Newly Diagnosed

[Mac77]

Hi folks.

I got diagnosed with Type 3c on the 21/9/20 due to a problem with my pancreas. I've been put on Humulin I using a KwikPen having to increase my dose 2ml every 48 hours until my numbers are into single figures ( my highest was 29.4 at the start!). I'm currently taking 20ml twice daily and having to test my BS 4 times per day - pre.

It's all pretty confusing at the moment and quite a frightening diagnosis to digest, if I'm honest. I'm hoping talking to those in the same, if not similar position will help, so I'm pleased I came across this forum!

Anyways, that a little of where I am with it and thank you for the add.

Craig.

 

[Toucan]

Hello @Mac77 and welcome to the forum.
I will copy in @eggyg to this message as she is Type 3c, and I'm sure she will try to help you.

 

[everydayupsanddowns]

Welcome to the forum Craig @Mac77

Sorry to hear about your diagnosis.

I suspect you mean 20u rather than 20ml (insulin doses are generally tiny and delivered at ‘100u’ strength where 1ml is divided into 100 units).

Sorry to hear that you have been finding things a bit frightening, confusing, and overwhelming, but that is perfectly natural and normal with a diagnosis of diabetes, and something most of us have worked through in one way or another.

You begin to appreciate just how clever and subtle the body is at managing blood glucose levels within a vanishingly small target range when trying to juggle food, insulin, activity, hormones, stress, the weather, illness, alcohol and any number of other variables!

Humulin I is an intermediate-acting insulin and will be providing general ‘background’ support to your remaining pancreatic function. It tends to build up over an hour or so, has a peak of action until about 4hrs after injecting and then fades away up to about 11-12 hours.

Which times of day are you taking it? Possibly pre-breakfast and pre-evening meal (so 7ish and 7ish approx 12h apart?)

It may be that over time it would be very helpful to move to a more flexible MDI system where you take specific doses to cover meals or snacks, and a separate ‘background’ dose. As you begin to see your BGs reduce and come more into range, you will get a feel for how well the Humulin I is suiting your lifestyle.

Keep asking questions and let us know how things are going 🙂

 

[trophywench]

Hi Craig - welcome to the club no-one wanted to join !

Have you started the ball rolling apart from the obvious need to jab and test test test - things like registering for free prescriptions; advising DVLA and your employer?

 

[eggyg]

Hi @Mac77 and thanks @Toucan for tagging me. I’m also Type 3C, did they actually tell you were that type? If so, blimey, they’re eventually recognising it! Firstly don’t worry ( well not too much) I’ve been living with it for 10 years and they knew nowt about it then! Firstly, it’ll probably be better in the long run if they put you on a bolus/ basal insulin regime, more injections a day but more flexible, but I’m not going to bamboozle you with that yet, do some research about it. I started on Humulin I but it’s really an insulin for Type 2s and we should be treat similar to Type 1. I’m assuming you’re taking Creon, if not, it may be worth asking about that, it’s a enzyme supplement to replace those destroyed by pancreatic disease/ surgery. Apologies if you know this. Now for a more personal question, how are your bowels? Pretty rubbish I would imagine. Ten years in and they’re the bane of my life! Unfortunately pancreas problems aren’t just limited to insulin deficiency and us Type 3Cs ( or weirdo diabetics as I refer myself as) have to juggle the two. I would do as much reading about it as you can, it’s liveable with, I had most of my pancreas removed and the remaining part is now dead and I still live life to the full. Disclaimer: Spontaneity plays no part in it! Any questions please fire away, on here or PM me. Good luck. Elaine.

 

[SB2015]

Welcome to the forum @Mac77

Sorry to hear of your diagnosis, but glad that you have found the forum, where there is plenty of advice and support available. It is indeed very confusing at the start and there is so much to get your head round very quickly.

As others have said you are likely to find life a lot more flexible with two different insulins rather than the mix. With the Basal (background insulin that deals with the glucose your liver dribbles out) and Bolus (quick acting which deals with glucose from the carbs you eat) as separate injections (often called Multiple Daily Injections) you can then eat when you want to and make adjustments at each injection. This is worth talking to you ur team about as things settle.

