get back in touch if you would like to.

 

[Jllo]

Thankyou for responding. So pleased that you are hoping to be signed off by your oncologist next year. That is a fantastic achievement
I presume that you take Creon 25,000 as opposed to 10,000. I am , after about 6/12 able to get my proper dose of 100,00 as I have been hit by the shortage of this dose.
Thank goodness as I was taking up to 50 of the lower dose daily!
Just been reviewed today by diabetic dietician and am trying to spit my novorapid dose at mealtimes as I am not a big carb eater.
think it will take me a long time to get to your stage but you are a good three years ahead of me
i am, at the moment 30% in range this week. Hope to improve on that as soon as possible
i too have Libre2 and thank goodness. It’s bad enough having to inject multiple times a day without finger pricking too
i wish you well and will certainly be ”chatting “ in the future

 

[Neil457]

I am only taking the 10,000 Creon tablets Jilo. I have quite a good appetite too. So around 30-40 K with snacks and 60-70 K with meals. I suppose it is what works for you individually. My weight is stable, just under 12 stones. Reasonably active and 75 years old.

 

[Dibbler]

Hi,

I’m in a very similar position, diagnosed with type3c over a year ago (I still have questioning eyes even from healthcare professionals when I say type3c diabetes)

My pancreas, gallbladder, and part of spleen were removed, with stomach recreated some 6 months ago, having suffered with chronic and in significant decline pancreatitis after life threatening sepsis, whilst still recovering and adjusting I also find my diabetes very hard to manage, experiencing hyoid almost every night whilst sleeping, I wear the libre remote monitoring system where the app on my iPhone and Apple Watch warns me, thankfully even when sleeping.. I’m positive this will level out m, but to enable me to improve my general health and therefore gut health I’m pushing for an automated insulin pump, which I believe would greatly improve diabetes management, I am desperate to get back to independent sports, Wild Swimming & cycling.. It’s borderline irresponsible of me if I were to embark on these now but with a controlled, automated micro dosing system I genuinely believe it will be possible, and would improve my quality of life physically & mentally.

Have you considered such a solution, does anyone out there have experience of this..

Best

K

 

[Jllo]

Hi K
Yes I have considered this and, at my first and only consultation with diabetic consultant since my surgery in August, I did broach this with him. Alas, in my area West Berkshire , it is not nhs funded at the moment. He tells me I would be the ideal candidate for this and they are busy writing policies, protocols and procedures at the moment but watch this space!
I would love an automated insulin pump as it would make my erratic diabetes much easier
At the moment I have just started splitting my doses to before and after meals on advice from diabetic dietician who has access to my Libre2 data. This means more injections on a daily basis but I am willing to do this to avoid the high and low glucose levels.
I have also yesterday started to carb count! Not a big carb consumer but I do need to raise my intake to try and put some weight on! What a vicious circle! But better this than what could have been
I am not big on sports but I am a very active 73 year old who loves to walk daily
Before diagnosis and treatment I could walk anywhere between 2-6 miles a few times a week. Gradually getting my walking legs back but nowhere near my best at the moment
I am much improved.
Would be interested in your journey to a successful infusion pump
Janet

 

[novorapid24]

Test type 3C does exist and I have that in writing from my diabetic consultant
I acquired my diabetes through pancreatic cancer and having my pancreas and other related organs removed through surgery
Thankfully my cancer was caught in time and I am now 6/12 post op and cancer free
The biggest dip in this is my diabetes which is so hard to control
I inject between 5-7 times daily
Night and morning long actin insulin in the form of Levemir
After meals x3 - on instruction from consultant - Novo rapid
I also have the option of quick fix doses if my blood sugars are too high particularly before bed
I am not stable yet and my team feel that this will take some time
Not your usual run of the mill diabetes as my digestive system is very much changed due to the surgery
Anyone else out there aquired their diabetes in a similar way to me
Would love to chat and compare in case you have mastered it !

Sorry for all you went through,yes pancreatitis here ,chronic for 14, diabetic for 3 now,head of pancreas inflammation constantly and pseudo cyst, damaged due to reoccurring alcoholic pancreatitis ,, insulin,Creon and nexium for life now.i always worked but also parted hard at wknds, really damaged the pancreas and always wondered about removal or part removal,how big of a change would that be?

 

[Prime Monkfish]

Hi all, I recently had my pancreas, spleen and gall bladder removed due to the discovery of a large IPMN in my main pancreatic duct. I have now been discharged from hospital and I’m starting the slow road to discovery. All this means that, like others on this forum, I now have Type 3C diabetes and I have to admit I am struggling somewhat. There are a number of things worrying me, firstly getting my basal dose correct. I was put on Lantus in the hospital but my practice nurse has swapped me over onto Levemir. First question regarding that, do people generally take two doses of this (one at night and one in the morning)? I’m on 10U at night and have been advised to take 5U the following morning. I guess there will be some trial and error there. My second question relates to FreeStyle Libre. They fitted one on the hospital and it was fine. Just changed it today and the new one is giving much higher readings than my accuchek, does it take a while for them to calm down? Don’t really want an unreliable system on me nor do I want to be pricking my fingers all time. Any help will be gratefully received.

 

[novorapid24]

Hi all, I recently had my pancreas, spleen and gall bladder removed due to the discovery of a large IPMN in my main pancreatic duct. I have now been discharged from hospital and I’m starting the slow road to discovery. All this means that, like others on this forum, I now have Type 3C diabetes and I have to admit I am struggling somewhat. There are a number of things worrying me, firstly getting my basal dose correct. I was put on Lantus in the hospital but my practice nurse has swapped me over onto Levemir. First question regarding that, do people generally take two doses of this (one at night and one in the morning)? I’m on 10U at night and have been advised to take 5U the following morning. I guess there will be some trial and error there. My second question relates to FreeStyle Libre. They fitted one on the hospital and it was fine. Just changed it today and the new one is giving much higher readings than my accuchek, does it take a while for them to calm down? Don’t really want an unreliable system on me nor do I want to be pricking my fingers all time. Any help will be gratefully received.

I personally take 8 units of levemir every morning and novorapid throughout the day,I don't take green pen at night because I worry about a hypo during the night,I took off my glucose monitor because I couldn't trust it as it wasn't warning me in time of blood sugar crashes so I went back to contour testing strips