Anyone type 3c ?

[FNDodd]

Anyone here with Type 3c ? If so what treatment are you getting ?

 

[DeejayR]

Hiya, have a search for "type 3c" (in quotes). @mrspuddleduck and @muggle666 are 3c. I've tagged them to answer you..

 

[mrspuddleduck]

Thanks @DeejayR , hi @FNDodd , there are a few of us here on the forum. From your profile it looks like you are going through diagnosis at the moment so please ask anything you want and we will try and help. I'm just out with the dog but will be around later! Sue xx

 

[FNDodd]

Thanks for the speedy reply I'll search for "type 3c" now

 

[mrspuddleduck]

Hi @ fndodd, I'm type 3c. I have a nercrotic and calcified pancreas (last MRI showed less than 1mm left!). I havnt had any exocrine function for over 15 years but only became diabetic to the extent if needing insulin about 8 months ago. Looking at your profile, I presume they are querying type 3c because you have had a Whipple? Look forward to knowing how you are getting on. Sue xxx

 

[FNDodd]

Hi Sue, my GP phoned me this afternoon and as I still have have some pancreas function he is going to refer me to a dietician to help me with my diet and he also said that if there is a further decline in the pancreas function I will have to use insulin. My aim now is to try my best to help myself through diet. I have bought a blood glucose tester and I have already realised that bread is a no no, so I will have to find alternative low fibre carbs as high fibre is a no no to due to my new plumbing.

 

[muggle666]

Sorry for the late reply at hospital all day yesterday, i am on insulin and still trying to get my head round things but people on here have been a great inspiration and help especially sue, bless her heart i have asked loads of questions and someone has always answered me, i cant be much help to you about medical things due to you being diagnosed t3 but am a willing ear if you need one at any time. what i have learnt is this, dont be too hard on yourself, get the support that you need, be open about your feelings and research and ask questions you dont understand. there does not appear to be alot known about this so its great to find people on here with the same sort of diabetes, good luck and hope you are keeping as well as you can

 

[mrspuddleduck]

Aw thanks @muggle666 I'm no expert but hopefully we can help each other out. This type 3c is a pain cos it throws so many of the 'rules' out the window!! Ive been running around the living room whooping like a child as my bs were 9.8 this morning ha ha. Sue xxx

 

[mrspuddleduck]

@FNDodd I know that diet thing! Obviously fats are the worst but I also can have problems with everything else!! I don't eat any meat, very little dairy, as few fats as possible. But because I have no exocrine function, carbs and proteins are also a problem too! Can manage most veg and non citrus fruit in small amounts. My best tip is little and often, I eat about 6 small meals a day which gives my system time to cope with the food and take lots and lots of Creon!! Also you must keep an eye on your vitamin levels, you will be prone to deficiency so every 3-6/months get you doc to test your levels. Sue xxx

 

[FNDodd]

Hi, thanks for your reply. I still have some exocrine function but Ive been on Creon since my op in April 2013. Had problems maintaining my weight so my dosage was upped last year but now there's no 40000 available and I'm taking handfuls of 25000 at a time. My GP told me last week that I will be monitored and when my Hba1c hits 58 I will have to use insulin. At the moment I'm watching my carbs carefully and I've bought a meter and testing first thing in the morning and before and after meals. My fasting blood sugars ( ie on waking) are not to bad around 6.2 on average but the others are all over the place, ranging from 8.6 to 12.3 two hours after eating. I've identified that I need to make sure I eat fats with carbs, the 8.6 and no white bread with anything, the 12.3. I'm hoping I can maintain what exocrine function have for as long as possible

 

[Shar67]

As a type 3c reducing carbs in your diet will not stop you needing insulin, you need it when your islet of langahan die off, and no diet can stop that, as you have hardly any panc function you need to be on a low fat high carb diet and if you need insulin you will have to find the middle ground as the low carb high fat diet isn't great for 3c.

I found low fat protein drinks are very good but not eating real food is very boring.

Oh and 3c tend to go hypo very quickly and I have found it can be very hard to get it back up.

 

[FNDodd]

Hi Shar67, I'm was hoping that what's left of my pancreas will carrying on working for a bit longer. I haven't had a hypo, the lowest my blood sugar has been since I've been testing myself is 5.1, but once it's up it takes ages to come down. It's going to be interesting to see how often the GP/ hospital monitor me as at the moment they seem unconcerned. I can't eat too much fat anyway and so finding carbs I can eat without the blood sugar going high is my new challenge. I had to try those drinks after my op and I couldn't drink them, bacon, eggs, and oatcakes are much better

 

[mrspuddleduck]

Hi again @FNDodd oh I know the Creon thing!! I was on the 40000 for 16 years then they stopped making them I too take handfuls of the things - I'm on about 600 creaon capsules a month, so about 20 a day!! Be careful as @Shar67 says, a type 3c can't LCHF as you can not digest the fats. As I mentioned in another thread I worked out my own worst carbs that send my blood high and avoid those but have to include carbs in my diet in fairly hefty amounts to keep me from becoming mal nourished. With no exocrine function I can't breakdown fats, carbs or proteins and from the little I can cope with with the Creon comes the mal absorbsion issues!
Type 3c is a brittle diabetes so it is harder to control your blood sugars, so try not to get too frustrated! And as@shar67, I have sudden unexplained hypos so always carry something with you just in case! Sue xxx

 

[Shar67]

I have been vegetarian (eat fish) for a year now and I find my bs are good better than before but I don't eat potatoes and have cut bread and rice right down, I make a mean veggie curry