I'm also new here and struggling with hypoglycemia that isn't an insulinoma. I'm afraid it's nesidioblastosis. I had RNY May of 2004. Since last spring I've had increasingly frequent episodes of hypoglycemia. I'm seeing an endo but haven't made a lot of progress yet. He had me prompt an event then he drew lots of blood. My insulin, proinsulin, and c-peptide were all high. So then I had to do an 18 hour fast. No hypoglycemia, and all labs were normal. I've been as low as 38 several times, and in the 40's several times.

It's frustrating bacause I have to eat so darned often that I'm gaining wt. :mad: Today for example, I had a scrambled egg, and a slice of bacon. My fasting sugar was 81. An hour after I ate, I was already down to 70 and feeling funky. So I had a protein bar. For lunch I had a bowl of chili (no crackers) and dropped into the 60's.

Last week for the first time, I dropped after exercising. It's getting pretty scary. I'm supposed to have more labs drawn this Friday, wait a month and do it again. I think I'm going to insist he sends me to Mayo if the next set of labs are abnormal. I'm scared to wait another month. I have to be able to drive and I'm worried about not being able to. I always check before I get behind the wheel.

Any info or insight anyone can give me would be appreciated. I'm not sure how to eat anymore. Carbs do it and now protein does it. How much do I have to eat at a time to raise my sugar and what is anyone else eating to do that?

Thanks much!

Lyn

Were the labs done fasting?

The fact that you didn't drop during the fast suggests it is more along the lines of reactive hypoglycemia, but that fact that you kept dropping with the protein suggests is more fasting hypoglycemia. It could be a combo of both. I'm a big believe that not everyone fits nicely in a category.

I have it and I had RNY in 2002. How you feel is what I have been battling for several years. The hospital that I have been going to is conducting a study on people who have had RNY surgery and now have Nesdioblastosis. I will be going in soon for a procedure to see what part of my pancreas is affected. They will place a cathader in my groin and take tissue from the ducts and test them. The only treatment for Nesdioblastosis is either partial or complete removal of the pancreas. Also, I was told not to get behind the wheel. Episodes can happen at any given time sometimes without warning.

Where are you going for the calcium stim test? I know that Mayo is doing studies. I think that's probably where I'll end up at. My fasting labs are all okay which rules out an insulinoma. Today I bottomed out on an apple with peanut butter and SF yogurt. Last week I dropped to 48 on hamburger. I never had problems before last summer. I never dump either. Which is a little strange. I just really want to get this figured out and soon. I would like to keep in touch with you.

Lyn

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Where are you going for the calcium stim test? I know that Mayo is doing studies. I think that's probably where I'll end up at. My fasting labs are all okay which rules out an insulinoma. Today I bottomed out on an apple with peanut butter and SF yogurt. Last week I dropped to 48 on hamburger. I never had problems before last summer. I never dump either. Which is a little strange. I just really want to get this figured out and soon. I would like to keep in touch with you.

Lyn

Burlington Vermont is where I am having my procedure done. On the 15th of Feb. I would love to keep in touch too. This is so rare, but seems to be an epidemic with us post-ops.

I had more labs drawn Friday. Imagine my surprise when I asked what it was and the reply was a calcium and PTH. I asked what about the hypoglycemia? "Well, sometimes that can be affected by the parathyroid." NOT! So I guess I'll have a little chat with my endo. Basically, he told me to watch my diet and to exercise. Now how is that going to help when I dropped from 82 to 63 after 30 mins on the treadmill? I'm going to insist on a referral to Mayo and hopefully soon. The other day I left work, and went to work out. I always check before I work out. I was 59! That was an hour after I had an apple with peanut butter and SF yogurt. Needless to say, I didn't exercise. I snarffed down a couple glucose tabs and a protein bar, waited 15 minutes and then drove home. It's scary. I can't seem to get a handle on what foods are triggers and what isn't. One day a food will drop me and the next it won't.

