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Old 10-21-2006, 10:23 AM   #1
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Question New Here And Need Some Information On Nesidioblastosis...

I went to an endocronogist yesterday. I have been having episodes of faint spells, dizziness, and the shakes. I crave sugar when this happens. The doctor told me that he thinks that I have the disease, Nesidioblastosis. He says it is rare, but no very rare in people who have had gastric bypass(weight loss surgery). I had gastric bypass surgery in 2002. I also had my gall bladder removed too. I now have to carry a blood sugar testing kit and I have to test my blood when I have an episode. Do any of you have this or know anything about it?? I have tried googling it and it is very hard to understand. Any help would be greatly appreciated.

 
Old 10-21-2006, 12:32 PM   #2
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Re: New Here And Need Some Information On Nesidioblastosis...

Nesidoblastosis is a condition where your pancreas makes too much insulin. It's generally a congenital condition and leads to severe hypoglycemia.

Gastric bypass can cause hypoglycemia but it's NOT nesidoblastosis usually, rather hypoglycemia from one of two causes:

1. Due to being overweight, insulin resistance developed. The body realizes the insulin resistance happened, and made more insulin to overcome it. When the weight loss occured, your body was no longer as insulin resistant as it was, but it takes the pancreas time to realize this, so it keeps making too much insulin. If this is the cause, your pancreas will "catch up" and it should go away with time. In the mean time, carry sugary stuff with you and test. The cause of the low bs in this cause is hyperinsulinemia, but using the term nesidoblastosis is a bit of a misnomer in my opinion because nesidoblastosis requires major treatment while this will go away in time.

2. The other cause of hypoglycemia post-gastric bypass surgery is called ailimentary hypoglycemia. Your new small stomach empties faster than you old bigger one did. The result is "dumping syndrome." You eat, the food goes to your stomach, then rapidly moves to your small intestine. Your blood sugar raises from the food, but your stomach empties so quickly that your bloog sugar is raising before the insulin starts to work. So your pancreas creates more insulin, resulting in the drop in bs later. It's remarkable similar to reactive hypoglycemia except that it's an anatomical difference that causes it. The treatment in the same as reactive hypoglycemia- small frequent diets (which I am sure you are doing anyways post gastric bypass) and lower carbs, higher protein.

Since your doctor used the term Nesidoblastosis I suspect case #1 is what's happening with you.

Treatment for Nesidoblastosis typically involves two drugs (either one or both): Diazoxide and Octreotide. Diazoxide is a pill, Octreotide is a shot often given before meals.

The other treatment is pancreatomy, removing all or part of the pancreas. The result of this is often insulin dependent diabetes, so they like to avoid that.

Hopefully your endo will be able to guide you and help you take care of this.

 
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Old 10-21-2006, 05:40 PM   #3
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Re: New Here And Need Some Information On Nesidioblastosis...

I had my surgery over four years ago and this hasn't started happening until the past year or so. He told me after a few tests, I will probably will have to have a portion of my pancreas removed. I don't know. It is all very confusing. Thank you for your response. I greatly appreciate it.

 
Old 10-21-2006, 05:59 PM   #4
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Re: New Here And Need Some Information On Nesidioblastosis...

Just make sure you get a second opinion before you let some doctor start cutting away at your pancreas.

 
Old 10-23-2006, 04:57 AM   #5
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Re: New Here And Need Some Information On Nesidioblastosis...

I will. Thank you for all the info.

 
Old 12-21-2006, 07:54 AM   #6
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Re: New Here And Need Some Information On Nesidioblastosis...

Quote:
Originally Posted by blondy2061h
Nesidoblastosis is a condition where your pancreas makes too much insulin. It's generally a congenital condition and leads to severe hypoglycemia.
True.

Quote:
Originally Posted by blondy2061h
Gastric bypass can cause hypoglycemia but it's NOT nesidoblastosis usually, rather hypoglycemia from one of two causes:
Possibly.

Quote:
Originally Posted by blondy2061h
Due to being overweight, insulin resistance developed. The body realizes the insulin resistance happened, and made more insulin to overcome it. When the weight loss occured, your body was no longer as insulin resistant as it was, but it takes the pancreas time to realize this, so it keeps making too much insulin. If this is the cause, your pancreas will "catch up" and it should go away with time.
Can you help me understand what scientific data that you are basing this on? Or is it your own personal experience?

Quote:
Originally Posted by blondy2061h
The cause of the low bs in this cause is hyperinsulinemia, but using the term nesidoblastosis is a bit of a misnomer in my opinion because nesidoblastosis requires major treatment while this will go away in time.
There is no "treatment" at this time for adult-onset nesidioblastosis. There are varying options that a handful of physicians are experimenting with such as those you have listed (and others you haven't listed).

