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Old 08-28-2008, 12:47 PM   #1
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Insulinoma, Anyone Know What Happens??

I'm going down to mayo clinic to get tested for this problem. I've been so sick for almost a year now and I can't work. I don't know whats going to happen when I eat. My nose runs, my eyes water and some times I can't stay awake and need to lay down for hours, up to 6. I have other issues as well but I want to know if anyone has had any experience with this, please email me at [email]REMOVED[/email]. I need to know all I can. Thanks Mike

Last edited by Mod08; 09-13-2008 at 07:00 PM. Reason: Posting of email address is disallowed.

 
Old 08-28-2008, 02:45 PM   #2
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Re: Insulinoma, Anyone Know What Happens??

An insulinoma is a tumor that is growing usually on your pancreas that produces insulin constantly. Insulin is the hormone that controls blood sugar, so the most obvious sign of an insulinoma is having low blood sugar ALL the time, with blood sugar readings under 45mg/dl. I was tested for this last year. Basically you will go into the hospital and be put on a complete fast for up to 72 hours. Every two hours they check your blood sugar on the meter AND through a blood draw to measure your C-peptide levels (which is the body's precursor to insulin). If your blood sugar falls below 45, they will run MRIs or CT scans to try and find if there is an insulinoma. If they find one, or sometimes even if they don't but your blood work is suspicious, they will do surgery on the pancreas to remove the tumor.

There is a slight possibility that the surgery can destroy the insulin producing cells called beta cells in your pancreas if the tumor is on the beta cell area (called the Islet of Langerhans) of your pancreas, but the risk is small. If that happens, you essentially become a type 1 (insulin dependent) diabetic. But that's not meant to scare you, there are small risks with any surgery.

If your blood sugar doesn't fall under 45mg/dl during the fasting period, they may look into other reasons for your problems. Good luck!

 
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Old 08-28-2008, 10:33 PM   #3
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Re: Insulinoma, Anyone Know What Happens??

the last time I was at the doc my blood sugar was 40. I'm worried that this might be a life ending thing because I'm sicker every month. I look like I have aids or something, my appetite sucks because I don't want to get sick so I avoid eating sometimes. I get headaches, and can't think sometimes. When I'm out from eating I can't hold my eyes open for hours. Its scary and I feel like I'm dying sometimes. I don't know what to think anymore, just try to keep it together. Does this sound like what it is. I want to know if I have a chance you know.

 
Old 08-29-2008, 04:54 PM   #4
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Re: Insulinoma, Anyone Know What Happens??

Insulinomas aren't life threatening except if they aren't removed and you have hypoglycemic problems. Your blood sugar of 40 could help to prove an insulinoma, but that was only one blood reading, and the readings MUST be fasting blood sugar readings of under 45. A random reading of 40 could indicate reactive hypoglycemia, or hypoglycemia you get after eating from releasing too much insulin to cover the food you've eaten. To me, this sounds like a possibility since you mention getting sick after eating. What does your doctor say about all this? Believe me, I know hypoglycemia makes you feel like you are dying sometimes, but as long as you eat, you will be just fine. If it is an insulinoma, you will get it removed and you should be fine. Sometimes, the insulinoma can grow back but usually not, and if it does, you get it removed. Mayo is a good place to go, they will know what tests to run and will figure out what's going on. Don't worry about life ending illness, it doesn't help you to worry and an insulinoma isn't a life ending illness.

 
Old 09-11-2008, 06:39 PM   #5
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Re: Insulinoma, Anyone Know What Happens??

thanks for your replies. I feel even worse now because I can't even take the dogs for a walk without getting sick. The weird thing is that when I check my BS its usually in the normal range but I'm sure when I'm out cold after a meal is when its way low but there's nobody here to check it for me. I did my research and when they do the 72hr fast the average time for it to show up is 16 hours. If it does then the real testing begins and alot of different things can happen that might change my life forever, whats left of it. MY concern is that I'm so ******* sick everyday I just need it to end, not get worse and I know in some cases it surely can. Im close to loosing my mind the way it is. I just want to feel normal again. I want it to be over you know. I can't work and even when I went to the store today I felt worse from walking around a little, bizarre. This must be hard on your kidneys because I can sure feel it from time to time. Anyway, thanks again.

 
Old 09-11-2008, 09:31 PM   #6
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Re: Insulinoma, Anyone Know What Happens??

Have you been evaluated by a doctor for this yet? The one thing you could do is to set an alarm before you go to sleep after a meal for every hour and check your blood sugar. At least this way you can get an idea of what your blood sugar is doing during that time.

 
Old 09-24-2008, 12:29 AM   #7
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Re: Insulinoma, Anyone Know What Happens??

I went to the mayo and saw the gastro doc I saw last time I was there and he just got an attitude saying I'm not the guy to see, you need an endocrinologist but I need to send you to internal medicine because he sent you to me in the start. So here I sit again with no answers. When I'm out after eating I can't get up, its like I was druged. When I do come out of it, it takes me a while to just hold my eyes open (sometimes a half an hour) so I can't just get up. Mabey its a bleeding ulcer causing low blood pressure, I don't know but some blood has shown up in the stool but not much and I never puked blood, dark stuff last time. Anyway if I had an insulinoma I would have low blood sugars everyday right? I check it and its always in the normal range at home lately anyway. Sometimes it was pretty low in the 60s after a walk but only once did it show up 40 at the docs office. So If its not low daily its probably not it, but a bleeding ulcer would have blood in the stool or black stool or red vomit, I have none currently so its bizzare. In the mean time my nose runs when I eat, my ears are always ringing, more when I don't feel good, the pain has been all over the place in my stomach lately so ???. I think an upper endoscopy and an ultrasound on the pancreas should be done asap and then go from there. I wish I could see and endocrinologist, they are the ones who do the protien and hormone testing but they won't see me unless they have a diagnosis, wierd huh? Thanks for the note and If I find out whats going on I'll try to let you know.

 
Old 09-28-2008, 03:46 PM   #8
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Re: Insulinoma, Anyone Know What Happens??

It's possible that a GI issue could be causing your fatigue... If you have blood in your stool, you really must get that checked out. Ironically, I have Ulcerative Colitis, so I know all about that. GI issues can cause malabsorption problems, such as vitamin deficiencies which can make you sleepy. Let me know if you find anything out.

 
Old 10-07-2008, 11:21 AM   #9
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Re: Insulinoma, Anyone Know What Happens??

I am pursuing the possibility that Celiac disease or pancreas problems are causing all this since I have a lot of burning pain in the middle of my back along with low grade fevers. The newest twist to this is that pancreatic enzyme suppliments are the only thing so far that helps. If I had Celiac I found that some of those people are on enzyme therapy. It could mean a few things but I want to know where to go from here. I'm also going to see an alergist next week to see about food alergies since my nose runs when I eat among other things. Thanks for getting back and let me know if you have any other advice I appreciate it. Mike

 
Old 10-07-2008, 05:57 PM   #10
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Re: Insulinoma, Anyone Know What Happens??

Celiac is a good thing to get checked out. It would definitely cause malabsorption problems. Did you ever buy a meter and check your blood sugar during the episodes? It's a pretty easy way to assuage your fears about hypoglycemia. Please keep me updated on your progress. I hope you get some answers

 
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