New type 1-like diabetic.

[StephenMackie]

Hi all,

Stephen here, I'm 31 and just been diagnosed with type 1 (kind of) diabetes.

So long story short I had gallstones which absolutely destroyed my pancreas and put me in hospital for 6 months in 2018. This lead to my pancreas not producing enough or no insulin so now i have been diagnosed me with similar to type 1 diabetes just last week.

Anybody on the same boat that could give me some words of wisdom?

Thanks all.

 

[Tee G]

Hi @StephenMackie - Can't give you any advice (those who can, will be along in time, im sure about that!) ...I just wanted to say hi and welcome you to the forum. Loads to read on here, many varied topics - lovely people with years and years of experience in all manner things relating to the the disease. Im sorry you had to go through that awful time, sounds horrible. But we are glad you are with us. All the best.

 

[Northerner]

Hi Stephen, welcome to the forum 🙂 It sounds like you may have something in common with our Type 3s, who are people who have lost their insulin-producing capability due to removal or similar of their pancreas. What medication are you on? Is it just your insulin that is affected, or do you also need medication to help with digestion (the pancreas plays a dual role)?

However you have got here, there are bound to be many aspects of managing your diabetes that we all have in common, so please feel free to let us know of any questions or concerns you may have and we can draw on our collective knowledge and experience to try and help you out 🙂

 

[StephenMackie]

Hi @StephenMackie - Can't give you any advice (those who can, will be along in time, im sure about that!) ...I just wanted to say hi and welcome you to the forum. Loads to read on here, many varied topics - lovely people with years and years of experience in all manner things relating to the the disease. Im sorry you had to go through that awful time, sounds horrible. But we are glad you are with us. All the best.

Hey Tee,

Thanks for the warm welcome.

Looking forward to getting to know you all aswell as know more about all this. I'm absolutely clueless.

Glad to be here. Speak soon.

 

[StephenMackie]

Hi Stephen, welcome to the forum 🙂 It sounds like you may have something in common with our Type 3s, who are people who have lost their insulin-producing capability due to removal or similar of their pancreas. What medication are you on? Is it just your insulin that is affected, or do you also need medication to help with digestion (the pancreas plays a dual role)?

However you have got here, there are bound to be many aspects of managing your diabetes that we all have in common, so please feel free to let us know of any questions or concerns you may have and we can draw on our collective knowledge and experience to try and help you out 🙂

Hi Northerner,

Yeah my pancreas has totally failed. I'm on creon, omeprazole and thymine (about 25 tablets a day) for the past 2 years.

I'm glad m here to learn more about diabetes. As I'm absolutely clueless in the matter. Hope to get to know you all better and we can help each other out.

 

[Northerner]

Hi Northerner,

Yeah my pancreas has totally failed. I'm on creon, omeprazole and thymine (about 25 tablets a day) for the past 2 years.

I'm glad m here to learn more about diabetes. As I'm absolutely clueless in the matter. Hope to get to know you all better and we can help each other out.

This type of diabetes is more technically known as 'Type 3c', I believe. It's relatively rare compared to Type 1, which is an autoimmune disease, so many healthcare professionals are pretty unfamiliar with it, often treating people as though they were Type 2 when in fact they are nothing of the kind. We have quite a few active Type 3s here (aka the 'Creonistas' 🙂 ), so it's probably one of the best places to come for information about the more specific problems that come with your variety 🙂 What insulin are you on (if any)? How are your blood sugar levels generally? I know we had one person in a similar situation who really struggled because they were being treated as a Type 2 - eventually they were put on a basal/bolus insulin regime and now things are much better (basal insulin is a slow-acting insulin that deals with your insulin needs when you are not eating, bolus insulin is a fast(er)-acting insulin that you take in doses according to the amount of carbs in your food).