Are you ever low when fasting? Only rarely am I. It's after I eat. This morning I had a protein shake for breakfast. I dropped 15 points. GRRR.

Stay in touch!

Lyn

Lyn, maybe the endocrinologist wanted to just make sure he covered all his grounds? Hypoglycemia is pretty rare, and can be caused by a lot of different things.

What is your lowest lab drawn documented blood sugar? That's very important, because glucometer readings aren't considered accurate enough for diagnosis. My blood sugars used to go down to the 20s, but my lowest lab drawn one was like 60, so that wasn't low enough for attention.

How low do your blood sugars go?

The fact that you go low after eating instead of fasting sounds more like reactive hypoglycemia to me.

What are your c-peptides like? Mine were 6-7 (fasting) before I had diabetes. Now they're non-existant, but that's another story. Nesidioblastosis will cause high c-peptides.

I honestly think I had nesidioblastosis, but I was terrified of my endo (she was worthless) so I just dealt with it until my body "cured itself" so to speak.

Definately, we need to keep in touch on here. My lowest blood sugar was 27. Everybody reacts differently with low blood sugar levels. I start having symptoms of hypo episodes when I hit 63. I go in on Feb 16th for a venus sampling of my pancreas. I also have secondary hyperparathryoidism. It might go hand in hand. Not sure. Definately be your own advocate. This disease is rare and not many people know much about it. Also. keep in mind that ,yes, a part of having this disease is reactive hypoglycemia. It is awful funny that every person on here who has mentioned nesdiblastosis had gastric bypass surgery. There is another girl who has it, but I haven't seen her post in awhile. She also had the surgery.

Good luck with your testing Tarsha.

Good luck with your testing Tarsha.

Thank you very much.:)

My lowest lab blood sugar was 38. I was pretty much non-functioning at that point. I also have 4 gland hyperparathyroid hyperplasia. They aren't sure why. My calcium level is always normal but my PTH is always elevated. Altho, it has been coming down. I have bone loss even while taking Fosamax. My rheumatologist had me take D3 (super vit D) and my PTH went up. He was a little shocked at that. Had all the super duper scans at Mayo and they couldn't figure out what was going on either. At that time, the endo thought it was from the gastric bypass but that doesn't explain why it was elevated B4 I had the surgery.

My sugar has also now been dropping with exercise. Not cool when I drop 20 points when I start at 80. I'll be like George Jetson on the treadmill!

Whether it's nesidioblastosis or reactive, I need some way to fix this. It's scary. The strange thing is that I've been eating this same way ever since RYN in 2004. Why is it now a problem? Oatmeal will do it do me everytime. Last winter I ate oatmeal everyday and never had a problem.

I was a lab tech for 20 years so I know my way around the medical jargon and lab tests. I'm not your average person off the street who doesn't know what a normal fasting blood sugar should be let alone a 2 hour. When you're 2 hour is 30 points lower that your fasting, that's a problem no matter what the cause.

Found out my endo is out of town this week so I won't get any answers until next week. My insulin, proinsulin, and c-peptide were all off the charts when it was drawn when I was at 38. But normal while fasting. I guess maybe I should just fast all the time???? :-) I could probably lose the rest of the wt I would like to, don't you think???

I'll be anxious to hear how your tests go on the 19th.

Wouldn't it be nice if we could just stop eating and solve all our problems?

I know my basal rates are set correctly, so if I were to stop eating, my blood sugars would be perfect all the time too.

I had my venus sampling of my pancreas done this past Friday. They administered a cathedar in my neck and in my groin. The procedure took place at 9:00 a.m. I didn't get discharged until 7:00 p.m. I was vomiting from the sedation. I couldn't hold anything down. I should know the results any day now. I will update when I know more.

Tarsha, I'm so glad you posted. I've been thinking about you. I finally have an appointment set up for Mayo Clinic the end of March. They said to be prepared to stay 4-5 days. I just found out Tuesday during a routine eye exam that I now have macular changes. My eye doc thinks it's from the blood sugars being all whacked out. So I have to have an opthomologist evaluation at Mayo also. What next?

