Type 3c total pancreatectomy Nov 21

[Kjat]

Hi everyone - just moving on in my new diabetic journey and awaiting a libre monitor.

Will it help with the very unpredictable and challenging nature of not having any endocrine or in fact exocrine function now I’ve lost my pancreas. Grateful to be alive as was metastised kidney cancer

 

[Lucyr]

A libre can only tell you your blood sugar. It can’t change your blood sugars in any way. So whether or not it will help depends on what you do with the data it gives you.

 

[Kjat]

Thanks for the reply Lucy. I fully intend to use the technology for greater visibility of how my bloods are trending depending on time of day what eaten etc. with that info make more informed and “ahead of the curve” choices - rather than reactive and constant finger pricking

 

[Robin]

I certainly found it quicker and easier to spot trends and patterns once I wasn’t reliant on trying to catch the relevant data with fingerpricks.

 

[Inka]

Welcome @Kjat 🙂 Yes, the Libre will give you more information. I find it particularly useful for overnight. I also like the alarms. I tend to look at the trends as the actual number is sometimes not that accurate.

There are a number of other Type 3cs here eg @Proud to be erratic

 

[Proud to be erratic]

Welcome also from me @Kjat ,

I had a total pancreatectomy, in Feb 20, following my dx of pancreatic cancer in Oct 19. Then chemo.

Yes the Libre was (is) extremely useful, but it has some limitations and it's helpful to be fully aware of those. When it goes wrong, sometimes fails, you need to revert to traditional finger pricking for a day or more and experience gained with this process is absolutely essential; you can become very dependent on your Libre and an abrupt loss of it is potentially panicky! I was finger pricking 10-12 times daily before Libre after I'd started carb counting. That increase alone (from 4 or 5 pricks and fixed insulin doses) gave me much improved visibility along with improved control and a reducing HbA1c. Libre gave a further noticeable improvement.

My diabetes management improves week by week, but I still have inexplicable erratic periods - I'm now more relaxed about these. I always understood and accepted that this is a long haul business. But I am now with an excellent Endocrinologist, after 2 dreadful previous experiences and he is both introducing small insulin adjustments and offering insights into "what and why". I would be happy to share that with you if it helps you. In a small way T3c can be a little easier than T1: no pancreas means no "honeymoon period" and no sudden or unexpected pancreatic responses. But having to anticipate and manage all of that endocrine functionality for yourself does feel daunting and lonely at times. I am finding that most medical people are not well informed about T1 and very ignorant about even the existence of T3c, never mind understanding the significance.

I'm about to go out for the entire day, so I'll offer you more info either this evening or tomorrow. Feel free to ask questions, anything, no question is stupid. What insulins are you on and are you carb counting? Are you happy with your Creon regime?

 

[khskel]

I'm a fellow creonista and it's a big thumbs up for the libre from me once you get used to its quirks and foibles.

 

[mikeyB]

Another fellow Creonista here. The Libre will be very useful. because Creon is not a perfect substitute for our own digestive enzymes, so the actual absorption of food can be variable. It will take you a year or more to get a complete handle on this, but it's the main reason for 3c being the most difficult form of Diabetes to control.

And I should add, the dose of Creon that you take should be taken in the middle of your meal, not before or after. The correct dose is very variable, everybody is different. The right dose is the dose that gives you normal bowel motions. It can take a while to get that just right with each meal, and nobody can get it absolutely perfect with Creon - apart from the pigs whose pancreases are used to make our Creon capsules😉

 

[Hepato-pancreato]

Creon in the middle of a meal is a new one on me! Sounds logical when you think about it, i will certainly try this thanks for the information Mikey.

 

[martindt1606]

Hi everyone - just moving on in my new diabetic journey and awaiting a libre monitor.

Will it help with the very unpredictable and challenging nature of not having any endocrine or in fact exocrine function now I’ve lost my pancreas. Grateful to be alive as was metastised kidney cancer

kjat they took my pancreas in 2010. Following metastasis in the liver in 2018 my blood sugars went haywire (could be the liver stopping what was left of the glucogen reaction or the lanreotide monthly injection or both) and i had my insulin pump upgraded to the Tandem tslim integrated with the Dexcom G6 so that i could take advantage of control-IQ (when released) to help manage my blood glucose. Pre the upgrade multiple times per week I was waking during the night with BS under 3. Now 95% of the time my BS stays around 6.2 all night.

 

[Proud to be erratic]

kjat they took my pancreas in 2010. Following metastasis in the liver in 2018 my blood sugars went haywire (could be the liver stopping what was left of the glucogen reaction or the lanreotide monthly injection or both) and i had my insulin pump upgraded to the Tandem tslim integrated with the Dexcom G6 so that i could take advantage of control-IQ (when released) to help manage my blood glucose. Pre the upgrade multiple times per week I was waking during the night with BS under 3. Now 95% of the time my BS stays around 6.2 all night.

Interesting. When did you originally start pumping and were your qualifying criteria good enough to get your 1st pump on prescription?