 

[StephenMackie]

This type of diabetes is more technically known as 'Type 3c', I believe. It's relatively rare compared to Type 1, which is an autoimmune disease, so many healthcare professionals are pretty unfamiliar with it, often treating people as though they were Type 2 when in fact they are nothing of the kind. We have quite a few active Type 3s here (aka the 'Creonistas' 🙂 ), so it's probably one of the best places to come for information about the more specific problems that come with your variety 🙂 What insulin are you on (if any)? How are your blood sugar levels generally? I know we had one person in a similar situation who really struggled because they were being treated as a Type 2 - eventually they were put on a basal/bolus insulin regime and now things are much better (basal insulin is a slow-acting insulin that deals with your insulin needs when you are not eating, bolus insulin is a fast(er)-acting insulin that you take in doses according to the amount of carbs in your food).

Never heard for a type 3c. Im learning new things every day. It's so much to take in, I'm struggling. Still to see the dietician which I think I should have by now. The 'Creonistas' sound like a good bunch haha. Hope to hear about their stories. And learn from them. Yeah I'm on the basal bolus. Levemir 6units and novarapid 8units. Thats the easy part it's knowing what to eat and when and how much.

 

[Tee G]

Hi again - Just a thought.. (to make things easier & then you dont have to keep repeating yourself on any future threads) If you like, you can go to your profile page, pick 'signature' - pop your meds list in there and it will show up each time you post anything. Like mine below. VVVVV Its a history/info thing for peeps to see quickly. Also if you are T3 maybe a fresh post with that 'heading', will attract those it has a common factor with? Maybe consider?

 

[eggyg]

Hi @StephenMackie from a fellow Creonista and type 3C. Mine started with gallstones way back in 2001. I’m still here after a few ops along the way. The biggie with us weirdos ( please don’t be offended, but we are rare) is that we still possibly still have some insulin floating about which pleases itself when it decides to pop out to play. Also Creon can play havoc with our BG readings. My advise is to educate yourself as much as possible about 3C as the HCPs ( health care professionals) haven’t a clue. Test a lot, that’s the only way of knowing what is going on. Be careful of food that’s too fatty, I dare say you know this already.😱 Please feel free to ask me anything, on here or PM me. But please don’t worry. I’m almost 60, I lead a very full life and I definitely don’t let it define me. Elaine.

 

[Northerner]

Never heard for a type 3c. Im learning new things every day. It's so much to take in, I'm struggling. Still to see the dietician which I think I should have by now. The 'Creonistas' sound like a good bunch haha. Hope to hear about their stories. And learn from them. Yeah I'm on the basal bolus. Levemir 6units and novarapid 8units. Thats the easy part it's knowing what to eat and when and how much.

The best approach to eating is lots of initial testing to discover how different food choices affect you personally - people can have very different responses to the same things, so it's important to know your own personal situation 🙂 Have a read of Maggie Davey's letter which will give you a good overview and strategy, and have a read of Test,Review, Adjust by Alan S to learn how to test efficiently and effectively 🙂 Obviously, as far as food choices go, you will need to also cater for the peculiarities of your own particulr brand of diabetes 🙂 The idea is really to tailor your diet to what allows you to maintain maximum flexibility in what you eat, whilst keeping good blood sugar control - my personal view is, why ditch things that you enjoy and are perfectly fine with in order to follow what may be a rigid and restrictive diet that you find difficult? Quality of life and sustainability are what matters 🙂

 

[KARNAK]

Hello @StephenMackie Welcome to the forum from another Creonista. 🙂 I have just had my Creon increased to 50000 for meals but it has made a mockery with my Basal results, I am daily getting it under control but not easy. I am T1 still have my gallbladder but as you Pancreas he say no,🙂 @eggyg is your best port of call She is our go to Creonista expert. Follow the advice you have already been given and remember it is your Diabetes so find out what works for you especially carbohydrates. @Northerner has given you good advice so have a read of the links he has provided and I`m sure you will be off to a good start, take care we are here for you.🙂

 

[eggyg]

Hello @StephenMackie Welcome to the forum from another Creonista. 🙂 I have just had my Creon increased to 50000 for meals but it has made a mockery with my Basal results, I am daily getting it under control but not easy. I am T1 still have my gallbladder but as you Pancreas he say no,🙂 @eggyg is your best port of call She is our go to Creonista expert. Follow the advice you have already been given and remember it is your Diabetes so find out what works for you especially carbohydrates. @Northerner has given you good advice so have a read of the links he has provided and I`m sure you will be off to a good start, take care we are here for you.🙂

