Issues with pancreas, but coming on slowly

[YvonneV]

From what I understand reading forums and medical information about pancreas trouble, most people with pancreatic issues are found at the hospital at one point with excruciating pain, have an operation to remove an almost dead pancreas (and/or other adjacent stuff in the belly) and suddenly find themselves looking at digestive enzymes and insulin. Are there any people on here that have had a slower onset of symptoms (maybe only in hindsight)? Or problems with blood sugar and/or digestion before the actual diagnosis?
I'm interested in experiences other than sort of what I described above.



Background to this question, if you have the time to read all of it:

I’ve been having blood sugar issues, bouncing up and down all day between highs and lows (maybe reactive hypoglycemia) and generally not doing well with bread and sugary foods. I’ve also noticed things changing with my digestion during the last six months or so. Having a look at the list of symptoms for exocrine pancreatic insufficiency (as one of the possibilities causing my problems) made me realize that I could tick almost all of the boxes. Except the excruciating pain. I only have a little pain, sometimes.

If the blood glucose is not working correctly, and the digestive system is not working correctly, and there is some pain in the area of the pancreas, is it too soon to think that the pancreas is having issues? My GP is having me get some basic tests to check this (blood test for amylase and lipase, and OGTT). But I feel like an oversensitive idiot or borderline hypochondriac because there isn’t a lot of pain and it all seems very mild compared to emergency surgeries and stuff.

 

[PenguinMum]

In 2012 I was in my GPs room for something else when I added as an afterthought that I had been having mild pain on the right below my ribs on and off for a long time and though the pain wasnt getting worse it was getting more frequent. She thought it might be gallbladder and sent me for ultrasound scan which took about 8 weeks to happen. The ultrasound scan was immediately followed by a CT scan one after the other and I was diagnosed with a MSN (mucinous cystic neoplasm) on my pancreas. Three weeks later I had a 5 hour surgery to remove the tail of my pancreas. I was immediately put on digestive enzymes (Creon). I didnt get diagnosed with diabetes for another 5 years (2017) and though I am treated as T2 an Endo has told me my indigenous insulin will eventually run out and I will need some insulin. I have been keeping things in check so far by eating no more than 30g carbs/day. Thats just my story, not yours. However I hope it demonstrates that any pain or discomfort that persists is always worth investigating. I think you should ask for an ultrasound as well as the bloods.

 

[YvonneV]

I think you should ask for an ultrasound as well as the bloods.

Thanks, I'm hoping that after the blood results come back I will be referred to a specialist and can then ask for the ultrasound.
But it's good to hear that I'm not crazy and that this kind of slow onset happens to other people as well.

 

[PenguinMum]

Thanks, I'm hoping that after the blood results come back I will be referred to a specialist and can then ask for the ultrasound.
But it's good to hear that I'm not crazy and that this kind of slow onset happens to other people as well.

My GP is able to go on her computer in front of me and request a scan booking (or used to pre Covid) so you could ask for the same. If the bloods don’t through up any info you probs wont see a consultant. Good luck and hope you get a good outcome and soon.

 

[Grant_Vicat]

Thanks, I'm hoping that after the blood results come back I will be referred to a specialist and can then ask for the ultrasound.
But it's good to hear that I'm not crazy and that this kind of slow onset happens to other people as well.

Having had a pancreas transplant I am on 2 different Immuno-suppressants each day. 3 years ago I had a scare on the exact fifth anniversary of the op. I felt completely fine, and like you had no pain. The hospital rang to tell me that my lipase and amylase levels were 3 times over the acceptable limit. Dr Google freaked me out, but the hospital, after various tests and scans decided to double the dose of one of the immuno-suppressants. Bingo! So the lack of pain does not indicate you are a hypochondriac. I hope they find a pleasing solution quickly!