New to all this !!

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Bobbingbuoy

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Type 3c
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Good evenin all. So I’m 14 days in after being told I had diabetes, labelled Type 2 but told by the 2 consultants and 2 separate nurse specialists it’s type 3c due to my necrotising pancreatitis. I’ve lost 1 stone 5lb in 18 days and haven’t particularly changed my diet aside from the odd no added sugar fizzy drink, so it seems to be around a pound a day coming off. Bloods were going up above 33.3 ( device only goes up to 33.3 ) this week so been back to diabetes team and my GP.

14 days ago I was put on 10 units of Toujeo once per day and one 500mg Metformin tablet once per day. As the figures have been rising all week they’ve now increased my Toujeo to 14 units once a day, Metformin to 500mg tablet twice a day, and now Novorapid 4 units with every meal ( so 3 times a day ). My morning bloods when I woke up this morning were 21.9 and again above 33.3 this evening , so still work in progress.

They’ve ordered Freestyle Libre 2 for me, which should take around 7 days to arrive. I know it’s different everywhere but they said NHS won’t provide unless you’re having more than one injection of insulin per day ? I don’t know but it’ll save me paying £100+ for it every month.

The 2 month headache I’ve had seems to be subsiding over the last 3 days but my eyes are still struggling to focus a bit, I’m still a bit wobbly on my feet but it doesn’t seem as bad, despite my bloods still being high ? I did a quarter of a mile walk last Saturday and was knackered later on ( from somebody who regularly did 3-12mile walks ! )

Having been off work for 9 months since being put into a coma due to severe Covid, ( 4 incidents of cpr and defib due to cardiac arrest, 2 major DVT’s and having to have dialysis and 5 full blood transfusions , Necrotising Pancreatitis due to the Covid, bi-lateral pneumonia numerous times in last 9 months , healthy before all this !!) ) this new diagnosis has all happened in the last 2 weeks pretty much , I returned to work on a very small phased return ( 3 x 3.5 hour shifts on computer at home last week ! ) and this diabetes thing crops up totally unexpected after my second day back in work ??? HR and Manager want a 2nd ( new diagnosis ) review by Occupational Therapy to see if I’m fit to work on computer at home ( I think it’s just an excuse to get rid of me tbh, just to top off the run of bad luck !) although I must add after the last nine months I now look at the worst in everything and I definitely have a heightened stress and reaction level !!

Feeling slightly better than I did last week and much better than I have the last 2-5 weeks. Got my regular Pancreatic review next week, consultant doesn’t even know about all this new stuff !!

Sorry for the long rambling on, I’m new to all this and there’s so much to learn and take in. Looking forward to reading your posts and learning from you all, thanks
Rob
 
Inka said:
Welcome @Bobbingbuoy 🙂 What a lot you’ve been through! I’m glad you’re feeling a little better physically these last few days. Once they get your insulin right, you should feel more yourself. Are you also on Creon?

I’ll tag some Type 3c people for you - @Proud to be erratic @soupdragon @Wendal
Click to expand...
Hi Inka, thanks for the message. Yes I’ve been on 3 X 25000 capsules of Creon 3 times a day with food since I was in high dependency ( after ICU ) ……along with Colchicine ( gout ) Edoxaban ( due to DVt’s ) Ramapril ( as I’ve now developed high blood pressure ) Allupurinol ( 400mg instead of usual 100mg ) Furosimide ( for the pneumonia on the lungs ) Attorvastatin ( as they’ve found a problem with my lipids, seeing consultant next Tuesday ) my heart had to be restarted a few times in ICU and I’ve had a high resting heart rate since then ( 130-138bpm resting ) they put me on verapamil in November but I had a severe reaction within 3 days so taken off them and still waiting for a follow up.
The whole experience has been a nightmare, the treatment I’ve received from 2 hospitals and my GP has been beyond belief ??? People literally would not believe the lack of competency, communication or care for a critically ill patient ?? It’s been a real struggle with them to say the least !
 
