Not so noob

[Vamppir8]

Hi, got the posh one, type 3c (they think after 6 months misdiagnosed type 2 then 1) 6 years, all good, lots of experience from daughter who had type 1 at 8. Here to find out about Libra got one Monday after years of Dr saying no, he sent me to pump clinic by mistake, I told them just wanted libra to be told dr could have given you one ages ago, you only had to ask......... Having some issues with it.

 

[Proud to be erratic]

Hi, got the posh one, type 3c (they think after 6 months misdiagnosed type 2 then 1) 6 years, all good, lots of experience from daughter who had type 1 at 8. Here to find out about Libra got one Monday after years of Dr saying no, he sent me to pump clinic by mistake, I told them just wanted libra to be told dr could have given you one ages ago, you only had to ask......... Having some issues with it.

Hi,
Follow on questions if I may from our conversation in the Dawn Phenomenon thread:
May I ask what caused your diagnosis of T3c? You've had a challenging 6 yrs.
How old is your daughter now and how is she getting on with her D?

Have you read about the limitations of Libre?

 

[cameron]

Hi @Vamppir8, welcome to the forum!

That's great that you've finally managed to get the Libre on prescription. It can make living with diabetes a whole lot easier. I've found the Libre really useful for avoiding overnight hypos, for example.

What kind of problems are you having with it? Did your diabetes team show you how to use it? You've not had it long, so don't worry if you don't understand everything just yet. You'll get the hang of it eventually. Does your daughter also use one?

 

[Vamppir8]

I got a free 5kilo box of mint imperials at work, soon got ill. Went to drs, they said type 2 put me on metformin, see another specialist put me on creon. Had a lot of stomach problems so stopped creon and went onto slow release (unfortunately dr halved dose chemist picked that up at review...) Then they said it was type 1, then type 3c. Pancreatitis?!? Lucky I had a good diest (other than mint imperials) and a long honey moon period as was about 8 months from metformin to insulin. Been fine whole time jab, eat, test before next meal, fine etc. Only libra showing me high inbetween now never tested unless felt low or high.

Daughter type 1 from 8 years old, she had her bad period uni drinking ketoacidosis etc but on it now 26, libra meow meow, her graphs look perfection but she is on it 24/7.

Both bad genes, mother had rheumatoid, we both got diabetes and other daughter psoriatic arthritis.

How do you get on with creon? I stopped because of gut problems but in retrospect it could have just been the metformin. I've also got wrestles leg syndrome probably due to mal absorption also, minerals and the like.

 

[Vamppir8]

Can I ask why you had yours taken out if thats not too forward?

 

[Vamppir8]

Hi @Vamppir8, welcome to the forum!

That's great that you've finally managed to get the Libre on prescription. It can make living with diabetes a whole lot easier. I've found the Libre really useful for avoiding overnight hypos, for example.

What kind of problems are you having with it? Did your diabetes team show you how to use it? You've not had it long, so don't worry if you don't understand everything just yet. You'll get the hang of it eventually. Does your daughter also use one?

No think they were peed off I had been sent there and didn't want a pump. In and out put this there push it, there you go. Turned proximity alarm off see you later. Got my daughter to ask fo4 help which is lucky as she's a genius. I wanted one for work as have to pre carb high to get through shift, when the alarm worked meant I could just munch and bounce off 5 all way through. Worked a dream 2 days then no alarm and hypo. Finding the website quite amateur as well not very well thought out. Early days.

 

[trophywench]

Are you using your mobile phone to scan your Libre? In which case, what exact phone is it, since different ones have different solutions when something stops working.

 

[Proud to be erratic]

Thanks for the background info.
I had a blocked bile duct in Oct 2019, which turned out to be pancreatic cancer and surgery in Feb 20 to remove the tumour. Once they'd opened me up they decided my panc'y also had to go and the histology on the removed bits confirmed that had been a good decision.

I got a free 5kilo box of mint imperials at work, soon got ill. Went to drs, they said type 2 put me on metformin, see another specialist put me on creon. Had a lot of stomach problems so stopped creon and went onto slow release (unfortunately dr halved dose chemist picked that up at review...) Then they said it was type 1, then type 3c. Pancreatitis?!?

