Newly diagnosed T1 - loss of appetite

[Frenchie0506]

Hi everyone

Due to pancreatic surgery on 6 July, I'm now a Type 1 diabetic - basically, my pancreas was removed due to a cyst. I'm waiting for the path report which hopefully will confirm/deny any cancerous cells.

Anyways, in the meantime, in addition to getting to grips with the testing and injecting insulin processes, I'm on a low fat diet which isn't the best culinary experience but have noticed that my appetite (once healthy and hearty) has significantly dropped off. My question - is this typical, have others experienced this too and did your appetite return after a while? Appreciate my insides have taken a significant 'beating' with the surgery and everything else, so hoping this is temporary. I'm also intending to speak to my consultant about this.

Any advice/sharing of experiences would be really welcome.

Thanks in advance

 

[Antje77]

Hi @Frenchie0506 , welcome to the forum.

Due to pancreatic surgery on 6 July, I'm now a Type 1 diabetic - basically, my pancreas was removed due to a cyst. I'm waiting for the path report which hopefully will confirm/deny any cancerous cells.

I hope the path report will show good things only!

It sounds like you have type 3C diabetes (damage to the pancreas, not an autoimmune issue) rather than T1. While treatment is largely the same, insulin, there are differences as well.
Us T1's have panceases which still produce glucagen to help get us out of a low blood sugar, and our pancreases also produce enzymes to help with digestion.
As far as I know people without a pancreas need to take those enzymes as well as insulin.

I don't have experience with loss of appetite after getting T1 but others may have. But it could also be something specific to having your pancreas removed.
What is the reason you are on a low fat diet? It's not the easiest way of eating for many diabetics, and as it sounds like you aren't really enjoying it you might want to find out if it's necessary.

Tagging @Tophat1900 and @Ledzeptt who know much more about T3C than I do, they'll chip in when they're around
And you might like to have a look around in this part of the forum: https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

Wish you all the best!

 

[Frenchie0506]

Hi!

Thanks so much for your response - I didn't realise that there were other types of diabetes, I thought it was T1 or T2... You're right in that I have to take enzyme replacement tablets with food (Creon) and am now on insulin as no longer have a pancreas. I'll check the Type3C out with the consultant later this week - this wasn't explained to me.

I'm on a low fat diet because I currently have a drain to remove Chyle - really hoping that this will dry up soon and can get back to a normal diet, and hopefully my appetite will return...

Many, many thanks for the link to the pancreatic diabetes info - will give that a good look!

Best wishes to you from a wet England

 

[Antje77]

Thank you!

I'll check the Type3C out with the consultant later this week - this wasn't explained to me.

I guess he/she didn't want to make things even more confusing right at the beginning. And perhaps also because if you started to inform yourself, T1 information will be as useful as T3C information for starters because getting your head wrapped around managing your blood glucose and insulin is first priority. That part is the same for T1, and there's a lot more to find on T1 than on T3C.

I'm on a low fat diet because I currently have a drain to remove Chyle - really hoping that this will dry up soon and can get back to a normal diet, and hopefully my appetite will return...

Ah, thankfully it's temporary!

Many, many thanks for the link to the pancreatic diabetes info - will give that a good look!

That part of the forum is rather quiet, T3C's being not with many and often misdiagnosed/misnamed as either T1 or T2 (some T3C's don't need insulin because they didn't have their whole pancreas removed and it's only partly damaged). So feel free to engage in any part of the forum you like, almost anything T1 will apply to your diabetes as well.

Your curiousity will be of great help in learning to manage this new and daunting change in your life, don't hesitate to start threads with questions or chip in on existing threads!

Best wishes to you too from the Netherlands, currently overcast but dry.

 

[Deleted member 527103]

If you want to know about Type 3c diabetes, I highly recommend checking out Diabetes UK and their very very friendly forum where there are a few active members with Type 3c.
They often discuss creon and the the impact on their diet rather than the low carb high fat approach common here.

 

[Frenchie0506]

Thank you!

I guess he/she didn't want to make things even more confusing right at the beginning. And perhaps also because if you started to inform yourself, T1 information will be as useful as T3C information for starters because getting your head wrapped around managing your blood glucose and insulin is first priority. That part is the same for T1, and there's a lot more to find on T1 than on T3C.

Ah, thankfully it's temporary!

That part of the forum is rather quiet, T3C's being not with many and often misdiagnosed/misnamed as either T1 or T2 (some T3C's don't need insulin because they didn't have their whole pancreas removed and it's only partly damaged). So feel free to engage in any part of the forum you like, almost anything T1 will apply to your diabetes as well.

Your curiousity will be of great help in learning to manage this new and daunting change in your life, don't hesitate to start threads with questions or chip in on existing threads!

Best wishes to you too from the Netherlands, currently overcast but dry.

Thank you@Antje77 for the info and support. It’s a really daunting time but how fortunate that there’s so much online support from people like you - you’ve made my day by supplying this info and helping me to feel less isolated about coping.
Best wishes

 

[Antje77]

If you want to know about Type 3c diabetes, I highly recommend checking out Diabetes UK and their very very friendly forum where there are a few active members with Type 3c.
They often discuss creon and the the impact on their diet rather than the low carb high fat approach common here.

I heartily agree with using every source of information, and if there's a livelier community of T3C's on Diabetes UK than here, all the better to join there as well!

However, the low carb high fat approach often talked about on this forum is one mainly adopted by T2's, and there are a lot more T2's on this forum than T1's or T3C's.
While lowering carbs can be useful for diabetics who are not producing their own insulin, it's definitely not something which is commonly adviced on this forum, especially not to newly diagnosed members.

In your case, @Frenchie0506 , it would even be impossible due to your current low fat diet, and because you're likely on fixed doses of insulin at the moment.
No need to fear you'll be told to go low carb on this forum! Just remember to check what type is being talked about when reading threads

@In Response , it might be useful if you could post a link to one of those active threads on T3C on the other forum instead of linking their home page, it's not easy to find your way on any forum when you're new!

 

[Frenchie0506]

Another amazingly useful response, thank you! I’ll check the Type 3C threads/forums out - it’s (sort of!) good to know about others’ experiences.

Best wishes

 

[Andydragon]

Another amazingly useful response, thank you! I’ll check the Type 3C threads/forums out - it’s (sort of!) good to know about others’ experiences.

Best wishes

It's good to have the choice but also the knowledge that different conditions are different even though named diabetes. But how they are treated can have similarities but do differ in important ways. (As discussed above, dietary advice is a real difference)

Good luck on your path