# Looking for other Type 3C people to talk to.



## jsw (Nov 11, 2021)

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 (Nov 11, 2021)

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 (Nov 11, 2021)

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


----------



## Docb (Nov 11, 2021)

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


----------



## SB2015 (Nov 12, 2021)

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 (Nov 13, 2021)

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 (Nov 14, 2021)

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 (Nov 14, 2021)

soupdragon said:


> 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.
> 
> ...


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 (Nov 14, 2021)

everydayupsanddowns said:


> 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.
> 
> ...



Hi 

Many Thanks for your help and support.


----------



## soupdragon (Nov 14, 2021)

jsw said:


> Hi Soupdragon
> 
> Many Thanks for your message, its much apprecieated.
> 
> ...


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 (Nov 14, 2021)

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 (Nov 14, 2021)

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 (Nov 15, 2021)

soupdragon said:


> 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.
> 
> ...


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 (Nov 15, 2021)

Dave W said:


> 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.
> ...


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 (Nov 15, 2021)

soupdragon said:


> 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 (Nov 15, 2021)

jsw said:


> 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 (Nov 15, 2021)

jsw said:


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


Pert is pancreas enzyme replacement therapy (Creon)


----------



## jsw (Nov 15, 2021)

Pumper_Sue said:


> 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 (Nov 15, 2021)

jsw said:


> 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 (Nov 15, 2021)

Pumper_Sue said:


> 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


----------



## nonethewiser (Nov 15, 2021)

Long time type 1 then got diagnosed with exocrine pancreatic insufficiency 3 years ago. Take Creon with meals, mainly take same dose each time except for meals higher in protein & fat, for some reason this requires more.

At time of diagnosis consultant had good sense to request Dexa scan to check bone density, not absorbing food properly can lead to calcium deficiency which in turn can lead to osteoarthritis. Luckily scan picked up I was at stage before so was started on once weekly dose of  alendronic acid & calcium tabs twice daily, to take this for 5years then stop.

So far so good, condition doesnt interfere with life that much, taking Creon along is just like picking up insulin bg meter glucose when going out.


----------



## Jaec (Nov 15, 2021)

jsw said:


> 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


Hi


----------



## Jaec (Nov 15, 2021)

nonethewiser said:


> Long time type 1 then got diagnosed with exocrine pancreatic insufficiency 3 years ago. Take Creon with meals, mainly take same dose each time except for meals higher in protein & fat, for some reason this requires more.
> 
> At time of diagnosis consultant had good sense to request Dexa scan to check bone density, not absorbing food properly can lead to calcium deficiency which in turn can lead to osteoarthritis. Luckily scan picked up I was at stage before so was started on once weekly dose of  alendronic acid & calcium tabs twice daily, to take this for 5years then stop.
> 
> So far so good, condition doesnt interfere with life that much, taking Creon along is just like picking up insulin bg meter glucose when going out.


Hi 
I am pretty much in the same boat as you. I was diagnosed as type2 10 years ago, then 4 years ago I was diagnosed with chronic pancreatitis. So I am on abasaglsr and humolog, stations, creon, and D3/calcium. My CP gives me problems 3/4 times a month but pain never gives me the need to go to hospital, diarrhoea is the main problem. Injecting is getting me down but have to put up with it x


----------



## soupdragon (Nov 15, 2021)

jsw said:


> 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.


The Creon is very useful if needed. It will depend on how much and where the pancreatic damage is as to whether it is  needed. If you're not losing weight that's looking good for you. Once the doses of Creon are sorted it's generally just a case of taking some with meals.

I did meet a couple of other 3cs at the carb counting course but there wasn't that much time to chat. There aren't any meetings for 3cs there that I'm aware of.


----------



## jsw (Nov 16, 2021)

nonethewiser said:


> Long time type 1 then got diagnosed with exocrine pancreatic insufficiency 3 years ago. Take Creon with meals, mainly take same dose each time except for meals higher in protein & fat, for some reason this requires more.
> 
> At time of diagnosis consultant had good sense to request Dexa scan to check bone density, not absorbing food properly can lead to calcium deficiency which in turn can lead to osteoarthritis. Luckily scan picked up I was at stage before so was started on once weekly dose of  alendronic acid & calcium tabs twice daily, to take this for 5years then stop.
> 
> So far so good, condition doesnt interfere with life that much, taking Creon along is just like picking up insulin bg meter glucose when going out.


Hi
Ive not heard of the Dexa scan or about bone density problems. (Diabetes, the gift that keeps giving!) I shall add that to my list of points to discuss with GP.
On the subject of Creon, its just tablet form that you take with each meal?  I assume you only need this when you start to lose weight? or is there other syptems I should look out for?


----------



## jsw (Nov 16, 2021)

Jaec said:


> Hi
> I am pretty much in the same boat as you. I was diagnosed as type2 10 years ago, then 4 years ago I was diagnosed with chronic pancreatitis. So I am on abasaglsr and humolog, stations, creon, and D3/calcium. My CP gives me problems 3/4 times a month but pain never gives me the need to go to hospital, diarrhoea is the main problem. Injecting is getting me down but have to put up with it x


Hi Jaec
So from what i understand you would now be Type3C and not Type2 anymore? (because you had CP) 
Can I ask, if your on Creon, why are you having diarrhoea problems, isnt creon ment to solve that side of it?
Sorry to hear about your CP Pains that must be awful......


----------



## jsw (Nov 16, 2021)

soupdragon said:


> The Creon is very useful if needed. It will depend on how much and where the pancreatic damage is as to whether it is  needed. If you're not losing weight that's looking good for you. Once the doses of Creon are sorted it's generally just a case of taking some with meals.
> 
> I did meet a couple of other 3cs at the carb counting course but there wasn't that much time to chat. There aren't any meetings for 3cs there that I'm aware of.


Hi
Im not sure at all about what state my Pancreas is in, All ive been advise is that is looks 'withered' on the MRI. So far no weight loss and im eating most things (but following a good healthy diet) No Alcohol/Smoking etc.
Have you been on Creon since your diganosis?  DId you have stomach (diarrhoea) issue also and has the Croen stopped this for you?

shame about the meeting for 3c etc I would have been very keen to get involved. Hopefully when I can get on the DAFNE course I will get a chance to meet others.


----------



## stackingcups (Nov 16, 2021)

Hiya. Keep coming to dip my head in but getting distracted. I'm Nat, I'm 38 and got diagnosed with type 3c this summer after a couple of years of recurring acute pancreatitis. 

I'm not on Creon, and at the moment aside from the diabetes my pancreas isn't causing me any bother thankfully. 

I'm on basal insulin, but my pancreas appears to be functioning enough to not need bolus for the moment. 

