NESIDIOBLASTOSIS hyperinsulinemic hypoglycemia--RYGB

I think the doctor who told you that you were only the 9 th person to be diagnosed with nesidioblastosis was incorrect.  I have it and was diagnosed in 2006.  At that time, Mayo was following at least 20 people and they were seeing a huge increase in people needing diagnosed. 

In my case, it is from RNY.  It started at 2 years out and continually got worse.  My pancreas was secreting 5 times it's baseline of insulin when it was stimulated.   I had 60% of my pancreas removed and while it's helped, it hasn't "cured' me.  I still drop as low as 46.  While that's not as low as I was dropping pre-surgery, it's still pretty low.  Right now, I'm having issues with it being in the low 70's.  I don't function well in the 70's.  To feel okay, I need to be in the mid 80's.  So it's been a balancing act to get the right combination of food without gaining wt, which I've done.

My local doc has been no help.  My surgeon at Mayo basically kicked me out the door after 7 days in the hospital with no follow-up care at all.  My WLS doc doesn't know what to do either.  So I keep trying different combinations to keep my sugar up but to try to lose wt.  It's very frustrating.

 I also was recently diagnosed by my endocrinologist with nesidioblastosis.  It started happening a few years post-op but my blood sugar starting dropping severely and often after a gastric illness I had in January (I am five years post-op in April 09).  Blood sugars in the 20's and 30's are not uncommon for me now.  The nurse and physicians assistant at my surgeon's office told me it was just my diet and that I should not eat any carbs without balancing it with a protein.  Not really seeing this as a great answer, I did see an endocrinologist in Minneapolis who diagnosed the nesidioblastosis and started me on a med to block the digestion of carbs.  I've been on the med for less than a week and am not up to a full dose yet but I am seeing a difference between when I take the med and when I don't.  
Moral of the story, have they tried Acarbose (generic) or  Precose (brand name) meds with you?

I did try Precose and it worked for a while then I was right back to where I started.  Hopefully it will continue to work for you. 

Yup, my PCP told me I just needed to be "educated" by the nurse on how to eat.  That went over really well with me!  NOT!  I told him that I'd been eating the same way for 2 years and suddenly it was an issue.  It took me almost a year to get diagnosed.  And that was with me doing the research and taking it to my endo.  He then referred me up to Mayo.  They are doing research on it.  The endo I saw was a horse's backside.  He no longer sees patients, does only research, which is a very good thing. 

I try to eat about every 2 - 2 1/2 hours.  Seems to help but not with the wt loss.  Catch 22 - stay upright and thinking clearly or get stupid and fall on the floor but lose wt.  Hummmm.

Even after having 60% of my pancreas removed, I still have some issues, but not nearly as severe.  If I'm not stupid with what I eat, I can usually do okay.  But some days, it makes no difference in what I eat, and I still drop.

Stay in touch and email me privately if you want to.  [email protected]

Emily,

Please email me again.  I managed to lose your recent email.  [email protected]

I have been having severe problems for over several months now.  It affected my job in which I loved dearly and lost because I became a liability due to passing out at work.  I have now since passed out over a dozen times or more since August  of this year.  I had open RYGB almost two years ago on March 28, 2006.  I have had sever neurological problems with blurred vision, doubled vision,  I have also had been diagnosed with fibromyalgia due to severe pain through my entire body.  This has been very depressing for me because no one not even my Surgeon nor the Neurologist, Endocrinologist, Rheumotologist that I had seen knew anything about Nesidioblastosis.  My wife had spoken to some lady at our church about a friend of hers that had had the Gastric Bypass surgery and had similar symptoms of mine and it had to do with an enlarged pancreas.  So today I googled enlarged pancreas and gastric bypass surgery and here I am on the Obesity Help which I have been on for some time now and I feel blessed that I can turn to people that are or have been in my same situation.  My wife just had Laperscopic RYGB and I pray she doesn't nor never will experience these symptoms.  I just want my life back.  Fortunately my wife works at my Family Doctors office and he is caring and good and when I found this information today I called her crying and I will admit I had some regrets at some point running through my mind like what did I do to myself but I know when I was 473 pounds I was not as healthy as I am now.  I had gotten down to about 305 I am now at 325.  I have also been diagnosed with Hashimotos disease as well these past couple of months which I don't know but may be a chance of a possible side effect of GBPS too. I am trying to maintain and be active but my body rejects activity and there are days I cant even get out of bed because I am in so much pain after doing so little.  Early on I was exercising and walking a lot and going to the gym and then all of a sudden after losing so much so quick it went and did a 360 degree turnaround.   I can only hope and pray things will get better after all this is taken care of.  God Bless

