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Anyone with advice on type 3c/ chronic pancreatitis

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Kelly16

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Relationship to Diabetes
Type 3c
Hey 🙂
So I’ve got severe reactive hypoglycemia for years now and my pancreas a very damaged with atrophy along with fibrosis of the biliary tract and secondary liver disease which has only showed up on MRI last year. My blood sugars are all over the place. They shoot up high but within 45 mins I’m in a bad hypo. Once that’s happened I’ll be struggling for the rest of the day to keep my blood above 4. Or it will go really high and shoot back down. I’ve recently got a freestyle libra which is great when I’m working as I can now show my docs a lot easier. When I try and explain it to people I get that blank look lol. So I would really love to hear from anyone that’s got the same and how they got the right treatment, what even is the treatment?? Just any info I would greatly appreciate. Thank you so much in advance
 
Hello Kelly

I can't answer any of your questions but wanted to welcome you. I do have a friend with acute reactive hypoglycemia but he seems to have it under good control now. So there is hope ahead.
 
Hey thank you for your message, I’ve had it under control for ages but as the destruction of my pancreas worsens so are the blood sugars….. it’s a pain because it’s going to get worse no matter how good I am. Do you know why your friend has acute reactive hypoglycemia?
 
Hi @Kelly16 🙂 There are a number of people with Type 3c here @eggyg is one. As you probably know Reactive Hypoglycaemia is quite rare. Have you been offered any dietary advice? What meds are you on?
 
Heyyy
Yes I know it’s rare as my gps didn’t know what to do with my very low GTT results moving forward 3 years ago, even the diabetic nurse didn’t know what to do. So far I’ve yet to see the dietitian but I’ve read up on it lots over the years and I know for instance if I have heavy Carbs like pasta I’m ruined for the evening so I don’t tend to have anything like that anymore. No meds yet, but as they’ve(pancreas/biliary specialists) now sprung into action because of how bad my last scan was I’m hoping things will start to move quicker, my endocrine app at the hospital has been cancelled 4 times over the last 18 months so I’m well behind on that side of things. But I’d say because of the reactive hypoglycemia knocking down any high reading within 45 mins I don’t know if there’s meds for me yet hence why I’d love to find out what’s what… thank you very much for replying
 
That’s bad that you’ve not seen a dietician yet. At least that would have given you some help early on. It sounds like you’re doing ok though and working things out eg not to have too much pasta. Some hospitals have information sheets about RH. I remember seeing one online a little while ago. It was basic dietary guidelines.

If you do a Search using the button at the top right of the page, you can see mentions of pancreatitis on the forum. It’s usually a little quieter here over the weekend so that might give you a little reading in the meantime. I believe @mikeyB might have pancreas issues too, along with a number of others (sorry - I can’t remember the names).

I hope you get your hospital appointment is sorted soon. It must be frustrating for you.
 
Ahh thank you so much, luckily I’m the type to educate myself because of the rareness of my other health issues I’ve been left for years and years because I’m too young to have a lot of the things I have. So when you don’t tick all the box’s it’s left until you do. ‍♀️ Covid has got in the way but I’m sure that’s the case for a lot of people but I do manage at the moment luckily
 
Welcome to the forum @Kelly16

Sorry to hear about the complex mixture of conditions you are having to juggle :(

Does your pancreatitis involve taking creon?

Are you able to opt for a low carbohydrate approach to try to reduce your glucose rises after food?

Have you been given any medication to help?
 
Heyyyy
I am on creon, I have been for a while. That seemed to be the first thing to go. I do have a low carb diet especially when I’m at work. I find it’s easier to not eat because that always ends up with me having a bad hypo but before I get so sleepy I’ve been know to fall asleep sitting up at work. For instance my GTT after an hour was 1.7 (I don’t know how high it went as they didn’t test in between)
That’s why I’m curious as to what stage they introduce meds etc.
Thank you for the message!
 
Hi there

I am seeing my friend on Thursday so I will ask him for any details he can give me.
 
Hello @Kelly16 and welcome to the forum.
Even though I have only just started my journey down the Creon route I have found that a set dose of Creon does not work and lowering the amount of fat in my diet does help no end.

As you are on no meds would having small snacks rather than full meals help if you haven't already tried this?
 
Yeah I do that, I haven’t had proper meals for years now. I can’t even have lunch at work because I’m so busy and on my feet all day I hate that awful feeling after food. Not to mention the bigger the meal the bigger the hypo. But now things are developing in all areas I’m hopeful they’re going to start things. I was talking to someone on fb that’s now on insulin and how much better she feels. Now I’ve got the freestyle libra I can show them how all over the place my blood sugars are. I’ve been on creon for years but as I only eat cereal (I lost my appetite when I got really poorly 3 years ago) but undigested food is fun isn’t it a lot on panc peopel usually have to have way more creon than it says on the box to get any affect. You’ll find your way, at least it’s something you can play with and not worry about taking too much
 
Good thinking @Kelly16 , I`ve had pancreatitis 4 times 2 times abroad thank goodness for insurance.
Been on Creon for 4 years couldn`t survive without it, @mikeyB is the go to man and @eggyg can
advise you on taking Creon, as you say you can`t take too much but too little will as I`m sure you know
will have repercussions, find a loo damn quick. Good you have the FSL 2 won`t be long before its my
turn, you need to speak with a Dieticion now 1.7 is extremely low but I have been there and still struggle
with hypos but it won`t beat me. Its my Diabetes and I will control it rather than it control me, take care
stay safe.
 
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