INSULINOMA?!?!?!?!

I was wondering if anyone here has this complication? http://en.m.wikipedia.org/wiki/Insulinoma

I was just told 3 days ago that I have this and I'm scared to DEATH. I'm convinced I'm gonna die. I'm an EXTREMELY nervous person by nature, I have panic AND anxiety disorder. I live in Massachusetts and am going to the Joslin Diabetes Center, which people come from all over to go to. I'm seeing Dr. Mary Patti. I'm afraid I've made this worse for myself, as I was first told I had Reactive Hypoglycemia, and I missed a bunch of appts with her due to a family emergency and frankly out of sheer nervousness. I'm afraid to sleep because who the heck stays up all night to eat every 2 hours? That's what I've been doing all day for the past 2 days....today makes day 3. I eat every 2&1/2 to 3 hours. I'm eating more healthy fats. Nuts, eggs (which I hate), haddock, chicken, peanut butter, & I put ground flaxseed in & on pretty much everything. I even peeled an orange yesterday and dipped it all in the flax. I'm scared to death and even though I wouldn't wish this on anyone, I'm assuming that there are many other RNY patients that have this. I guess I'm looking for people that have this to please give me some advice and possible positive reassurance. I drink Click coffee shakes and put flax in that. I drink South Beach shakes and put flax in those. I'm losing weight, probably because I'm eating healthier and also because my nerves have me in the bathroom constantly....TMI (sorry).......

                  Thank you all in advance,

                      Melissa

I wouldn't worry about it. Just go. If you look on youtube, you'll find that it seems fairly common there. A lot of people who have RH have some sort of small tumors on their pancreas. Just go

Chances being between 1 and 4 per million I doubt lots of RNY patients have insulinoma.

You seem to have excellent medical providers.  

Relax and let the doctors help you.

I deal with severe RH,... And I am able to control that with diet. 

Some of the things you mentioned you eat -i would never eat now, unless I would want to have BS issues. 

I.e orange - no matter how much more fiber I would put on it- the natural sugar in them will not change, so my body would react to it, dumping a lot of insulin, and eventually my BS would drop.

I learned what to eat and how much, and during last year, I only get RH when I do something stupid and ignore my diet

It is not easy, but I adapted. No grains, no starchy vegetables, no fruits ( if I had any, it is seldom, and only berries, and only small serving, paired with fat and proteins. )

I can now not eat for 24 hrs if I need to.  I learn how to keep my BS stable. 

But if I get off the path, and my pancreas gets stimulated, it may take me 2-3 days to balance things. Yes, 2-days.

To survive a night, I typically eat just before bed, but mostly fatty nuts (brazil, pecans, macadamia, walnuts, some almonds), or nut butter. 

Click Coffee mix has way too many sugars for me. Liquid sugars, are always the worst for me. 

So.    What do I eat? 

Eggs, meat, fish, and non starchy veggies. Lots of nuts, and seeds. Nut butters (NSA)

I don't eat dairies (cheese, yogurt, milk, etc) because I developed allergies to dairy proteins. 

But even with all my limitations... I make great food, learned how and what to eat out... 

It can be done.  Controlling the BS by diet.... 

Thank you so much for your responses. My surgeon said that at 1st they thought it was RH, but then he said it was this other thing. He was talking about a tumor on my Pancreas and certain meds that are out there that would be given to be my by diabetes Dr.

He then said that even if I had this tumor removed and took meds, that there's a chance that it still won't help. He then said that he's only done 6 reversals, and he "Really doesn't wanna have to do that to me". I know they have to give you worst case scenarios to cover their butts, but I didn't get much of a good case scenario with it. I'm trying so hard to turn the fright and tears into anger and fight, but I can't seem to do it. I have MS also. Therefore I have no immune system which would make it very hard for me to fight off and recover from things, and I also have panic disorder AND anxiety disorder. Everything is so magnified for me. The fright, the worry, the sadness....by nature I'm not an optimistic person. I've had a LOT of bad luck in my life and rare things happen to me. I'm just so so scared!

    Melissa XO

Hi, I have had an insulinoma. A pancreatic tumor. They're usually very small, nearly always benign. They make your pancreas way over-produce insulin. I had a DS in March 2004, @ 306lbs. Weight loss went great, went down to ~165 in the 2 years after surgery. Then in the fall of 2006, weight started going down to 118. I would have times when I thought I was crazy. What was happening was extreme hypoglycemia but I didn't know it. My family and I went on vacation in May 2007 and I went into a coma. Woke up in an ambulance. They measured my sugar level at 11. I was released after 3 days and told to eat protein every 3 hours or so. I spent 58 days in the hospital that year. The tests they did to see if I had an insulinoma were inconclusive. They decided to revise my WLS in July 2007 and have me put weight on. That didn't help much so in Dec 2007 they reversed what they could of my DS and told me to gain more weight. That seemed to work and my sugars were in the 70 range which was good for me. Then in the fall of 2011 my sugar started dipping into the 20's and 30's. This time the test was a little more conclusive and they did a partial pancreatectomy and got the tumor. I now weigh about 270, and want to get my DS back. The bariatric group here refuses to do a WLS on me; however, they only do the gastric sleeve, and some RNY. I don't want anything but the DS. Bottom line, let them do the calcium test to determine if you do have an insulinoma. I do have to take metformin pills, and do a shot of 10 units of long acting insulin every day. Insulinomas are rare, only 1 to 4 in a million people per year. I was told that I had probably had the insulinoma before my WLS, but since I was so heavy my body could handle all of the extra insulin that my pancreas was shooting out. My WLS in no way caused the insulinoma, but it definitely made itself known when I got so thin.