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New here - 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.

sean123

Member
Relationship to Diabetes
Type 3c
Hi 🙂

I'm new here, so hello from me. I'm just back from my diabetes clinic and honestly I think I just need a space to vent - a space where maybe people will understand and very remotely possibly be able to help, though I don't expect this.

My story as short as I can, diagnosed diabetic type 3c in November 2019, when I was hospitalised with Pancreatitis, in hospital for 2 weeks, they initially thought alcohol caused it, but it didn't. It was a magic storm of alcohol, kidney stones and a very rare side effect to a medication. During the hospital stay they were treating me for DKA, it was an interesting time - later found out I could have died from the 2 separate things, pancreatitis and DKA. Fun!

Anyway, no more drinking the Dr's say - wasn't an alcoholic so was fairly easy, although I do have the odd dreams of being on a night out in a club still haha.

Before Nov 19 I was fairly active, played football 3/4 times a week and did a boxing/hiit class once a week too. A month after leaving hospital I went back to football, felt light as a feather, was happy! 2nd game a week later I had to cut short because my back seized up, which was a new problem. Took 2 weeks off, then tried to play again and the same thing happened. Then the pandemic kicked off and football was cancelled, I thought great some time for my random back problem to heal.

Was going on walks early days in the lock downs, as many did, then one day 5 minutes into a walk my back seized up. I sat down for a few minutes and the pain went away, walked home. Then same a few days later. Then randomly the pain started happening in the middle of the night. I ask my GP to refer me to physio, she did, eventually I got a physio appointment and he looks at my back, asks for a recent history and decides its 'mechanical' based on being off my feet for a few weeks in the Nov/Dec 19 period. Gives me a set of 10 stretches/exercises to do, I said how often and he says as often as you can manage.
I do it every day, sometimes twice a day if I know I'm going out, thinking it'll help.
5 months into the physio the back pain is all the time, day and night, whether I'm resting or not. So I stopped as I knew I was due a phone call from the physio a week later. He duly calls and I explained I had to stop because it was making things worse, he says to keep going there's nothing else he can suggest. I stopped speaking to the physio. Currently back hurts if walking for 5 minutes plus, so its being managed basically by not exercising. Can't drink, can't exercise, and have to eat a certain way now. All good.

Since Nov 19 I have gained 3 and a half stone or 22kgs. In this time I've had a dietician talking me through what to eat, I was tracking calories, at one point was on 1800 a day, which should be ~500 a day deficit, which would equal a 1lb a week weight loss. But I was gaining weight.

I seem to have peaked at a certain weight now.

In clinic today I was asking questions to the Dr, one of which being why can't I lose weight? These days I average 2000 cals a day, so should be losing some weight. I did a food diary, tracked my calories - the deficit is real (I know some people may think I'm actually not in a deficit, but I am! 🙂)

He said because I'm type 3C, ie - damage to pancreas diabetes, that my pancreas sort of works and sort of doesn't - where it doesn't is in producing insulin, where it does is in producing glucose (I think, it was a lot of info I may not be 100% accurate) and somehow as a result my body stores fat, instead of burning it, effectively he said I could be in a massive calorie deficit and still not lose any weight. The kicker is, because my sugars are high, they may increase my insulin (trying a different one first) which will cause more weight gain.

Can't drink, can't exercise, can't lose weight.

I take it in my stride usually, I take the approach of "I can't control it, so accept it and make the most out of what I can do"
But sometimes, like today, I just wonder what's the point.

Anyway, I hope you're all doing as well as can.

Vent over.

Sean
 
Hi Inka, thank you, and hello fellow 3c'ers. I am on Fiasp before food and until today was on Levimir overnight but from today we're now trying Tresiba instead of the Levimir.
 
Hi Inka, thank you, and hello fellow 3c'ers. I am on Fiasp before food and until today was on Levimir overnight but from today we're now trying Tresiba instead of the Levimir.
Hi Sean

Welcome to the forum that no one wants to need to join. Now you are here I am sure that you will find the wealth of experience great to draw on.

