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, too, have reactive hypoglycemia.  I sleep 12 hours at times with no problems.  I have not heard of insulinoma, but I would trust your doctor and follow whatever plan she puts you on.  She obviously is aware of your condition and what it will take to control it. Best of luck! God Bless!

Laura

Hi Laura,

Thank you so much for your response. 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

I just wanted to reply, I have no really helpful info, but I feel your pain and anxiety in your post.  I have never heard of insulinoma, or it being and sort of side effect specifically related to surgery.  

Please- TAKE A DEEP BREATH and make your appointment to follow up and deal with your diagnosis.  Avoiding it is only prolonging your agony, and your anxiety.  Of course, they will tell you all the worst case scenario things, because ether must, but try to focus on the possibilities that they're may be a surgery and a pill that can control the situation for you, which will make life much easier for you.  

I get bouts of hypoglycemia and I know how horrid they can be.  Again, I however, have never heard of insulinoma.  Have you been instructed that you need to eat every 2 hours 'or else'?  Could you possibly make a protein shake and keep it bedside to sip on in the middle of the night a few times?  Some people find that certain proteins will maintain their blood sugar better than others- maybe there's one that works better for you and you could be sure to eat that before bed?  

Sorry if my thoughts are too simplistic off-point for your specific condition.  The real reason I wanted to reply wasn't to provide a solution, just to tell you I hope you can find the strength to move forward and get to your follow up appointment to get treated.  Letting your mind run free with the fear of the worst case or the unknown can be so much more stressful than just dealing with it head on, even though dealing with it requires a push of courage.  Hang in there.  You can get through this.  

Hello, I was diagnosed with this in 2010 it took a year of crashes and my lowest being 32 where I was incoherrant thank god my husbands mom is diabetic so he knew what to do!!  No one including my surgeion knew what was wrong with me.  Finally I changed Primary Care Doctors and he listened to me, gave me a sugar meter, told me to monitor my sugar and keep glucouse on me.  He sent me to an Endocrinologist with experienc with Gastric RNY patients.  He diagnosed me and gave me Acarbose, worked but made me sick.  So I did away with it and researched my self to death.   I have continued to battled this disease for years and the ONLY THING that works for me is being very strict with myself.  I have 60 to 105 mg of protein a day, very little carbs and when I do they are complex whole grains, and only natural sugars and watch the glycemic load so high fiber fruits and ABSOLUTELY NO FRUIT JUICES or drinks with sugar of anykind.  I have a lite Greek Yogart usually a Dannon 80 calorie or a Chobani 100 they do have sugars in them but naturally occuring and I have the lower sugar higher protein as they vary by a couple of grams by flavor.  I will be completely honest I was not stable until 2013 and many ups and downs with this disease, I developed all my bad pre surgical bad habits and over the course of 5 years from being diagnosed, ups, downs, trials and errors I gained 54 pounds back, I finally said enough is enough and went back to what works for me what makes me stable and I am down to 50.5 and will be back to my lowest eventually but for now I am working on getting my healthy habits back, I had a binge eating disorder so it is hard, but I take it one day at a time and I will do it.  You can conquer this too!  Don't be afraid, eat healthy think of your immediate post op say 6th month and what you ate.  How you felt, go back to that.  Stay away from fast foods and processed foods and added sugars.  When you work out, protein before and right after and don't over do it.  Better to work out 30 minutes at a moderate pace 3 to 5 days a week than over due it and crash.  Hyperinsulemic Hypoglycemia is the clinical word for Reactive Hypoglycemia is what I was told by my Endogrinologist.  And it can get to where you need part of the pancreas if not the whole thing removed if you don't take care, don't mean to scare you after telling you not to be afraid, but that is only a really last ditch thing they will do and I was told if you are very diligent and do what is required for yourself you can like most other medical conditions keep it in a remissive state.  I wish you the best and I am back on here and will keep myself on here as it helps me find comfort that I am not alone and keeps me honest with myself. 

Hi Marie...

I read your very interesting post regarding "reactive hypoglycemia"...I had a kidney/pancreas transplant 12 yrs ago which left me diabetic Free.  What caught my attention about your post was:  I didn't know you could live without a Pancreas or I suppose living as a Type 1 diabetic, however, I would think perhaps a transplant of a pancreas may be possible....Occasionally, I have a low blood sugar and just take a couple glucose tabs and that takes care of me.  It is possible I may have been too busy not to have eaten or busy that day.  Whatever, it is I should address the low sugar....

I can't really comment on the original poster's subject of Insulinoma...

I do wish you both good luck and going to Joslin Diabetic Center is a gift to take and run to.  

Good luck,

alese inFL

Hope you are feeling better now. I just logged in and saw this post. Being treated for similar here in CA. My NUT told me to mix specifically Argo Brand cornstarch in a little bit of almond milk before I go to  bed (like three oz, max) and it regulates my reactive hpyoglycemia overnight while i sleep. I had been dropping down into the low 20's in the night and feeling really sick all day. Incredibly tired. I don't always feel my lows, so I have been testing after each of my six meals. LOVELY fun. going to UCSF to deal with insulinoma next week. Good luck to you!