Quote from blondy2061h:Nesidoblastosis is a condition where your pancreas makes too much insulin. It's generally a congenital condition and leads to severe hypoglycemia.
Quote from blondy2061h:Gastric bypass can cause hypoglycemia but it's NOT nesidoblastosis usually, rather hypoglycemia from one of two causes:
Quote from 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 from 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 from 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 from 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:
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 from 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 from 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.