Out of interest what prompted the change from Levemir to Teresita. Was it to tackle a specific issue?
How are you finding FIASP?
I look forward to hearing more from you.
 
Hi Sean

Welcome to the forum that no one wants to need to join. Now you are here I am sure that you will find the wealth of experience great to draw on.

Out of interest what prompted the change from Levemir to Teresita. Was it to tackle a specific issue?
How are you finding FIASP?
I look forward to hearing more from you.
Hi. Thanks, yeah its really its the forum you don't want to be in, but alas, here we are!
The change to Tresiba was because my Dr thinks the Leveimir overnight isn't lasting long, so by the time I eat lunch and evening meal the blood sugar levels are too high with the Fiasp not being as effective as it should.
Blood sugars after lunch go to 20+ and evening meal to about 15.
Today though, first day on Tresiba, haven't gone above 15 even with a bit of a treat lunch! So it looks promising.

Sugars used to be lower last year, have been very healthy this year and they've remained above 10. Work in progress.
 
Aaargh - Levemir was not ever intended to be taken once a day - and I'd already noticed you said you only used it at night - so I'm not whatsoever surprised it didn't last 24 hours for you. Shame that not all endocrinologists know that. When the Tresiba does work, he'll be congratulating himself for being clever ..... NOT.

But anyway - hope it really does work well for you.

I can't just remember now exactly when Creon is necessary - not actually having had any other problem with my pancreas other than my immune system deciding to murder my Beta cells :D
 
Aaargh - Levemir was not ever intended to be taken once a day - and I'd already noticed you said you only used it at night - so I'm not whatsoever surprised it didn't last 24 hours for you. Shame that not all endocrinologists know that. When the Tresiba does work, he'll be congratulating himself for being clever ..... NOT.

But anyway - hope it really does work well for you.

I can't just remember now exactly when Creon is necessary - not actually having had any other problem with my pancreas other than my immune system deciding to murder my Beta cells :D
If it works I'm not too fussed if he congratulates himself or not haha, the resulting reduced numbers is all that matters.

Immune system murdering beta cells sounds awful 😳
 
It can't have been that bad for them - no screams were heard! :D It's only after they've popped their clogs anyone ever gets to know about it.
 
Hi Sean,
I'm not ideally placed to reply just now having just had emergency surgery to clear a blocked abdomen (probably (hopefully)) from a hardening bit of scar tissue from 2.5 yrs ago, snagging my colon.

Anway: Creon capsules are prescribed to replace the digestive enzymes that can be a consequence of Pancreatitis or T3c in general. The medical term for this is Pancreatic Enzyme Replacement Therapy [PERT]. One's pancreas does a lot of unique things, including when activated by your taste buds it gets busy telling the stomach to wake up, get ready, food is coming ... I have no pancreas so I have to take CREON with all food, even with a milky coffee.

About Tresiba: this is a very long lasting insulin, with a very steady release profile lasting some 40 hrs. So my 9.5 units daily means there is still residual insulin "on board" after 24 hrs. So it's described as 'inflexible' but I prefer to see that as totally dependable! My current 12 days in hospital has reconfirmed that to me; regardless of what else has been going on my basal has kept me 'ticking along' and I've just used my NovoRapid bolus to provide adjustments when necessary. Managing Tresiba is often described as piloting an ocean going container ship, that needs you to adjust the course you're steering up to 3 days in advance! Despite this limitation I find it works really well for me. I simply didn't get the same feeling with Levermir, 2x daily. Perhaps if this had all been explained early on things might have been different.
So expect a settling down period, to get you're basal dose optimised, then enjoy the benefits! You probably already know that your basal or background insulin is intended to cover your insulin needs outside of meal times. I've found, by testing, trial and error, that getting my basal optimised for while asleep keeps me very steady in the night. I then just have to be vigilant during the day and respond with bolus or carbs.

Do you have Libre 2?
 
Hi @seanmartin and welcome from another Type 3c caused by pancreatitis.
 
