Hi - new Type 3C patient

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Good morning Paul @Busdriver60 and @Silvershoes.

I was wondering how each of you are getting on. You've each had a few days to get a little more used to some of this D malarkey with the potential deluge of information from your Libre 2s.

@Silvershoes60 I have a cousin who's been T1 for many years and I quite unashamedly tapped into his knowledge and experience. I was very "needy" at first, particularly because Covid lock down was intruding into everything and distracting everyone! Mostly though I didn't have CGM and was simply lost; all quite frightening really. So a T1 niece who is also a dietitian is a dream scenario! It sounds as though your Libre 2 is now established as a fixture on your repeat prescriptions and if it is not "shake" whatever tree you can find to make it so. You are entitled and no HCP should be allowed to even think that being T3c somehow undermines that entitlement.

Paul, pleased to see that you are getting reassurance that your karate can continue. I happen to live very close to Bracknell and now just back from a bit of travel to Paris, I would be happy to meet you and enjoy a coffee somewhere locally. If you think this might be a help please "PM" me using the envelope on the top right of your screen and we can look for a convenient date/time. Please don't feel you are now obligated to do this. Entirely your choice.

Both of you, in his book "Think Like a Pancreas" the author Gary Scheiner states "Diabetes is Complicated, Confusing and Contradictory". He is spot on as far as I'm concerned. I don't want to burst any bubbles but at least help to manage your expectations. Don't expect to have this D stuff cracked and see lovely flat graphs each day; my glycaemic variability (erraticness or brittleness) is consistent: always plenty of peaks and troughs. However I do now have some understanding about why and feel very much less vulnerable when things go wrong.

In closing for now and while mentioning things going wrong ... this morning I took my normal basal of 8.5 units, calculated my bolus for 6.5 units (part food, part correction from my overnight high) then dosed myself with a further 6.5 basal !! Wrong pen, beautifully decorated with a gold star and multi-coloured bands to make my basal pen very different from my plain bolus pen. So now my 350 daily decisions for managing the 42 factors that are known to affect our blood glucose have just got more complicated. This morning I've taken my real bolus of 6.5 and know I've got a lot more basal insulin on board that will start playing later today and (because it is the very long lasting Tresiba) will still be playing tomorrow and Friday probably. Nobody said this would be easy! Incidentally insulin is just insulin. Our body doesn't know that bolus is supposed to be rapid or basal slow ... its just insulin, there with its keys to unlock the doors and allow glucose to move from our blood to our cells and thus provide nourishment. So how, during the next 48+ hours the excess of insulin on board will affect me is my unknown BG factor.
Cheers! I’ve just spoken to our Gp diabetes/general nurse who has sent referral for me to see hospital team. The nurse has held her hands up as her suggestion of increasing insulin (Toujeo) every few days obviously isn’t going to help long term. I mentioned advice from this site about an insulin pump or learning how to dose myself before food etc. I’m not sure if the Creon I have to take following pancreatitic surgery contributes to higher glucose readings? The Libre gives you a lot to think about! At least I’ve got the Libre sensors on repeat prescription for which I’m grateful! Have a good day. Mike.
 
Mike, the Creon affects your BG only if it's insufficient. In that circumstance you can be taking insulin to counter carbs being eaten - but those carbs are not fully digested and passing straight through. Then you, potentially, have excess insulin on board.

In practice, until you are properly carb counting, all that you are eating is not counted and whoever gave you your fixed doses is geographically a long way from seeing what size portions of what foods you really are consuming. Do consider getting on top of carb counting and then be able to start making your own decisions about what you want to eat and how much insulin you need. CGM at least allows you to see cause and effect and gradually "tune" your insulin to carb ratios and your correction ratio.
 
Just found this forum and this thread. Good news to me ! I'm also a type 3c, it seems. Never before knew there was a type 3c.

Diabetic since 2018 but on/off with gut issues since 2011. I thought instinctively that it was a top-of-the-colon issue.

Originally treated with Gliclazide then nothing for 5 years and now Metformin soon to be augmented with Gliclazide again. Have been taking Creon since 2019. Had four Endoscopies to identify and verify the Chronic Pancreatitis
 
Hey everyone! My latest blood glucose level has plummeted to 8.4 this morning from a high of 21.8 over 3 weeks ago.
I would like it to dip even further, but this is a really great achievement for me and I'm very pleased.
I would really like to encourage any new patient, that is quite achievable.
 
Just found this forum and this thread. Good news to me ! I'm also a type 3c, it seems. Never before knew there was a type 3c.

Diabetic since 2018 but on/off with gut issues since 2011. I thought instinctively that it was a top-of-the-colon issue.