This may sound bonkers but I would recommend a book T1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. I was 53 at diagnosis but T1 is T1 (and similar to T3c). The book explains thing so clearly. It is well indexed and regularly updated with the latest tech so worth looking for the latest edition.

Keep in touch and fire away with any questions that you have.

 

[Ralph-YK]

Welcome to the forum Mac.
There are plenty of insulin users on here for you to chat to. Including some T3c.

 

[Mac77]

Welcome to the forum Craig @Mac77

Sorry to hear about your diagnosis.

I suspect you mean 20u rather than 20ml (insulin doses are generally tiny and delivered at ‘100u’ strength where 1ml is divided into 100 units).

Sorry to hear that you have been finding things a bit frightening, confusing, and overwhelming, but that is perfectly natural and normal with a diagnosis of diabetes, and something most of us have worked through in one way or another.

You begin to appreciate just how clever and subtle the body is at managing blood glucose levels within a vanishingly small target range when trying to juggle food, insulin, activity, hormones, stress, the weather, illness, alcohol and any number of other variables!

Humulin I is an intermediate-acting insulin and will be providing general ‘background’ support to your remaining pancreatic function. It tends to build up over an hour or so, has a peak of action until about 4hrs after injecting and then fades away up to about 11-12 hours.

Which times of day are you taking it? Possibly pre-breakfast and pre-evening meal (so 7ish and 7ish approx 12h apart?)

It may be that over time it would be very helpful to move to a more flexible MDI system where you take specific doses to cover meals or snacks, and a separate ‘background’ dose. As you begin to see your BGs reduce and come more into range, you will get a feel for how well the Humulin I is suiting your lifestyle.

Keep asking questions and let us know how things are going 🙂

Yeah, 20u. Lol. I'm still getting used to all the measurement units.

I take my Insulin pre-meal, so, 8:00am and 5:30pm.

My numbers are still all over the place and I'm a little disappointed with the lack of response from my diabetic nurses in regards to foods. In particular, what foods I should or should not be eating? All she told me was, "avoid sugary foods and drinks!" Well, that's all well and good but, what constitutes"sugary"? 'Google' only gets me so far!

Thank you for the reply.

 

[Mac77]

Hello @Mac77 and welcome to the forum.
I will copy in @eggyg to this message as she is Type 3c, and I'm sure she will try to help you.

Thank you.

 

[Mac77]

Hi Craig - welcome to the club no-one wanted to join !

Have you started the ball rolling apart from the obvious need to jab and test test test - things like registering for free prescriptions; advising DVLA and your employer?

Thank you for the reply. Yes, I've registered and notified the DVLA and others that need to know. It's all very overwhelming at the minute, so I'm just trying to take it all in.

 

[Mac77]

Hi @Mac77 and thanks @Toucan for tagging me. I’m also Type 3C, did they actually tell you were that type? If so, blimey, they’re eventually recognising it! Firstly don’t worry ( well not too much) I’ve been living with it for 10 years and they knew nowt about it then! Firstly, it’ll probably be better in the long run if they put you on a bolus/ basal insulin regime, more injections a day but more flexible, but I’m not going to bamboozle you with that yet, do some research about it. I started on Humulin I but it’s really an insulin for Type 2s and we should be treat similar to Type 1. I’m assuming you’re taking Creon, if not, it may be worth asking about that, it’s a enzyme supplement to replace those destroyed by pancreatic disease/ surgery. Apologies if you know this. Now for a more personal question, how are your bowels? Pretty rubbish I would imagine. Ten years in and they’re the bane of my life! Unfortunately pancreas problems aren’t just limited to insulin deficiency and us Type 3Cs ( or weirdo diabetics as I refer myself as) have to juggle the two. I would do as much reading about it as you can, it’s liveable with, I had most of my pancreas removed and the remaining part is now dead and I still live life to the full. Disclaimer: Spontaneity plays no part in it! Any questions please fire away, on here or PM me. Good luck. Elaine.

Hi and thank you for the reply.

