NESIDIOBLASTOSIS hyperinsulinemic hypoglycemia--RYGB

Yes, the Dr. suspects that my pancreas was putting out to much insulin.  He said it is a result of losing a large amount of weight and your pancreas continuing to pump out the same amount of insulin as before. 

My Dr. has me test when I have symptoms.
Deanne

This post is so timely. I have been passing out (fainting, falling - in other words hurting myself.....) since 10/31 - I was hospitalized because it happened in the pre-op room as I was translating for my dad who was about to have wrist surgery (ironically - he's 83 and went home same day) I spent 4 days in the hospital suffering from tachycardic episodes.

BP - in the 70/50
Heart rate in high 40s low 50's

Felt like dumping - but the kicker is it wasn't happening after eating.

I'm seeing an endrocronologist thursday because my nuerologist found that I had an abnormal autonomic test result and feels that I am suffering from Pots (postural orthostatic tachycardia syndrome)

My surgeon suggested seeing the endo - and looking into nesibioblastosis....as a possibility. In the meantime, I'm not working out on disability because I'm passing out several times a day.

UPDATE: I was hospitalized again on 12/11 after meeting with the Endrocronologist. After 4 days (no food and more dizziness) my sugars dropped to 45 and then I had my blood drawn 4 times. The 1st time @ 45 and the next 3 @ 10 min intervals after having a gluscose push via iv.

I get to go back to the endo on Fri for the results of the test. In the interim, I continue with the light-headedness, racing heart beats, chills, listlessness, and overall sense of malice.

I passed out 2 more times since my last post.  When I not passing out walking from the couch to the kitchen can be as harrowing as a trip to the theme parks.
 

Qbandiva,

I was wondering how you are doing and if your POTS and hypoglycemia have been helped by anything.  I have both as well and am looking for any information that may help me. 

Deanne

Could you please tell me more about what you've gone through? I'm 11 months post op RNY and I seem to have very rapidly developed reactive hypoglycemia. My numbers are going down to the 40s, and it makes me very worried because I have a 4 year old, and I'm terrified I'll pass out when I'm alone with her.

You talked about an enlarged stoma. What does that mean? Does that mean your pouch has been stretched too much? I had several complications early on and they kept thinking it was strictures, it was not, and they kept stretching my opening. So it's larger than it's supposed to be. Could this be related to the hypoglycemia? 

I'm really interested in finding out more about your experience.

Julie

Julie,
Yes it is related to your enlarged opening (stoma).  You are experiencing all the effects of dumping syndrome as well as the hypoglycemia.  Make sure you eat high protein and low GI fruits and vegtables.  Get into see a Endocrinologist or a surgeon who knows about revisions.  I had a revision to and ERNY and it seems to have taken care of my problem, but there is no guarantees to any treatment.  There are medications to help with the blood sugars.   A lapband over your RNY may help as well, you need a Dr. who knows how to treat these issues.  Find another  surgeon if you have too.
Deanne

I was diagnosed with Nesidioblastosis this past Oct. and subsequently had 3/4 of my pancreas removed. I was told at the time that I was the ninth person diagnosed with this in the US as having been caused by gastric bypass surgery. (In my case, a gastric resection - I had the majority of my stomach removed because of precancerous growths in my stomach and a strong family history of stomach/ colon cancer.)

After the resection, I spent over a year getting almost every cardiac test in the book because of my fainting episodes. Because my brother is a diabetic, I suggested a blood sugar test after nothing was discovered during cardiac testing. It showed that I was hypoglycemic - my blood sugar fell every time I ate. My general practioner wasn't concerned - "just live with it". Lucky for me, I had a great surgeon who was concerned. (Of course, it didn't hurt that when they checked my blood glucose level in the hospital it was 28 - and I was walking around and talking. Most people are unconscious when their sugar falls that low.) My surgeon sent me to an endiocronologist who luckily kept up with his reading; ie, the article in the New England Journal of Medicine about Nesidioblastosis. After some nasty hospital tests, it was confirmed- because I was basically non-functional for the majority of the day and because I had 3 episodes of convulsions in the 30 days before surgery was suggested, I went ahead with the operation.