Quote:
Originally Posted by blondy2061h
Treatment for Nesidoblastosis typically involves two drugs (either one or both): Diazoxide and Octreotide. Diazoxide is a pill, Octreotide is a shot often given before meals.
Both of these are medications, approved by the FDA for the TREATMENT of insulinoma (tumors of the pancreas) - not for nesidioblastosis. Doctors at Mayo Clinic found there to be benefit for some of us who are now afflicted with nesidioblastosis. Another drug used is Verelan which is approved for treating high blood pressure however its Calcium Blocking properties seem to be something which helps us too.

Quote:
Originally Posted by blondy2061h
The other treatment is pancreatomy, removing all or part of the pancreas. The result of this is often insulin dependent diabetes, so they like to avoid that.
Would like to know where you get your data from. My point here is that because there's a very small population who has been diagnosed with adult-onset nesidioblastosis (less than 500), and because research in this area has only been going on for less than 5-10 years, there is no reliable, scientific data, to back up what you just said. There are some anecdotal findings based upon articles like this one:

[url]http://content.nejm.org/cgi/content/short/353/3/249[/url]

The reason that surgeons aren't excited to perform pancreatomy is because the research has not proven out the surgical treatment - one way or another.

As a patient, no matter what the ailment - you shouldn't rush to pull out one of your major organs, especially when the data isn't there to prove the benefits OR the detriments. You don't have to be a genius to figure that one out.

Quote:
Originally Posted by blondy2061h
Hopefully your endo will be able to guide you and help you take care of this.
I highly encourage this individual to get a team of doctor's involved. In fact, contact the Mayo Clinic - the team who performed the study that I linked above. There are small teams of doctor's all over the country who are trying to get a handle on this situation. With millions of people worldwide undergoing Bariatric surgery, literally, we could eventually have an epidemic on our hands similar to diabetes.

Quote:
Originally Posted by blondy2061h
Since your doctor used the term Nesidoblastosis I suspect case #1 is what's happening with you.
Although I'm sure you meant no harm, I'm quite disturbed that you've made a major leap in judgement on a physician's diagnosis. While I do not think that physician's are infaliable, as someone who was diagnosed with nesidiosblastosis seven months ago, I'm highly insulted by your statements.

I had my bariatric surgery four years ago. I lost weight and things were fine until January of 2006. Suddenly, I became anemic. After that was addressed, then the symptoms of nesidiosblastosis popped up. I didn't know what it was. I thought I was going crazy. I had a grand mal seizure. I started falling asleep at the wheel. My entire life was/is turned upside down.

I would LOVE for all of this to be temporary and one day - poof - disappear. If you know that this is the case, I'd like for you to provide me with the names/contacts of individuals and physicians who could validate your statements.

 
Old 12-21-2006, 09:54 AM   #7
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Re: New Here And Need Some Information On Nesidioblastosis...

Quote:
Can you help me understand what scientific data that you are basing this on? Or is it your own personal experience?
You want me to find a source that says that insulin resistance is caused by obesity? I don't have one handy, but there are millions, so I will get right on that.

Quote:
Both of these are medications, approved by the FDA for the TREATMENT of insulinoma (tumors of the pancreas) - not for nesidioblastosis.
I'll admit that my understanding of these drugs is limited, but my understanding was that they work by suppressing the pancreas's ability to make insulin. Using that understanding, it seems like they would be more effective in treating a disorder where the pancreas over scretes insulin, like nesidioblastosis, rather than treating a tumor that's often in the liver, like an insulinoma. But like I said, my understanding of those drugs is limited.

Quote:
Would like to know where you get your data from. My point here is that because there's a very small population who has been diagnosed with adult-onset nesidioblastosis (less than 500), and because research in this area has only been going on for less than 5-10 years, there is no reliable, scientific data, to back up what you just said. There are some anecdotal findings based upon articles like this one:
This is common sense. Removing part or all of the pancreas will make is less effective in doing it's job. It's a treatment often used for PHHI. I also based this on the original post, in which the person stated that a pancreactomy was being considered.

Quote:
As a patient, no matter what the ailment - you shouldn't rush to pull out one of your major organs, especially when the data isn't there to prove the benefits OR the detriments. You don't have to be a genius to figure that one out.
Hence my encouragement of the original poster to get multiple opinions. I'm not in favor of pancreatomies, however, I'm also not in favor of people seizing from blood sugars in the teens. Obviously, that would be an extreme case of nesidioblastosis though.

Quote:
I highly encourage this individual to get a team of doctor's involved. In fact, contact the Mayo Clinic - the team who performed the study that I linked above. There are small teams of doctor's all over the country who are trying to get a handle on this situation. With millions of people worldwide undergoing Bariatric surgery, literally, we could eventually have an epidemic on our hands similar to diabetes.
The mayo clinic has an excellent reputation, that's a great idea.

