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Chronic Pancreatitis & T1

DumpTruck

DumpTruck

Newbie
Messages
2
Type of diabetes
Prediabetes
Hi. I'm 41. Without going into a massive essay about my history I have had chronic P for 10 years (plenty of acute attacks before that) and have always been told that diabetes will ensue at some point. Up until now have always escaped diabetes and insulin dependency. In a minor miracle I've left the pain of CP behind for the previous 8 months and my consultant thinks I'm experiencing "pancreatic burnout syndrome". For reasons not worth going into unless it becomes relevant I've been pricking 2 hourly for the last week and every reading is consistently high. High for me means nearly 9.0 even hours after eating whereas the last time I pricked regularly (years ago) things were normal or low. I wouldn't say I have an excessive thirst or urinate more than usual. Sometimes though when I go to the toilet I end up urinating when I didn't have the urge. Anyway, for reasons unrelated my pain clinic want me to go to the GP to arrange hormone tests and to start reducing the opiates as I no longer feel I need them. So I need to see the GP anyway. Should I inform the GP of my high readings or should I not even be worrying about this unless my pancreatic consultant directs me to do this (pricking)?
I'm worried about the high levels but at the same time I don't really understand what it means, I just know it is not normal or within normal range.
I am knackered most of the time but I just put this down to having a full time job, busy life, 6 year old energetic son, etc.
Any advice appreciated.
DumpTruck.
 
Hi Dump Truck

Acute/chronic pancreatitis is absolutely horrendous so you have my sympathy

Regarding your sugar levels I would be happy for mine to be under 10 but I hardly ever am

BM range for me is between 4.5 - 7.0 with no more than 8.5 two hours after food

Your GP/DSN/Consultant should agree/advise a target range for BM with you

The lack of thirst and frequent urination to my mind means that you are not running excessively high and in little danger of showing ketones, I would advise if you don't have ketostix to ask your GP to prescribe you some so you can keep a check on this, I test twice a week and more so if my BM is 15+

I admit I have not heard the term pancreatic burnout syndrome, have you ever had a camera investigation to look at the state of your pancreas? I had one and discovered that my pancreas had not developed and was born with a condition pancreas divisum (split pancreas)

Please ensure you tell your GP about your readings and mention the fact that you do pass urine when you don't have the urge, please do so

I am no expert sorry but the more info you can give to GP/DSN/Consultant the more they can help you

Good Luck & welcome to the forum
 
Hi @DumpTruck (and thanks @catherinecherub for tagging me in). I'm not quite the same as you (no pancreatic function at all due to disease) but the diabetic issues are similar. Firstly I agree with everything @Cumberland has said so won't repeat it! If your pancreas has been damaged then you may develop either type 2 or type 3c diabetes. (Type 1 is not impossible but highly unlikely). I think it is really important that you tell you GP, it may be that changes are occurring in your pancreas and this should be investigated to explore diabetes. Bottom line is, for someone with your pancreatic history, the sooner you are investigated/diagnosed the better - purely because if you are diabetic, early control may help stave off further damage to your pancreas. Hope that helps but please ask if you have more questions, we will try and help as much as we can! Sue x
 
Thanks you guys so much for your replies. To answer your questions:-

I got diagnosed just over 10 years ago and the cause of the first AP attack was idiopathic although I was later found to carry the CF gene. Anyway I've had 13 acute attacks 10 of which hospitalized me. I've had several CT scans, MRCP's, ERCP's, thoracic x-rays, surface scans, etc. I've had a cholecystectomy (its' function was less than 10%) and shortly after that my current hepato-pancreato-biliary consultant informed me I had all but 3 of the markers for CP. A Frey procedure was discussed but never got done for one reason or another, mainly that the insulin producing cells were intact. And as far as I am aware I am still producing insulin. I also suffer from GERD and NAFLD mainly due to malabsorbtion. I take Creon with everything. He has commented in the past that for someone with CP who has had repeated AP attacks my pancreas is "in good shape", but that was a few years ago.

Anyway I struggled for years with nausea and to find the right painkillers and as I said in my earlier message the pain suddenly stopped 8 months ago. My consultant said there is a phenomena called 'pancreatic burnout syndrome' where (my understanding is) the necrosis in CP is that advanced that it also destroys the nerve endings which report pain and hence no pain. Whatever happened I wasn't complaining. But of course he said that's equally as dangerous because now with the absence of pain you have lost your body's "early warning system" that things are wrong, hence why he advised me to prick.

But like I said I don't really know what I'm looking for. In the past 8 days the average has been 6.8 (min 5.2 max 8.8) and I did a fasting one this morning which was 5.6 when I woke up.

I need to see the GP anyway about this hormone thing so I will take your advice and start with him, he is normally quite good with me. I can't remember when I'm due back at the HPB unit to see my consultant.

Thanks so much for your advice,
DT
 
Hi DumpTruck,

Im 26 years old that has have been suffering from chronic pancreatitis pain 24/7 for two years now and I was getting really desperate with this disease and you just made my day. I have been trying to find people that have had this spontaneous relief of pain described in medical literature for a while now and here you are. I really hope your still on this forum and could get back to me as this would be a miracle. I was wondering if you also experienced 24/7 pain when you were symptomatic for the last 10 years and how bad your pain was. Mine is so bad I can hardly fall asleep.

I started a thread here dedicated to finding people who have experienced what you have experienced at the link below

http://patient.info/forums/discuss/...in-spontanuous-complete-releif-of-pain-563583

Please give us some feedback here or on the link i posted as we would love to know how your doing. You represent some hope for many of us.

Many Thanks,

Kind regards,

Alex
 
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