Type 3c and eating wrong!

[TheIceQueen2012]

Heya DemonBat.
Like you, I am also type 3c and have been since Aug 2021. My blood sugar levels are in general really good. If you're going to eat ready meals, you need to try and make sure they are both low in sugar and low in fat. I'm guessing that you take Creon when you eat anything? If not, as far as I know, it's something you need. A lot of foods have a traffic light system on the ingredients. As long as the meal is either green for both sugar and fat, or yellow for one and green for the other, that's all good. At a push you could have one that has yellow colour for both, but don't eat something with yellow for both 2 days in a row. If I can be of any help, please feel free to message me.

 

[DemonBat]

Heya DemonBat.
Like you, I am also type 3c and have been since Aug 2021. My blood sugar levels are in general really good. If you're going to eat ready meals, you need to try and make sure they are both low in sugar and low in fat. I'm guessing that you take Creon when you eat anything? If not, as far as I know, it's something you need. A lot of foods have a traffic light system on the ingredients. As long as the meal is either green for both sugar and fat, or yellow for one and green for the other, that's all good. At a push you could have one that has yellow colour for both, but don't eat something with yellow for both 2 days in a row. If I can be of any help, please feel free to message me.

Hi ya,

No, I don’t take Creon. I’ve refused to.
It’s extremely rare that I eat ready meals and it’s extremely rare I cook something to eat. I eat cakes, biscuits, chocolate, sweets etc. I only drink Relentless, which is an energy drink.
The bloke I see at the hospital, he is lovely, but he doesn’t do much. I can’t find someone to talk to. I’m having a diabetic burn out if I’m honest with you. I’m giving up with it all. From January 1st 2024 there’s only been 15 times that my sugar levels have been in the “green”, in the correct level. The rest of the time it’s been in the red… High sugar levels. I’ve got a lot of readings that actually say “HI”!
I’m giving up as I need help, don’t know where to get help, people I’ve spoken to haven’t been helpful. I just wonder what the point anymore.

 

[NellH]

Hi @DemonBat i know it’s so difficult and to think it’s not worth bothering. It’s so easy to reach for the convenience foods just to stop us feeling hungry. I’m in a similar situation as I’m on my own now and can’t be bothered sometime. My daughter lives on her own and she batch cooks on a Sunday afternoon so she has something to eat when she gets home from work. I’m doing a similar thing now but with low carb. I’ve recently started roasting joints of meat; chicken, pork, lamb, so I can have a portion with salad or roast cauliflower, green beans, broccoli or just on its own. I don’t mind having the same thing for a few nights on the trot. I’ve just found a recipe for tuna melts - can of tuna drained, 1/4 cup of grated cheese, 1 egg. Mix everything together, divide into 4 patties and fry in butter on each side until slighty crisp. Give it a go. Also I’ve got rid of all ‘bad’ food from my fridge and cupboards so I’m not tempted.

Hi carbs (Carbs, are found in foods like bread, rice, pasta, fruits, vegetables, and sweets) turn into sugar so try and limit them. The problem is sugar is known to be addictive. You could try substituting for Greek yoghurt, cheese, nuts, hard boiled eggs, meat, berries, If you’ve indulged in carbs then go do some exercise or go for a walk, straight afterwards… this will bring your numbers down. Good luck.

 

[Cumbrianjudith]

There are people on this forum Demonbat who could help, but I am not sure you are in the frame of mind to welcome it as you still seem to be eating only cake, energy drinks etc that you were over 2 months ago. I have been type 3c ( don’t think 3c was a drop-down option when I joined this site) for over 10 years following sepsis/ acute pancreatitis, and lost 3 stones soon after without trying. Until very recently I was completely treated as though a type 2, and never offered creon. I have had a Libre 2 continuous blood glucose monitor since Jan., which I presume you too also use since you refer to being ‘in the red/high ‘hi’’, can you start helping yourself by using this information better? I am slowly learning what foods/ drinks affect blood glucose more than others, and how order or combinations of eating makes BG change. For eg Crisps have no affect, but white flour and sugar in cake etc sends my BG vertical and very high, but also near vertical decline in a spike. I was told by my diabetic nurses that I could eat cake etc whenever I like, but just had to adjust the short dose insulin dose beforehand, but the shock of seeing what a coffee Victoria sponge did to my BG has largely put me off that type of eating. Some foods, with no/ few carbs like nuts or cheese ( might not suit your guts, but might be worth a try) act like a ‘buffer’, keeping me full, without BG spikes. Is there nothing unsweet or unprocessed you could try eating, and seeing how the Libre monitor reacts over the following few hours, as a starter to improve your BG hypers? I have incidentally been an intermittent faster 5x a week (fast for 16 hours a day) for a year…that sent the diabetic nurses rather anxious for a while!

