Type 3c diabetes

[Galli]

Hello.

I have chronic pancreatitis secondary to gallstones and now been diagnosed with type 3c diabetes.even after 6 months of insulin my blood sugar average is 17-22 even hitting the 30s sometimes. I dont think I've seen them in single figures ever. Am I doing something wrong? I'm using 35units Tresiba each day. I cant take oral meds as i dont have enough pancreas for them to work. I was mean to see the diabetic nurse and community nurse last week but appt was cancelled due to Corona. I'm struggling to say the least

 

[everydayupsanddowns]

Hello @Galli

Sorry to hear about the difficult situation you are finding yourself in. It sounds to me as if your insulin doses are not yet sufficient to balance with your body’s needs, and the food you are eating.

We have a few experiences 3c’s on the forum, and I will tag in @eggyg who is our 3c ‘poster girl’ and may have some practical pointers.

6 months is a long time to have been living with such high BGs, as those levels are probably making you feel pretty grim - tired, irritable, drained and needing the loo a lot.

Have you been given ‘insulin-to-carbohydrate ratios’ and ‘correction factors’ to adjust your own doses?

Are you in both long acting / background and quick acting / mealtime insulins?

Do you have the ability to check for ketones?

Such unfortunate timing for you to be facing this while the health service is under such strain

 

[Galli]

Hello @Galli

Sorry to hear about the difficult situation you are finding yourself in. It sounds to me as if your insulin doses are not yet sufficient to balance with your body’s needs, and the food you are eating.

We have a few experiences 3c’s on the forum, and I will tag in @eggyg who is our 3c ‘poster girl’ and may have some practical pointers.

6 months is a long time to have been living with such high BGs, as those levels are probably making you feel pretty grim - tired, irritable, drained and needing the loo a lot.

Have you been given ‘insulin-to-carbohydrate ratios’ and ‘correction factors’ to adjust your own doses?

Are you in both long acting / background and quick acting / mealtime insulins?

Do you have the ability to check for ketones?

Such unfortunate timing for you to be facing this while the health service is under such strain

Hiya

Thank you for your reply. Yes I'm generally feeling awful to be honest.

I'm only using 1 long acting insulin 35units a day. My appt last week was to be taught the carbohydrates ratio and short acting insulin so I havent done that yet.

I was admitted to hospital a few times with 30+ blood sugars and the drs would say I need a fast acting insulin and the diabetic nurse will see me. When she came to the ward she said it's not something she can start me on in hospital while I'm unwell so get referred back to my community nurse. Unfortunately shes very open about the fact shes not confident with my kind of diabetes and always needs to call someone then call me back but it gets missed sometimes

 

[everydayupsanddowns]

Hiya

Thank you for your reply. Yes I'm generally feeling awful to be honest.

I'm only using 1 long acting insulin 35units a day. My appt last week was to be taught the carbohydrates ratio and short acting insulin so I havent done that yet.

I was admitted to hospital a few times with 30+ blood sugars and the drs would say I need a fast acting insulin and the diabetic nurse will see me. When she came to the ward she said it's not something she can start me on in hospital while I'm unwell so get referred back to my community nurse. Unfortunately shes very open about the fact shes not confident with my kind of diabetes and always needs to call someone then call me back but it gets missed sometimes

How awful!

So frustrating to be passed from pillar to post with no one actually tackling the issue 😡

It seems to me that until you can get access to a fast-acting mealtime dose, and some instruction/education on how to use it, the easiest way to reduce your high BG would be to adopt the sort of low carb eating approach favoured by many T2s here. You haven’t got the insulins available to you to give an extra ‘push’ following meals, so instead you could try to make the potential rises from meals as small as possible

You can start by just keeping notes of your meals, and making an estimate of their total carbohydrate content.

Then do a BG check immediately before and again 2 hours after the first bite. The numbers themselves are less important than the ‘rise’ - the difference between them. Then gradually reduce the total amount of carbohydrate in the meal (eg spoonful less rice, fewer potatoes, one slice of bread not two...) to try to make the meal rise only 2-3mmol/L from before-to-after.

Everyone is different, and you may find that some types of carb (bread, or potatoes say) are a nightmare, while others (basmati rice) may suit you better. But your ‘better’ ones will be unique. So you have to experiment.

Hope this gives you ideas of some things to try until you can get an appointment?

 

[Galli]

Thank you!

That is very helpful I will start this straight away.
So should I write down what the blood sugars are along with the food ? Or do separate diaries?

I'm going to ring my GP today to see if I can speak to my diabetic nurse. I've noticed the past few weeks I've been waking up with swollen hands and feet and it's on my watch list, I think she said kidneys can be affected by poor diabetic control?

