Hello My name is Suzie, I have just been diagnosed with type 3c diabetes! I have had pancreatic cancer, and lots of bouts of chronic pancreatitis! I am awaiting an appointment for the Diabetis clinic! My doctor seems reluctant to start me on metformin because he said my weight is too low! I am 9st 7llbs after fighting the last 2 years to increase my weight! I went down to 7 stone and spent many a day crying because I couldn't get clothed to fit me! Anyway I would appreciate any information anybody has on type 3c and diet tips! Etc thankyou all in advance
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Type 3C diabetes
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rebrascora
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Hi Suzie and welcome.
It sounds like you have had a bit of a rough ride with your health to say the least. I hope you are starting to feel better.
@eggyg is our resident 3c poster girl but she is currently on holiday on Arran so may not pick up on this until she gets back.
Have you had surgery on your pancreas or non invasive cancer therapy (if that is the appropriate term)? Just wondering how much of it you have left and what functions it is able to perform? I know some Type 3cs need Creon to help digest food as well as insulin. Is that the case for you or perhaps you don't need insulin yet or maybe neither?
I very much doubt Metformin would be helpful to you as it mostly helps with insulin resistance (IR) and having been underweight by the sound of it, you are unlikely to have problems with that unless all the weight you have managed to put back on is fat.
If you can let us know what your HbA1c reading is and what if any medication you have been given for it that would help. If you don't have a BG meter for home testing, most of us find that an invaluable tool to help us manage our blood glucose on a meal by meal basis. It will show you which foods your body can cope with and which you need to reduce portion size or cut out. Generally it is carbs which cause us diabetics problems. It doesn't matter too much if they are sugars or starches, our bodies are pretty good at breaking them all down into glucose, so there is the obvious sweet stuff like sugar and cakes and biscuits and sweets but also bread and pasta and rice and potatoes and breakfast cereals. Even otherwise healthy foods like fruit in all it's forms (fresh dried frozen or juiced particularly) and porridge cause some of us problems and need to be restricted. It can be quite individual as to what and how much of it each of us can manage without spiking out BG levels too high and that is where the meter comes into it's own. By testing immediately before and then 2 hours after a meal we can see how our body coped with the carbs in that meal. If the post meal reading is more than 3 whole mmols higher than the pre meal reading, we ate too many carbs and need to look at reducing portion size.
Meters and particularly the test strips for them vary enormously in price but the two basic meters most often used and recommended by members of this forum for economy of use and reliability are the SD Gluco Navii or the Spirit Healthcare Tee2. Both are available online.
Think I have probably overwhelmed you with too much info already but hang in there, it will all start to make sense eventually. Any questions, ask away. We will be only too happy to help you.
It sounds like you have had a bit of a rough ride with your health to say the least. I hope you are starting to feel better.
@eggyg is our resident 3c poster girl but she is currently on holiday on Arran so may not pick up on this until she gets back.
Have you had surgery on your pancreas or non invasive cancer therapy (if that is the appropriate term)? Just wondering how much of it you have left and what functions it is able to perform? I know some Type 3cs need Creon to help digest food as well as insulin. Is that the case for you or perhaps you don't need insulin yet or maybe neither?
I very much doubt Metformin would be helpful to you as it mostly helps with insulin resistance (IR) and having been underweight by the sound of it, you are unlikely to have problems with that unless all the weight you have managed to put back on is fat.
If you can let us know what your HbA1c reading is and what if any medication you have been given for it that would help. If you don't have a BG meter for home testing, most of us find that an invaluable tool to help us manage our blood glucose on a meal by meal basis. It will show you which foods your body can cope with and which you need to reduce portion size or cut out. Generally it is carbs which cause us diabetics problems. It doesn't matter too much if they are sugars or starches, our bodies are pretty good at breaking them all down into glucose, so there is the obvious sweet stuff like sugar and cakes and biscuits and sweets but also bread and pasta and rice and potatoes and breakfast cereals. Even otherwise healthy foods like fruit in all it's forms (fresh dried frozen or juiced particularly) and porridge cause some of us problems and need to be restricted. It can be quite individual as to what and how much of it each of us can manage without spiking out BG levels too high and that is where the meter comes into it's own. By testing immediately before and then 2 hours after a meal we can see how our body coped with the carbs in that meal. If the post meal reading is more than 3 whole mmols higher than the pre meal reading, we ate too many carbs and need to look at reducing portion size.