So was the calcium stim painful? How long did the procedure take and were you pretty much out during it? I hope you get some answers soon. I bottomed out last night at 43 an hour after supper. Drank milk, ate a protein bar, and 3 glucose tabs and an hour later was back down to 46. I called today to see if I can see an educator to try to figure out how to eat to ward this off. My guess is that nothing will work. Hasn't so far.

Stay in touch.

Lyn

I used to have marathon lows like that and occassionally had to use glucagon to bring myself out of it.

Eating fat and protein during a low blood sugar will cause the low to last longer. My advice (and it's very diabetically minded) it to consume only simple sugar (juice, regular soda, glucose, honey) until your blood sugar is up, then eat complex carbs, protein, and fat to maintain your blood sugar.

Do you ever eat real carbs? Like pasta, bread. What happens then? Jen

Tarsha, I'm so glad you posted. I've been thinking about you. I finally have an appointment set up for Mayo Clinic the end of March. They said to be prepared to stay 4-5 days. I just found out Tuesday during a routine eye exam that I now have macular changes. My eye doc thinks it's from the blood sugars being all whacked out. So I have to have an opthomologist evaluation at Mayo also. What next?

So was the calcium stim painful? How long did the procedure take and were you pretty much out during it? I hope you get some answers soon. I bottomed out last night at 43 an hour after supper. Drank milk, ate a protein bar, and 3 glucose tabs and an hour later was back down to 46. I called today to see if I can see an educator to try to figure out how to eat to ward this off. My guess is that nothing will work. Hasn't so far.

Stay in touch.

Lyn
My endocrinologit told me that it really doesn't matter what you eat sometimes. I can eat salads with no dressing and still buttom out. There is so little known still. I got my results. It is borderline Nesidioblastosis in the head and tail of my pancreas. He wants to try me on injectibles. I am not sure of the name. I guess they are slow getting into the system, so I will have to start off injecting myself two to three times a day. He also told me that he us unsure this will work, but wants to try this before surgery is looked into. Because it is in my head and tail, the whole pancreas would be removed. I don't want that. Also, he wants a neurologist to follow up on me also. I am unsure why. He says Ihe is worried because I am also experiencing symtoms of hypoglycemia even with normal blood sugars. My procedure was out patient Lyn. I wasn't in any pain, just the nausea. It took 2 hours, but I stayed all day due to me being so sick. Good luck with everything and I will update further and please do the same.:)

Tarsha- was it Octreocide?

Tarsha- was it Octreocide?

I am not sure. That kind of sounds familar though. I should be hearing from him anyday and I will let you know.

Do you ever eat real carbs? Like pasta, bread. What happens then? Jen


Yes, I eat real carbs. Not often and not a lot. I usually use a low carb bread, 4 carbs per slice. Pasta only sparingly. Sometimes it really affects me and sometimes not at all. But then, this whole thing has been really strange. My blood sugar has dropped to the mid 40s on hamburger. But stayed okay after eating a cookie. The next time I try to cheat and eat a cookie, like Wednesday, I drop like a rock.

Tarsha- was it Octreocide?

Yes, it is. I don't like it. I took my first injection yesterday and the stomach pain was unreal!!:( Do you have any experience with this medicine? I have to double the dose in a week. I cannot even imagine!!

Yes, it is. I don't like it. I took my first injection yesterday and the stomach pain was unreal!!:( Do you have any experience with this medicine? I have to double the dose in a week. I cannot even imagine!!
I don't have any experience with this particular med, but I do know some meds cause stomach pain at first, and then it goes away with continued use, so maybe that will happen.

