Looking for other Type 3C people to talk to.

[jsw]

Hi, Im Jason 53 from Surrey, I was diagnosed this year with Chronic Pancreatitis (asymptomatic, didnt know i had it for past 10+ years) and now Type 3C since April (symptoms started 72 hours after having my first Astra Zeneca Jab). I am taking Metformin, Statins along with Insulin (Novorapid (with meals) and Abasaglar at night).
Having very little quality time with the GPs/Diabetic Nurses ive been studying the internet and reading all the medical journals and to be honest its not very good news all round.
I was hoping to get to chat on line to others in the same boat and get some perspective from from people who have been on this road longer than i have. Thank You.

Regards Jason

 

[Docb]

Hi @jsw and welcome to the forum. I am not 3c but we have a number of 3c members and I am sure somebody will be along soon to start up a conversation. Chances are they will be more informative than your DN/GP simply because they see so few type 3c's they are having to learn along with the patient!

 

[jsw]

Thank You Docb. I look forward to meeting the others in time.

 

[Docb]

I'll tag @eggyg , she is fast becoming our resident guru on the subject!

 

[SB2015]

Welcome to the forum @jsw

Sorry to hear about your diagnosis of Type 3c. Alongside the digestive issues the diabetes is treated in a very similar way as T1. Have you been referred to the specialist team. Some 3Cs have found that they fall in a gap as they are not classified as T1.

What insulin(s) are you on? How are you coping with making adjustments to the doses?
There are useful education courses around carb counting and dose adjustment. If you have not yet been offered one it can be very helpful.

If you have any questions do ask. Nothing is considered silly on here.

 

[soupdragon]

Good to see you here, @jsw

I'm also Type 3c following pancreatitis, acute in my case. Now a few years into the diabetes journey juggling Creon (assuming you are too?) with insulin doses.

I'm in Surrey, too. Wondered from your post if your support with diabetes is coming from diabetes nurse at the GP surgery or specialist nurses at the hospital. The absorption issues with 3c can be challenging so it's helpful if the team supporting you have knowledge of 3c.

Anything that you're finding particularly tricky?

 

[everydayupsanddowns]

Welcome to the forum @jsw

Hope you find it helpful to have a space to compare notes and share experiences with others - both those with type 3c, and also those with other types of diabetes.

I’ll tag in a few more Type 3c members in case any of them are in circulation over the next few days/weeks

@Hepato-pancreato @martindt1606 @Proud to be erratic @SianyBee @stackingcups

There are others, but I’m trying to remember those who visit and post fairly frequently 🙂

 

[jsw]

Good to see you here, @jsw

I'm also Type 3c following pancreatitis, acute in my case. Now a few years into the diabetes journey juggling Creon (assuming you are too?) with insulin doses.

I'm in Surrey, too. Wondered from your post if your support with diabetes is coming from diabetes nurse at the GP surgery or specialist nurses at the hospital. The absorption issues with 3c can be challenging so it's helpful if the team supporting you have knowledge of 3c.

Anything that you're finding particularly tricky?

Hi Soupdragon

Many Thanks for your message, its much apprecieated.

Thats interesting youre also in Surrey. At the moment I dont have a supporting team, Ive seen the GP many times and Diabetic nurses but only for blood test and nothing in detail. In fact I saw the Diabetic Nurse three weeks ago and i ask if I should book an appointment for a month or two's time, and she told me no and she didnt need to see me again but just make sure that I book a HbA1c test every 3 months!!.
Yes im on two types of Insulin each meal and 24 hour dose in the evening. So far i dont do Creon, TBH Im just learning out what to do from the internet, which has scared me with all the early death stats, and no way out to fix.
Im guessing my diet, im guessing my units of insulin, and working out my own carb counting technique from reading books and on line.
Are you under Frimley park Hospital? I havnt had absorption issues yet, but i guess thats coming my way too.

 

[jsw]

Welcome to the forum @jsw

Hope you find it helpful to have a space to compare notes and share experiences with others - both those with type 3c, and also those with other types of diabetes.

I’ll tag in a few more Type 3c members in case any of them are in circulation over the next few days/weeks

@Hepato-pancreato @martindt1606 @Proud to be erratic @SianyBee @stackingcups

There are others, but I’m trying to remember those who visit and post fairly frequently 🙂

Hi

Many Thanks for your help and support.

 

[soupdragon]

Hi Soupdragon

Many Thanks for your message, its much apprecieated.

Thats interesting youre also in Surrey. At the moment I dont have a supporting team, Ive seen the GP many times and Diabetic nurses but only for blood test and nothing in detail. In fact I saw the Diabetic Nurse three weeks ago and i ask if I should book an appointment for a month or two's time, and she told me no and she didnt need to see me again but just make sure that I book a HbA1c test every 3 months!!.
Yes im on two types of Insulin each meal and 24 hour dose in the evening. So far i dont do Creon, TBH Im just learning out what to do from the internet, which has scared me with all the early death stats, and no way out to fix.
Im guessing my diet, im guessing my units of insulin, and working out my own carb counting technique from reading books and on line.
Are you under Frimley park Hospital? I havnt had absorption issues yet, but i guess thats coming my way too.