At a very recent Endo consult on 9 March, pump technology wasn't ruled out, but I was asked to try some adjustments first and see how they panned out. On the face of it - fair enough. My next consult is in August so I need to have my strategy sorted out if I'm going to ask again. I know it will need considerable commitment, but I feel I'm already dedicating most waking moments to anticipate and prevent hypos; so can't be much more demanding than now .... ?

 

[martindt1606]

Interesting. When did you originally start pumping and were your qualifying criteria good enough to get your 1st pump on prescription?

At a very recent Endo consult on 9 March, pump technology wasn't ruled out, but I was asked to try some adjustments first and see how they panned out. On the face of it - fair enough. My next consult is in August so I need to have my strategy sorted out if I'm going to ask again. I know it will need considerable commitment, but I feel I'm already dedicating most waking moments to anticipate and prevent hypos; so can't be much more demanding than now .... ?

Interesting. When did you originally start pumping and were your qualifying criteria good enough to get your 1st pump on prescription?

At a very recent Endo consult on 9 March, pump technology wasn't ruled out, but I was asked to try some adjustments first and see how they panned out. On the face of it - fair enough. My next consult is in August so I need to have my strategy sorted out if I'm going to ask again. I know it will need considerable commitment, but I feel I'm already dedicating most waking moments to anticipate and prevent hypos; so can't be much more demanding than now .... ?

2010 total Pancreatectomy
6 months Lanctus * 1 / Novorapid
6 months Lanctus * 2 / Novorapid
6 months Levermir * 1 / Novorapid
Old fashioned 1 week CGM
12 months(ish) Levermir * 2 / Novorapid

None of the insulin regimes and interim adjustments were sustainable, CGM when printed and reviewed confirmed issues with moderate exercise, workshops / meetings, dawn phenomenom... backing up why I was finger pricking 12+ times a day.

Diabetes clinic only had budget for Juvenile Pumps. Luckily I had a great consultant who put a request through against a discretionary budget and was able to convince the powers that be that it was needed.

Using a single insulin certainly helped and significantly reduced variability especially when adjusting bolus for known future events.

Following Liver Mets I was prescribed a G6 and moved to the tslim pump after blood sugars became extremely erratic. CGM and Control-IQ help maintain blood sugars in range but its still a 24*7 challenge.

 

[Proud to be erratic]

Many thanks.

I fall between 2 stools, which might not be to my benefit. I live in Bucks and had my Whipple's in Oxford. Bucks were providing my DSN and Endo, but Oxford HPB continued with surgical review and at the 18 month point spotted that my Diabetes Clinic was not much help and offered to refer me to Oxford Centre for Diabetes, Endocrinology and Metabolism; I snatched their arm off screaming YES PLEASE and the last 6 months have been a complete revelation into D management. When I told my Bucks DSN, I was immediately signed off by Bucks! So much for a joined up NHS. Still, one step at a time.

 

[Proud to be erratic]

Another fellow Creonista here. The Libre will be very useful. because Creon is not a perfect substitute for our own digestive enzymes, so the actual absorption of food can be variable. It will take you a year or more to get a complete handle on this, but it's the main reason for 3c being the most difficult form of Diabetes to control.

Agreed, and made even better by having the Diabox app converting Libre into real CGM. I watch my BG change as I eat and adjust what I eat as necessary: eating the high GI content early if my insulin is arriving before the carbs have converted to glucose - ie not got the prebolus timing right - or vice versa.

@Kjat: your body's resistance to insulin is not constant during the 24 hr day and most people need longer at breakfast time for the bolus dose to start to have an effect. I need 45 mins if my BG at time of bolus is in the 5-8 zone and longer if I am high and need a correction as well as insulin for food. On Monday I had to wait over 2 hrs for my abnormal high to get to below 9 before I could start eating my breakfast. I'm retired and can (reluctantly) accommodate this delay and hassle; if I was working I would need to change my routine significantly. This morning I had to drop my car at the garage first thing, then a 25 minute walk home; my BG remained very steady (no carbs taken, but no insulin on board to cause a problem) then my prebolus delay was very short; the before breakfast brisk walk had significantly decreased my insulin resistance (improved my insulin sensitivity).

Lunch prebolus 20-30 mins; dinner prebolus 10-15 mins. Both longer if I'm high and need a correction. If I eat while above 9 or 10ish then the correction doesn't really take hold; I dip briefly and go high again. It seems that while high my insulin resistance increases.

And I should add, the dose of Creon that you take should be taken in the middle of your meal, not before or after.

Agreed, in principle. But not all together; best spread across the meal, which is a small amount of 'faff' but gives best results.

The correct dose is very variable, everybody is different. The right dose is the dose that gives you normal bowel motions. It can take a while to get that just right with each meal, and nobody can get it absolutely perfect with Creon

Again fully agreed. @Kjat I've been told several times you can't overdose on Creon; so don't be afraid to increase dosing if bowel activity is poor.

 

[everydayupsanddowns]

Welcome to the forum @Kjat

Glad you have connected with some of our Type 3c members.

Hope you find it helpful to share experiences, and that the forum gives you a safe place to ask questions, vent, let off steam, and compare notes with others 🙂

 

[Proud to be erratic]

Hello again @Kjat , is there anything else you would like to ask?
Do you know when you will be getting your Libre monitor?
Are you carb counting?