My endo put me on Precose to help with the hypo until I can get to Mayo the end of March. I take it three times a day with meals. So far, I've done pretty good with it. I think the lowest I've been since I started it is 70. I can live with that. And no side effects as of yet. But then, it took about 3 weeks for me to feel really awful on the metaformin. I'm guessing tho, that this med won't keep the hypo at bay for very long if it is nesidioblastosis. I found an interesting article written by Edward E. Mason MD in the IBSR newsletter, Winter 2005. He was one of the pioneers in gastric bypass surgery at the University of Iowa. He talks about the mechanics of why this happens. One person had their RNY reversed but it didn't make the nesidioblastosis go away. I was wondering about that. Not that I would have it reversed. Anyway, you might want to Google on him and see if you can find it.

Thanks for that info Lyn. I will have to check it out!! I also read somewhere that it was mentioned to try to reverse the surgery and to see if the disease goes away, but there is no evidence that it does.:( I hate this. The stomach pain is not an issue anymore. I think that I am only on this injection for a couple of weeks. Not sure what they plan on doing after this. I double the dose next week. I am glad you seem to be responding to the meds.

Saturday I forgot to take the precose the whole day. Bad. I dropped to 43. So it does work. My endo called today and was pretty surprised it was working as well as it is. I asked him if I have nesidioblastosis and he said I do, but it's called something different in gastric bypass patients. He also said mine is severe. Lucky me. It will be interesting to see what Mayo says about the precose. I also have macular changes in my left eye. My eye doc wonders if it's sugar related. We'll just have to see how this all plays out. My first appointment is March 28th.

Saturday I forgot to take the precose the whole day. Bad. I dropped to 43. So it does work. My endo called today and was pretty surprised it was working as well as it is. I asked him if I have nesidioblastosis and he said I do, but it's called something different in gastric bypass patients. He also said mine is severe. Lucky me. It will be interesting to see what Mayo says about the precose. I also have macular changes in my left eye. My eye doc wonders if it's sugar related. We'll just have to see how this all plays out. My first appointment is March 28th.
Lyn, what is it called in people who had gastric bypass? Is it alimentary hypoglycemia?

I'm suprised the Precose works. Why do they use it, when it's meant to lower bs?

It's called noninulinoma pancreatogenous hypoglycemic syndrome or NIPHS for short. Quite a mouthful. My endo is surprise the precose has worked as well as it has. It blocks the absorbtion of sugar in the gut. So while it lowers blood sugar in diabetics, in me it helps prevent the huge insulin response I get from eating anything. I found and article by Dr. Service at Mayo from November in a paper called Residents' Clinic. Very interesting reading. In normal hypoglycemia (reactive) insulin levels will be low. In me, they are very high. Dr. Service talks about different treatments and basically says that the only definitive treatment is surgery. He says he expects the incidence of NIPHS to increase as bariatric surgeries increase.

If you are intersted in the article, try going to www.mayoclinicproceedings.com. It's the November 2006 issue. Don't know how easy it is to find. I found it by googling. It's Dr. F. John Service.

That's fascinating to me. I never had gastric bypass surgery, but back when I had hypoglycemia my insulin levels were low. I was labelled idiopathic hyperinsulinemic hypoglycemia. I wasn't reactive though- eating raised my bs, however temporarily.

Tarsha, come out come out where ever you are!

I'm wondering how you are doing. I'm still taking the Precose. Altho, I did have an episode today. Dropped down to 63 at work. My appointment is March 28th. I emailed the doc and asked if I should be taking the precose when I go. He said that if the meds were taking care of it, he doubted I needed to be seen at Mayo and they certainly wouldn't be offering surgery. I went balistic. :blob_fire No one mentioned to me that I was going to be evaluated for surgery. Silly me, I thought it was to be diagnosed and then a treatment plan. I emailed him back with that and haven't heard from him. But I still do have the appointment. My endo couldn't believe he said that. My endo here said NIPHS is progressive and eventually the meds won't work. Oh joy. Something to look forward to. NOT.

Hope you are doing well.