Meters and particularly the test strips for them vary enormously in price but the two basic meters most often used and recommended by members of this forum for economy of use and reliability are the SD Gluco Navii or the Spirit Healthcare Tee2. Both are available online.
Think I have probably overwhelmed you with too much info already but hang in there, it will all start to make sense eventually. Any questions, ask away. We will be only too happy to help you.
eggyg
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- Relationship to Diabetes
- Type 3c
Hi @Suzieqs. I’m also type 3c due to pancreatic surgery to remove a pre cancerous tumour. I was put on metformin at first and diagnosed as type 2. As Barbara said, have you had surgery? A lot depends if you have any insulin remaining. Any questions please ask. I am on holiday but usually check in first thing in the morning and before bed. Back home on Saturday. Elaine.
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Hello @Suzieqs @eggyg I’m jumping in here at the mention of Type 3c. I’m now 6yrs out from Ampullary Adenocarcinoma and pylorus-preserving Whipples procedure. I’ve never been diagnosed as 3c, only type 2.
I was alerted by my GP in late 2019 with an A1c of 66mmol/mol. Rather than prescribing metformin he suggested a reduction of sugar intake which I did for 3 months and got A1c down to 54 mmol/mol which he declared he was ‘very happy’ with (early 2020). Around the same time I had a meeting with the whipples surgeon who also seemed fairly laid back about the A1c and suggested a retest every 1-2 years would be sufficient monitoring, all things elsewhere being equal. So I’ve not been tested since March 2020. I’ve never been referred to a diabetic clinic, only to be monitored by the GP practice nurse
@eggyg The thing that I remain uncertain about …….. given what 2 consultants (inc Oncologist) and a GP have said am I right to not worry too much as my ‘diabetes’ is actually at a very low level. Or …… should I be doing some other sort of testing on a daily basis (and making waves)?
@Suzieqs IF you‘ve had whipples re pancreatic cancer your weight loss is fairly typical. I lost nearly 3 stone post surgery/chemo and 6yrs on have only put half of that back. But confess that I do feel better for that. There is a fabulous UK whipples support forum available on Facebook, contact me if you’d like details.
I was alerted by my GP in late 2019 with an A1c of 66mmol/mol. Rather than prescribing metformin he suggested a reduction of sugar intake which I did for 3 months and got A1c down to 54 mmol/mol which he declared he was ‘very happy’ with (early 2020). Around the same time I had a meeting with the whipples surgeon who also seemed fairly laid back about the A1c and suggested a retest every 1-2 years would be sufficient monitoring, all things elsewhere being equal. So I’ve not been tested since March 2020. I’ve never been referred to a diabetic clinic, only to be monitored by the GP practice nurse
@eggyg The thing that I remain uncertain about …….. given what 2 consultants (inc Oncologist) and a GP have said am I right to not worry too much as my ‘diabetes’ is actually at a very low level. Or …… should I be doing some other sort of testing on a daily basis (and making waves)?
@Suzieqs IF you‘ve had whipples re pancreatic cancer your weight loss is fairly typical. I lost nearly 3 stone post surgery/chemo and 6yrs on have only put half of that back. But confess that I do feel better for that. There is a fabulous UK whipples support forum available on Facebook, contact me if you’d like details.
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eggyg
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- Type 3c
Hi and welcome.
I had a distal pancreatectomy which removed the other end to you. Tail and body, which actually produces most of the insulin cells. I became diabetic 3 years later and started on Metformin and told I was Type 2. My HbA1c was similar to yours at 60. It never went down unfortunately, I now know that the remaining tiny bit of pancreas I have left is now dead. I went on insulin seven years after my op. I’m now 13.5 years down the line. I was still treat as type 2. Only by research and coming on this forum do I now know that I am Type 3c and have been re categorised as such.
In my opinion, remember I’m not a medic and had a different procedure to yourself, I think it wouldn’t do any harm to test your blood glucose to see what’s going on. I’m assuming they haven’t offered you a testing kit, you can self fund them. I would speak to your docs again and ask about the prognosis for your diabetes. In the meantime, cut down on your carbs, not just sugar but potatoes, pasta, rice, bread etc. Type 3c is a pain in the butt for everyone concerned as it’s so variable and not many health care professionals know enough about it, in fact some know absolutely nothing! Since my diabetes diagnosis in 2010 I haven’t ever seen a diabetes consultant. I begged to be referred to a diabetes clinic and met an amazing DSN ( diabetes specialist nurse) who knew about Type 3c and got the ball rolling for me.
Hope that helps. Any questions fire away, I’ll do my best. Elaine.