Originally treated with Gliclazide then nothing for 5 years and now Metformin soon to be augmented with Gliclazide again. Have been taking Creon since 2019. Had four Endoscopies to identify and verify the Chronic Pancreatitis
well done to you!
 
Hey everyone! My latest blood glucose level has plummeted to 8.4 this morning from a high of 21.8 over 3 weeks ago.
I would like it to dip even further, but this is a really great achievement for me and I'm very pleased.
I would really like to encourage any new patient, that is quite achievable.
 
Hey everyone! My latest blood glucose level has plummeted to 8.4 this morning from a high of 21.8 over 3 weeks ago.
I would like it to dip even further, but this is a really great achievement for me and I'm very pleased.
I would really like to encourage any new patient, that is quite achievable.
Great news. Well done! Next target is to get a premeal reading below 7.
 
Yes indeed If I'm sensible about it I should have no problem. Oh yes, I should receive my new Libre sensor device tomorrow.
 
Just found this forum and this thread. Good news to me ! I'm also a type 3c, it seems. Never before knew there was a type 3c.

Diabetic since 2018 but on/off with gut issues since 2011. I thought instinctively that it was a top-of-the-colon issue.

Originally treated with Gliclazide then nothing for 5 years and now Metformin soon to be augmented with Gliclazide again. Have been taking Creon since 2019. Had four Endoscopies to identify and verify the Chronic Pancreatitis
Welcome to the forum Victorand please ask any questions and we will try and help as well as learn from your experiences.
BD really well done so far and good that you are showing such good improvement.
 
Welcome to the forum Victorand please ask any questions and we will try and help as well as learn from your experiences.
BD really well done so far and good that you are showing such good improvement.
Hi Victoriand welcome!
 
Welcome to the forum Victor @victorhamesse and to this small but exclusive T3c club. I got here after a total pancreatectomy in Feb 20 so my D is rather as if T1 (but definitely not T1) and I'm fully insulin dependent. However we have a few T3cs who are here because of pancreatitis; if I'm remembering correctly all the other T3cs from pancreatitis are on oral meds and also some insulin to help their BG management. At least 2 of these started on oral meds only, so familiar with your predicament. Thee is also a fair amount of experience in the taking of Creon.

How are you finding your BG management? Do you have a recent HBa1C reault? Are you under a GP Surgery or under a Hospital based Team? Are you getting the essential annual diabetes checks? Sorry, so many questions! We are a friendly bunch here and between the full membership there is a huge wealth of knowledge and experience in managing Diabetes. If something is bothering you do post a question; no question is stupid, we've all been bamboozled at some point.

We look forward to hearing more from you, in due course.
 
Just found this forum and this thread. Good news to me ! I'm also a type 3c, it seems. Never before knew there was a type 3c.

Diabetic since 2018 but on/off with gut issues since 2011. I thought instinctively that it was a top-of-the-colon issue.

Originally treated with Gliclazide then nothing for 5 years and now Metformin soon to be augmented with Gliclazide again. Have been taking Creon since 2019. Had four Endoscopies to identify and verify the Chronic Pancreatitis
Welcome from me as well @victorharnesse
I'm another 3c following pancreatitis, one severe episode of acute pancreatitis for me.
Hope your treatment continues to work well for you.
 
Great news. Well done! Next target is to get a premeal reading below 7.
Yes, it was 7.4 this morning, very pleased with that. I'm still looking for a counsellor, as I just became a diabetic 3 weeks ago and it has hit me very hard, emotionally and financially. Any suggestions what I should do now?
 
Welcome from me as well @victorharnesse
I'm another 3c following pancreatitis, one severe episode of acute pancreatitis for me.
Hope your treatment continues to work well for you.
Welcome @victorhamesse, I have a very similar case to yours. I was diagnosed with acute pancreatitis and just a year later, this year I also diagnosed with diabetes 3c. It must have hit you hard like it has with me. I also have a needle which doesn't help . Only today, I just received my new Libre sensory device which I will wear on my right arm to monitor my glucose sugar levels.
Please keep in touch as I'm sure we can support each other.
 
Cheers! I’ve just spoken to our Gp diabetes/general nurse who has sent referral for me to see hospital team. The nurse has held her hands up as her suggestion of increasing insulin (Toujeo) every few days obviously isn’t going to help long term. I mentioned advice from this site about an insulin pump or learning how to dose myself before food etc. I’m not sure if the Creon I have to take following pancreatitic surgery contributes to higher glucose readings? The Libre gives you a lot to think about! At least I’ve got the Libre sensors on repeat prescription for which I’m grateful! Have a good day. Mike.
Hi Silvershoes, I'm sorry I haven't replied to your post, but here I am! I would continue taking Creon, that is very important. I'm in a similar situation as you. and I have never been to stop taking Creon. I have also just received my Libre sensory today, so I'm pretty excited about it.
 
well done to you!