Bobbingbuoy said:
They’ve ordered Freestyle Libre 2 for me, which should take around 7 days to arrive. I know it’s different everywhere but they said NHS won’t provide unless you’re having more than one injection of insulin per day ? I don’t know but it’ll save me paying £100+ for it every month.
Click to expand...
Are you getting libre on prescription or have you just ordered the one off trial?

T2 aren’t eligible for libre on prescription unless on more than one injection of insulin per day, and as you say you’re labelled T2 that could be a barrier. Hopefully being T3C helps you get it prescribed.
 
Lucyr said:
Are you getting libre on prescription or have you just ordered the one off trial?

T2 aren’t eligible for libre on prescription unless on more than one injection of insulin per day, and as you say you’re labelled T2 that could be a barrier. Hopefully being T3C helps you get it prescribed.
Click to expand...
Hi, yes I’m now on 4 injections a day so qualify for the Libre 2 on prescription
 
Welcome from myself, @Bobbingbuoy, your introduction is very telling about the challenges you've been through.

Alas you now have an essential learning process ahead of you, mainly in the management of your blood glucose through your Toujeo (basal = background) and NovoRapid (bolus = rapid) insulins. Those 4 (typically) daily injections you might see recorded as Multiple Daily Injections (MDI) and they at least should secure your Continuous Glucose Monitor (CGM), which is your Libre 2. Because you are T3c you ought to routinely get CGM, whereas insulin dependent T2s are not automatically eligible. Its wrong, but is what the Guidance currently defines. I'll say a bit more about CGMs later.

One difference you have from others who have Diabetes is the damage to your Pancreas, not only the loss of the hormone insulin but also the vast majority of your digestive enzymes; hence your need for Creon. Your initial prescription might have defined that you need 3 x 25k Creon capsules daily with meals but those quantities are merely somebody's guess to get you started. You will need as much as you need to provide you with good and regular bowel movements. The quantities could be less but could be a great deal more. I have no pancreas at all and I need at least 1 capsule with a milky or creamy coffee and a carton of 100 x 25k capsules last about 3 days. The Creon is known in medical parlance as Pancreatic Enzyme Replacement Therapy (PERT) and is absolutely essential. The acceptable bowel movements are important, but the essential part of the PERT is that all food that you eat is properly digested and thus all carbs, proteins and fats are fully digested and metabolised into the essential elements and minerals that we need to stay alive. Also managing your blood glucose needs a large element of confidence that carbs are being fully converted into glucose and thus the insulin you are taking will be appropriate for the glucosethat come into your blood from the digested carbs. Apart from pancreatitis causing the loss of insulin and digestive enzymes there are a other hormones that uniquely come from the pancreas and their production can be impaired or totally stopped by damage from pancreatitis. When you want to know more about these extra consequences just ask. Right now you've already got a lot to take stock of and manage.

Right now you have been put on fixed insulin doses and those dose sizes will need to be adjusted over the coming weeks and possibly months until YOUR body is getting the right amount of insulin for YOUR needs. I stress this is fully about YOU since we are all very different in how we manage the digestion of foods, particularly carbs and thus how much insulin we will need plus we are each different in how our bodies individually manage the injected insulin. This will become clearer to you in the coming weeks.

I'm not sure from your first post if that Libre is being ordered through your GP Surgery or an initial order has been done by your Hospital. In theory prescribing CGM is now totally at the discretion of a GP but sometimes GPs feel more comfortable to be instructed by a Hospital Consultant to start the prescription ordering. It will come from your local Pharmacy (which could be within your GP Surgery or from a chemist of your convenience). Most people are only prescribed 2 Libre packs at a time; each pack has one sensor that normally lasts 14 days so you only have at best 28 days CGM capacity at a time. This "taut" prescribing can be a nuisance sometimes, but seems to be (in England at least) a fairly stringent constraint on GPs from the NHS.