Yes, they told me I was Type 3C due to having pancreatitis. They said I also have a cyst on my pancreas, too.

No, I'm not on Creon. They certainly didn't mention it, but I will definitely be asking about it and the other medication you've mentioned.

My bowels seem to be okay, although I do have to pee quite a lot, which they said is common.

I'm reading as much as I can about Type 3C and any links would be greatly appreciated.

 

[Mac77]

Welcome to the forum @Mac77

Sorry to hear of your diagnosis, but glad that you have found the forum, where there is plenty of advice and support available. It is indeed very confusing at the start and there is so much to get your head round very quickly.

As others have said you are likely to find life a lot more flexible with two different insulins rather than the mix. With the Basal (background insulin that deals with the glucose your liver dribbles out) and Bolus (quick acting which deals with glucose from the carbs you eat) as separate injections (often called Multiple Daily Injections) you can then eat when you want to and make adjustments at each injection. This is worth talking to you ur team about as things settle.

This may sound bonkers but I would recommend a book T1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. I was 53 at diagnosis but T1 is T1 (and similar to T3c). The book explains thing so clearly. It is well indexed and regularly updated with the latest tech so worth looking for the latest edition.

Keep in touch and fire away with any questions that you have.

Thank you.

 

[trophywench]

If ONLY it were just a matter of cutting down on sweet stuff! Sugar just happens to be a thing that is almost 100% carbohydrate, so sugar itself and anything with sugar in it are just the first thing to cut down on. But then - we all need to learn where else we get dietary carbohydrate from. So a lot of carb - but not as much as sugar itself - is found in flour (which means it's also in things made with flour eg bread, cake, pasta, pastry) potatoes, other 'root' veg, pulses (eg peas & beans), fruit (the sweeter and juicier, usually means the more carb - but bananas aren't either, however still contain a lot of carb) - so then learn to work out how much is in what, and discover how much fast acting (bolus) insulin you need to cover the amount of carb in that particular food (cos eg a meat pie is going to have carb cos of the pastry, but if the filling of it has both meat and gravy, you also find carb in the gravy unless it's thin and watery, cos you need some sort of 'starch' to thicken it!)

Sounds like a nightmare I know. But there are lots of ways of finding out what's in what. Things that come in printed packets tins and boxes in the UK are really helpful - cos printed on the back in little writing (so if you need glasses, wear em) is a table with Nutritional info. I had a ginger Nut this morning, the packet informed me there were X grams of carb in 100g weight of biscuit, OMG, how much does one biscuit weigh? Not actually a prob with a biscuit though cos in the next column, it told me how much there was in ONE biscuit. (think this one was 7.5g)

Hence the thing to do is to get used to reading labels, ready for when you can get changed over to the two insulin regime, cos you'll need to, then.

There are courses available usually to train people, though that's gone a bit haywire at the moment like a lot of things have, but in any case there is also an Online course anyone who needs to can do, free and without having to be referred by your doc. Also a book called 'Carbs & Cals' either as a physical book or as an App. That shows you photos of all sorts of different plates of food with the nutritional values of it and people do find that helpful cos they include various 'chain' restaurant food too. (The only thing is though they all look like 'a good size dinner' - they don't use gigantic plates in the photos! - need to watch out for that)

Please simply know that we're all here to help - and we will, happily, with (almost!) anything and everything.

 

[eggyg]

Hi and thank you for the reply.

Yes, they told me I was Type 3C due to having pancreatitis. They said I also have a cyst on my pancreas, too.

No, I'm not on Creon. They certainly didn't mention it, but I will definitely be asking about it and the other medication you've mentioned.

My bowels seem to be okay, although I do have to pee quite a lot, which they said is common.

I'm reading as much as I can about Type 3C and any links would be greatly appreciated.

Mine started with pancreatitis 19 years ago, caused by gall stones. Also has pseudo cyst on pancreas which they put drains in during gall bladder removed I wasn’t very well! Unfortunately I had to eventually have 2/3 of my pancreas removed 13 years ago and became diabetic 3 years later. Glad your bowels are ok! Be thankful for small mercies.