Lyn

Hello all of you,

for now I take the time to try to talk to all of you here but I am realy not good in english. sory,

right now when I type that reply I am at the hospital. for do test. I am hospitalized since january 4. I add gastric bypass on 2000 and start to have realy bad hypo in 2002. I have after the gastric bypass (in french we say roux in Y for the kind of surgury I have) lost from 450 to 170 pound

now I am at 260 I have regain 90 pound because at the begenign of my hypo each endo here in montreal was tink that if I do hypo it's because I need to eat more. I was eating only 1600kj and I was suppose to eat 2200. they change my diet and I start to gain pound and do more hypo.

now every time I eat someting I feel bad and do hypo all the time.

they have try somatostatin diazoxid and prandase. 3 kind of medication. the somatostatin for me was verry bad. I tink it's octreotid same ting.

for my part that medication block my glucagon and not insulin.

I have do the test this week for know wich part of my pancreas was more affected I wait for news about that.



but I have one question. if they cut a part of pancrea... that will not change noting. I think they need to do revers of gastric bypass

because at this point if they cut the pancrea they dont remove the problem. the problem is the way GLP-1 activate insulina.. and the GLP-1 can be activat whit sugar in low intestin and whit nervous system. that's why the nesidioblastosis his hard to found. you can do hypo when you eat and you can do hypo if you have a good fraid of someting or if you are realy angry or if you have a lot of emotion.


some of you have ear about reverse the gastric bypass?

I agree there I am fine until even one piece of food touches my mouth I sometime think i just look at it and my sugars rise :)

Hi Girls,

I'm back - after a small absence. How is everyone? I'm still suffering big time. I've gained a TON of weight - injecting 1 mg three times a day of octreotide....I can't eat sugar like there is NO tomorrow...I am always hungry...and constantly depressed.

But other than that - I'm great!

( REMOVED )

It was a scary thing (and still is).

Please do not post websites except as described in the posting rules section titled "How to share information".

Sorry. I have been MIA. My aunt passed away yesterday morning. She had cancer. It is amazing to me how we all had gastric bypass. In regards to reversal. It is not a guarantee. Neither is the pancreaomy.(sp?) I have been taking 10 units of oceatride(sp?) every night. I have severe stomache pain though. I have to take Tylenol PMs whenever I take it. My endo doesn't want to perform surgery. The disease is in the head and tail of my pancreas. I have had fewer episodes since taking the shots, but the pain is horrible. My endo also wants to find a dosage that I can take once a month. I don't know. I also heard that this disease progresses too. I wish there was more info out there about this.

How can a pancreaectomy (at least a complete one) not gurantee the hyperinsulinemia will go away? The only reason it wouldn't as far as I can tell is if it were from an insulinoma.

How can a pancreaectomy (at least a complete one) not gurantee the hyperinsulinemia will go away? The only reason it wouldn't as far as I can tell is if it were from an insulinoma.

I honestly don't know and I don't think doctors have an answer either. That is why I don't want my pancreas touched. Maybe if I stay on the shot, they might find a better treatment for this disease.

How can a pancreaectomy (at least a complete one) not gurantee the hyperinsulinemia will go away? The only reason it wouldn't as far as I can tell is if it were from an insulinoma.

First - you can't NOT have a pancreas. When they do a pancreaectomy - they remove up to 95% of it - not all of it.

Second - the verdict is still out on why sometimes, people still develop symptoms and why - after partial removal - they do okay.

And by the way - Insulinoma - is a pancreatic tumor. I don't have pancreatic tumors. I have pancreatic islets that are - well - basically - hyperactive.

From the 2005 NEJM

"We attempted to determine whether hyperfunction of pancreatic islets as a result of nesidioblastosis, which is characteristic of the noninsulinoma pancreatogenous hypoglycemia syndrome, or insulinoma [U]was the basis for the hypoglycemia and to determine the possible role of gastric bypass in the genesis of the abnormal islets. "

First - you can't NOT have a pancreas. When they do a pancreaectomy - they remove up to 95% of it - not all of it.

Second - the verdict is still out on why sometimes, people still develop symptoms and why - after partial removal - they do okay.

And by the way - Insulinoma - is a pancreatic tumor. I don't have pancreatic tumors. I have pancreatic islets that are - well - basically - hyperactive.

