Insulinoma

I’m being investigated for a suspected insulinoma. I know that 90% of them are benign, but my blood sugar is becoming harder to manage and I’m now experiencing twinges of pain in my left and right sides (under my ribs).

I’m waiting for an appointment for the scan, but I’m concerned about the pain - I know that insulinomas don’t cause pain unless they’ve spread; I had a swollen lymph node in my neck that appeared about 6 weeks ago - it doesn’t feel like its gone down.

Should I contact my consultant about the pain or do you think that twinges of pain are expected with insulinoma?

Any advice greatly received.

  • Offline in reply to Annie-23

    Hi, just checking in with you; I’ve had a delay on my follow-up after my admission so instead of happening in October it’s now February. I have to say I’m finding the waiting very tiring. My blood sugar is mostly ok, but still having significant hypos if I don’t get the frequency if eating right. How are you getting on? How is the glucose monitor working for you? Hope you’re doing ok.

  • Offline in reply to HJ1

    Hi , Sorry you have to wait so long ,it seems a long wait for you . IM exactly the same as you . Blood sugar been ok , but plummets quickly if I’m out and about walking . It’s behaving through the night ,the monitor I’m getting used to now . If it reads really low I check with finger prick  before treating , normally I know as I feel shaky so I go by that . My endo has said it’s not imsulinoma too … my  Leeds specialist has ordered Me a pet scan to see what’s going on . They only meet up every 2 weeks  ( the pancreas team ) so they will discuss me this week and arrange scan ) 

    Maybe I might get to know what the 2 cysts are finally ! 

    It’s very tiring and I feel exhausted with it . Take care and I will let you know outcome of my scan too . 

  • Offline in reply to Annie-23

    I’m sorry it’s taking longer for you to get an answer too - I had my fingers crossed for you they’d get a solution quickly. Hopefully you’ll be able to get that scan quickly and you’ll get a definite diagnosis. It’s such a tiring thing to deal with in the meantime. I’ve got a referral to an endocrine nurse at some point (not sure when yet), so hopefully I’ll get some support witht the more difficult aspects of balancing everything.

    I’ll let you know how that goes; let me know how you get on.

    Take good care in the meantime.

  • Offline in reply to Annie-23

    Hi, just to let you know I’ve finally had a follow-up from my hospital admission in August. It wasn’t as definitive as I was hoping for - they’ve said they don’t know at this point what is causing my hypos, but they’re trying me on diazoxide to see if we can get an improvement in quality of life - that’s the biggest problem for me at the moment. I can’t walk more than about 3000 steps without getting symptoms so hopefully the diazoxide will help with that. I thought they had ruled out an insulinoma, but this new consultant doesn’t seem to be so sure that it’s not. Anyway, I have my fingers crossed the new drug will work. Hope you’re doing ok and that you’ve had your scan and results.

  • Offline in reply to HJ1

    Hi , thanks for the update , everything seems so uncertain around these hypos  doesn’t it . 
    My scan shown 2 pancreatic cysts but they are tiny ,and not concerning , the consultant said they will call me. Back every couple of years for mri scan ( sooner if I get pain )

    Insulinoma has been ruled out thankfully . 
    My endocrinologist is very good and doing more tests on me to see why I’m getting hypos 

    I have an appointment In July for a glucose tolerance test in hospital and still have my glucose monitor on , one week not too bad the next lows into the 2,s , 
    I hope the Diazoxide helps you ,it must be difficult when you’re having symptoms constantly . Please let me know how you are doing  ,maybe a72 hour test will help again? with the  new med ,and hope you get some answers soon .