I'm still quite the newb really. But wanted to say hi to a fellow 3c!


----------



## jsw (Nov 16, 2021)

stackingcups said:


> Hiya. Keep coming to dip my head in but getting distracted. I'm Nat, I'm 38 and got diagnosed with type 3c this summer after a couple of years of recurring acute pancreatitis.
> 
> I'm not on Creon, and at the moment aside from the diabetes my pancreas isn't causing me any bother thankfully.
> 
> ...


Hi Nat
Nice to meet you, only being on here a few days and meeting different people it does seem that everybody has their own levels of complications and aliments and medicines. Ive found this site so helpful, just having a few email messages is really helping me to understand our situation we have now found ourselves in. 
Have you made many life changes since your diagnosis? and how are you coping with all this?


----------



## nonethewiser (Nov 16, 2021)

jsw said:


> Hi
> Ive not heard of the Dexa scan or about bone density problems. (Diabetes, the gift that keeps giving!) I shall add that to my list of points to discuss with GP.
> On the subject of Creon, its just tablet form that you take with each meal?  I assume you only need this when you start to lose weight? or is there other syptems I should look out for?



Creon is in capsule form, supplement rather than a drug.

Think if you know you've not been absorbing food properly for some time then scan is worth asking for.


----------



## stackingcups (Nov 16, 2021)

jsw said:


> Hi Nat
> Nice to meet you, only being on here a few days and meeting different people it does seem that everybody has their own levels of complications and aliments and medicines. Ive found this site so helpful, just having a few email messages is really helping me to understand our situation we have now found ourselves in.
> Have you made many life changes since your diagnosis? and how are you coping with all this?


Hi Jason. I was in a right tizz to start with. It was slow to get treatment started, and it's taken what feels like forever to get my blood sugar levels to a good point. But life has carried on, with new routines and it's all settling quite well to be honest. I do need to keep reducing my carb eating for sure but other than remembering to take my testing kit with me everywhere it doesn't feel like much has changed. 

It helps that I'm not yet on Creon or bolus injections. Though I'm all to aware that may change in time.


----------



## Jaec (Nov 16, 2021)

jsw said:


> Hi Jaec
> So from what i understand you would now be Type3C and not Type2 anymore? (because you had CP)
> Can I ask, if your on Creon, why are you having diarrhoea problems, isnt creon ment to solve that side of it?
> Sorry to hear about your CP Pains that must be awful......


Yes type 3c now.  Although, I’ve not seen a diabetic or endocrinologist consultant, my specialist diabetic nurse confirmed it. I would really like to speak to a consultant but sure if they could tell me any more.
Creon does work very well most of the time but diarrhoea can catch me out sometimes, then I up the dose.


----------



## jsw (Nov 16, 2021)

stackingcups said:


> Hi Jason. I was in a right tizz to start with. It was slow to get treatment started, and it's taken what feels like forever to get my blood sugar levels to a good point. But life has carried on, with new routines and it's all settling quite well to be honest. I do need to keep reducing my carb eating for sure but other than remembering to take my testing kit with me everywhere it doesn't feel like much has changed.
> 
> It helps that I'm not yet on Creon or bolus injections. Though I'm all to aware that may change in time.


Yes i was like you, it was a hell of a start and nothing seemed to work, then gradually things started falling into a routine and my numbers got better, although im still scratching my head sometimes when my numbers are high/low compared to the previous day and eating the same things.
Im learning the carb counting thing by myself and hope to go on a DAFANE course soon, but nobody has mentioned to me that I need to lower my carb intake? Why do you need to reduce your carb intake?


----------



## jsw (Nov 16, 2021)

Jaec said:


> Yes type 3c now.  Although, I’ve not seen a diabetic or endocrinologist consultant, my specialist diabetic nurse confirmed it. I would really like to speak to a consultant but sure if they could tell me any more.
> Creon does work very well most of the time but diarrhoea can catch me out sometimes, then I up the dose.


Hi 
Thats good to know that your Creon is working, i was worried it wasnt doing its job.   Do you find that you lose weight easy and its hard to put weight on? or does the croen help with this also


----------



## stackingcups (Nov 16, 2021)

jsw said:


> Yes i was like you, it was a hell of a start and nothing seemed to work, then gradually things started falling into a routine and my numbers got better, although im still scratching my head sometimes when my numbers are high/low compared to the previous day and eating the same things.
> Im learning the carb counting thing by myself and hope to go on a DAFANE course soon, but nobody has mentioned to me that I need to lower my carb intake? Why do you need to reduce your carb intake?


If you're carb counting for bolus injections, you don't need to reduce your carbs just inject appropriately. 

I'm trying to reduce mine on na evening to stop me from going to bed with high sugars.


----------



## jsw (Nov 16, 2021)

stackingcups said:


> If you're carb counting for bolus injections, you don't need to reduce your carbs just inject appropriately.
> 
> I'm trying to reduce mine on na evening to stop me from going to bed with high sugars.


Aaah Yes of course, I should have guessed that. Sorry!


----------



## Proud to be erratic (Dec 1, 2021)

jsw said:


> Aaah Yes of course, I should have guessed that. Sorry!


Hi @jsw, sorry I'm late to this dialogue - been distracted recently!

I'm a T3c, since Feb 2020 when I had a total pancreatectomy to arrest pancreatic cancer. After recovery from surgery I had some chemo and so didn't really start to grapple with my diabetes until late Oct. So my T3c is, I think, a bit different from others who've replied to you. You will read that we are all different and this applies just as much to the tiny group of T3cs as it does to the much larger groups of T1s and T2s.

No pancreas means no latent pancreatic interferences or surprises; but no pancreas means I have to manage all my missing pancreatic functions: I'm not only missing insulin, but 3 other hormones, of which (perhaps) glucagon is the next most important. Without Glucagon, at age 70+, I have negligible growth hormone and so really have only got adrenaline to stimulate my liver to release glucose into my system when I have low BG. Consequently my DM is extremely brittle (erratic); I have crashed from BG9.9 to 4.1 in less than 15mins. At that speed arresting the fall is effectively impossible. Before I had Libre 2, finger pricking simply didn't adequately inform me and I previously had some awkward lows! So, while in some ways as a T3c I have similarities with T1, eg certain insulin dependency; my problem has been that very few medically qualified people understand that T3c (or at least my T3c) is extremely difficult to manage and is NOT the same as most T1s. If you are not yet under a very competent Endocrinologist and a Diabetes Spec Nurse (DSN) you will find managing even more challenging. It would be rare for a GP's Surgery to have a DSN rather than a nurse designated within the Practice to be the focal point for diabetes; of all diabetics in UK c.90% are T2, 10 % T1 and T3cs are a miniscule percentage; practice nurses mainly deal with T2, since many T1s are under DSNs or have managed their condition for so long they know as almost as much as specialists. Without knowing where exactly you are in Surrey, you might consider asking Frimley if they would refer you to the Royal Surrey for the T3c specialists. You certainly need to have an Endocrinologist who understands T3c; your GP should have referred you already - but chances are your GP simply doesn't understand the significance of T3c. Mine didn't and I've since realised most don't; a recently retired GP friend freely admitted he was unaware of T3c differences until I told him my diagnosis; then he did some research. I have been extremely lucky that my Oxford surgical team from Feb '20 kept me on their books and after a recent surgical review in Oxford I now come under the Oxford Centre for Diabetes, Endocrinology and Metabolism. I live in Bucks.

