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.

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 . 

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.

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.

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 .

I’m glad they’re continuing with tests for you - I had the glucose tolerance test last year, before the 72-hour fast. Let me know how you get on with that.

You’re right about the uncertainty - it’s very difficult to live with when you don’t really know what’s causing it. It’s difficult to know how to try and stop it happening.

At the moment they’re not keen to do another 72-hour fast, I’m seeing the endocrinologist again in about 7 weeks once he’s had the chance to talk with his colleagues about what other tests they may be able to do. On the whole, though, I’m not confident they’ll get and answer - at least not any time soon.

Take care and let me know how you get on with the glucose tolerance test.

Morning ,My endo rang me this week ,she’s suggested me i do another 72 hour fast , I’m on stand by now waiting for a call when they have a bed . I’m dreading it but she said  she could compare the results . Reading people’s stories I wonder like you if we will ever get answers . I will let you know how it goes as it will be before the meal test . Keep in touch take care .