I'm sorry to have offended you. I've just been studying hypoglycemia for quite some time, and while I have heard of gastric by pass causing ailimentary hypoglycemia, I have never heard of it causing your pancreas to suddenly produce more insulin than it did before. Hence my THEORY that the hyperinsulinemia was always there, but was previously more balanced by the obesity. In order to prove this, however, c-peptides would need to be done before and after surgery. It's a little late for that now though.

I'm not saying it's going to *poof* disappear. Obviously a lot of us wish that were the case, but I have yet to know of a single health problem that occurs with.

I think one thing you missed about my post was my reasoning behind it. You took several quotes out of context. Obesity causes insulin resistance. I can find a source for that. Insulin resistance causes the body to need more insulin, thus causing the pancreas to make insulin in larger than normal quantities. This is not nesidioblastosis because the blood sugar is normal. However, take away the obesity (bariatric surgery) and you take away the insulin resistance. Thus you now have huge quantities of insulin, and no insulin resistance. NOW you have nesidioblastosis. Like I said, without pre and post op c-peptides there is no way to prove this, but can you see the reasoning behind it?

I can also find a reference about ailimentary hypoglycemia following bariatric surgery.

Last edited by blondy2061h; 12-21-2006 at 09:55 AM.

 
Old 12-21-2006, 10:05 AM   #8
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Re: New Here And Need Some Information On Nesidioblastosis...

IR is aggrevated by obesity, from Stanford: [url]http://syndromex.stanford.edu/InsulinResistance.htm#7[/url]

Excess weight causes IR: [url]http://diabetes.niddk.nih.gov/dm/pubs/insulinresistance/#3[/url]

Pancreas tries to keep up with IR by making more insulin:
[url]http://diabetes.niddk.nih.gov/dm/pubs/insulinresistance/#2[/url]

Causes of IR:
[url]http://en.****pedia.org/****/Insulin_resistance#Causes_of_insulin_res istance[/url]


I could provide several more about insulin resistance and how obesity forces your body to make more insulin if you wish, but I doubt that would help. The fact remains that a pancreas that makes too much insulin coupled with low blood sugars is a dangerous situation, and there is no effective way to treat it, that won't help you.

Alimentary hypgoglycemia following bariatric sugery:

Quote:
Alimentary type. Hypoglycemia occurs between 60-150 minutes after food or glucose intake. The rapid absorption of glucose produces an early and excessive serum insulin response. Alimentary type hypoglycemia has two subgroups:
1. those without prior gastric surgery
2. those with prior gastric surgery- either gastric resection or vagotomy.

The severest form of reactive hypoglycemia occurs after subtotal gastric resection; the dumping syndrome of diarrhea may complicate management. A diet high in complex carbohydrate and fiber and low in sugar and fat usually minimizes all of these problems with dumping in individuals with prior gastric surgery [4]. Foods high in soluble fiber intake also can decrease problems with diarrhea after gastric resection. For individuals with normal exocrine function, high fiber diets offer major benefits for management after gastric resection.
from: [url]http://www.hcf-nutrition.org/diabetes_disease/hypoglycemia_article.html[/url]

And this has a brief section on alimentary hypoglycemia:
[url]http://www.jeffmann.net/NeuroGuidemaps/hypoglycemia.html[/url]

 
Old 01-08-2007, 08:33 PM   #9
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Re: New Here And Need Some Information On Nesidioblastosis...

It is confirmed. I have Nesdioblastosis. Yes, adult onst of this disease is rare, it is not so rare in people who have had gastric bypass surgery. The doctor I went to see is my third opinion. There is no medication that treats Nesdioblastosis. Surgery is the only treatment as of yet. Before having gastric bypass, I had no problems with my blood sugar. My symptoms of this disease has been worse. I will be having a guided endoscope biopsy done soon to see what part or if not all of my pancreas is effected. Nesdioblastosis cannot be seen on scans. Insulinomia can and I have had ultra-sounds and cat-scans and that has been ruled out. Insulinoma is a benign tumor that grows in the pancreas that causes hypglycemic episodes. Nesdioblastosis is when the islet cells over produce insulin. I have had episodes like the other poster described. Very scary. The doctor doesn't even want me driving due to it. Basically, I will have to come to a decison of removing my pancreas and becoming a insulin dependent diabetic or continue to have these hypoglycemic episodes. I am a size 2 and I was healthier at the weight I was before surgery. I have a long and hard journey to face.

 
Old 01-08-2007, 09:46 PM   #10
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Re: New Here And Need Some Information On Nesidioblastosis...

I'm sorry to hear you have to deal with all of this crap after your surgery. It must be very disappointing to have something you expected to improve your quality of life decrease it.