 

[NellH]

Ps Autoantbodies testing will determine if you are type 1 or type 2. Worth checking if you don’t know. I’m type 1 but not requiring insulin injections and I take 250 mg of Metformin daily. I try and stick to a healthy low carb diet and go for a short walk after meals to keep those pesky numbers down. If I go for longer walks my numbers can get dangerously low so always have some glucose with me.

 

[novorapid24]

Hi, just over 12 months ago I was told I was diabetic. The diabetic nurse tried to tell me I was T2 but when I told her I knew I was T3c, the reply came back “there isn’t such a thing as T3c” !!! Anyway, I am T3c but I just can’t stop eating biscuits, cakes, ice cream, sweets, frozen desserts etc and the only thing I drink is Relentless (energy drink) it’s very rare my glucose levels are below 13 mmol/L
My HbA1c level is high at around 9.7% or 83 mmol/mol.
I’ve not had anyone talk to me about food, as in a diabetic dietitian. The man I see every 3 months about my diabetes, tells me to come on here and look at some of the recipes. Problem is, I live alone and can’t see the point cooking for one, I’m a very fussy eater and I suffer with severe depression. I find it hard to look after myself day to day as it is without cooking. I’ve read that people say eat nuts… I don’t like them. Avocado… Don’t like them …. I just don’t know what to do other than to give up and just carry on as I am!! While I’m typing this, my glucose level is 17.9 mmol/L
Has anyone got any suggestions please?? I’d really appreciate it. Thanks x

Snack on pumpkin seeds,cottage cheese crackers,red grapes,high protein / low carb,(under 35 g per day, Brown rice! Wholegrain/ brown bread not white, omega 3 fats,fish, salmon etc .lots of different suitable diets and recipes,lots of sugar free substitute also

 

[DemonBat]

Snack on pumpkin seeds,cottage cheese crackers,red grapes,high protein / low carb,(under 35 g per day, Brown rice! Wholegrain/ brown bread not white, omega 3 fats,fish, salmon etc .lots of different suitable diets and recipes,lots of sugar free substitute also

I don’t eat anything at all that comes out the sea, so fish or anything that contains fish is out. I can’t eat brown bread, brown rice or wholegrain food.
At the moment, I’m eating Oat so simple made with whole milk and I put golden syrup in and on it. I still eat cakes, biscuits, sweets etc and drink energy drinks. But I’ve now got the Omnipod Dash, which I’ve been using for a couple of weeks and I find it much better and easier as I haven’t got to inject 6-8 times a day.

 

[EllieM]

But I’ve now got the Omnipod Dash, which I’ve been using for a couple of weeks and I find it much better and easier as I haven’t got to inject 6-8 times a day.

That sounds good, I've always thought that many T3c folk are particularly suited to treatment by insulin pump. How are you finding your blood sugars? Are they coming down? And hopefully the Dash is preventing you from getting too many hypos?

 

[DemonBat]

That sounds good, I've always thought that many T3c folk are particularly suited to treatment by insulin pump. How are you finding your blood sugars? Are they coming down? And hopefully the Dash is preventing you from getting too many hypos?

I’ve found it much easier than giving myself injections. Even in the short time of using the pump, my sugars have come down, so much so that most of the time I’m in the green and I’ve not had 1 hypo. I think the Dash works out what insulin I’ve had when and adjusts it accordingly. I’ve been very pleasantly surprised by the pump.

