Any Type 3C people out there?

[NellH]

I was diagnosed as type 1 in 2022 and at the time was found to have a NET which caused Atrophy. I’m being monitored yearly and currently taking Metformin and insulin when needed. I’m trying to maintain a low carb diet which I believe helps me regulate my blood sugar. My research found When a pancreatic neuroendocrine tumor (NET) has damaged the pancreas to the extent that a person is diagnosed with diabetes, the pancreas may exhibit several notable changes:

1. **Visible Tumor Mass:**
- The presence of a tumor or multiple tumors within the pancreas. These can vary in size and appearance, often visible as distinct masses on imaging studies such as CT scans, MRIs, or ultrasounds.

2. **Atrophy or Shrinkage:**
- The pancreas or parts of it may become atrophied (shrunken) due to damage from the tumor, reducing the number of functioning insulin-producing cells.

3. **Fibrosis and Scarring:**
- Areas of fibrosis (scarring) where normal pancreatic tissue has been replaced by scar tissue as a result of chronic inflammation and tumor growth.

4. **Changes in Texture and Density:**
- The texture and density of the pancreatic tissue might be altered, appearing more heterogeneous (mixed) on imaging due to the combination of normal, fibrotic, and tumorous tissues.

5. **Loss of Insulin-Producing Cells:**
- Histological examination (microscopic analysis of tissue samples) would show a reduction in the number of insulin-producing beta cells in the islets of Langerhans.

6. **Altered Blood Supply:**
- Changes in the vascular structure, such as reduced or disrupted blood flow to parts of the pancreas due to tumor growth and associated inflammation.

7. **Calcifications:**
- In some cases, there may be calcifications within the pancreas, which are small, hardened areas of tissue that can occur in response to chronic inflammation or damage.

On imaging studies, these changes might be noted by radiologists and pathologists who interpret the scans and biopsy results. The appearance of the pancreas on these studies, along with clinical and laboratory findings, helps in diagnosing the extent of damage and the presence of diabetes. I’m due for a follow up appointment to check on the latest MRI.

 

[Pam*]

I was diagnosed as type 1 in 2022 and at the time was found to have a NET which caused Atrophy. I’m being monitored yearly and currently taking Metformin and insulin when needed. I’m trying to maintain a low carb diet which I believe helps me regulate my blood sugar. My research found When a pancreatic neuroendocrine tumor (NET) has damaged the pancreas to the extent that a person is diagnosed with diabetes, the pancreas may exhibit several notable changes:

1. **Visible Tumor Mass:**
- The presence of a tumor or multiple tumors within the pancreas. These can vary in size and appearance, often visible as distinct masses on imaging studies such as CT scans, MRIs, or ultrasounds.

2. **Atrophy or Shrinkage:**
- The pancreas or parts of it may become atrophied (shrunken) due to damage from the tumor, reducing the number of functioning insulin-producing cells.

3. **Fibrosis and Scarring:**
- Areas of fibrosis (scarring) where normal pancreatic tissue has been replaced by scar tissue as a result of chronic inflammation and tumor growth.

4. **Changes in Texture and Density:**
- The texture and density of the pancreatic tissue might be altered, appearing more heterogeneous (mixed) on imaging due to the combination of normal, fibrotic, and tumorous tissues.

5. **Loss of Insulin-Producing Cells:**
- Histological examination (microscopic analysis of tissue samples) would show a reduction in the number of insulin-producing beta cells in the islets of Langerhans.

6. **Altered Blood Supply:**
- Changes in the vascular structure, such as reduced or disrupted blood flow to parts of the pancreas due to tumor growth and associated inflammation.

7. **Calcifications:**
- In some cases, there may be calcifications within the pancreas, which are small, hardened areas of tissue that can occur in response to chronic inflammation or damage.

On imaging studies, these changes might be noted by radiologists and pathologists who interpret the scans and biopsy results. The appearance of the pancreas on these studies, along with clinical and laboratory findings, helps in diagnosing the extent of damage and the presence of diabetes. I’m due for a follow up appointment to check on the latest MRI.