I am sure you will have many, many questions about things that might seem too trivial to ask. Well please don't be inhibited about asking questions - no question is stupid and there are a lot of members on this forum who have each not only been through the learning mangle you are just getting into but who are happy enough to offer their tips and tricks for making their own lives a bit more straightforward. So if something is bothering you do ask. Good luck; you deserve some!
 
Glad you've found us @Bobbingbuoy
I'm also Type 3c following necrotising pancreatitis.
I was told that I had diabetes before I left ICU and was treated with insulin from the start. It must be so frustrating to have just got back to work and now have this to start to get to grips with. I do appreciate how much hard work it has been to get to the point where you can return to work.

When you mention your diabetes team is this at a hospital (a team with endocrinologist and Diabetes Specialist Nurses who treat people with Type 1)? Hoping from your comments that that is the case. I'm treated as if Type 1 although the issues with absorption and Creon can also make things interesting.
I attend the diabetes clinic at the same hospital where I was treated for pancreatitis. It's a specialist pancreatic centre so they see quite a few Type 3cs.

Glad to hear that they are adjusting your insulin doses and that you now have Novorapid to take with your meals. The general plan is to bring blood glucose levels down fairly slowly to avoid damage to small blood vessels in eyes and kidneys etc. At some point you'll start to match the amount of Novorapid to the carbs you eat, which should allow you to eat pretty normally.
It's not unusual for your vision to be affected as your blood glucose levels reduce so hopefully that will improve over time.

Hoping that you have a positive pancreatitis appointment next week.

If you have any questions please ask. We all appreciate that there is a lot to take on board at the start. It does get easier!
 
Proud to be erratic said:
Welcome from myself, @Bobbingbuoy, your introduction is very telling about the challenges you've been through.

Alas you now have an essential learning process ahead of you, mainly in the management of your blood glucose through your Toujeo (basal = background) and NovoRapid (bolus = rapid) insulins. Those 4 (typically) daily injections you might see recorded as Multiple Daily Injections (MDI) and they at least should secure your Continuous Glucose Monitor (CGM), which is your Libre 2. Because you are T3c you ought to routinely get CGM, whereas insulin dependent T2s are not automatically eligible. Its wrong, but is what the Guidance currently defines. I'll say a bit more about CGMs later.

One difference you have from others who have Diabetes is the damage to your Pancreas, not only the loss of the hormone insulin but also the vast majority of your digestive enzymes; hence your need for Creon. Your initial prescription might have defined that you need 3 x 25k Creon capsules daily with meals but those quantities are merely somebody's guess to get you started. You will need as much as you need to provide you with good and regular bowel movements. The quantities could be less but could be a great deal more. I have no pancreas at all and I need at least 1 capsule with a milky or creamy coffee and a carton of 100 x 25k capsules last about 3 days. The Creon is known in medical parlance as Pancreatic Enzyme Replacement Therapy (PERT) and is absolutely essential. The acceptable bowel movements are important, but the essential part of the PERT is that all food that you eat is properly digested and thus all carbs, proteins and fats are fully digested and metabolised into the essential elements and minerals that we need to stay alive. Also managing your blood glucose needs a large element of confidence that carbs are being fully converted into glucose and thus the insulin you are taking will be appropriate for the glucosethat come into your blood from the digested carbs. Apart from pancreatitis causing the loss of insulin and digestive enzymes there are a other hormones that uniquely come from the pancreas and their production can be impaired or totally stopped by damage from pancreatitis. When you want to know more about these extra consequences just ask. Right now you've already got a lot to take stock of and manage.

Right now you have been put on fixed insulin doses and those dose sizes will need to be adjusted over the coming weeks and possibly months until YOUR body is getting the right amount of insulin for YOUR needs. I stress this is fully about YOU since we are all very different in how we manage the digestion of foods, particularly carbs and thus how much insulin we will need plus we are each different in how our bodies individually manage the injected insulin. This will become clearer to you in the coming weeks.

