Treatment of Hyperinsulinemic Hypoglycemia After Gastric Bypass

Matthew's picture

Hyper-insulinemic hypo-glycemia is an important late complication of gastric bypass surgery that is increasingly recognized in patients who have undergone Roux-en-Y gastric bypass. It is a condition characterized by shortage of glucose in the brain (neuroglycopenia) and abnormal elevated insulin concentrations experienced mainly after eating a meal.

Cause

Hyperinsulinemic hypoglycemia is caused by unregulated secretion of insulin by the pancreatic beta-cels. The obesrved postprandial hyperglycemia is caused from the rapid digestion and absorption of ingested carbohydrates. This is a common phenomenon in gastric bypass patients and is related to the dumping syndrome—the result of food passing too quickly from the stomach to the small intestine.

Symptoms

Post-gastric bypass hyperinsulinemic hypoglycemia causes confusion, lightheadedness and loss of consciousness after a carbohydrate-rich meal.

Treatment

Although the treatment of the disorder remains elusive, a number of studies have investigated the following three approaches

  • Low carb diet
  • Pharmacotherapy
  • Surgical Removal of Pancreas

Low Carb Diet

Since the symptoms of hyperinsulinemic hypoglycemia are exacerbated by carbohydrate consumption, low carb diet has been investigated as treatment of the condition.

A recent study described the effect of high and low carbohydrate meals on plasma glucose in 3 patients diagnosed with hyperinsulinemic hypoglycemia 15 to 37 months after Roux-en-Y gastric bypass.

Although the fasting glucose levels of these patients were within the normal range (70-99mg/dL), when they consumed a high carb meal all three developed hypoglycemia with plasma glucose reaching as low as 28 mg/dL, 2 hours after eating. The high carb meals consisted of orange juice, milk, bread, toast or donuts.

In contrast, when the patients ate a low carbohydrate meal, they exhibited no hypoglycemia, and the change in their glucose and serum insulin levels was minimal. The low carb meals included black coffee, eggs, meat, and cheese.

The authors concluded:

Our data suggest that a low carbohydrate diet may be effective treatment for this disorder, and we have recommended such a diet to all our patients.

A similar and more recent study confirmed these results. Fourteen patients who had reported episodes consistent with hyperinsulinemic hypoglycemia were given a meal high in carbohydrates on one day and low in carbohydrates on another day. Both meals were equivalent in calories (410 calories).

Within 30 minutes following the high carb meal, the patients became hyperglycemic and hyperinsulinemic. At 2 hours, glucose levels reached an all time low and subsequently returned to normal levels.

Interestingly, after the low-carb meal, insulin increased only modestly and plasma glucose changed very little.

Todd Andrew Kellogg, MD, who spearheaded the project, commented:

The hyperinsulinemic hypoglycemia noted in some patients after RYGB … can be significantly improved through dietary intervention.

Pharmacotherapy

Medication has been successfully used in a few cases for treatment of hyperinsulinemic hypoglycemia. A 2009 study by Dr Spanakis, reports on the successfully management of post-gastric bypass hyperinsulinemic hypoglycemia with Diazoxide. The subject was a 52-year-old woman who had undergone gastric bypass surgery 4 years ago.

Diazoxide has been successfully used in the treatment of a similar condition in infants and children.

Patients taking other medications after a gastric bypass procedure should express extreme caution as some may cause potential harm. For instance, patients with diabetes may commonly use medications such as Januvia. In fact, DrugNews.net has just recently focused the health spotlight on the cases of pancreatic cancer Januvia has been causing, which some diabetic patients fear. Glyburide, a common diabetes medication taken orally, is also worrisome to doctors as it can completely alter a diabetic person’s blood sugar.

Removal of Pancreas

Partial pancreatectomy has been used to control the symptoms of hyperinsulinemic hypoglycemia. In such cases, some patients benefited from partial pancreatectomy while others experienced recurrent hypoglycemia that required total removal of their pancreas.

In general, studies do not support the use of pancreatectomy as a treatment for hyperinsulinemic hypoglycemia because pancreatectomy causes diabetes.

Dr Spanakis, explains that although there is a growing tendency to treat hyperinsulinemic hypoglycemic patients with pancreatic resection, it is often unsuccessful resulting in total pancreatic removal. “The end result of this approach is to cause iatrogenic diabetes, necessitating lifelong treatment with insulin”

Conclusion

Hypoglycemia after eating a meal is being increasingly recognized in post-gastric bypass patients. While the etiology of this condition is not entirely understood, ongoing research suggests that approaches to treatment should involve a low-carbohydrate diet rather than pancreatectomy.

So glad to know we are not alone!

My husband had the gastric bypass in 2007. He is morbidly obese and end stage renal failure. He's been on kidney dialysis since a month before his bypass. We were hoping that he would be successful with the surgery and be able to get his BMI to a point where they would allow for a kidney transplant. It hasn't happened and I'm sure it never will.

I'm diabetic and have always been around diabetics, so I'm well aware of symptoms and dangers of highs and lows. Before the surgery he was diabetic and has not had to be on any medication since about one year post surgery.

For the past 8 months he's been having severe low blood sugars. I came home with my 14 year old son a month ago to find him confused, disoriented, clammy and shaky at the kitchen table trying to warm up some food because he knew he was having a low. He's been carrying glucose pills with him wherever he goes.