 

[JJ2026]

In my opinion they should have given you a correction ratio eg 1 unit of insulin brings you down by 3mmol/L

That was my experience until 2 weeks ago and now it's not reducing my blood sugars at all. I have started on a new pen and the same. I can't understand it. I have spoken to 2 diabetic nurses and all they say is this is the amount it goes down to, not the fact that I am informing them that it is no longer working.

 

[DemonBat]

That was my experience until 2 weeks ago and now it's not reducing my blood sugars at all. I have started on a new pen and the same. I can't understand it. I have spoken to 2 diabetic nurses and all they say is this is the amount it goes down to, not the fact that I am informing them that it is no longer working.

Hi,
I see a specialist, due to the fact I wasn’t, and I’m still not, bothered about my diabetes. I get really p’d off that no medical place, G.P’s, hospitals etc, recognise my type of diabetes. They usually put me down as type1 but occasionally type 2. I’m actually type 3c, which is more dangerous, one reason being, there is a high chance, people with T3c will get pancreatic cancer. A lot of people who have been told they are T2, may actually find they are T3c!
Anyway, my diabetes specialist has now put me on the Omnipod 5. It automatically gives me insulin, although I should give myself some before I eat, I don’t. I leave it and then tell the pdm to use the sensor to give me the amount of insulin needed. It’s not the best idea because it will give you a higher HbA1c than if it was controlled properly, but since I’ve been using the Omnipod 5, my HbA1c level has dropped from 105 to 85! My diabetic specialist is no longer “pulling his hair out” with me now!

Edited by a moderator to conform with forum rules on giving medical advice

 

[JJ2026]

I’m actually type 3c, which is more dangerous, one reason being, there is a high chance, people with T3c will get pancreatic cancer.

I did not know about this and what you have written has added an extra layer of worry to what is currently happening to me. I have been told that from my CT scans, there is nothing to suggest tumours in my pancreas and my bloods are all good. The thought then, that this could lead to PC, is awful.

My experience of the NHS where I live, has been appalling. There is more than adequate funding. I am just met with ignorance where Type 3c is concerned. I'm glad you are finally getting proper treatment.

 

[DemonBat]

I did not know about this and what you have written has added an extra layer of worry to what is currently happening to me. I have been told that from my CT scans, there is nothing to suggest tumours in my pancreas and my bloods are all good. The thought then, that this could lead to PC, is awful.

My experience of the NHS where I live, has been appalling. There is more than adequate funding. I am just met with ignorance where Type 3c is concerned. I'm glad you are finally getting proper treatment.

Have you ever had pancreatitis or some sort of damage to your pancreas? As far as your experience with the NHS where you live, you can ask to go to another hospital. You don’t have to have treatment at your local hospital, clinic etc. Where, may I ask, do you live, as in area?
When I first saw a diabetic nurse, the 1st person I’d spoken to about having diabetes, at my doctors surgery, she told me I was a T2, when I informed her I wasn’t, she asked me what type I thought was. When I told her I was a T3c (which, I’d worked out on my own) her reply was there wasn’t a T3c! So I got it up on my phone, showed it to her while saying, “isn’t there?” Then said if she doesn’t know the types of diabetes, she shouldn’t be a diabetic nurse. I informed her I wouldn’t be seeing anyone about my diabetes at the doctors surgery again, and walked out! I had several phone calls because I was newly diagnosed, but I told them the same thing. I wasn’t interested as people don’t know or understand my type of diabetes. In the end, I spoke to my doctor about it, and he sorted out seeing the guy I do now. He is lovely, he has time for me, he’s doing his best for me even though I don’t care about my diabetes. When I’m really depressed ( I suffer severe depression, anxiety and panic attacks) I WhatsApp him and tell him he can have the Omnipod back. He will send a message back to me, then leave it. He knows, eventually I’ll message him back and apologise. Then I carry on as usual. He has got the patience of a Saint! I hope you find someone like this.

 

[JJ2026]

Have you ever had pancreatitis or some sort of damage to your pancreas?

Yes, acute pancreatitis caused by gallstones. I am having another CT scan tomorrow, with a view to removing my gallbladder in August. The acute pancreatitis is what led to the diagnosis of Type 3c Diabetes.

