Becoming type 3c

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Vigman

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Type 3c
I’m not a newbie to the forums as my daughter has been Type 1 for 20 years. However having had acute pancreatitis 16 years ago, I kept telling my GP I felt unwell. Unfortunately I have many other conditions. However I finally had an MRI and was told my pancreas was ‘shrunken and calcified’! When I asked why I was told I had chronic pancreatitis. (I’d stop drinking alcohol 16 years ago.)

About 6 months ago, I was so fed up with terrible smelly diarrhoea that I was finally put on Creon and that has made a huge difference. Recent blood tests have shown sugar levels to be on the top end of normal. I am now thirsty all the time and needing to pee frequently. I just did a blood test two hours after eating and my reading was 10.

My GP keeps telling me I am not diabetic (also told me I didn’t have CP!), so what should my next move be please?

Very interested to hear from other 3c folks and also which forum to post in about this.
TIA

Vigman
 
I'd be very tempted to apparently randomly accompany my daughter to her next clinic appt and chip in at some stage with a cheery, 'Well as X's mum/dad, can I ask you for a question, please? What would you think I ought to do about ....'
 
Whilst I greatly sympathize with your plight and so pleased you now have Creon and it is helping, I would not be overly concerned about having diabetes just yet if your recent HbA1c was in the normal range. A 2 hour post meal reading of 10 is not excessively high, especially if it was a normal meal, as oppose to a low carb meal. The excessive thirst and urination from diabetes generally doesn't kick in until your levels are persistently high, usually mid teens and not just after meals, but base level high, so I would be a little surprised if your symptoms are diabetes related.
How frequently do you test your levels? I think it is possible/likely that you will develop diabetes at some point or are in the process of developing it, if your pancreas is damaged and I can relate to the problems you have had as my late mother suffered these issues in later life after 3 bouts of acute pancreatitis (and she didn't drink) and she never got Creon because I didn't know anything then, but looking back and knowing what I know now, my heart breaks for her because it greatly affected her quality of life as well as the pain she experienced.

Simply put, if your HbA1c is not yet showing you as diabetic, then you are not any type of diabetic, but in your position I would ask for regular HbA1c tests, especially if BG levels start to rise and if/when you cross the HbA1c diabetic threshold, then I would say that you are almost certainly likely to be Type 3c with your medical history, but you will need to be insistent because many primary care clinicians know nothing about it, so it may be down to you to be confident and knowledgeable to plant the seeds of doubt in their Type 2 diagnosis, to make them research it.... or refer you on to a specialist who does know. The chances of getting referred to a specialist now when your HbA1c is in the normal range is zilch simply because you are not diabetic yet, but sounds likely it is coming.
 
rebrascora said:
Whilst I greatly sympathize with your plight and so pleased you now have Creon and it is helping, I would not be overly concerned about having diabetes just yet if your recent HbA1c was in the normal range. A 2 hour post meal reading of 10 is not excessively high, especially if it was a normal meal, as oppose to a low carb meal. The excessive thirst and urination from diabetes generally doesn't kick in until your levels are persistently high, usually mid teens and not just after meals, but base level high, so I would be a little surprised if your symptoms are diabetes related.
How frequently do you test your levels? I think it is possible/likely that you will develop diabetes at some point or are in the process of developing it, if your pancreas is damaged and I can relate to the problems you have had as my late mother suffered these issues in later life after 3 bouts of acute pancreatitis (and she didn't drink) and she never got Creon because I didn't know anything then, but looking back and knowing what I know now, my heart breaks for her because it greatly affected her quality of life as well as the pain she experienced.

Simply put, if your HbA1c is not yet showing you as diabetic, then you are not any type of diabetic, but in your position I would ask for regular HbA1c tests, especially if BG levels start to rise and if/when you cross the HbA1c diabetic threshold, then I would say that you are almost certainly likely to be Type 3c with your medical history, but you will need to be insistent because many primary care clinicians know nothing about it, so it may be down to you to be confident and knowledgeable to plant the seeds of doubt in their Type 2 diagnosis, to make them research it.... or refer you on to a specialist who does know. The chances of getting referred to a specialist now when your HbA1c is in the normal range is zilch simply because you are not diabetic yet, but sounds likely it is coming.
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Thanks so much for that excellent answer. My consultant warned that I would become T3c and to report symptoms. Unfortunately I have many other serious autoimmune problems on top of CP which include ischaemic bowel disease, arthritis, fibromyalgia and non bacterial prostatitis. I’m having a flare up of the latter at the moment which explains why I keep needing the loo but I have never had this raging thirst before which is why I tested today and was surprised to get the 10 reading two hours after two pieces of toast. It’s often many months before I check my blood sugar.

Interesting to know that the main diabetic symptoms come on when levels are consistently high. My last hba1c was at the very top of the normal range and is certainly creeping up.

The Creon has made a huge difference to me. Annoyingly my consultant had said to try it a couple of years ago but because he didn’t write it in his report my GP wouldn’t prescribe it then. Only after 6 weeks of steatorrhea was I given it and the change was immediate! Apparently the damage/calcification in my pancreas is affecting my exocrine function.
 
Welcome @Vigman
I'm Type 3c following pancreatitis.
Glad to hear that Creon is helping with the digestive issues.
Are you having regular HBA1C tests?

You might like to have a look at the NICE guidelines for pancreatitis.
According to them you should be offered an HBA1C test every 6 months.You should also have annual blood tests to check for vitamin and mineral deficiencies and a bone density scan every 2 years.

Hope things continue well with the Creon and let us know if you have any questions.
 
Welcome @Vigman, I'm also T3c - but after a total pancreatectomy. I'm a fairly heavy Creon consumer and have been since my surgery.

I originally had a malabsorption problem, post surgery, which took ages to get resolved. Eventually I had a gastro consult which led to a particular antibiotic, and eventual resolution. But I can clearly identify with the offensive bowel activity. Glad that Creon has given you some relief.

I am not medically qualified, but I agree with @rebrascora; should you eventually arrive into a diagnosis of being diabetic, then do push strongly to be categorised as T3c with pancreatitis as the cause of your diabetes. Whether you can manage that diabetes by oral meds or need insulin only time will tell. But the treatment path does not define your Type - the cause does that. And you will probably inevitably need some extra help in managing T3c, from a Consultant and specialist team, in conjunction with your other ailments. Good luck.
 
If your blood tests have shown your a1c is at the top end of normal, then it is still normal and you don’t have diabetes. You should look for other causes of your symptoms.
 
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