All that said it is not all doom and gloom; but 20 months on I'm still finding that managing my DM is pretty full time. I'll return to that theme shortly.

I take Creon (on an industrial scale according to my gastroenterologist) to provide the necessary digestive enzymes that I can'tvget from my pancreas. I agree taking Creon is straightforward, albeit something else to remember at meal times. Several specialists have reassured me that there is no danger from taking too much Creon. The surgery has altered my internal plumbing, a bit, and it seems I "malabsorb" some of my food. So while I do weigh food and diligently carb count, if not all food is fully digested, the carb insulin ratios are more of an art rather than a science; this adds to my brittle diabetes. I did the BERTIE course on-line, no waiting list, which was fine; but I really appreciated the book "Think Like a Pancreas" by Gary Scheiner. He is a longstanding T1 and his book is unashamedly for insulin dependent diabetics; whilst he is American he conscientiously and most helpfully translates the US numbers into our UK/ European equivalents. He has a substantial segment on carb counting.

Libre 2 was a significant improvement on finger pricking and my DM became more manageable; but I came across the Diabox app which, on my android phone, now provides me with Continuous Glucose Monitoring (CGM) reading directly from Libre 2 and using Bluetooth Low Emission (BLE) and that is the real game changer. I eat all meals and snacks with one eye on my CGM; if the carb intake is too far behind the arrival of the bolus insulin, (timing is important) then I'll eat the high GI parts of my meal first and that often works. If the carbs have arrived before the insulin then I can either slow down or add more oil/ butter/cream and let the extra fats slow down the digestion. I'm not trying to keep my BG constant as I eat, just in range between 4 and 10. This is still not perfect, but far better than trying to flash scan my Libre 2 every couple of minutes! Diabox also has better alarms, provides a numerical value to any rise or fall and can be recalibrated to match actual BG - but of course only when there is little or no BG change; so I lean heavily on Diabox day and night. You will definitely need at least a DSN, if not a Consultant, to set up the review for you to have Libre 2; the good news is that I have seen only this week an announcement that NICE have confirmed that from now on all those entitled to Continous or Flash Glucose Monitoring will get it on the NHS - so that should end the post code lottery. I'll look for that reference on Friday (busy tomorrow).

This ramble brings me round to my latest view of DM: I liken it to managing 3 strands of a rope, which needs all 3 strands for best performance. 
         Firstly there is the basic mechanics of taking carbs (counting etc) and insulin (dosing/injecting/timings).                 Secondly there is medical knowledge: knowing more about one's metabolism helps with the basic mechanics; understanding which carbs have higher or lower GI allows some refinement; understanding how the weather, activity, stress etc affects DM helps explain (even if retrospectively) why a day went badly or better - helps pre-empt bad days! 
          Thirdly technology: just viewing Libre 2 continuously through Diabox opened my eyes to the wider potential of even more technology. I feel I'm ready to explore asking for a pump; I'm happy that I know how to manage old school (finger pricking and Multiple Daily Injections (MDI)) but the speed at which our mobiles have advanced in the last 10 years means there is every chance the DM technology will step up, even if not so quickly. My immediate next step is to get my Diabox app displayed on a Smart Watch - so I'm not walking around with my phone permanently in my hand! 

So there is a huge amount to get your mind around. But it is possible that some (arguably much) of what I've learnt since Nov '20 is now becoming reasonably well ingrained in my daily life. I also believe that "Knowledge helps Dispel Fear". Despite lots of knowledge sometimes seeming confusing, I find I can often think back and explain to myself why I had a bad day. I certainly find my diagnosis less frightening, but still at times intimidating. I now just need to remember the lessons learnt and apply them !!

I hope some of this helps.


----------



## Proud to be erratic (Dec 2, 2021)

jsw said:


> 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?


It seems to me that waiting until Feb to see a Consultant is a long time to be managing without specialist help. There will be a diabetes team at Frimley Park. I suggest you phone or email them and ask for more immediate help; some dept's don't give email addresses, but leaving a phone message will get a response. I suspect that you need more immediate DSN support, rather than the higher level overview of a Consultant.

When I was discharged from hospital, after my pancreatectomy, I was given by the hospital initial bolus dosing amounts for breakfast, lunch and dinner - regardless of what I was actually eating. I'd met my DSN the day after discharge and I kept a logbook; I photographed my logbook pages every fortnight and sent these to her by email. She responded immediately and tweaked my prescriptive dosing regime, fortnightly. She also adjusted my slow, basal, dosing a couple of times. This is actually very important; if your basal is wrong, your bolus is always going to be trying to correct your slow release basal as well as balancing your food intake.

My DSN was able to do this using her experience, even though I wasn't carb counting. I recognised that, if I was consistent with my meals, her efforts in regulating me would be even better. So I adopted a largish, high carb breakfast (cereal, fruit, seeds and nuts), a repeatable lunch, (ie 2 slices of bread or toast with a protein filler such as cheese, meat or tinned fish; a latte and usually a small packet of crisps), then a simple supper/dinner (meat or fish, potatoes and peas). From this I was getting a balanced diet but broadly similar day by day, yet a varied diet. It didn't matter what the diet was, nor the variation in meal sizes - just being a bit consistent and thus allowing the bolus dosing to approximately match my daily routine - yet NOT carb counting at this stage.

If you have a DSN assisting you at this early stage, he or she will not only give you confidence in what you are doing, but can raise a report on you just before you meet your Consultant in Feb - who should then be better informed about your unique circumstances. The DSN can recommend to the Consultant that you should try Libre 2; with that recommendation the Consultant is already "positioned" to agree, rather than waiting a few more months ....... BUT be aware that although Libre 2 is a huge help it can and does fail sometimes; there is no substitute for knowing how to do the basics on your own: ie finger-pricking and adjusting accordingly. My DSN gave me guidance on bolus corrections, not just for daily highs and lows, but also when I was having sick days. One consequence of DM is that when you are going down with something, eg a cold (or worse) your BG misbehaves and runs high as your body tries to fight the future illness; I know 24-48 hrs in advance that I'm about to be ill! That knowledge makes the otherwise inexplicable high BG less frightening.