Hi NellH. I have similar to you. My pancreas was atrophied due to a pancreatic NET. I was refered to Kings in London, a centre of excellence that specialised in NETS. I had surgery 2 years ago. They removed all my pancreas, spleen, duodenum and gall bladder and resected my portal vein due to a blockage. I also had 35 lymph nodes removed. Major surgery but I am doing pretty well. I am of course now diabetic, type 3c and have 4 to 6 insulin injections a day. I also take Creon, a pancreatic enyme. Now I just have a scan every 6 months. I wish you well.

 

[Kaydee59]

I had my pancreas and spleen removed in 2021 due to 2 NETS causing atrophy to the pancreas (had been diagnosed as Type 2 diabetic 10 years before the tumours were discovered. Am on insulin , metformin and empagliflozin. I also take Creon and antibiotic as without the spleen, I have a compromised immune system. I find if I follow a keto diet, I only need to take my basal insulin at night and don’t need injections with my meals. I too have 6 monthly scans and a Dotate scan once a year.

 

[Pam*]

I had my pancreas and spleen removed in 2021 due to 2 NETS causing atrophy to the pancreas (had been diagnosed as Type 2 diabetic 10 years before the tumours were discovered. Am on insulin , metformin and empagliflozin. I also take Creon and antibiotic as without the spleen, I have a compromised immune system. I find if I follow a keto diet, I only need to take my basal insulin at night and don’t need injections with my meals. I too have 6 monthly scans and a Dotate scan once a year.

Our stories sound similar. I had a dotatate scan a month before surgery to see if it had spread. Apart from the pancreas it was in 3 lymph nodes, thats probably why they removed so many. I haven't had a dotatate since then and just have a CT scan with contrast every 6 months at my local hospital. I'm also on an antibiotic twice a day due to having no spleen. Are you having any problem getting Creon? I've just managed to get my last prescription of 5 cartons of the 25000 Creon. The shortage is quite frightening though and most months now I have a problem getting them. Well done being on the keto diet. Not sure I could stick to it but I do try and cut down on carbs. I have the Libre 2 glucose sensor but keep asking my diabetic team for a tubeless pump.... no luck yet.

 

[novorapid24]

Hi everyone, i am Type 3c due to acute pancreatitis and then cysts on my pancreas which wiped out my pancreas in 2019. Now i am insulin dependent and also take creon with all meals. Just wondered if there is anyone else on this forum with similar condition.

Chronic pancreatitis for 12 years then diabetes for last 2,also Creon with everything yes,and I'm only 44

 

[Kaydee59]

Our stories sound similar. I had a dotatate scan a month before surgery to see if it had spread. Apart from the pancreas it was in 3 lymph nodes, thats probably why they removed so many. I haven't had a dotatate since then and just have a CT scan with contrast every 6 months at my local hospital. I'm also on an antibiotic twice a day due to having no spleen. Are you having any problem getting Creon? I've just managed to get my last prescription of 5 cartons of the 25000 Creon. The shortage is quite frightening though and most months now I have a problem getting them. Well done being on the keto diet. Not sure I could stick to it but I do try and cut down on carbs. I have the Libre 2 glucose sensor but keep asking my diabetic team for a tubeless pump.... no luck yet.

Sorry Pam, only just saw your reply now. I haven’t had a dototate scan for a year and a half so requested one for this 6 month scan as I was originally told I would have 1 every year, and CT scan in between. Anyway, they agreed to do the dototate so I am off to London on Tuesday to have it done. Reason I am keen on having a regular dototate scan is that when I had the first one, it picked up a second smaller NET in my pancreas.
i have been lucky with getting Creon (just got 6 packs of Creon today), although I was worried with the last prescription when I had to go to a couple of pharmacies before I got it. Scary though at the thought of not getting it because the stomach cramps can be pretty severe when I have forgotten my Creon.
Definitely would hate to be without my Libre 2 sensor, although I am trying to push for the Libre 3. It is much smaller and hope more accurate. Told by another diabetic she just asked her GP. My GP practice says I have to go through my specialist centre, so am working on that at the moment.
good luck with getting your tubeless pump