Hello
Thankyou for your mail, you have explained a lot! I have had major surgery.. I had previously had a stent put in and the pain I had with that was excruciating! they tried to do a whipple operation...they managed to do most of it, ie change stomach around, remove gallbladder etc, but when it came to my pancreas they couldn't get near it as i had soo much inflammation and I nearly died twice as I lost too much blood! They couldn't find the stent!! 2 weeks later after still having excruciating pain they found the stent lodged in my stomach!! After a week in ICU and months of recovery and in and out of hospital, 6 months of chemo, the mass on my pancreas has disappeared, so I am really lucky! I do take creons and have to take up to 10 with each meal, hate them but needs must! Apparently my pancreas is more or less useless now, can't recall which either lypases or amylase but apparently in bloods it should be in its hundreds but mine are negligible according to my oncologist, they bombard you with so much its hard to take it all in! Anyway all this was approx 2/3 years in November, I have always put off discussing with them to have my pancreas removed as I want diabetic, now it's a conversation I am not looking forward to! I have bought a blood glucose machine but I haven't got a clue what to do with it! Its called a nexus!! I am being referred to a diabetic team for D3C so hopefully they will help me, hope I have answered your questions and thanks again for your information.
trophywench
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- Type 1
Amylase and Lipase are both digestive enzymes whereas insulin is a hormone so although most amylase & lipase is produced in the pancreas, not all of it is - both start in the mouth in saliva before you even swallow food let alone digest it.
The dear ole pancreas is a very hardworking organ which none of us ever considers until there is something up with it. Lots of people with and without diabetes still think that producing insulin is its sole function. Nope, none of em has only one function ....... (although you might be fooled into thinking so by the way some folks' brains appear to work or not work .... 😱 )
The idea generally about fingerprick testing blood glucose monitors, is to try and discover what happens to your blood glucose after eating that amount of carbohydrate at the mealtime - but how straightforward that might be when it's 3c, I would not attempt to hazard a guess. Think you need to don your 'Patient' head until you've seen your 3c team and be guided by their advice.
The dear ole pancreas is a very hardworking organ which none of us ever considers until there is something up with it. Lots of people with and without diabetes still think that producing insulin is its sole function. Nope, none of em has only one function ....... (although you might be fooled into thinking so by the way some folks' brains appear to work or not work .... 😱 )
The idea generally about fingerprick testing blood glucose monitors, is to try and discover what happens to your blood glucose after eating that amount of carbohydrate at the mealtime - but how straightforward that might be when it's 3c, I would not attempt to hazard a guess. Think you need to don your 'Patient' head until you've seen your 3c team and be guided by their advice.
Thankyou!
Chuckram
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- Type 3c
Hi Suzie - Just found this forum and become a member. I am type 3C after being diagnosed with borderline operable Pancreatic Cancer in March 2021. After 6 rounds of Chemo and only being given a 5% chance of having an operation and therefore survival, i was lucky enough to have shrunk the tumour sufficiently to go ahead with it. I had a total pancreatectomy and splenectomy, gall bladder, Duodenum and bile ducts removed with reconstruction of the stomach. Quite an operation of 12 hours .... Straight away in hospital i was given great help from a dedicated dietician and was allocated a diabetes team to help who have all been amazing. I am now on Tresiba (18 units in morning) and Novorapid before meals. I take 5 creons with each meal and 3 with snacks. I have also been on the libre sensor for 4 months through the NHS which has been a life changer. Meal wise, i just cant eat as much as i used to and do watch my intake of carbs BUT I rule my diabetes and my diabetes doesn't rule me....something another patient told me in hospital. I still drink alcohol although not as much, still have the occasional treat including chocolate and biscuits. I count my carbs with the Carb and Calorie Counter book and have the app on my phone. All of which helps to control by sugars. I have to remember to take my little bag of tricks out (creons and needles) but generally this doesn't stop me going to restaurants and pubs to enjoy life. Hope this helps a little .. Simon
Proud to be erratic
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Hello @Chuckram ,
I'm T3c after a total panc'y in Feb 2020. You might not get a response from @Suzieq, since she doesn't seem to have been on the forum since May 2021.
Anyway my background is not dissimilar to yours, I eat pretty much what I like (although a good steak has twice turned out to be pretty unmanageable by my innards, despite loads of Creon) and like you I drink alcohol, but not very much any more. I take about 30 25k Creon capsules daily and know when I've not taken enough!