Do try to get a DSN tied in to you as soon as you can; I found that invaluable.


----------



## jsw (Dec 2, 2021)

Dear Proud to be erratic

Firstly thank you so much for your in depth story and knowledge of the condition. I see that your journey so far has been in depth and challenging however I sense a clear determination to overcome and meet the multiple challenges thrown at you daily.
I too firmly believe in Technology being the way to manage this disease and take control back.

I have taken many notes from your messages and will raise these with the consultant in Feb, I do feel that the Libre 2 will be available to me, once I have completed the DAFNE course  (I'm currently on the waiting list with Frimley Park for this since October so hopefully will get this early 2022). 

I will most defiantly enquire about the 3c specialist team in Guildford, as I must say the DN team in Camberley are whilst friendly have zero knowledge of 3C, in fact that also goes for the GP's.  Talking to a DSN would be wonderful. (I was told by my local DN in October that she doesn't need to see me again and that I just need to remember to book my HbA1c blood tests every 3 months!  I was and still am mortified that Im just left to cope on my own).

However coping on my own I am, I carb count and figure out my insulin dose and 80-90% of the time I'm staying on track, having the 'how did that happen' results every day or two.  The DAFNE course I think will be of huge benefit when it comes.

Ive not heard of the DIABOX App before so thank you for that info, I'll look into that once/if I get my Libre 2.

Yes,  already got the 'Think Like a Pancreas' Book, and intend to get through that over the Christmas Holidays. 

I would point out that joining this forum has been of great benefit to me as this is the only connection I have with other diabetics albeit T1's T2's or 3C's which has helped me since joining to get the feeling of not being alone. 

I do hope to hear from you again from time to time and wish you all the luck and positive energy for the fight ahead.

Thank You


----------



## Proud to be erratic (Dec 2, 2021)

jsw said:


> Dear Proud to be erratic
> 
> Firstly thank you so much for your in depth story and knowledge of the condition.


You are most welcome; I was slightly worried that I'd overcooked the info! But I read it again and decided that after 2+ weeks you might be OK with the "indepth" approach.


jsw said:


> I was and still am mortified that Im just left to cope on my own).
> 
> However coping on my own I am, I carb count and figure out my insulin dose and 80-90% of the time I'm staying on track, having the 'how did that happen' results every day or two.
> Thank You


Yes, I was mortified for you about being left on your own. That's why I suggested you prod the Frimley Park diabetes team. 
But we'll done for coping; take an extra pat on the back! It's not easy at first and I still have days when I think *!# as well as why??? 

A big problem for me is that I can go well below 4 quickly, while driving. The CGM warns me, and I always have jelly babies in an easy to reach place. I'm deducing that stress from driving in busy conditions is probably the cause.

One thing I didn't say, was about my weight. I am 73kg, which is ideal for me. A bit less and I look like my late father (in his coffin) and a bit more then nothing fits! I've been very stable at that weight more-or-less since the surgery. This means I can eat anything and everything without needing to worry about putting on weight. My malabsorption is being treated by a Gastroenterologist and I'm part way through a 2 week course of unusual antibiotics; he had to get approval from somewhere before he could prescribe them. They are helping now and if that continues, then I might find my weight changes (or I have to be more prudent about what I eat). Before I was referred for the Gastro consult, I had access to a Macmillan dietician after my chemo, then a dietician from the Bucks diabetes team, then a dietician from the HPB Surgical team in Oxford. This gave me lots of extra knowledge about diet and general metabolism, but no resolution - hence the Gastro consult. 

My point in mentioning this is that I find some people are wrestling with weight control and so are not only carb counting for their DM, but carb restraining for their weight control. Your body (your brain in particular) needs glucose, which it normally gets from carbs. But if the carb intake is very small then your body will convert proteins and fats into glucose; this might seem OK but it introduces a couple of distractions: the conversion rate is roughly 2 proteins for 1 carb, but that can differ for different people; and it introduces the ketone problem, a by- product of the conversion. So I avoid those distractions by always having at least 30 gm CHO with any main meal (frequently more, but it seems that 30 is sufficient to stop the protein or fat conversion) and some CHO with any snack. I know that I'm fortunate to not need to constrain my carb intake. I also love extra butter, oil or cream with any food; all 3 dieticians have said fine - my blood tests show my cholesterol is well under control.

As a matter of curiosity how frequently do you finger prick?


----------



## jsw (Dec 3, 2021)

Proud to be erratic said:


> You are most welcome; I was slightly worried that I'd overcooked the info! But I read it again and decided that after 2+ weeks you might be OK with the "indepth" approach.
> 
> Yes, I was mortified for you about being left on your own. That's why I suggested you prod the Frimley Park diabetes team.
> But we'll done for coping; take an extra pat on the back! It's not easy at first and I still have days when I think *!# as well as why???
> ...


Hi

So I'm currently finger pricking on average 10 times a day, I'm using an app called mySugr and I record as much info as I can each day, weight, carb counts, insulin units, exercise , tablets taken etc etc, this I have found really useful in terms of cross checking previous units v 2 hrs after results, Im a bit OCD and work with data all day so I kind of love this stuff.

Weight wise, I lost 12 kilos during my initial illness which resulted in the Diabetes diagnoses however the GPs had me a T2, yet it was me that mentioned 3C as id just read a small paragraph on it in a book 'Life without Diabetes' by Roy Taylor, as they told me I had T2 and the book basically says whatever weight you are, lose 15% of your body weight and your cured, Obviously I done that with my illness and I still had Diabetes. (thought I could cure it in a week, but that was a very naive 7 months ago!!!) Happy to say Im back to previous weight of 86 kilos.

I had between 11 - 15 years ago 3 visits to the hospital with Pacreatitis yet since 11 years ago Ive never had any further problems of pains etc so thought that was the end of it, In July I had an MRI on my Pancreas and they found I small stones in it, so I had to see a consultant in October and he told me that they won't operate as I'm systematic but the consultant went on to say that I won't die of Diabetes but will die of Pancreatitis!!! I was mortified as I didn't even know I still had pancreatitis? since this statement I have been researching Pancreatitus and from what I read, I have an average life expectancy of 63....... being 53 now I have spent the past several weeks with huge anxiety.  

Can I ask you a question as I don't understand why I have such a short life expectancy, If like you you've had yours removed, why wouldn't they discuss this option for me ? not having any professional support Im confused as to why nothing can be done?