Is it common to have a upset tummy when the sugars are really high? This seems to be a pattern for me.

I dont think I've helped myself as this is the first time I've looked it up and asked for advice in the past 6 months. But I really want to get on top of this.

 

[eggyg]

Hi @Galli and thanks @everydayupsanddowns for describing me as a girl! Sorry you have to be here. My Type 3C was also due to pancreatitis due to gall stones 19 years ago. Subsequently 13 years ago, I have had most of my pancreas removed and the third that was remaining is in effect dead. I see you mention that you don’t take oral medication because you don’t have enough pancreas for them to work. Can you explain what you mean by that? I am assuming you’re taking Creon though, please tell me you have been prescribed this. You don’t need any pancreas as these are digestive enzymes as when the pancreas is damaged or indeed non existent we can’t produce those ourselves and we would quickly become malnourished. If you are taking Creon these can raise your bloods unfortunately. I must admit I haven’t had numbers like that ever as I was producing a bit of insulin for quite a few years and now I don’t think I do, I have more experience to deal with it. I don’t have any experience of Tresiba as I am on NovaRapid and Levemir. May I ask what your daily diet is like? Unfortunately, like the majority of diabetics we’re often told not to eat sugary things but what isn’t mentioned is things like bread, potatoes, pasta, rice, cereal and certain fruits are all full of carbohydrates and turn to sugar, which then sends our blood glucose sky high. I think in the first instance take a look at your diet, do a bit research on lower carb eating. If that’s not the case, I would be calling your specialist and ask for a telephone consultation ASAP. Please ask away, we’ll do our best to help. Type 3c isn’t the “ best” type to have as so little is known about it, I know more than my HCP ( health care professionals)! Take care. Elaine. PS if it’s any help, I will be 60 in two weeks time, before lockdown, I was very active, fell climbing, walking, running after grandchildren etc. Life doesn’t end with any type of diabetes although I’ll admit it does feel like it at the time!

 

[eggyg]

Looks like I took so long to write my answer Mike has given you pretty much what I was saying!

 

[Davein]

Hi Galli
I'm diagnosed with autoimmune pancreatitis and continue to have attacks as no underlying cause has been found. Like Elaine I'm on Creon. My advice is the same as Elaines- diet management and it will take lots of time and patience to see how each food affects you BG levels, so constant checking necessary and plenty of test strips.
Initially, I was placed on oral meds which did work for a while but BG levels started going up into 20's and 30's. I was immediately put on insulin and gradually adjusted my diet and insulin intake (two injects a day) until my BG levels dropped. There is no magic overnight fix really you have to control your diet and however tempting some foods are you simply have to resist. Putting in the effort now will help to prevent future complications.
Even before this virus, I found some healthcare professionals somewhat lacking in their understanding type 3c and tend to treat you as T2 and with many practices now cancelling 'routine' appointments your situation becomes more difficult.

 

[Galli]

Hi @Galli and thanks @everydayupsanddowns for describing me as a girl! Sorry you have to be here. My Type 3C was also due to pancreatitis due to gall stones 19 years ago. Subsequently 13 years ago, I have had most of my pancreas removed and the third that was remaining is in effect dead. I see you mention that you don’t take oral medication because you don’t have enough pancreas for them to work. Can you explain what you mean by that? I am assuming you’re taking Creon though, please tell me you have been prescribed this. You don’t need any pancreas as these are digestive enzymes as when the pancreas is damaged or indeed non existent we can’t produce those ourselves and we would quickly become malnourished. If you are taking Creon these can raise your bloods unfortunately. I must admit I haven’t had numbers like that ever as I was producing a bit of insulin for quite a few years and now I don’t think I do, I have more experience to deal with it. I don’t have any experience of Tresiba as I am on NovaRapid and Levemir. May I ask what your daily diet is like? Unfortunately, like the majority of diabetics we’re often told not to eat sugary things but what isn’t mentioned is things like bread, potatoes, pasta, rice, cereal and certain fruits are all full of carbohydrates and turn to sugar, which then sends our blood glucose sky high. I think in the first instance take a look at your diet, do a bit research on lower carb eating. If that’s not the case, I would be calling your specialist and ask for a telephone consultation ASAP. Please ask away, we’ll do our best to help. Type 3c isn’t the “ best” type to have as so little is known about it, I know more than my HCP ( health care professionals)! Take care. Elaine. PS if it’s any help, I will be 60 in two weeks time, before lockdown, I was very active, fell climbing, walking, running after grandchildren etc. Life doesn’t end with any type of diabetes although I’ll admit it does feel like it at the time!