Hi @jsw

I assume it depends on the amount of damage to the pancreas as to whether Creon is needed. I've got very little pancreas remaining so have been taking it from the start. If food isn't being absorbed as expected it makes the carb counting and working out insulin doses tricky.

In terms of carb counting - I had a couple of sessions on carb counting, which were very useful. I found the Bertie online course good too (and I'd had a look at that before the sessions I attended).

I'm with the Royal Surrey County Hospital, where I was treated for the pancreatitis. It also happens to be the specialist pancreatic centre for Surrey and Sussex. Their diabetes team is very familiar with Type 3c, because they see a lot of us!

 

[Dave W]

Hi @jsw When diagnosed as T2 in December 2019 more or less by accident as another condition was being tested for, I'd shed a lot of weight over the previous couple of years and was significantly under-weight and had osmotic symptoms. I was prescriibed gliclazide and this seemed to work for a while and brought my HbA1c into almost 'remission' level. BUT it started to rise again and in January 2019 I was prescibed insulin, at first just a basal dose of lantus and then shortly later bolus doses of NovoRapid - this regimen, supported by the data collected by my Libre monitor has enabled me to keep a pretty good grip on my blood glucose levels.
A further development in mid 2019 was the discovery that I was suffering from acute pancreatitis and once again this discovery was a chance finding, as it was a result of MRI and CT scans related to prostate cancer. Seems I have a calcified cyst on my pancreas. The happy outcome of the discovery of pancreatitis is that I'm now on PERT pancreatic replacement therapy, am digesting what I eat and my weight has increased to within target levels for my age and height.
I didn't get a formal recognition until a couple of weeks ago when I had my 6 month (phone) review with a consultant when I queried if I might not be T3c and she confirmed that I am.
As far as I've been able to discover T3c doesn't really make much difference to how diabetes is treated compared with insulin dependent T2, or T1 but what it does do is explain why the person had developed diabetes.

It's very early days on your diabetic journey Jason, but you'll find things get easier week by week. For sure there's quite a lot to learn, but treat it as a learning and rewarding experience and it will be much easier. There's days I curse my D, but mostly I look at how well I'm coping and give myself a pat on the head and think about how I can maintain or improve my progress. If you can get prescibed a Libre do so as it makes monitoring easy and the feedback very useful and rewarding.

EDIT - You've possibly already come across this, but here's something about T3c and Healthy Living from Pancreatic Cancer UK.

https://www.pancreaticcancer.org.uk/wp-content/uploads/2020/10/Type-3c-diabetes-and-healthy-living.pdf

 

[soupdragon]

Totally agree with @Dave W that Libre makes managing things much easier. I believe Libre can only be prescribed by diabetes consultants, though, not GPs.
Have you considered asking to be referred to a diabetes consultant?

Also, just wondering whether PERT (Creon) has been considered for you, especially if you are losing weight. Not sure if GPs can prescribe or if it has to be started by a hospital team, though. Might be worth discussing with your GP.

 

[jsw]

Hi @jsw

I assume it depends on the amount of damage to the pancreas as to whether Creon is needed. I've got very little pancreas remaining so have been taking it from the start. If food isn't being absorbed as expected it makes the carb counting and working out insulin doses tricky.

In terms of carb counting - I had a couple of sessions on carb counting, which were very useful. I found the Bertie online course good too (and I'd had a look at that before the sessions I attended).

I'm with the Royal Surrey County Hospital, where I was treated for the pancreatitis. It also happens to be the specialist pancreatic centre for Surrey and Sussex. Their diabetes team is very familiar with Type 3c, because they see a lot of us!

That sounds hard work managing with the Creon on top of the usual stuff, I hope i dont need that process just yet, not until ive got use to all the other parts of diabetes.
Ive not had too much interaction with the actual hospital (Frimley Park) so unsure what they have to offer me, I will certainly ask my GP for information. Does The Royal Surrey offer meetings etc where you meet other 3c etc to discuss the conditions and swap info/experiances? That would be great if those were available.