I don't know very much about pancreatitis itself. Reading about it on both this forum and on the pancreatic website, it seems some people have huge problems and loads of pain, others less so. There are members on this forum who've had surgery and became insulin dependent immediately, at least one other who is still on just metformin; so T3c is a select small club, but members are not all insulin dependent

Lucky I had a good diest (other than mint imperials) and a long honey moon period as was about 8 months from metformin to insulin. Been fine whole time jab, eat, test before next meal, fine etc. Only libra showing me high inbetween now never tested unless felt low or high.

Daughter type 1 from 8 years old, she had her bad period uni drinking ketoacidosis etc but on it now 26, libra meow meow, her graphs look perfection but she is on it 24/7.

That's really great that your daughter is "on it" and able to help you with tech problems. Is she geographically close or do you end up comparing Libre reports by Internet screenshots?
I have a T1 cousin, almost 50 years now, I'm close to as a relative, but he lives a long way away and he has resisted using Libre - doesn't want any change - despite various D related conditions.

Both bad genes, mother had rheumatoid, we both got diabetes and other daughter psoriatic arthritis.

Curiously there's a lot of D on my maternal side. She was the youngest of a big family and various members of her family tree have T1 or T2. My great niece became T1 earlier this year at 21. Her father was T2 and surrendered both legs to his D; he died in late 2019 after various further illnesses, not helped by his medical vulnerability and original neglect of his T2. Gives me a huge incentive to stay "on it"; feels like a full time job sometimes, but the alternative is unthinkable for me.

How do you get on with creon?

I have no side effects from Creon; usually remember (just sometimes I'm so hungry and get near the end of a big plate of food then remember. That's not good practice, best to spread the capsules across the meal.) I take it in industrial quantities, according to the Gastroenterologist who sorted out my long running bacterial infection. Even take one with a milky coffee and 2 if coffee and cookie. works out at c.30 per day. When I've not taken enough I know about 6 hrs later with urgent and offensive bowel activity!

I stopped because of gut problems but in retrospect it could have just been the metformin. I've also got wrestles leg syndrome probably due to mal absorption also, minerals and the like.

Perhaps you should restart on the Creon. As you say the restless leg syndrome could be caused by poor digestion, which Creon should improve.
A retired GP who I know well from my archaeology hobby, suggested to me when I was experiencing night cramps that our bodies are so clever that possibly the night cramps were a type of alarm generated by my brain - waking me to warn of other risks, such as a night hypo. Interesting concept; he was convinced that ailments are inter-connected in very subtle and not obvious ways.

Must dash, another busy day today. We've sold our house and moving 30 miles away, buying our daughter's house. We're downsizing, they are upsizing, 100m up the same lane. Hope to get all completed around Christmas time, which seems a while away, but really isn't.

 

[Vamppir8]

Are you using your mobile phone to scan your Libre? In which case, what exact phone is it, since different ones have different solutions when something stops working.

No it's the reader that comes with it. Been on phone sending new sensor.

 

[Vamppir8]

Thanks for the background info.
I had a blocked bile duct in Oct 2019, which turned out to be pancreatic cancer and surgery in Feb 20 to remove the tumour. Once they'd opened me up they decided my panc'y also had to go and the histology on the removed bits confirmed that had been a good decision.

I don't know very much about pancreatitis itself. Reading about it on both this forum and on the pancreatic website, it seems some people have huge problems and loads of pain, others less so. There are members on this forum who've had surgery and became insulin dependent immediately, at least one other who is still on just metformin; so T3c is a select small club, but members are not all insulin dependent

That's really great that your daughter is "on it" and able to help you with tech problems. Is she geographically close or do you end up comparing Libre reports by Internet screenshots?
I have a T1 cousin, almost 50 years now, I'm close to as a relative, but he lives a long way away and he has resisted using Libre - doesn't want any change - despite various D related conditions.

