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  • Shared Experiences

    Type 1 diabetes following total pancreatectomy

    I was diagnosed with IPMN (a tumour of the pancreas) which led to a total pancreatectomy in June 2011. The brittle diabetes resulting is a challenge. My BGLs can vary on a single day from a hypo to the very high teens.
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  • Anonymous

    I also had IPMN's and had a total pancreatectomy in July 2012 .   I recovered well from the operation but sometimes I can't explain my highs or lows.   My Endocronologist seems fairly happy with my numbers  I am  mostly very careful of my diet and count carbs as best I can.  I have never heard of brittle diabetes what does this mean.?

  • sanspancreas

    HealthShare Member

    Great to hear from you. I know of only one other in Australia who is living without a pancreas and that was not due to IPMN. Brittle diabetes refers to very unstable blood sugars:  without a pancreas and unlike standard Type 1 diabetes, you don't have the hormone glucagon which helps to bring blood sugars up when they dip low. I take 11 units of Levemir at 8:00 am and 2 at 6:00 pm; 3 units of Novo Rapid before breakfast and 1.5 before the other two meals. I take 2 to 3 Creon (10 000 units) before each meal. With physical activity, I reduce the insulin a little. I am also very careful about carb intake. Is your regime similar?

  • kirkland

    HealthShare Member

    Thank you for your reply.   I live in Canada so some things may be different such type of insulin or terminology etc.   I am amazed there is only one as far as you know living without a pancreas.  It certainly is not common and I don't know anyone personally here but it is done I believe fairly often.   Although in a lot of cases they do an operation called a Whipple which takes only part of the pancreas mostly the head and reconnects it so then you are not a diabetic.   My surgeon hoped to do this but did not like the look of what was left and if it was going to make a good connection so he took it all.   I did know of someone who had a pancreatic transplant.   I am on a sliding scale with a baseline.   My baseline is 5 units of Humulin R (rapid) before breakfast, 6 before lunch and 6 before dinner.   At bedtime I take 12 units of Humulin N (long lasting).   I also take Creon. 2 before each meal.   Depending on what my blood sugar readings are before each meal I either add or substract from my baseline.    My baseline is 5.1 - 10 mmol/L  As an example if I was 4.1 - 5.0 I would subtract 2 units .  If I was 10.1 -12 I would add 1 unit etc.   My Endocronologist might adjust these add on and subtractions according to what he sees in my log book .   

  • sanspancreas

    HealthShare Member

    Many thanks. Your advice on varying insulin according to  blood sugar reading is very helpful. I also consider planned physical activity. As well, a physically active day leads to  reduced insulin requirement the next day.
    Following an endoscopic ultrasound, my IPMN was firmly diagnosed but, as with you, there was the possibility of a partial pancreatectomy, leaving me the insulin function. The surgeon took it all and just as well since the entire gland was affected by high grade dysplasia which would inevitably have  led to cancer. I understand that diagnosis of IPMN is fairly rare. It is often without symptoms and discovered too late. In my case, I developed chronic diarrhoea following a heavy course of antibiotic prescribed for cellulitis. Investigation eventually uncovered the tumour. 

  • kirkland

    HealthShare Member

    Like you the final pathology report showed severe dysplasia so I and the surgeon was very glad that he had taken it all.   I was not sick and showed no symptoms .  The IPMN's were discovered during a CT Scan for something else that turned out to be nothing.  I then had an MRI and Endiscopy.  So I was a very lucky lady.  If you have any other questions or if I have for you I will be in touch.  Thank you and stay healthy.

  • 1


    Dr Kevin Lee

    Endocrinologist, Nuclear Medicine Physician

    Consultant Physician in Endocrinology, Diabetes & Nuclear Medicine. I am on Twitter @dr_kevinlee. I am on Facebook I help patients with obesity, diabetes, thyroid, … View Profile

    Just putting in my general concern about sharing information on insulin doses.

    It is important to know that everyone is different in terms of what 1 unit of insulin would do to their sugars.

    Also what is an appropriate blood sugar for a person is also different depending on the risk of hypoglycemia and also ability to detect hypos.

    Therefore I strongly encourage that you see your GP or a diabetes educator regarding insulin titration.

    There are SMART glucometers out there that can assist in more physiological adjustment of insulin doses than with a sliding scale as listed above.


    Dr Kevin Lee




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