From the 2005 NEJM

"We attempted to determine whether hyperfunction of pancreatic islets as a result of nesidioblastosis, which is characteristic of the noninsulinoma pancreatogenous hypoglycemia syndrome, or insulinoma [U]was the basis for the hypoglycemia and to determine the possible role of gastric bypass in the genesis of the abnormal islets. "
First- I HAVE heard of people who have had total pancreactomies. They need to take insulin and pancreatic enzymes, but you can live without a pancreas.

Second- I didn't say you had an insulinoma. I said that I could understand why the hyperinsulinism wouldn't go away with a pancreactomy ONLY if it was caused by an insulinoma- which I believe can metastasize to the the liver, btw (at least a search for "hepatic insulinoma" supported this idea). My thoughts were if the pancreas was removed, the only way there could still be hyperinsulinemia is if it was from a tumor elsewhere.

I understand the whole hyperactive islets thing- I had them for ten LONG years. My highest c-peptide was almost triple normal, fasting, without signs of resistance. My lowest blood sugar was 18. I'm so thankful I have diabetes now.

I can assure you I'm not stupid about this issue, though I think you may think I am.

I haven't had the cal stim test done yet, so I don't know how involved my pancreas is with the increased beta cell mass. I know I do not have an insulinoma. Mayo Clinic usually removes 70% of the pancreas, usually leaving the head since resection of the head is very involved and a much bigger surgery. They said that while there is no guarentee that this will cure it, most patients have the hypoglycemia completely resolve. I am not tolerating the precose at all. I have abdominal pain most of the time, lots of foul gas and generally feel really funky. We are leaving for vacation tomorrow so I'll see how I do while we're gone. After we get back, if I'm still having problems, which I'm sure I will, I'll go back to Mayo for the cal stim test and decide what to do. I'm not opposed to surgery if it will help me live a more normal life and not have to worry about every bite of food I put in my mouth. Not to mention the wt gain.

I had the calcium stim test done at Mayo last week. The tail of my pancreas is secreting 5 times it's baseline with stimulation. Definitely not normal. They consider anything twice the baseline abnormal. So on June 25, I'm having a distal pancreatectomy. I'm looking forward to figuring out what eating normally is like.

Sorry to hear you need this, but good luck with the surgery.

Thanks Blondi!

I'm back home from having a distal pancreatectomy for the post bariatric hypoglycemia. The pathology report confirmed nesidioblastosis. So far so good with the blood sugars. No huge highs and no lows. This is good plus I've lost 9 of the 15 pounds I'd gained in the last year.

Congrats Lyn, that's great news!

Lyn I am new to this site and read your postings. Glad your surgery went well and you are doing fine. My mother had a distal pancreactectomy as well as the spleen had to be removed on 8-7-07, although not for the same problems that you were having. They found what is called a serius adinoma (sp) non-malignant. Thank God:) every day. She stayed in the hospital for 10 days before going home. Extremely weak with nausea. She was previously a diabetic for 10 or so years. She does not seem to be progressing as well as I had hoped for. Her sugar is not to difficult to control. She continues now to have alot of nausea. Is not eating well but has only been a little less than 3 weeks. Could you please respond and let me know how you are doing and what I might expect as far as her recovery period. Thanks in advance and God Bless.

Hi, my name is Kim and I also have nesidioblastosis post gastric bypass. I am 30 with three children and am close to dying every day. I am not being ov er board here as my endrocrinologist tells me that it is very possible that I could die from this if I don't have a partial pancreotomy. I am on the highest dose of octriotide which is 1200 ml. I just need to find one person that has had this procedure done that can tell me how they are doing and what it was like after surgery and their recovery. I feel like I am going into this blindly as there is not enough info out there and the people that I do see on web sites that have had this procedure have either droped of the face of this earth or are doing so good that they are out enjoying their new life that they missed instead of bloging. Please someone give me some info on this as it will be so appriciated. Thank you, Kim