WOW, what a reception. Thanks.
I’ll try to respond to the items raised by you all in one posting, so here goes.

I’m under a GP team at the moment but the crucial steps were taken by a Gastro Surgeon who didn’t believe I was ill enough to warrant Gastric Surgery. The Pancreatitis showed itself first as a severe acute jaundice that was thought to be Pancreatic Cancer. False diagnosis. The Diabetes was from a blocked bile duct that Gliclazide fixed. (HbA1c level at 90 reduced to 40 after a year).

Since then it has remained in the low 50s until going bonkers again this year - thus the Metformin and soon Gliclazide again. Consultant opines that eventually I’ll probably be on Insulin. I’m glad to see that the Libre 2s are available on the NHS as I didn’t relish self funding the £200 monthly.

Creon is working fine. I had to find the dosage that balances Steatorrhea against Constipation. I recommend that any user seek a prescription for 10K pills as well as 25K pills (if these are the right levels for you). A 10K pill is fine for a snack (25K = overkill) but multiple 25Ks are fine for meals.

Sugar levels now go from 8 to 11 during a day, but only due to a strict diet regime. No fruits, No pasta, bread, pastry etc. Gets really boring with Chicken, Cheese, Veg and Oat Biscuits, but Porage is always fine. After Gliclazide I’m looking forward to some variety. Oh, and I don’t drink anymore. Alcohol is a poison now.

Cheers
 
WOW, what a reception. Thanks.
I’ll try to respond to the items raised by you all in one posting, so here goes.

I’m under a GP team at the moment but the crucial steps were taken by a Gastro Surgeon who didn’t believe I was ill enough to warrant Gastric Surgery. The Pancreatitis showed itself first as a severe acute jaundice that was thought to be Pancreatic Cancer. False diagnosis. The Diabetes was from a blocked bile duct that Gliclazide fixed. (HbA1c level at 90 reduced to 40 after a year).

Since then it has remained in the low 50s until going bonkers again this year - thus the Metformin and soon Gliclazide again. Consultant opines that eventually I’ll probably be on Insulin. I’m glad to see that the Libre 2s are available on the NHS as I didn’t relish self funding the £200 monthly.

Creon is working fine. I had to find the dosage that balances Steatorrhea against Constipation. I recommend that any user seek a prescription for 10K pills as well as 25K pills (if these are the right levels for you). A 10K pill is fine for a snack (25K = overkill) but multiple 25Ks are fine for meals.

Sugar levels now go from 8 to 11 during a day, but only due to a strict diet regime. No fruits, No pasta, bread, pastry etc. Gets really boring with Chicken, Cheese, Veg and Oat Biscuits, but Porage is always fine. After Gliclazide I’m looking forward to some variety. Oh, and I don’t drink anymore. Alcohol is a poison now.

Cheers
Hi Victor,
Glad you found the reception warm and informative and similar to others my 3c diagnosis followed an acute pancreatitis attack.
Always interested to know feedback on whether people resume any level of alcohol even if Pancreatitis was triggered by gall stones rather than alcohol.
I was advised not to drink again but a one off glass of bubbly on a special occasion would be no issue but I have not touched a drop of alcohol for last 2 years based on advice given.
However I do know of some 3cs who do touch alcohol even if in on only rare occasions.
 
I wanted to preserve my pancreas from failing completely for as long as possible. Given that digestive enzyme production has already failed, I made a bet with myself wrt drinking. I can deal mentally with probabilistic risk. If I popped off before 5 years, then stopping was a bad idea. After 10 years, then the reverse. Between the two then it's a matter of opinion. It's now 5 years.
 
I wanted to preserve my pancreas from failing completely for as long as possible. Given that digestive enzyme production has already failed, I made a bet with myself wrt drinking. I can deal mentally with probabilistic risk. If I popped off before 5 years, then stopping was a bad idea. After 10 years, then the reverse. Between the two then it's a matter of opinion. It's now 5 years.
Thanks Victor as was not sure if recommended by Consultant or not.
I can manage fine without alcohol and no wish to have a session etc but must admit do quite miss the odd pint of beer or glass of wine on a summers evening.
Am pretty sure I would be OK but would never forgive myself if it triggered another attack and simply do not want to take the chance.
ATB
 
Good idea. In my case I had a bottle of wine a day (two maybe at weekends) for almost ten years. Nothing stronger. It's bit like stopping smoking. I quit completely at 30.
 
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