----------



## Proud to be erratic (Dec 4, 2021)

jsw said:


> Hi
> 
> So I'm currently finger pricking on average 10 times a day, I'm using an app called mySugr and I record as much info as I can each day, weight, carb counts, insulin units, exercise , tablets taken etc etc, this I have found really useful in terms of cross checking previous units v 2 hrs after results, Im a bit OCD and work with data all day so I kind of love this stuff.


So it sounds as if you're testing 1st thing after waking, before each meal and 2 hrs later (3x2=6), before driving out and back and immediately before sleep. Even if that isn't the exact logic, it is very good; well done. The 2 hrs after a meal isn't critical to being 120mins, but is helpful to be the same amount after each meal then you can get a good feel for whether your dosing calcs are sound (but as you are already finding the theory doesn't always match the reality, particularly if your activity levels vary from day to day).

I'm glad you've found MySugar. I used that app before I got my Libre 2 and found it very helpful. I have an Accuchek Mobile which is an integrated finger pricker and test meter, using a cassette allowing 50 tests. I phoned Roche and they provided the wifi attachment which transmits my results to MySugar. I also asked them for a second Accuchek Mobile which they happily provided once I confirmed I was testing 10x daily or more; I suspect their profit is in the test cassettes and the reader is a loss leader. Anyway I now have one upstairs and one in my travel pack; it's also a reserve should I drop it!

Regarding your end question: I'm in a strange position, because I went into the Churchill Hospital in Oxford in Feb 20 for an operation known as Whipple's Procedure to deal with my pancreatic cancer. I'd been told at the end of Nov '19 that I had 3 options: they could do nothing but make me comfortable and I might get 2 more years; I could have chemotherapy which could take 6 months and increase my life expectancy, perhaps up to 5 years, but no guarantee; or I could have the major surgery with no particular defined expectancy (yes, very vague) but (apart from the risks associated with such surgery) I was young enough and fit enough to take this surgery. I opted for surgery, even though I don't really know what my life expectancy is!

I knew there was a chance that my pancreas might be totally removed, but they generally didn't go that far and I let myself believe it couldn't happen to me. Post op the histology confirmed that the cancer was not just in the tumour blocking my bile duct but in 13 out of 32 lymph nodes removed with my pancreas. I then had precautionary "adjuvant" chemo, in case anything had been missed. By now the country was in full lockdown and face to face consults were simply not happening, so I had various phone conversations and never asked what my life expectancy is now.

So I'm not remotely in a position to provide an informed medical answer to your question! However, the stats that one can find are frequently placed into articles out of context, so I would be wary about what you have read. Also, if the stats say another 10 years they represent an average for which there is some much higher upper limit; you are obviously prepared to wrestle actively with your condition so you are doing your very best to be at that upper limit. And medical science is making huge forward leaps in its knowledge and treatment, so if you can get yourself under the right endocrinologist you will have access to the right person to ask about future prognosis, as well as getting the best assistance for managing your diabetes now.

"_so I had to see a consultant in October and he told me that they won't operate as I'm systematic but the consultant went on to say that I won't die of Diabetes but will die of Pancreatitis"_ Really the answer to your question lies in the above sentence - if that Consultant was at the top of his game. I'm not sure that many people actually die from diabetes, rather than from other medical problems exacerbated by diabetes and its one of those other problems that gets written into the death certificate; that certainly was the case for my late brother who was profoundly ill from his T2 DM and had lost both his legs, but his death certificate states heart failure ... So perhaps your Consultant was literally correct, your future cert may well say pancreatitis, hopefully in a lot, lot more than 10 years time.

I do know that my surgery took longer than a heart transplant, was risky and wouldn't have been started if I hadn't been fit enough. So I imagine that they won't offer to remove your pancreas as a routine procedure. A friend who was a Theatre Sister in a Hepto Biliary (HPB) dep't saw many Whipples Procedures, but never a total pancreatectomy, since 10yrs ago she understood one couldn't survive for long without any pancreas. Luckily, for me, things have moved on.

I completely understand that you were mortified and now anxious about all of this. I also know that saying that is still just a platitude - it provides a moment of comfort that all too quickly disappears. I have recently been attending a "HOPE" course, sponsored by Macmillan as a follow-up for people recovering from cancer. I wanted help with "Mindfulness" in the vague aspiration that I could control my own stress levels better, knowing that stress is one of the 42 factors that affect blood glucose; the HOPE course had one mindfulness module within it, so someone thought it appropriate for me. Anyway, rather to my surprise, I've found it surprisingly therapeutic being in a room with other cancer patients, sharing our common bond, but otherwise having relatively little in common: different backgrounds, different cancers, most not cured & just holding their C at arms length week by week. 

It has reinforced my view that we can only control so much: I am doing, and will do, my best to manage my DM, even if I am a bit obsessive about it; I will keep myself fit (for my age) and in a good position to take further surgery or future chemo (but I desperately hope not - I really struggled with that); I will continue to manoeuvre to get the best identifiable care for myself. But despite all of that I know that I can't control everything; next Feb I fully expect to celebrate having outlived the first option outlined by the Churchill Hospital! After that ..... week by week, month by month, year by year ? Meanwhile I appreciate what I've got.

Hope this helps, a bit. Feel free to ask other Qs. It seems to me that you are doing all that you can; remember that stress (whether medical or emotional) plays havoc with your BG and prolonged elevated BG is definitely not good for anyone, generating irreversible damage.


----------



## Proud to be erratic (Dec 4, 2021)

Hi @jsw (again),

I previously said:
_I have seen only this week an announcement that NICE have confirmed that from now on all those entitled to Continous or Flash Glucose Monitoring will get it on the NHS - so that should end the post code lottery. I'll look for that reference on Friday_
I think I've jumped the gun. I saw a twitter message from Dr Partha Kar which flashed across my screen on 3 Dec, from which I over-enthusiastically stated the above summary. Having now rummaged a little more it seems that NICE have released draft guidelines on or about 24 Nov for wider use of flash or continuous glucose monitoring. See:



			https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.diabetes.org.uk/about_us/news/nice-draft-guidelines-recommend-wider-use-for-flash-and-cgm&ved=2ahUKEwi8lIWP1cr0AhVWQkEAHR__ACoQFnoECAgQAQ&usg=AOvVaw2oj4EHwt83PiiF-IrRCr5K
		


So this isn't going to be instant!