 

[jsw]

Hi @jsw When diagnosed as T2 in December 2019 more or less by accident as another condition was being tested for, I'd shed a lot of weight over the previous couple of years and was significantly under-weight and had osmotic symptoms. I was prescriibed gliclazide and this seemed to work for a while and brought my HbA1c into almost 'remission' level. BUT it started to rise again and in January 2019 I was prescibed insulin, at first just a basal dose of lantus and then shortly later bolus doses of NovoRapid - this regimen, supported by the data collected by my Libre monitor has enabled me to keep a pretty good grip on my blood glucose levels.
A further development in mid 2019 was the discovery that I was suffering from acute pancreatitis and once again this discovery was a chance finding, as it was a result of MRI and CT scans related to prostate cancer. Seems I have a calcified cyst on my pancreas. The happy outcome of the discovery of pancreatitis is that I'm now on PERT pancreatic replacement therapy, am digesting what I eat and my weight has increased to within target levels for my age and height.
I didn't get a formal recognition until a couple of weeks ago when I had my 6 month (phone) review with a consultant when I queried if I might not be T3c and she confirmed that I am.
As far as I've been able to discover T3c doesn't really make much difference to how diabetes is treated compared with insulin dependent T2, or T1 but what it does do is explain why the person had developed diabetes.

It's very early days on your diabetic journey Jason, but you'll find things get easier week by week. For sure there's quite a lot to learn, but treat it as a learning and rewarding experience and it will be much easier. There's days I curse my D, but mostly I look at how well I'm coping and give myself a pat on the head and think about how I can maintain or improve my progress. If you can get prescibed a Libre do so as it makes monitoring easy and the feedback very useful and rewarding.

EDIT - You've possibly already come across this, but here's something about T3c and Healthy Living from Pancreatic Cancer UK.

https://www.pancreaticcancer.org.uk/wp-content/uploads/2020/10/Type-3c-diabetes-and-healthy-living.pdf

Hi Dave W, Thank you for your story, its wierd but really helpful knowing your not alone with this and that others are also go through all the same/similar things.

I do know about the Libre system and have been talking to GP about this and will keep pushing,as I think with the more data you have the easier it will be to control. Ive also seen a course called DAFNE which ive asked about and this is about carb counting so would be really helpful, i think there is a waiting list so not sure if/when that will happen. fingers are crossed.

Ive never heard of PERT what does that do? how do you know if you need it?

 

[jsw]

Totally agree with @Dave W that Libre makes managing things much easier. I believe Libre can only be prescribed by diabetes consultants, though, not GPs.
Have you considered asking to be referred to a diabetes consultant?

Also, just wondering whether PERT (Creon) has been considered for you, especially if you are losing weight. Not sure if GPs can prescribe or if it has to be started by a hospital team, though. Might be worth discussing with your GP.

I have asked for the Libre but I think i have a fight for that but im not going to give up. I have now a meeting with a consultant in FEB so im hoping he will be able to help me with connecting with more spefiic help/courses/etc.
Ive never heard of PERT before, so unsure what that is, When i was diagnosed in April this year, i had lost 12 kilos in 8 weeks from 85kilos to 72kilos, but since ive started my insulins/tablets etc i have now got my weight back which im very pleased about.
what are your main struggles?

 

[Pumper_Sue]

That sounds hard work managing with the Creon on top of the usual stuff, I hope i dont need that process just yet, not until ive got use to all the other parts of diabetes.

I can assure you taking Creon is a doddle, I have a cyst on my pancreas which means I do not digest food so the Creon was a life changer blood sugars in range most of the time and no guess work as to what my blood sugars are going to do once I have eaten.
Life is bliss 🙂

 

[Pumper_Sue]

Ive never heard of PERT before, so unsure what that is,

Pert is pancreas enzyme replacement therapy (Creon)

 

[jsw]

I can assure you taking Creon is a doddle, I have a cyst on my pancreas which means I do not digest food so the Creon was a life changer blood sugars in range most of the time and no guess work as to what my blood sugars are going to do once I have eaten.
Life is bliss 🙂

Hi,
Blimey, how/why do you get a cyst? is this something that can be taken out? or healed? How do you aviod getting them? PERT=Creon... Got it, Thanks.

 

[Pumper_Sue]

Hi,
Blimey, how/why do you get a cyst? is this something that can be taken out? or healed? How do you aviod getting them? PERT=Creon... Got it, Thanks.

Cyst no idea, apparently many people have them but they cause no problem at all. As I understand it the type I have can turn cancerous so I have to have an MRI scan every 6 months just to keep an eye on things. Also as I understand it there's a very high risk of serious damage if surgeons go delving in so things are best left undisturbed unless there's a need to remove. 🙂
Creon works wonders so I'm just pleased I feel well again 🙂

 

[jsw]

Cyst no idea, apparently many people have them but they cause no problem at all. As I understand it the type I have can turn cancerous so I have to have an MRI scan every 6 months just to keep an eye on things. Also as I understand it there's a very high risk of serious damage if surgeons go delving in so things are best left undisturbed unless there's a need to remove. 🙂
Creon works wonders so I'm just pleased I feel well again 🙂

OMG that all sounds horrible, I so pleased that your feeling better now and that the Creon is working for you