Then said if she doesn’t know the types of diabetes, she shouldn’t be a diabetic nurse.

I felt that way yesterday when the diabetic nurse at my doctor's surgery, dismissed everything I had said and told me that crazy fluctuations don't occur with 'well managed' diabetes and that she had only read 'a bit' about Type 3c that day and that she had never heard of it before. If she is a diabetic specialist, why hasn't she heard of the various different types?

 

[DemonBat]

Yes, acute pancreatitis caused by gallstones. I am having another CT scan tomorrow, with a view to removing my gallbladder in August. The acute pancreatitis is what led to the diagnosis of Type 3c Diabetes.


I felt that way yesterday when the diabetic nurse at my doctor's surgery, dismissed everything I had said and told me that crazy fluctuations don't occur with 'well managed' diabetes and that she had only read 'a bit' about Type 3c that day and that she had never heard of it before. If she is a diabetic specialist, why hasn't she heard of the various different types?

Have you had a CA 19-9 blood test at all?

Edited by moderator to conform with forum rules

 

[Lakeslover]

Hi,
I’m actually type 3c, which is more dangerous, one reason being, there is a high chance, people with T3c will get pancreatic cancer.

A lot of people who have been told they are T2, may actually find they are T3c!

To conform with forum rules please can you provide references (including relevant data) from a recognised source for the two points you make above. These should be provided within 24 hours or moderators will delete the post.

 

[JJ2026]

Have you had a CA 19-9 blood test at all?

I haven't. I will ask the next time I see my consultant at the hospital.

I was notified however that there was no sign of tumours/masses on my pancreas and the blood tests that could signal that, have all come back as normal.

Quite edited by moderator to conform with forum rules

 

[DemonBat]

Type 3c (pancreatogenic) diabetes mellitus secondary to chronic pancreatitis and pancreatic cancer - PMC

Diabetes mellitus is a group of diseases defined by persistent hyperglycaemia. Type 2 diabetes, the most prevalent form, is characterised initially by impaired insulin sensitivity and subsequently by an inadequate compensatory insulin response. ...

pmc.ncbi.nlm.nih.gov

Diagnosis and risk factors in pancreatogenic diabetes - PubMed

Pancreatogenic diabetes, i.e. Type 3c Diabetes Mellitus (T3c), is a distinct clinical entity primarily caused by underlying pancreatic disorders. These include acute, chronic, or recurrent pancreatitis, traumatic pancreatitis, pancreatic surgery, cystic fibrosis and pancreatic cancer. Although...

pubmed.ncbi.nlm.nih.gov

 

[JJ2026]

My blood sugar levels are in general really good.

This is what I want. Newly diagnosed but struggling with blood sugar, every day. I have to have my gallbladder removed in August and until then I can't eat anything with fat in it (excruciating pain even just using a few squirts of the air fryer 1 kcal spray) but hoping afterwards, I start to balance out a bit more.

 

[NellH]

Hi, just over 12 months ago I was told I was diabetic. The diabetic nurse tried to tell me I was T2 but when I told her I knew I was T3c, the reply came back “there isn’t such a thing as T3c” !!! Anyway, I am T3c but I just can’t stop eating biscuits, cakes, ice cream, sweets, frozen desserts etc and the only thing I drink is Relentless (energy drink) it’s very rare my glucose levels are below 13 mmol/L
My HbA1c level is high at around 9.7% or 83 mmol/mol.
I’ve not had anyone talk to me about food, as in a diabetic dietitian. The man I see every 3 months about my diabetes, tells me to come on here and look at some of the recipes. Problem is, I live alone and can’t see the point cooking for one, I’m a very fussy eater and I suffer with severe depression. I find it hard to look after myself day to day as it is without cooking. I’ve read that people say eat nuts… I don’t like them. Avocado… Don’t like them …. I just don’t know what to do other than to give up and just carry on as I am!! While I’m typing this, my glucose level is 17.9 mmol/L
Has anyone got any suggestions please?? I’d really appreciate it. Thanks x