----------



## jsw (Dec 4, 2021)

Proud to be erratic said:


> So it sounds as if you're testing 1st thing after waking, before each meal and 2 hrs later (3x2=6), before driving out and back and immediately before sleep. Even if that isn't the exact logic, it is very good; well done. The 2 hrs after a meal isn't critical to being 120mins, but is helpful to be the same amount after each meal then you can get a good feel for whether your dosing calcs are sound (but as you are already finding the theory doesn't always match the reality, particularly if your activity levels vary from day to day).
> 
> I'm glad you've found MySugar. I used that app before I got my Libre 2 and found it very helpful. I have an Accuchek Mobile which is an integrated finger pricker and test meter, using a cassette allowing 50 tests. I phoned Roche and they provided the wifi attachment which transmits my results to MySugar. I also asked them for a second Accuchek Mobile which they happily provided once I confirmed I was testing 10x daily or more; I suspect their profit is in the test cassettes and the reader is a loss leader. Anyway I now have one upstairs and one in my travel pack; it's also a reserve should I drop it!
> 
> ...


Hi
I think you made the right choice with the operation, option 1 and 2 didn't seem appropriate for your drive.  Im really pleased to see that your getting to 2 years in Feb,  I was reading on a forum recently (and I think it was on the other diabetes website the .co.uk one) and it was a gentlemen who had a total removal of his pancreas in his early 50's and he was now in his early 70's so there seems to be no limits if your doing all the right daily processes, which I can tell you are so option 3 was right for you.
Thanks for the feed back on my question, and I am taking your point from this message and previous that you really need to find the right person/s within the NHS to get the support we all need,  I got a letter today from the consultant I was due to see in early Feb and he's can my appointment, so waiting for a new appointment which I hope will be soon. When I see him I will be asking for help with more specific teams, as you'd mentioned at the Royal Surrey Guildford, and of course the Libre 2 system which I know will be of great benefit.
In terms of the Mindfulness, I did recently have a couple of phone meetings with I guess a 'shrink' to discuss my anxiety levels and that helped (through my employer not offered to me on NHS) and I liked the method of grounding and thinking of the 'here and now' and not focusing on the future which we can't control (well not 100%) this has helped me and my anxiety has reduced from this, also I have recently (past 2 weeks) discovered Yoga, which I've never done before and its been amazing, nothing to do with Diabetes but my hips and shoulders are not in tip top condition (to much sport) so I'm not very flexible but its getting better each visit.


----------



## jsw (Dec 4, 2021)

Proud to be erratic said:


> Hi @jsw (again),
> 
> I previously said:
> _I have seen only this week an announcement that NICE have confirmed that from now on all those entitled to Continous or Flash Glucose Monitoring will get it on the NHS - so that should end the post code lottery. I'll look for that reference on Friday_
> ...


Hello

yes I saw that on the website yesterday so Im getting closer and I think I will get one once I see the consultant and do the DAFNE course, till then I won't give up on my 10 pricks a day!!


----------



## Proud to be erratic (Dec 4, 2021)

jsw said:


> Hello
> 
> yes I saw that on the website yesterday so Im getting closer and I think I will get one once I see the consultant and do the DAFNE course, till then I won't give up on my 10 pricks a day!!


Great. Test, test, test is essential if you want to deduce anything. 

Don't  forget that in the meantime you can do Bertie on line for carb counting. It shouldn't jeopardise your eligibility for a DAFNE course in the New Year.

In view of your delayed Consult, I do think you could do a lot worse than by reaching out to the Diabetes team at Frimley Park and get yourself under the umbrella of a DSN. Apart from getting routine guidance, they could become a good advocate to your Consultant for you being put on the short list of Libre 2 candidates.  

Now knowing you use MySugar I think specialists can look at your MySugar results and provide further analysis of your results; I understand from a phone and email dialogue with the support team at Diasend (or Glooko, who own Diasend) they are a carrier of MySugar and that they have unique identification codes for most or all Hospital spec diabetes teams & GP practices allowing data sharing. It's a one-way share, you give permission & they look at your output. You will do the same thing when you have Libre 2, whereby spec teams can log onto your LibreView data (confusingly using different identifying codes) and that is one of the mandatory requirements from the NHS before they authorise Libre 2 to individuals.


----------



## jsw (Dec 5, 2021)

Proud to be erratic said:


> Great. Test, test, test is essential if you want to deduce anything.
> 
> Don't  forget that in the meantime you can do Bertie on line for carb counting. It shouldn't jeopardise your eligibility for a DAFNE course in the New Year.
> 
> ...


Yes I think your right, I should try to contact the Frimley Team and seek a meeting.  Do you know if I have to go through my GP or DN as I don't hold out much hope with them being of any help.  Not sure If I can just phone Frimley and ask to talk to DSN without a invite letter etc?   I will try this week and see how I get on. Thanks for the Tip!

I was hoping the DAFNE course would advise on the mySugr data and eventually the ratio as I still couldn't work out from the data I have gained exactly what ration to insulin I am, it does seem to change somewhat from week to week, day to day, AM to PM LOL.


----------



## grovesy (Dec 5, 2021)

I belive you have to be reffered by your GP or DN.


----------



## Proud to be erratic (Dec 5, 2021)

@jsw , I didn't need a referral for Bertie online. If one is needed for DAFNE then connecting in with Frimley DSN can only help. I believe a DSN will be able to get some degree of interpretation from MySugar, almost certainly more than yourself at this stage in your DM career! 

A cold call to Frimley D team explaining that you are very adrift will help you make a start. If your GP would consolidate that with a referral, because you are T3c and need unique assistance, then that can only help.

Don't be too surprised if your BG is erratic. There is a lot to grapple with at this very early stage, beyond the mechanics of insulin ratios, timings and carb counting, particularly if your pancreatitis is confusing any normal pancreatic functions. Have you come across the 42 factors that can affect BG? I found a copy on the diatribe.org site, from an article by Adam Brown in Oct 2020. Until you've got a CGM it's very difficult to really see what's happening; finger pricks give you a momentary snapshot. CGM gives you the opportunity to identify your status: static, rising or falling and then the ability to respond accordingly - I regularly head off hypos thanks to Diabox by snacking when needed or increasing my activity when high. I also take corrective bolus if I can't bring my BG down; but I never stack insulin, ie take a correction within 5 hrs of my last bolus. I feel safe in doing that because my Diabox alarms warn me. I still get the odd hypo, but frequently it doesn't last long enough to cause difficulty. When my basal was wrong, my reactive responses were far worse.

When things feel really tough, take some comfort from knowing that you are not alone, nor the first to feel horrifyingly isolated. And CGM was not an option for anyone until recently, but people survived!


----------



## jsw (Dec 6, 2021)

grovesy said:


> I belive you have to be reffered by your GP or DN.


That will be a challenge then!