 

[Pam*]

Sorry Pam, only just saw your reply now. I haven’t had a dototate scan for a year and a half so requested one for this 6 month scan as I was originally told I would have 1 every year, and CT scan in between. Anyway, they agreed to do the dototate so I am off to London on Tuesday to have it done. Reason I am keen on having a regular dototate scan is that when I had the first one, it picked up a second smaller NET in my pancreas.
i have been lucky with getting Creon (just got 6 packs of Creon today), although I was worried with the last prescription when I had to go to a couple of pharmacies before I got it. Scary though at the thought of not getting it because the stomach cramps can be pretty severe when I have forgotten my Creon.
Definitely would hate to be without my Libre 2 sensor, although I am trying to push for the Libre 3. It is much smaller and hope more accurate. Told by another diabetic she just asked her GP. My GP practice says I have to go through my specialist centre, so am working on that at the moment.
good luck with getting your tubeless pump

Good luck with your dotatate. Are you having it at Guys? I had mine there but am under Kings for the PNET. I live on the south coast so it was quite a treck to get up there, luckily I have my CT scans done locally in Hastings and results are sent to Kings.
I thought you had all your pancreas removed.
I may change my mind about wanting to get an insulin pump. Im going off the idea of having something else constantly attached to my body and I think they need filling and changing often. Like you though I wouldn't mind trying the Libre 3. At least if I go out for a meal or on holiday I just need to carry an insulin pen and Creon in my bag.

 

[Kaydee59]

Good luck with your dotatate. Are you having it at Guys? I had mine there but am under Kings for the PNET. I live on the south coast so it was quite a treck to get up there, luckily I have my CT scans done locally in Hastings and results are sent to Kings.
I thought you had all your pancreas removed.
I may change my mind about wanting to get an insulin pump. Im going off the idea of having something else constantly attached to my body and I think they need filling and changing often. Like you though I wouldn't mind trying the Libre 3. At least if I go out for a meal or on holiday I just need to carry an insulin pen and Creon in my bag.

My last dototate was done at Guys. This one is being done elsewhere in London as apparently Royal Surrey now use another place in London.
They left a small bit of the Head of the pancreas behind as it was okay and as It is attached to the liver they decided to leave well alone. They removed my spleen at the time so am now on antibiotics for life.
Like you, I too carry Insulin and Creon around with me but also have to take cholestagel with meals too as I have severe malabsorption of bile salts. For all the medication I am on, I look and am remarkably well

 

[TheIceQueen2012]

Hi, due to type3c not being well known it seems to be common that you get diagnosed with type2 when you have type3c. Type3c is related to levels of damage to the pancreas, so in my case i have no pancreas function, therefore i am insulin dependant and take Creon with meals, i have unpredictable large swings in my blood glucose levels, hyperglycaemia and hypoglycaemia, my digestions is still a work in progress. Have the doctors told you how much pancreas function you currently have? Are you monitoring your blood glucose levels? Are you taking metformin or injecting insulin?

Heya
You can only have type 3c though to my knowledge if your Diabetes has been caused from the person having had Pancreatitis.

Edit by mod to conform with forum rules.

 

[Pam*]

Heya
Yup you have type 3c. You can only have type 3c though to my knowledge if your Diabetes has been caused from the person having had Pancreatitis.

Im type 3C caused by having my entire pancreas removed due to Neuroendocrine pancreatic cancer so it's not only people who've had pancreatitus that become 3C

 

[lovinglife]

It seems there are a number of reasons someone can diagnosed with T3c including cystic fibrosis (which I never knew)

Type 3c Diabetes

Type 3c diabetes develops when your pancreas experiences damage, such as from chronic pancreatitis or cystic fibrosis.

my.clevelandclinic.org

 

[IanB07]

Hi Guys,

I'm a T3c too. I was T2 for 25 years before my pancreas just have up. It took a strangely long time to get into the Diabetic clinic. I've had a Libre 2 since last October and had to do my own research and pay a Consultant to help me sort my insulin out.