I've had Libre 2 for over a year and lean heavily on it to guide me about trends; I'll prebolus using the L2 results if they are in the zone 5.5 to 8.5, otherwise I'll always finger prick - for me L2 frequently starts 2-3 mmol/L high then steadily falls until well low of actual BG; so it's the trends not the numerical accuracy that I closely watch.
If there is anything you'd like to compare notes on, feel free to ask.
Regards
Hi Suzie. I am also type 3c. I had a total pancreatectomy ,duodenum and bile ducts removed Sept 2021. Previous to that I’d had a distal pancreatectomy/spleen removed.
I’m still very much on a massive learning venture.
I take tresiba and nova rapid and creon with every meal and snack.Im also on the libre 2,absolute god send.My weight has dropped by 1 and a half stone but was told to expect this. My appetite is not what it was and never will be. I eat pretty much what I want but healthily and only small portions . I steer clear of chocolate and sweets because I know my levels will rocket.
Fatigue is a big issue for me. I can have really different days even when I’ve done/ eaten pretty much the same thing. Last week in one 24 hr period I had to take 10 doses of insulin as my levels were in the high 20s, checked keytones every 2 hrs as they were rising,thankfully they eventually came down. My DSN sees all my readings and we couldn’t explain why it happened. Following days then had 3 horrible hypos.
Im also on the waiting list to have a knot and hernia repaired ,post op.
I’ve learnt to deal with each day as it comes.
Please ask any questions if you feel the need,I certainly did and the friendly members on here helped me enormously.
I’m still very much on a massive learning venture.
I take tresiba and nova rapid and creon with every meal and snack.Im also on the libre 2,absolute god send.My weight has dropped by 1 and a half stone but was told to expect this. My appetite is not what it was and never will be. I eat pretty much what I want but healthily and only small portions . I steer clear of chocolate and sweets because I know my levels will rocket.
Fatigue is a big issue for me. I can have really different days even when I’ve done/ eaten pretty much the same thing. Last week in one 24 hr period I had to take 10 doses of insulin as my levels were in the high 20s, checked keytones every 2 hrs as they were rising,thankfully they eventually came down. My DSN sees all my readings and we couldn’t explain why it happened. Following days then had 3 horrible hypos.
Im also on the waiting list to have a knot and hernia repaired ,post op.
I’ve learnt to deal with each day as it comes.
Please ask any questions if you feel the need,I certainly did and the friendly members on here helped me enormously.
Proud to be erratic
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Hi Judy, good to hear from you. I think you might not get a response from @Suzieq; it appears that she only posted 4 times and the latest was in May 2021. But this thread was reopened by @Chuckram (new to this forum this morning), who had a total panc'y in Mar 2021; scroll back to #13 in this thread for fuller info.
Really sorry to read that you are still struggling with various continuing problems, but glad you've got Libre positively helping you. Also pleased that you're well tied in to a DSN, even if between you the detective work is still "work in progress". I get the occasional inexplicable and stubborn high - as you say I also just deal with what is happening as it comes along. I do find these things are less alarming nowadays; and if I need more insulin - then so be it. I'm also waiting for my post op incisional hernia to be repaired; they've confirmed in writing it will be done, hopefully during the coming summer months.
Could your recent 3 horrible hypos be caused by the recent much warmer weather? Have you reviewed or tested your basal recently? With Tresiba it is best to get it optimised for the 'night shift' and be ready to make small bolus adjustments during the day, when meals are not necessarily either standard in content or at fixed times, anyway. Plus activity levels inevitably vary from day to day. Might be worth asking your DSN about this. That said, my DSN has never commented on the principles of basal reviews; might be too modern for her old school style. I now have half unit reusable NovoEcho pens, with disposable cartridges, for both my NovoRapid and Tresiba - different colours, huge array of choices [blue or red]! Apart from finer tuning of doses the insulin cartridges take up a lot less fridge space and there is less overall waste to be recycled. Seems to be pretty cost neutral for the NHS, provided the pens last more than 3 yrs.
One particular thing I've made progress with in my DM management is correlating 'activity and/or exercise' to bolus dosing. My current Endo is a co-author of a recent technical paper on the effects of activity with insulin and he recognised that a lot of my former erratic BG was probably from over-bolusing when I'm going to be busy. So now I calc my dose, then often apply an activity factor of up to 50% overall reduction. This has definitely helped and hypos are now very infrequent; when they do occur they are very shallow and short lasting. He also has encouraged me to set a slightly higher target and thus stay a little further away from hypoland. My overall HbA1c remains reasonable and time in range in the high 80s; so must be doing something right!