It hasn't exactly been smooth sailing. I developed Wikie's syndrome after the surgery from losing weight too fast. (Intermittent obstruction of the bowel) I've been told that I need to gain weight - NO!!!! - so that the artery that is blocking my bowel will regain its "fat pad". (So far, I haven't had much success with gaining weight.) I'm also likely in the pre-diabetic stage. I won't know for sure until 3 months have passed since the surgery.  However, I'm not sorry that I had the pancreatectomy. My mind is functional again.  My sugar dropped so low before the operation that I was really confused most of the time. I also should say that I still slightly reactive hypoglycemic but it can be controled by diet.

I think many people are reactive hypoglycemic after bypass surgery- but not many people (hopefully) develop Nesidioblastosis (which is when the beta cells that produce insulin enlarge.)

My gastric resection was on March 5, 2007. I started developing symptoms within 4 months of surgery. I currently weigh 120 pounds - down from 269.

By the way, I do not regret the initial surgery, either. I didn't do it for cosmetic reasons. I did it to save my life -- and it did. 

Hi iwantbuttons, Wow, I just found out about this potential diagnosis today at my doc's appointment.  I'm now struggling with high/low blood sugars starting about a year ago (@1yr postop).  He mentioned nesidioblastosis diagnosis after gastric bypass surgery in some patients.  I stumbled upon my blood sugar issues using my husband's glucometer.  If I eat ANY white carbs, my blood sugar spikes to around 220-250 and then I crash to the 60's - just sluggish and tired, no loss of conciousness.  Did your blood sugar spike then fall?  Any suggestions would be appreciated.

if you want more information about nesidioblastosis, the clinic mayo give a lot of information on there site...

http://www.mayoclinic.org/mcitems/mc5800-mc5899/mc5810-0607. pdf

now they say...

hyperinsulinemic hypoglycemia—

occurring in the absence of a discrete

islet cell tumor—after Roux-en-Y gastric bypass

(RYGB) surgery


You can make research on your web browser with pancreas nesidioblastosis mario meunier

You will found a lot of information,,,


but It's just that I am not realy good in english I am really better in french...

I know that if you have already hadd problem with your pancreas it,s because you have to mu*****retin GLP-1 CONCENTRATION

that's why your pancreas have neogenesis of b-cell's

Mario Meunier

 

Yes, my sugar levels spiked and then dropped every time I ate, no matter what it was. If I ate less than 14 gms of any type of carbs per meal, my blood sugar levels didn't rise too high and only dropped into the 40s or 50s within an hour to three hours.

What you're describing sounds more like reactive hypoglycemia, which you may be able to control by diet. Nesidioblastosis caused by weight loss surgery may well be more common than thought originally. From the discussions I had with my endocrologist and surgeon, though, other things can cause hyperinsulinic hypoglycemia...like your body not figuring out that you've lost bunches of weight, so it is still pumping out the same amount of insulin that it was previously producing. I have heard of RNY patients that were reactive hypoglycemic for two or three years following their surgery and then their symptoms disappeared. My guess when that happens is that their body just took a while to figure out that they were smaller. With Nesidioblastosis, the unstable blood sugar is separate from, but affected by, diet. The body just can't regulate itself because of the hyperplasia of the beta cells in the pancreas.

If my symptoms could have been managed by diet, I would never had the operation. The operation to correct the nesidioblastosis (having 3/4s of my pancreas removed along with my spleen in  a 7 1/2 hour operation) was horrible...I thought I knew what to expect because I had an open surgery when I had the gastric resection and my gall bladder removed (at the same time) but I bounced back quickly from that operation - not from this one. I'm still experiencing pain, I'm continuously nauseous, and we won't even talk about when my bowel is blocked (my major complication following surgery). However, even so, I am happy to be able to think again and get back on with my life. 

Pat