Hello!

Thank you for your reply.

On my last CT scan a few months back it shows I have a quarter of the head of the pancreas left but its digesting itself still. I have sphincter of Oddi dysfunction so enzymes are trapped in my pancreas.

Yes I take creon. 75000 units standard meals 25000 with snacks but I adjust that to what I am eating if its fatty or hard to digest foods. I've been on creon since 2015. I also take questran to treat bile salt malabsorption (bam) I just started that like 2 months ago. Its seems as times going on I'm struggling more with my GI

This is the 2nd insulin they have tried me on the first was insultard but that didnt help at all. Tresiba is helping alittle as before my numbers were always 24+ my HbA1c 2 months ago was 143. She said it was really high but I dont really understand the numbers. I'm trying to learn.

Yep I've been doing exactly that ive cut out sugary things and replaced with carbs. Since I joined this site like 2 hours ago i didnt really know the impact of them. I tend to it 4 or 5 small meals due to my pancreatitis otherwise I be sick and in pain. I dont drink alcohol and never smoked.

I've found myself in a vicious cycle. I dont eat properly so my BG is always high which triggers my pancreatitis and then I feel to unwell to want to do anything. Also I'm scared of doing anything and setting it all off. I'm glad you are living your life. Since 2015 mine has stopped. Im stuck but no want to try and live with this by my side not waiting for it to all just disappear. I'm guessing its not going to now...

 

[eggyg]

See my answer on your Newbie post. 🙂

 

[Galli]

Hi Galli
I'm diagnosed with autoimmune pancreatitis and continue to have attacks as no underlying cause has been found. Like Elaine I'm on Creon. My advice is the same as Elaines- diet management and it will take lots of time and patience to see how each food affects you BG levels, so constant checking necessary and plenty of test strips.
Initially, I was placed on oral meds which did work for a while but BG levels started going up into 20's and 30's. I was immediately put on insulin and gradually adjusted my diet and insulin intake (two injects a day) until my BG levels dropped. There is no magic overnight fix really you have to control your diet and however tempting some foods are you simply have to resist. Putting in the effort now will help to prevent future complications.
Even before this virus, I found some healthcare professionals somewhat lacking in their understanding type 3c and tend to treat you as T2 and with many practices now cancelling 'routine' appointments your situation becomes more difficult.

Hello

Thank you. I think I need to get some note books and start recording everything. Food is a big issue to me. I eat for any reason, comfort, emotions, tired, happy... I've always been obese since I was 11 ish. When I got the acute pancreatitis I was 125kg then. I went down to 92kg in about 3 months due to more intake. But I've noticed since being on creon and insulin my weight is back up to 128kg. I'm not a very active person even though I want to be insufferable with anxiety since ive been poorly.

I need to get some self control or this will kill me I'm sure of it.

 

[KARNAK]

Hello @Galli welcome to the forum, sorry you have been left in the proverbial lurch I am also on Creon but I`m a Type1. I think you have been given enough info to start with, try and keep your Blood Sugar Levels (BSL) and your food results together, ask any question any time you like.

 

[eggyg]

@mikeyB can you add anything? Perhaps a link to your pancreatitis forum.

 

[Galli]

Hello @Galli welcome to the forum, sorry you have been left in the proverbial lurch I am also on Creon but I`m a Type1. I think you have been given enough info to start with, try and keep your Blood Sugar Levels (BSL) and your food results together, ask any question any time you like.

Thank you!

Ok cool I understand. I suppose that way I can see what foods affect the BG.

Lots to take in but in really grateful to everyone for helping me

 

[brisr949]

Hi, i know its not the same but i have chronic pancreatitis, mine due to alcohol abuse unfortunately but do still have regular flare ups which as you know can be very painful. There is one med that really works for me and for a couple of hours completely makes me pain free, which is diclofenac suppositories. As these dont go through the stomach they really work for me and over the years i noticed reducing my creon down to 50,000 really helped long term and im guessing the same applies to a type1 as to yours that high bg really aggravates the stomach pain.

 

[mikeyB]

Hi Gail

Like Eggyg and the gang, I’m a Creonista as well, though I was T1 long before the CP hit, so I’m a retro engineered 3c. There’s no difference in treatment, if you look at NICE recommendations- insulin.