----------



## jsw (Dec 6, 2021)

Proud to be erratic said:


> @jsw , I didn't need a referral for Bertie online. If one is needed for DAFNE then connecting in with Frimley DSN can only help. I believe a DSN will be able to get some degree of interpretation from MySugar, almost certainly more than yourself at this stage in your DM career!
> 
> A cold call to Frimley D team explaining that you are very adrift will help you make a start. If your GP would consolidate that with a referral, because you are T3c and need unique assistance, then that can only help.
> 
> ...



No, not heard of the 42 factors but will do some research on this, Ive not been given any information about CGM, pumps, Libre 2, etc, I only got from the comments from GP and DN, 'Oh you won't get one of those!'.  
My daughter asked me the other day, why I don't inject insulin after the meal, she's is a school teacher and all her children (-10yrs) that are diabetic take insulin after food.. Its a question I have for my Dafne teacher when I get on it. 
Seems to be a better idea when you're in a restaurant or hotel etc.  Any thoughts?


----------



## Robin (Dec 6, 2021)

jsw said:


> My daughter asked me the other day, why I don't inject insulin after the meal, she's is a school teacher and all her children (-10yrs) that are diabetic take insulin after food.. Its a question I have for my Dafne teacher when I get on it.
> Seems to be a better idea when you're in a restaurant or hotel etc. Any thoughts?


Problem with insulin is, once you've put it in, you can’t take it out! So if you’re a child, and the teacher isn’t sure whether you’re going to eat all your school lunch or not, it makes sense to give the insulin after the meal, when you know exactly what’s been consumed. This can be a good idea when eating out as well, when you don’t quite know what will be on the plate, nor how long it’s going to take to arrive.
Problem with giving insulin after the meal is that it takes a while to get going, meanwhile, all the carbs you’ve just eaten are busy getting fed into the system by your digestion, and they can get a head start, spiking your blood sugars upwards until the insulin has a chance to catch up and deal with them. High spikes aren’t good for the body, so if you can avoid them by injecting beforehand, you'll get better overall control.
Sometimes a compromise can be, if you don’t know exactly what you’ll be eating, take part of the bolus up front, for the amount of carb that you’re certain you’re going to eat, and then top up afterwards if you’ve eaten more. Or calculate and inject the insulin for the first course when it arrives, then calculate the pudding separately if you decide to have one, and inject when it arrives. It means more injections, but I never really find that a problem, I’m so used to jabbing insulin in, it’s just second nature.


----------



## Proud to be erratic (Dec 6, 2021)

jsw said:


> No, not heard of the 42 factors but will do some research on this, Ive not been given any information about CGM, pumps, Libre 2, etc, I only got from the comments from GP and DN, 'Oh you won't get one of those!'.
> My daughter asked me the other day, why I don't inject insulin after the meal, she's is a school teacher and all her children (-10yrs) that are diabetic take insulin after food.. Its a question I have for my Dafne teacher when I get on it.
> Seems to be a better idea when you're in a restaurant or hotel etc.  Any thoughts?


Thoughts - certainly. 
Normally people on MDI pre-bolus, ie take our mealtime insulin before eating. How long before depends on the time of day and the individual. I generally need 45+ mins before breakfast, 30 mins before lunch and 15 mins before dinner, for NovoRapid. I now make use those of time gaps within my daily routines. For example before I go to bed I have a quick check of what I shall be having for breakfast and know when I wake up that I'm having a 13 (or whatever) unit bolus for breakfast food. I add corrections or factor down for anticipated activity, then bolus, get dressed, prep my breakfast, set up the coffee machine, etc and after 45 mins I'm usually seeing the downward trend that I want and start eating. CGM makes this really slick; but even the less sophisticated flash glucose monitoring (by reading my Libre 2 sensor with my reader or phone) is straightforward. Doing this by finger pricking is tough, bordering on unrealistic.

We all have a certain amount of insulin resistance; T2s have this in spades. That resistance means it takes a while for the insulin to take effect before the carbs arrive; the insulin has to break down from its natural hexamer molecular clusters and dissolve before getting out of body cells and into the bloodstream. Also the glycaemic index of the carbs plays a large part in the timing for the carbs / insulin mechanics. 

Timing is a key factor in the carbs insulin dosing equation. For me, and I think many others, not only is the body's insulin resistance variable for time of day but my insulin resistance increases when I'm already high; so if I pre-bolus with my BG at 12.0, my dose will include a food component, a correction, possibly an activity percentage and I will not eat anything until my BG has fallen to comfortably below 10 and Libre 2 (or my Diabox CGM) is showing a downward trend. Only today, before lunch, I had to wait 75 mins after my bolus and before I started eating; this can be very frustrating. My CGM was showing a gentle drop every 5 mins, then a rally and rise (!), then gentle drop, with another rally and rise until eventually I was clearly dropping and at 8.5. At home this is achievable (but is a source of friction for my wife - I understand why!). If I eat while 10 or above my BG might drop slightly but then rally and I end up high until my next meal or correction bolus.

 Sometimes, for me very rarely unless I'm already quite low, I might bolus immediately before a meal: once I've seen what it comprises and the portion size, then hasty carb count; eg in a hotel. But I try very hard to get a preview of any forthcoming menu, do a carb count or "guestimate" and pre-bolus. Any post meal bolus for me is solely as a correction, at least 5 hrs after any previous bolus to avoid what is known as "stacking" (insulin on top of active insulin); I would rather eat very sparingly (be hungry?) than risk bolus doses compounding and catching me out. But, my DM is extremely brittle and I will be cautious rather than too bold.

I can't explain why it's different for school children, perhaps their natural insulin resistance is lower. Perhaps insulin dispersal is markedly quicker in children's metabolic processes. Is it different for all children? Children have a priority from the NICE guidelines for pump eligibility, but that's a digression. Maybe your teacher daughter can ask some of her pupils about this? They can be deceptively savvy about their condition.


----------



## Proud to be erratic (Dec 6, 2021)

Robin said:


> Problem with insulin is, once you've put it in, you can’t take it out! So if you’re a child, and the teacher isn’t sure whether you’re going to eat all your school lunch or not, it makes sense to give the insulin after the meal, when you know exactly what’s been consumed. This can be a good idea when eating out as well, when you don’t quite know what will be on the plate, nor how long it’s going to take to arrive.
> Problem with giving insulin after the meal is that it takes a while to get going, meanwhile, all the carbs you’ve just eaten are busy getting fed into the system by your digestion, and they can get a head start, spiking your blood sugars upwards until the insulin has a chance to catch up and deal with them. High spikes aren’t good for the body, so if you can avoid them by injecting beforehand, you'll get better overall control.
> Sometimes a compromise can be, if you don’t know exactly what you’ll be eating, take part of the bolus up front, for the amount of carb that you’re certain you’re going to eat, and then top up afterwards if you’ve eaten more. Or calculate and inject the insulin for the first course when it arrives, then calculate the pudding separately if you decide to have one, and inject when it arrives. It means more injections, but I never really find that a problem, I’m so used to jabbing insulin in, it’s just second nature.