I'm not sure from your first post if that Libre is being ordered through your GP Surgery or an initial order has been done by your Hospital. In theory prescribing CGM is now totally at the discretion of a GP but sometimes GPs feel more comfortable to be instructed by a Hospital Consultant to start the prescription ordering. It will come from your local Pharmacy (which could be within your GP Surgery or from a chemist of your convenience). Most people are only prescribed 2 Libre packs at a time; each pack has one sensor that normally lasts 14 days so you only have at best 28 days CGM capacity at a time. This "taut" prescribing can be a nuisance sometimes, but seems to be (in England at least) a fairly stringent constraint on GPs from the NHS.

I am sure you will have many, many questions about things that might seem too trivial to ask. Well please don't be inhibited about asking questions - no question is stupid and there are a lot of members on this forum who have each not only been through the learning mangle you are just getting into but who are happy enough to offer their tips and tricks for making their own lives a bit more straightforward. So if something is bothering you do ask. Good luck; you deserve some!
Click to expand...
Thank you so much for the detailed reply, that’s given me a better insight as to what’s going on. It’s a lot to take onboard at the moment ( on top of everything else prior to this diabetes ) but I’m looking forward to reading up on here , thank you
 
soupdragon said:
Glad you've found us @Bobbingbuoy
I'm also Type 3c following necrotising pancreatitis.
I was told that I had diabetes before I left ICU and was treated with insulin from the start. It must be so frustrating to have just got back to work and now have this to start to get to grips with. I do appreciate how much hard work it has been to get to the point where you can return to work.

When you mention your diabetes team is this at a hospital (a team with endocrinologist and Diabetes Specialist Nurses who treat people with Type 1)? Hoping from your comments that that is the case. I'm treated as if Type 1 although the issues with absorption and Creon can also make things interesting.
I attend the diabetes clinic at the same hospital where I was treated for pancreatitis. It's a specialist pancreatic centre so they see quite a few Type 3cs.

Glad to hear that they are adjusting your insulin doses and that you now have Novorapid to take with your meals. The general plan is to bring blood glucose levels down fairly slowly to avoid damage to small blood vessels in eyes and kidneys etc. At some point you'll start to match the amount of Novorapid to the carbs you eat, which should allow you to eat pretty normally.
It's not unusual for your vision to be affected as your blood glucose levels reduce so hopefully that will improve over time.

Hoping that you have a positive pancreatitis appointment next week.

If you have any questions please ask. We all appreciate that there is a lot to take on board at the start. It does get easier!
Click to expand...
Sorry, yes it’s a specialist diabetes team within the hospital who has ordered the libre 2. Basically I’ve felt awful for around 4 weeks, I went to my GP a couple of weeks ago and she advised me to go straight to A&E , by chance it just so happened the consultant doing the rounds that day on A&E was actually the lead diabetes consultant !! He started the ball rolling straight away and has referred me to ophthalmology, dietitian and set up my first meeting with the diabetes team the following morning. Apparently I’m going to have 2 different tests to confirm Type 3c but he said he’s 99.9% certain it’ll prove to be type 3c. It was barely 3-4 days later m they upped my insulin dosage and injections.
 
Bobbingbuoy said:
Sorry, yes it’s a specialist diabetes team within the hospital who has ordered the libre 2. Basically I’ve felt awful for around 4 weeks, I went to my GP a couple of weeks ago and she advised me to go straight to A&E , by chance it just so happened the consultant doing the rounds that day on A&E was actually the lead diabetes consultant !! He started the ball rolling straight away and has referred me to ophthalmology, dietitian and set up my first meeting with the diabetes team the following morning. Apparently I’m going to have 2 different tests to confirm Type 3c but he said he’s 99.9% certain it’ll prove to be type 3c. It was barely 3-4 days later m they upped my insulin dosage and injections.
Click to expand...
So helpful that the lead consultant was on duty! Good to hear that all the referrals have been put in place to support you.
 
Welcome to the forum @Bobbingbuoy. 🙂 So sorry to hear about your health problems. Glad you‘ve joined us!
 
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