I’m presently taking 125,000 each meal and I’m thinking of upping my breakfast dose to 150,000 as that’s the meal that bothers my stomach more than anything funnily enough. I don’t particularly think it’s the food per se but the time of day. But hey, who knows? 😉

 

[eggyg]

This is my story @StephenMackie

https://gutscharity.org.uk/advice-a.../personal-stories/2019-stories/elaine-graham/

 

[StephenMackie]

Hi again - Just a thought.. (to make things easier & then you dont have to keep repeating yourself on any future threads) If you like, you can go to your profile page, pick 'signature' - pop your meds list in there and it will show up each time you post anything. Like mine below. VVVVV Its a history/info thing for peeps to see quickly. Also if you are T3 maybe a fresh post with that 'heading', will attract those it has a common factor with? Maybe consider?

Hi again, yeah I'll do that saves some time and let's everybody know at the same time. Thank you.

 

[StephenMackie]

Hi @StephenMackie from a fellow Creonista and type 3C. Mine started with gallstones way back in 2001. I’m still here after a few ops along the way. The biggie with us weirdos ( please don’t be offended, but we are rare) is that we still possibly still have some insulin floating about which pleases itself when it decides to pop out to play. Also Creon can play havoc with our BG readings. My advise is to educate yourself as much as possible about 3C as the HCPs ( health care professionals) haven’t a clue. Test a lot, that’s the only way of knowing what is going on. Be careful of food that’s too fatty, I dare say you know this already.😱 Please feel free to ask me anything, on here or PM me. But please don’t worry. I’m almost 60, I lead a very full life and I definitely don’t let it define me. Elaine.

Hi Elaine,
No offence taken, we are our own people haha. My reading have been all over the place. I'm definitely learning more and more about diabetes every day. Getting to know myself more aswell. I'm far away from fatty foods. Been really good with what I've been eating. Proud of myself to be honest. Thank you so much for the comments I'll be having a read at your story soon. Thanks again for the help.

 

[StephenMackie]

The best approach to eating is lots of initial testing to discover how different food choices affect you personally - people can have very different responses to the same things, so it's important to know your own personal situation 🙂 Have a read of Maggie Davey's letter which will give you a good overview and strategy, and have a read of Test,Review, Adjust by Alan S to learn how to test efficiently and effectively 🙂 Obviously, as far as food choices go, you will need to also cater for the peculiarities of your own particulr brand of diabetes 🙂 The idea is really to tailor your diet to what allows you to maintain maximum flexibility in what you eat, whilst keeping good blood sugar control - my personal view is, why ditch things that you enjoy and are perfectly fine with in order to follow what may be a rigid and restrictive diet that you find difficult? Quality of life and sustainability are what matters 🙂

Yeah I've been eating different stuff each day. Pasta seems to keep me at a good blood level as long as I take a bit more insulin. Yeah I'm starting to know that this is my body and insulin and I'm different from everybody else. The next week or so I'll be testing more foods and see how I get on. Again thanks for everything, this forum is so kind and helpful.

 

[StephenMackie]

Hello @StephenMackie Welcome to the forum from another Creonista. 🙂 I have just had my Creon increased to 50000 for meals but it has made a mockery with my Basal results, I am daily getting it under control but not easy. I am T1 still have my gallbladder but as you Pancreas he say no,🙂 @eggyg is your best port of call She is our go to Creonista expert. Follow the advice you have already been given and remember it is your Diabetes so find out what works for you especially carbohydrates. @Northerner has given you good advice so have a read of the links he has provided and I`m sure you will be off to a good start, take care we are here for you.🙂

Thanks for the warm welcome.
I'm on 100,000 for meals 50,000 for snacks when I start easting snacks. Still early to know what I can actually have snack wise. Yeah Elaine seems nice and helpful I'll be reading her story. Yeah it's all about me and my body. Just need to know myself better for this life changing episode. Thank you.

 

[everydayupsanddowns]

Welcome to the forum @StephenMackie

If your diagnosis of Type 3c is confirmed you can change your ‘Relationship to diabetes‘ to Type 3c while you are adding some details to your ‘Signature’ 🙂