Thanks for clarifying @Robin . 

Seems to me to be particularly bad for children to post bolus, setting them on course at a very young age for extra time out of range and high, leading to hyperglycaemic long term problems. But maybe it's Hobson's choice in the school environment.

Are you using Libre?


----------



## Robin (Dec 6, 2021)

Proud to be erratic said:


> Thanks for clarifying @Robin .
> 
> Seems to me to be particularly bad for children to post bolus, setting them on course at a very young age for extra time out of range and high, leading to hyperglycaemic long term problems. But maybe it's Hobson's choice in the school environment.
> 
> Are you using Libre?


I think our management will always be a compromise over what would be ideal and what is practical. 
 I do use a Libre, I started off self funding it, and I had to push and then keep nagging to get it on prescription. Its been a complete game changer. Like you, I prebolus for breakfast at least 45 minutes before I eat, because my Blood Glucose starts rising the minute I wake up, as my liver starts releasing glucose to gear up for the day. It takes 45 minutes for the insulin to kick in sufficiently to counteract the speed of the rise, and as soon as I see it turn the corner and start to drop, I eat. At other meals, I bolus abut 10 minutes before I eat, but will have been keeping an eye on my levels, so if I felt I was heading upwards, I’d bolus sooner.
 I also have the advantage of being the cook in our house, so if my levels are high, I can skip the carby elements of what I'm serving. It would seem from what you’ve said, though, that generally my blood sugar is less ‘brittle' than yours. I think it helps me that although I don’t overly restrict my carbs, I don’t tend to eat massively carb-heavy meals. And if I've got to go out first thing, I will have something like scrambled egg, or an avocado for breakfast, so that I don’t get a carb spike before the insulin is working.


----------



## rebrascora (Dec 6, 2021)

@Proud to be erratic It is really interesting to read your account because my diabetes management is very similar to both @Robin's and yourself, but like Robin I reduce my carb intake to help keep things more stable and prevent high peaks and drops. Again 45mins prebolus at breakfast with Fiasp but it was over an hour with NR. I jab before I get out of bed and then have a routine to take up the time and watch for the Libre to tell me levels are starting to drop and have breakfast ready to eat for when Libre shows the insulin is working. I am not so sure it is insulin resistance which caused this delay, but the fact that the insulin is having to work against a strong tide of glucose release from the liver. I inject an extra 1.5-2 units every morning to deal with that (Foot on the Floor syndrome) on top of the breakfast bolus. If I am skipping breakfast, I still need those 2 units, so I don't consider it part of my breakfast ratio. At other times of day it is usually 20 mins prebolus time but the other night I had to wait 2 hours for 5.5 units of Fiasp to bring me down from 9.2 to 6.5 before I could eat a bowl of soup that was just 20g carbs. No idea why I was getting such a glucose dump then, but very frustrating and like you, it is not worth the aggravation of eating when my levels are above 8 if I can help it at all. 
Unlike you, I have no problem stacking insulin if I can see my levels not responding within the time scale they should and that 5.5 was actually a 3.5 and a 2 stacked, because at the 1 hr point my levels had gone up to 9.7 instead of down. Because I eat relatively low carb usually about 70g a day I can be reasonably confident of using small doses and not getting it too wrong and Libre makes all the difference in the world to my confidence in using extra bolus insulin when it is clear I need to, even if it is only an hour or 2 after a previous injection. 

I am not advocating this for others as stacking can be very dangerous but for me, not being afraid to stack when Libre shows me that my levels are going in the wrong direction (and I would like to eat that evening) enables me to maintain better control and I very seldom go low in such situations and if I do it is minor because only small doses involved.

@jsw Many of us self funded Libre before we got it prescribed. It is a wonderful bit of kit when you understand how to use it and it's limitations. Worth putting on your Christmas present list.   I used birthday money initially for mine and could not have been bought a better present/gift/toy!


----------



## Prolaf (Dec 6, 2021)

Hi all, 

I'm newly diagnosed and new to the forums so please forgive any decorum related issues. Just been diagnosed after my HbA1c numbers more than doubled between pre-op assessments for surgery on something else. Seem the pancreas that got badly damaged by a pseudocyst after gallstones invaded (and were fished out by MRCP(?)) some 6 years ago  is finally beginning to give up the ghost. Had levels of 18.1 which have reduced since I switched diets and went low carb and removed processed food, so they've put me on 8 units of 'background' insulin a day. 

Any idea what the general process is from here in the NHS for getting further checks done etc as the GP has just handed me over to the local hospital team about 2 weeks ago? Like @jsw most of the info I'm gleaming is from the internet as I was just given the background insulin and have had 1 follow up call from the nursing team. 

Cheers,
Olaf


----------



## Proud to be erratic (Jan 5, 2022)

Robin said:


> I think our management will always be a compromise over what would be ideal and what is practical.
> I do use a Libre, I started off self funding it, and I had to push and then keep nagging to get it on prescription. Its been a complete game changer. Like you, I prebolus for breakfast at least 45 minutes before I eat, because my Blood Glucose starts rising the minute I wake up, as my liver starts releasing glucose to gear up for the day. It takes 45 minutes for the insulin to kick in sufficiently to counteract the speed of the rise, and as soon as I see it turn the corner and start to drop, I eat. At other meals, I bolus abut 10 minutes before I eat, but will have been keeping an eye on my levels, so if I felt I was heading upwards, I’d bolus sooner.
> I also have the advantage of being the cook in our house, so if my levels are high, I can skip the carby elements of what I'm serving. It would seem from what you’ve said, though, that generally my blood sugar is less ‘brittle' than yours. I think it helps me that although I don’t overly restrict my carbs, I don’t tend to eat massively carb-heavy meals. And if I've got to go out first thing, I will have something like scrambled egg, or an avocado for breakfast, so that I don’t get a carb spike before the insulin is working.


Thank you @Robin and apologies for my delayed acknowledgement. I've noted your strategy for a low carb b'fast if you have to go out; that make a lot of sense (hindsight is a wonderful thing). In my early days I tried very hard to be moderately consistent, ie reduce those variables where I can reduce them; hence my standard but varied cereal, milk and fruit breakfast. I've just woken up to the obvious: I don't have to be so rigid now that I have Libre2 and CGM.


----------