He said because I'm type 3C, ie - damage to pancreas diabetes, that my pancreas sort of works and sort of doesn't - where it doesn't is in producing insulin, where it does is in producing glucose

hi there, so sorry your feeling this way. I find it helps if you say to yourself that right now things are out of your control but at some point in the future things will fall into place and you will feel better.

About the above comment from the doctor, I’m not disputing it at all, I just I always thought the glucose came from your liver? Maybe someone much more educated that I will know the answer to that one.
 
Hi Sean,
I'm not ideally placed to reply just now having just had emergency surgery to clear a blocked abdomen (probably (hopefully)) from a hardening bit of scar tissue from 2.5 yrs ago, snagging my colon.

Anway: Creon capsules are prescribed to replace the digestive enzymes that can be a consequence of Pancreatitis or T3c in general. The medical term for this is Pancreatic Enzyme Replacement Therapy [PERT]. One's pancreas does a lot of unique things, including when activated by your taste buds it gets busy telling the stomach to wake up, get ready, food is coming ... I have no pancreas so I have to take CREON with all food, even with a milky coffee.

About Tresiba: this is a very long lasting insulin, with a very steady release profile lasting some 40 hrs. So my 9.5 units daily means there is still residual insulin "on board" after 24 hrs. So it's described as 'inflexible' but I prefer to see that as totally dependable! My current 12 days in hospital has reconfirmed that to me; regardless of what else has been going on my basal has kept me 'ticking along' and I've just used my NovoRapid bolus to provide adjustments when necessary. Managing Tresiba is often described as piloting an ocean going container ship, that needs you to adjust the course you're steering up to 3 days in advance! Despite this limitation I find it works really well for me. I simply didn't get the same feeling with Levermir, 2x daily. Perhaps if this had all been explained early on things might have been different.
So expect a settling down period, to get you're basal dose optimised, then enjoy the benefits! You probably already know that your basal or background insulin is intended to cover your insulin needs outside of meal times. I've found, by testing, trial and error, that getting my basal optimised for while asleep keeps me very steady in the night. I then just have to be vigilant during the day and respond with bolus or carbs.

Do you have Libre 2?
Hi, thank you - that's very useful.

Yes I have a Libre 2, have had it for 2 months now its been really easy to get used to
 
He said because I'm type 3C, ie - damage to pancreas diabetes, that my pancreas sort of works and sort of doesn't - where it doesn't is in producing insulin, where it does is in producing glucose

hi there, so sorry your feeling this way. I find it helps if you say to yourself that right now things are out of your control but at some point in the future things will fall into place and you will feel better.

About the above comment from the doctor, I’m not disputing it at all, I just I always thought the glucose came from your liver? Maybe someone much more educated that I will know the answer to that one.
Thank you.
A quick google says you are correct, it was a lot of information to take in from the Dr so some of what I remembered may be wrong - wasn't writing it down 🙂
 
Lol thank goodness for that…. The last thing I need is another sugar leaking organ !!!
 
Welcome to the forum @seanmartin

Glad you have found us 🙂
 
Hi Sean

Sorry you had to join us.

Just found out I am Type 3c also.
First GP said Type 2 then realised something was amiss so changed to Type 1.5 but then decided they should call it Type 1 but all along a nasty little lesion in my pancreas (IPMN) was growing and restricting my pancreatic function and causing pancreatitis (thankfully pain free) so now Type 3c. Was started on insulin in Dec 2021, finally after months of begging, I was started on Creon last month and I am now due to have part or all my pancreas removed in May 22. Having lost weight for 6 months due to pancreatic exocrine insufficiency I am now told I have to bulk up for surgery because I will be unable to eat post op and will take several months to recover so will lose further weight....you can't make it up can you?! Hopefully they will find a benign cyst and remove it then I will be able to live for many more years. If not benign then.......

Rant over.
Chris
 
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There are some things which are a complete mystery to me. My other half's mother, 45 years ago had acute pancreatitis, had some surgery (exactly what we are not sure) was told she nearly died, and has survived to the ripe old age of 97 with no medication. All she now takes is blood pressure medication.
 
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