I had severe low blood sugar frequently due to hyperinsulinemia before I had diabetes. I didn't have a pancreactomy, instead my body "naturally" took care of it and I now have type 1 diabetes. In a lot of ways, it's easier, but it's still an extremely fraustrating and scary disease. And the risk for long term complications is a lot greater.

Please keep us up to date Tarsha.

 
Old 01-10-2007, 03:32 AM   #11
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Re: New Here And Need Some Information On Nesidioblastosis...

Hi Tarsha,

I feel your pain. As I sit here this morning, trying to get motivated to get up and "do life", I am horribly depressed and wondering if the rock or the hard place is the best way to go. Living in limbo - it sucks. I can't stand to be 1/3 of the person that I used to be (and I'm not talking about the weight as the weight is pouring back on in my attempts to try and stay awake and to function like other human beings).

 
Old 01-10-2007, 03:38 AM   #12
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Re: New Here And Need Some Information On Nesidioblastosis...

You know - I do apologize for being so snappish with you. I think my main issue that - having this situation - people who don't have it - they can't even begin to understand what the few of us are going through. You try and tell people about it - they compare it to diabetes. I sit here and think - wow - I wish I was diabetic because then at least I would have a support group - a group of people who would understand what I was going through. And gosh - not to mention- a group of professionals/physicians who understood that I feel hopeless because I can't exercise (their orders), I'm gaining weight right and left, my clothes don't fit, and basically, if I were to give up, I'd probably die. Right now, it takes everything in me to keep on moving forward - I'm still trying to carry on a normal life. I'm working, being a mother, being a wife. It comes though, at the expense of many other things. There are days that i can't get out of bed. When I get home from work - bed is my friend. It's not so much about "sleeping" as it is of just being able to not have to move.

Wow, a lot to dump off in a message board on a cold, gloomy morning....well off to the shower to start what has now become a routine, barely-functioning day.

 
Old 01-10-2007, 09:24 AM   #13
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Re: New Here And Need Some Information On Nesidioblastosis...

You are so right about the lack of support. Because it is so rare, there isn't the support groups out there. I often feel like not getting out of bed. I have four children and I have to. I sleep with a box of Hot Tamalies because of my need of sugar in the middle of the night. I started taking Glyset today. I am hoping that will help with the amount of hypoglycemic episodes I have been having. Can I ask you if they have you on any medications? Depression coinsides with Nesiodioblastosis. The endocrine systems has a lot to do with our hormones. I was on 100mg of Zoloft and it didn't help. Have they discissed treatments with you? We can be in this together!!

 
Old 01-11-2007, 08:22 AM   #14
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Re: New Here And Need Some Information On Nesidioblastosis...

Hi Tarsha,

Oh yes - I am the poster child for medication! I take Octreotide injections 1ml - 3 times a day. Depending on how bad things get, I may need to add a dose of verelan (orally).

I'm hungrier than I am ever been. What's weird is that when my blood sugars start to take a major dive, I *don't* want to each anything - in fact, I'm nauseated.

I've regained at least 40 pounds of my loss. None of my clothes fit (which of course, should be the least of my concerns - but still).

My endo game me some carb blocker herbal concoction - he thought that this might help me NOT gain so much weight. So far, it hasn't done much for me.

On the depression side - I'm on Cymbalta 60mg. 1 time a day. Does it do any good? That's what my family doctor asked me. My response? Well let's see. My entire life is 180 degrees different than what it was last year at this time. There's no answers for "what's next". I'm 40 years old and feel like I have one foot in the grave. So yeh, sure, it helps.

Sometimes I can't help but be a smart *** .

I was also prescribed Xanax for my anxiety attacks. I only take this as night if I can't sleep.

Regarding low sugar at night - I don't have too many of these issues. My biggest issue (aside from weight gain, depression) is that I fight staying awake. The neurologist said that technically, I now have narcolepsy although he's positive that this has been brought on by the pancreatic issues. I had a day/night sleep study prior to my surgery years ago (which was required by the insurance company) and at that time, I checked out fine. In September, I had another one and during the day time, I could doze off within five minutes. A couple of times - it was less than three minutes.

Re: the extra hunger issue - I had a scope done to see if my pouch was stretched - and the answer was 'no'. Sad, isn't it?

Believe it or not, I'm not angry about my surgery at all. I'm devastated that in this day and age, we don't have a comprehensive - or at least - a holistic approach to health situations like this. Every specialist likes to go off and be their own chief - they don't talk to each other - they don't think the way that I think they need to think (i.e. team approach).

But that's my two cents for today .

 
Old 01-11-2007, 08:34 AM   #15
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Re: New Here And Need Some Information On Nesidioblastosis...

Did they mention removal of the pancreas? I am on Pancreatic enzymes, Glycet 25mg. They mentioned a 72 hour fasting in the hospital for observationa purposes. Have you done this?

 
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