Curiously there's a lot of D on my maternal side. She was the youngest of a big family and various members of her family tree have T1 or T2. My great niece became T1 earlier this year at 21. Her father was T2 and surrendered both legs to his D; he died in late 2019 after various further illnesses, not helped by his medical vulnerability and original neglect of his T2. Gives me a huge incentive to stay "on it"; feels like a full time job sometimes, but the alternative is unthinkable for me.

I have no side effects from Creon; usually remember (just sometimes I'm so hungry and get near the end of a big plate of food then remember. That's not good practice, best to spread the capsules across the meal.) I take it in industrial quantities, according to the Gastroenterologist who sorted out my long running bacterial infection. Even take one with a milky coffee and 2 if coffee and cookie. works out at c.30 per day. When I've not taken enough I know about 6 hrs later with urgent and offensive bowel activity!

Perhaps you should restart on the Creon. As you say the restless leg syndrome could be caused by poor digestion, which Creon should improve.
A retired GP who I know well from my archaeology hobby, suggested to me when I was experiencing night cramps that our bodies are so clever that possibly the night cramps were a type of alarm generated by my brain - waking me to warn of other risks, such as a night hypo. Interesting concept; he was convinced that ailments are inter-connected in very subtle and not obvious ways.

Must dash, another busy day today. We've sold our house and moving 30 miles away, buying our daughter's house. We're downsizing, they are upsizing, 100m up the same lane. Hope to get all completed around Christmas time, which seems a while away, but really isn't.

Thanks for the background info.
I had a blocked bile duct in Oct 2019, which turned out to be pancreatic cancer and surgery in Feb 20 to remove the tumour. Once they'd opened me up they decided my panc'y also had to go and the histology on the removed bits confirmed that had been a good decision.

I don't know very much about pancreatitis itself. Reading about it on both this forum and on the pancreatic website, it seems some people have huge problems and loads of pain, others less so. There are members on this forum who've had surgery and became insulin dependent immediately, at least one other who is still on just metformin; so T3c is a select small club, but members are not all insulin dependent

That's really great that your daughter is "on it" and able to help you with tech problems. Is she geographically close or do you end up comparing Libre reports by Internet screenshots?
I have a T1 cousin, almost 50 years now, I'm close to as a relative, but he lives a long way away and he has resisted using Libre - doesn't want any change - despite various D related conditions.

Curiously there's a lot of D on my maternal side. She was the youngest of a big family and various members of her family tree have T1 or T2. My great niece became T1 earlier this year at 21. Her father was T2 and surrendered both legs to his D; he died in late 2019 after various further illnesses, not helped by his medical vulnerability and original neglect of his T2. Gives me a huge incentive to stay "on it"; feels like a full time job sometimes, but the alternative is unthinkable for me.

I have no side effects from Creon; usually remember (just sometimes I'm so hungry and get near the end of a big plate of food then remember. That's not good practice, best to spread the capsules across the meal.) I take it in industrial quantities, according to the Gastroenterologist who sorted out my long running bacterial infection. Even take one with a milky coffee and 2 if coffee and cookie. works out at c.30 per day. When I've not taken enough I know about 6 hrs later with urgent and offensive bowel activity!

Perhaps you should restart on the Creon. As you say the restless leg syndrome could be caused by poor digestion, which Creon should improve.
A retired GP who I know well from my archaeology hobby, suggested to me when I was experiencing night cramps that our bodies are so clever that possibly the night cramps were a type of alarm generated by my brain - waking me to warn of other risks, such as a night hypo. Interesting concept; he was convinced that ailments are inter-connected in very subtle and not obvious ways.

Must dash, another busy day today. We've sold our house and moving 30 miles away, buying our daughter's house. We're downsizing, they are upsizing, 100m up the same lane. Hope to get all completed around Christmas time, which seems a while away, but really isn't.

Remembered why I came off croon, had prostate problems and chronic hip pain, drs just the usual naff off. Wife insisted on 2 week wait as both symptoms of prostate cancer. Was just croon, came off pain went. Good luck with your move, hope it goes smoothly.