I have lost 245# dince my RNY surgery at Hershey, PA in 2001 (before Dr. Ku went to Wyomissing). I lost all this weight and didn't start showing signs/symptoms of Nesidioblastosis until 1-1/2 yr. ago. I have since been to Hershey Medical, York Hospital, Johns Hopkins, and University of MD to find, first of all, an Endocrinologist who would listen to me (I even went back to Dr. Ku for help). All but the one at UMD kept telling me that I had to eat mega Complex Carbohydrates which would send me crashing into LBS (low blood sugars). I was having fainting, sweats, headaches in the middle of the night, shaking, confusion, and even had driving privileges taken away from me for a while. They finally diagnosed me with Nesidioblastosis and (possibly Nesidioblastoma). they were saying that it was caused by the RNY but that didn't make any since because I had gone 7 years without any complications. Finally, my endo worked in conjunction with the Oncology Surgeons at Hershey, and after a solid year of tests, different medicines (some in the trial stages), they decided to perform the Pancreatic surgery. They told me that they were taking 2/3 of the pancreas but ended up taking 90%, my spleen, and some of the intestine that was "stuck" to the other organs. they decided at that time that my Nesidioblastisis was not caused by the RNY.

I had this surgery in August, 2008, and was fine until I got more active. then it all started again. I am now in the process of going through all of the above, again. I have sent a spread sheet chronicaling every bite I eat, when I eat it, what the reaction is, BS (blood sugar) levles before, 1 hour after, and 2 hours after I eat, exercise and BS reactions, and if I wake up in the middle of the night. There has been no reason and no telling when my sugar will drop. I can't eat fatty things at all, even have difficulties with Olive oils in cooking. The only thing that is consistent is Low-fat, low-calorie cheese, I carry it with me at all times (the normal sugar could send me into a roller coaster of BS problems all day).

the same Dr. are confused and are talking about complete pancreatectomy, which scare me because of Diabetes.

I HOPE AT THIS TIME YOU ARE IMPROVING YOUR CONDITION WITH NESIDIOBLASTOSIS. MY SON HAD   A RYGP 7 YRS. AGO. HE STARTED TO DEVELOP S/S OF NESIDIOBLASTOSIS BUT HIS MD'S DID NOT HAVE A CLUE TO WHAT WAS HAPPENING TO HIM  DESPITE ALL THE TEATING THEY FOR HIM. THEY DID ALL BUT THE RIGHT ONES THAT SHOULD HAVE BEEN DONE FOR S/S OF NESIDIOBLASTOSIS. ON FEB. 1, 2010, HE PASSED OUT WHILE DRIVING TO WORK VERED OFF A THREE LANE HIGHWAY, HIT A TREE AND WAS KILLED INSTANTLY. I AM AN R.N.9retired0 AND HAVE SPENT MANY HOURS REASEARCHING AND LEARNING ALL I CAN ABOUT THE DISEASE. ONE DRUG TREATMENT THAT IS BEING USED TODAY WITH SOME SUCCESS IS NIFEDIPINE HAVE YOU HEARD OF THIS RX FOR  THE TREATMENT OF NEISIDIOBLASTOSIS?

I am better than 10 years post op.  I have had extremly low blood sugars for several years.  Sometimes as low as 30.  And yes I can walk and talk when I am that low.  My endo is starting to think nesidioblastosis.  I am just wondering about what kind of testing you all went through and what I should be asking for.  BTW I lost about 200 pounds.

I posted on this back in May, and figured I'd give an update on my situation. I have ended up finding a world class surgeon Dr. Fielding who is affiliated with NYU in New York City. It's about a 3 hour trip for me to see him, but it has been worth it! He has been more helpful than anyone I have seen thus far.

My diagnosis is... Hyperinsulinemic Hypoglycemia with Pancreatic Nesidioblastosis. It took me almost 6 months to get a diagnosis, and I'm hopefully optomistic!

The solution for me so far is that I am going to be having a gastric band put on over my RYGB surgery. My original Dr. wanted to do a Stomaphyx, but several studies have found that this is only a very temporary fix and the patients end up going back for the band. I have surgery for my band scheduled  for Nov 9th 2009, and I'm hoping that resolves it. In most patients it does. If not, then I'll be sent to the Mayo Clinic for a Distal pancreatectomy. 
 
The most helpful article that I found and shared with my nutritionists and bariatrition is... Severe recurrent hypoglycemia after gastric bypass surgery. Obesity Surgery, 2008;18(8):981-8). Written by K. Z'graggen, Berner Viszeralchirurgie and Schweizerisches Pankreaszentrum Klinik Beau-Site Bern, Bern, Switzerland.

I hope this helps to spare someone from the HELL that I went through (and still am somewhat until Nov)

One thing that I have found that has helped a small amount to reduce the "attacks" are ReliOn Glucose Tablets that they sell at WalMart. http://www.walmart.com/catalog/product.do?product_id=7983616 Ask your doctor! They are over the counter, and may be helpful!! They have helped me bring my sugars up quick when they drop down real bad, they've prevented me from passing out a lot more! until I get to surgery!