I've just finished a DAFNE course and I'm a lot more confident with carb counting and diabetic control. I also have to take creon with meals and snacks as my pancreas had stopped producing the fat digesting enzymes and produces almost no insulin.

I found out that of all diabetics about 90pc are T2, 8pc T1 and the last 2pc are T3 a, b or c.

 

[Philgreasby]

Hi everyone, i am Type 3c due to acute pancreatitis and then cysts on my pancreas which wiped out my pancreas in 2019. Now i am insulin dependent and also take creon with all meals. Just wondered if there is anyone else on this forum with similar condition.

Hi I’m exactly the same since 2015. Had a Begers procedure to remove cysts and have been pain free since. Now teetotal for over 9yrs. When I tell a Doctor that I’m type 3 they often say there’s no such thing. I’m active, do a Lifeguard job and swim every day but it’s a battle to stop the hypos.

 

[IanB07]

I too struggle with hypos during excercise, I'm an active table tennis coach. I'm starting to have osteoarthritis problems in my knees and hips which might slow me up. I'm hoping it won't though.

 

[IanB07]

Heya
You can only have type 3c though to my knowledge if your Diabetes has been caused from the person having had Pancreatitis.

Edit by mod to conform with forum rules.

Hiya, I'm a Type 3c too. I've never had pancreatitis. I was diagnosed by a fecal elastase test and a blood test to see if my pancreas was producing any insulin.

 

[Ledzeptt]

I too struggle with hypos during excercise, I'm an active table tennis coach. I'm starting to have osteoarthritis problems in my knees and hips which might slow me up. I'm hoping it won't though.

I used to have problems with hypos during and shortly after exercise*and have tried various solutions: the two things that have helped me the most (besides having a Freestyle Libre to keep a close eye on what’s going on; although that can be misleading if BG dropping fast):

1. Eating a mix of carbs and protein (without injecting insulin) approx 30 mins before I start exercise e.g. egg on toast.
2. Sipping orange juice during my exercise rather than water.

I don’t do anything as fast paced as table tennis though. It is a case of experimenting.

*I’m also at risk of a second hypo approx 11-13 hours after the exercise, which is often in the middle of the night (something to do with muscles rebuilding and absorbing any “free” glucose). I split my basal (Levemir) and reduce the evening dose on those days. Again, I had to experiment to find the right amount for me.

 

[Gray Wolf]

Hi folks I'm reading this with great interest as I have had Chronic Necrolytic Pancreatitis since 2010 (well in 2010 it was acute)
My GP hasn't mentioned the type 3 version of diabetes and it's totally new to me

My personal problem is not hypo but going Hyper and I have recently had a new medication added to my Metformin and Gliclazide that's Alogliptin
and at present I am NOT on insulin

So appears I need to do a lot of reading and then inform my GP's

 

[Cumbrianjudith]

3 different diabetes drugs used to be the criteria for prescription for CGM sensors like
Libre Freestyle 2 …very useful to see how your ‘BG’ reacts to exercise, food and drink, as we are all different. I swim 50 mins 5x a week and my BG only goes down a small amount as I believe it coincides with a BG ‘dump’ / increase as I get busy for the day.

 

[Dr Clive]

I'm Type 2 on Ryebelus and Tougeo and novo rapid insulin. Despite lowering the insulin I still drop to below 4 after an hour or so at the gym. I find a cappuccino mix coffee and a banana usually sorts the problem.

 

[Cumbrianjudith]

I'm Type 2 on Ryebelus and Tougeo and novo rapid insulin. Despite lowering the insulin I still drop to below 4 after an hour or so at the gym. I find a cappuccino mix coffee and a banana usually sorts the problem.

Those would give me a hypo! Depending of course whether your gym is daily..you’ve reduced your daily Toujeo my 10%?