 

[everydayupsanddowns]

Welcome to the forum @Vamppir8

Have you mentioned coming off Creon to your Dr? From reading the experiences of our other Type 3cs I thought it was pretty much a requirement where the pancreas had been damaged, and wasn’t able to produce the digestive enzymes needed.

Not taking enough Creon can cause bowel issues, and I think too much can gum you up, but it would be good to keep your Dr in the loop so that they can advise you.

 

[Vamppir8]

Lol Dr? For real, they don't give a fig if you could even get to see one. I've got an "urgent" appointment with epilepsy consultant, 48 weeks and counting. Were on our own.

 

[rebrascora]

My understanding is that if you are not tethered to the bathroom when not using Creon, then you probably don't need it.

Have you actually had pancreatitis @Vamppir8? I am struggling to follow the exact meaning of your posts sometimes, so apologies for asking what may be an obvious question. The reason I ask is that Type 1 would tie in with the other autoimmune conditions running in your family. Not sure if you are aware but Type 1 is autoimmune. Not wanting to rob you of your "posh" diagnosis of course 😉 although I believe that Type 3c may be fast overtaking Type 1 and becoming rather less exotic than it used to be, especially as there are probably a lot of mis diagnosed Type 3cs out there who have been told they are Type 2.. I am sure @mikeyB has mentioned that a few times recently.

 

[Vamppir8]

My understanding is that if you are not tethered to the bathroom when not using Creon, then you probably don't need it.

Have you actually had pancreatitis @Vamppir8? I am struggling to follow the exact meaning of your posts sometimes, so apologies for asking what may be an obvious question. The reason I ask is that Type 1 would tie in with the other autoimmune conditions running in your family. Not sure if you are aware but Type 1 is autoimmune. Not wanting to rob you of your "posh" diagnosis of course 😉 although I believe that Type 3c may be fast overtaking Type 1 and becoming rather less exotic than it used to be, especially as there are probably a lot of mis diagnosed Type 3cs out there who have been told they are Type 2.. I am sure @mikeyB has mentioned that a few times recently.

I normally defecate 4 to 6 times a day, sweet corn test 15 hours (although this last two weeks once a day I have changed to night shift and its had an effect on digestion). I was told type 2 and put on metformin first for 6 months (honey moon period and good diet). I then had tubes up and tubes down, poo analisis, blood works, blood sugars started rising and was getting rather ill then they said 3c and put me on insulin. Like I said the creon (sorry was using new phone smell chequer not programmed) gave me intense hip pain so stopped taking it and pain went away. Then thyroid packed up, then epilepsy, also sticky blood syndrome so on rivaroxaban as well.

 

[Proud to be erratic]

My understanding is that if you are not tethered to the bathroom when not using Creon, then you probably don't need it.

Not sure that is a good or reasonable "measure". For me, if I go even 2 meals without Creon, I really know about it and it is all very messy and offensive. This next bit could be too much info! Cleaning myself can only be done in a shower and cleaning the toilet can need 2 'brushes and flushes'! Urgency is a huge problem as well as frequency. It is all very wearisome, debilitating and depressing. My Creon is as close to me as my hypo response kit!

 

[Vamppir8]

Not sure that is a good or reasonable "measure". For me, if I go even 2 meals without Creon, I really know about it and it is all very messy and offensive. This next bit could be too much info! Cleaning myself can only be done in a shower and cleaning the toilet can need 2 'brushes and flushes'! Urgency is a huge problem as well as frequency. It is all very wearisome, debilitating and depressing. My Creon is as close to me as my hypo response kit!

Wow yeah no way near as bad as that, sound awful. Last 2 quite urgent, last ones explosive, then last thing at night the Malteser. I work lates so luckily always at home. Do you get any Creon side effects?

 

[Proud to be erratic]

No, I get no Creon side effects and I am taking lots. So that is a blessing.

It is interesting: the pancreas is a small organ and from reading what others say on this forum, partial pncreaectomies may (or may not) affect so many of the different pancreatic functions. Since mine was total, I don't need to guess about what I'm missing!