You will get nowhere in diabetes control if you don’t get sorted with a short acting insulin, you MUST get in touch with your diabetes nurse to sort this out. You also need to get a ketone testing kit. If your BG is 30 and you are showing ketones that means a 999 call, it’s dangerous

As Eggyg suggests, it’s worth having a look at the Panreatitis webisite, very welcoming and non-judgemental on how you acquired the condition, brisr949. Lots of 3c’s on there, that’s where they all are. 3c is now commoner than plain old boring T1. Depends which is bothering you most, the diabetes or the pancreatitis, (which is a pest in diabetes control), so the pancreatitis forum is a great place for advice:

Pancreatitis Support Forum

I’m on that forum as well, where for some reason you can see my ugly mug as my Avatar. Nobody has any shame on there🙂

 

[Galli]

Hi, i know its not the same but i have chronic pancreatitis, mine due to alcohol abuse unfortunately but do still have regular flare ups which as you know can be very painful. There is one med that really works for me and for a couple of hours completely makes me pain free, which is diclofenac suppositories. As these dont go through the stomach they really work for me and over the years i noticed reducing my creon down to 50,000 really helped long term and im guessing the same applies to a type1 as to yours that high bg really aggravates the stomach pain.

Oh no are your flare ups getting any better? I was told alcohol could flare mine up so I've been avoiding it. Yes the high BG gives me constant tummy pain and tiredness.

Unfortunately I cant take NSAID drugs but saying that maybe suppositories will affect me different? At the moment I take tramadol and paracetamol. If I need anything stronger my dr will prescribe Oxycodone liquid which works well with my sickness but I try not to use it to often as I dont want to become dependent on it.

I will try and change my creon alittle. Elaine suggested higher amounts so trying that at the moment if still not helping I will try and lower it.

Thank you 🙂

 

[Galli]

Hi Gail

Like Eggyg and the gang, I’m a Creonista as well, though I was T1 long before the CP hit, so I’m a retro engineered 3c. There’s no difference in treatment, if you look at NICE recommendations- insulin.

You will get nowhere in diabetes control if you don’t get sorted with a short acting insulin, you MUST get in touch with your diabetes nurse to sort this out. You also need to get a ketone testing kit. If your BG is 30 and you are showing ketones that means a 999 call, it’s dangerous

As Eggyg suggests, it’s worth having a look at the Panreatitis webisite, very welcoming and non-judgemental on how you acquired the condition, brisr949. Lots of 3c’s on there, that’s where they all are. 3c is now commoner than plain old boring T1. Depends which is bothering you most, the diabetes or the pancreatitis, (which is a pest in diabetes control), so the pancreatitis forum is a great place for advice:

Pancreatitis Support Forum

I’m on that forum as well, where for some reason you can see my ugly mug as my Avatar. Nobody has any shame on there🙂

Hiya

Will my dr sort out the ketone checking stuff? I'm waiting for my diabetic nurse to call me this week I've been told. I know when admitted to hospital 3ish months ago I had ketoacidosis. They didnt really explain much to me about what that meant. I went to resus for a few hours then to ICU for a couple of days. They tested it through my urine first then through my blood.

I'm sorry I keep asking lots of questions. I've just opened the link and shared to my bookmarks and will take a look in abit.

Thank you 🙂

 

[Hepato-pancreato]

Unfortunately you have to sort your own bgs out. my pain consultant told me high bgs cause more pain. Sorry beg to differ on that one. Bad time to see your gp. Up your creon when you eat. Sorry to be crude but when i've got creon sorted only need 1 sheet of paper instead of a roll.

 

[eggyg]

Oh no are your flare ups getting any better? I was told alcohol could flare mine up so I've been avoiding it. Yes the high BG gives me constant tummy pain and tiredness.

Unfortunately I cant take NSAID drugs but saying that maybe suppositories will affect me different? At the moment I take tramadol and paracetamol. If I need anything stronger my dr will prescribe Oxycodone liquid which works well with my sickness but I try not to use it to often as I dont want to become dependent on it.

I will try and change my creon alittle. Elaine suggested higher amounts so trying that at the moment if still not helping I will try and lower it.

Thank you 🙂

Tina, a top tip I got last year, after 12 years of taking Creon, off @mikeyB, is to have a couple of bites of your food, then half of your Creon, that another couple of bites then the rest. I must say it works a treat, most of the time, I still have my moments! I also can’t take NSAIDS, they cause terrible pancreatitis type pain that I never, ever want to experience again. Unfortunately, Tramodol makes me sick. I injured my pelvis last year after a fall and I had to take Codeine for six weeks. I didn’t need much Creon during that period! Silver clouds and all that! Even 12.5 years after my op, I still don’t always get it right with my medication so don’t beat yourself up. It really is a case of suck it and see I’m afraid. Elaine.