Anyway, enough rambling on for now. Take care.
Hi Roland, nice to hear from you. Oh yes, didn’t look at the dates of the posts,blonde moment.
No, I don’t think my nasty hypos were weather related,very unexplained though. Yes, we have reviewed my basal dose and upped it to 19,just starting to kick in now so hopefully that will reduce/steady my highs. We also discussed activity and my DSN suggested reducing my bosul by 50%when the activity is more strenuous. I’m lucky that she is on the ball.
Never heard of the half unit nova echo pens. Did your doctor suggest these?.
Pleased that you are managing all the obstacles of diabetes and progressing well.
Take care,Judy.
No, I don’t think my nasty hypos were weather related,very unexplained though. Yes, we have reviewed my basal dose and upped it to 19,just starting to kick in now so hopefully that will reduce/steady my highs. We also discussed activity and my DSN suggested reducing my bosul by 50%when the activity is more strenuous. I’m lucky that she is on the ball.
Never heard of the half unit nova echo pens. Did your doctor suggest these?.
Pleased that you are managing all the obstacles of diabetes and progressing well.
Take care,Judy.
Proud to be erratic
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Hi Judy,
I originally heard about half-unit pens from my T1 cousin, then somewhere in this forum, then rummaged to find out more. Not all insulin providers do half unit pens. If you decide to switch, make sure you get 2 pens (same colour) for the first insulin that you change. Because the pen lasts 4 yrs or more, it is essential that you have a reserve, from the outset. With disposable pens a single pen failure is of little consequence, just ditch and get another from the box. But you can't do that if you only have one pen; I'm not saying failures are frequent, but one reserve is absolutely vital. Then if you switch the other insulin get a different colour pen; I deliberately didn't get a 2nd in the other colour reasoning that I have one true reserve and could use the wrong colour reserve pen as a temporary fix while a replacement is provided. I could, of course put tactile markers on one pen to distinguish it from another - but that involves even more thought!! There are moments when life is too short .... However, I have tested my reserve pen, as a precaution. This all makes me sound a bit obsessive !!
A further bonus of these NovoEcho pens is that they store a simple record of the dose and time last used in the end of the pen. So when you have a moment of "did I actually take my bolus (or basal)?" there is the opportunity to check on the pen and reassure oneself.
It sounds as though you've got a great DSN. Interesting how we are all each so different. I only need 10 units of Tresiba daily and am planning to reduce that to 9.5 shortly. Of course, because the Tresiba lasts for up to 40 hrs, there is a degree of accumulation day by day (equivalent to insulin stacking) so I've probably got 15-20 units on board each time I take my daily basal - but happily I don't really need to think about that. I take my basal c.8am and get a very steady night pattern.
All for now, off to lunch with a friend and former colleague from 45 yrs ago. Bit of catching up to do. Take care.
I originally heard about half-unit pens from my T1 cousin, then somewhere in this forum, then rummaged to find out more. Not all insulin providers do half unit pens. If you decide to switch, make sure you get 2 pens (same colour) for the first insulin that you change. Because the pen lasts 4 yrs or more, it is essential that you have a reserve, from the outset. With disposable pens a single pen failure is of little consequence, just ditch and get another from the box. But you can't do that if you only have one pen; I'm not saying failures are frequent, but one reserve is absolutely vital. Then if you switch the other insulin get a different colour pen; I deliberately didn't get a 2nd in the other colour reasoning that I have one true reserve and could use the wrong colour reserve pen as a temporary fix while a replacement is provided. I could, of course put tactile markers on one pen to distinguish it from another - but that involves even more thought!! There are moments when life is too short .... However, I have tested my reserve pen, as a precaution. This all makes me sound a bit obsessive !!
A further bonus of these NovoEcho pens is that they store a simple record of the dose and time last used in the end of the pen. So when you have a moment of "did I actually take my bolus (or basal)?" there is the opportunity to check on the pen and reassure oneself.
It sounds as though you've got a great DSN. Interesting how we are all each so different. I only need 10 units of Tresiba daily and am planning to reduce that to 9.5 shortly. Of course, because the Tresiba lasts for up to 40 hrs, there is a degree of accumulation day by day (equivalent to insulin stacking) so I've probably got 15-20 units on board each time I take my daily basal - but happily I don't really need to think about that. I take my basal c.8am and get a very steady night pattern.
All for now, off to lunch with a friend and former colleague from 45 yrs ago. Bit of catching up to do. Take care.
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