We'd been to the doctor and the doctor didn't do anything for him, he dismissed it and just told him to monitor his sugars. We've switched doctors and now he's got an appointment to see an endochron. We were told he may have to do some inpatient studies and tests to find out what is going on.

If what I'm hearing is correct, it doesn't look like there are any options for him. Most medication is washed out of his system during dialysis. We've tried various forms of changes in our diets, we've cut out so much and have gone long periods of time eating vegan and vegetarian. We'll just wait and see what happens.

Thank you all for sharing your stories. I know how frustrating and difficult it is to go through this and not be heard. To know something is wrong with your body and not be able to get a diagnosis is maddening. I'm going to bring this to the attention of his doctors and make sure they associate this problem with the bypass. Knowing there is a common thread is comforting.

reversal

Hi everyone. Just checking in to let you all know I am going in on Tues (14th) to Hopkins for a gastric bypass reversal. They have had some success with reversing the hypoglycemia in several patients doing this. I have been able to talk to several of them. It helped all but one. She went on to have the completion pancreatectomy which, of course, took care of her hypoglycemia but made her a brittle diabetic. I am going with the odds and trying the reversal first. Say a few prayers for me. I will provide an update in a few weeks. I am hoping beyond hope that I no longer have to deal with this plague after Tuesday.

Ok I am having low blood

Ok I am having low blood sugar issues, my question is do I work with my pcp or my gastric surgeon? It can range from 35 to 170. Just a bit confused on where to start. Thanks!

I have seen both as well as

I have seen both as well as endocrinologist. There is so little that can be done. Research and educate yourself. I knew more about it then anyone I seen. My Endo said get pancreatectomy and bypass dr said eat 40gms or less carbs a day.

Hi, in my experience, it is

Hi, in my experience, it is best to work with an endocrinologist, one who is knowledgeable about post-gastric bypass hypoglycemia....not all of them are, believe me.

Hi, just thought I would

Hi, just thought I would update. Endo took me off oseni. First 3 days were bad diet of 40gms carbs a day. Once I got throught the craving I did much better mentally less fog and less pain and aches. Sugars ran great. Got off 1 week not terrible, but now I'm back to square 1 dropped to 41 today. I ate oatmeal with butter and equal. I am fortunate no seizures. Dr. Found borderline Addison's, and goiter go back Wednesday.

Another seizure...

Hi folks,

Well, I had another seizure a couple of nights ago.  This is about the sixth one since I had my gastric bypass four years ago. This one was, by far, the most severe.

I woke up feeling like I had no control over my body, then the next thing I knew the ambulance was here taking me to the hospital.  I was a dummy. I had eaten sugar a few hours before and my body reacted violently to it.  I need to be way better about that.  

When the EMTs checked my sugar, it was 56.  When I checked it a couple of weeks ago, it was only 38.  I know this is dangerously low.  I don't have health insurance right now, so I can't do much about it.  I'm dreading the bill from the ER visit the other night.

My question for you all is this: Have your muscles ever ached like crazy following a seizure? It's been a couple of days and I'm still very sore. I'm also mentally foggy.  I figured this would've cleared up by now.

I'd appreciate it if you all could share your post-seizure experiences with me.

Thanks,

Theresa

hey guys, so I am 2 yrs post

hey guys,
so I am 2 yrs post dx for hyperinsulinemic hypoglycemia, 11 yrs post op RNY...I was successful at keeping my sugars quite stable with eating 0-20gm carbs per day...very difficult and now my diet is slipping and I am having lows every day. I am so frustrated and sad about my situation. I am looking into having a continuous blood glucose monitor so hopefully I will have a better idea of when I am going low. I don't have insurance so it will cost me $1500 plus $70/week which sucks!I tried the acarbose but no luck. the next step would be total pancreatectomy as partial does not work, or feeding tube for nutrition. It worries me that this is a progressive disease so we are all headed in a very bad direction...

post-stictal period

Hi Theresa, So sorry to hear about what you've been going through. I have epilepsy in addition to post-gastric bypass nesidioblastosis. Low blood sugar provokes seizures in me often. I feel for you. The period following a seizure is called the post-stictal period and can last as long as 24 hours but generally doesn't last longer than that. I personally experience severe headache, extreme sleepiness that lasts several hours and slurred speech that lasts about an hour. The headache and sleepiness are very typical of most people. Why not do an internet search of post-stictal period symptoms. Since you don't have insurance, your options are limited but a neurologist could assess your situation with an eeg an possibly anti-seizure drugs. I take zonegran 400mg. It has the fewest side effects by far of the many I have tried and works pretty well. The only time I have break-through seizures is when my blood sugar falls into the 20s or lower. Hope this helps. Have you tried Medicaid or your local health dept?

Diagnosis finally

Well 2 yrs of crazy sugars and finally heard the diagnosis I was dreading nesidioblastosis. I have iron and b12 deficiency, a goiter, stomach problems, and possibly low cortisol. Started new diet 40gm of carbs at most a day. I hurt, blurry vision, hair loss, weakness, mood changes, short term memory problems. My dr says diet then if not better, hospitalized for 72 hr fasting then referral for partial pancrectomy. I am going to ask for acarbose at next appointment and iron transfusion. Please everyone keep sharing it seems we are our best source for answers I am the second pt my endocrinologist has had with this 1st was referred and never returned to his clinic.

Yes, it does help to hear

Yes, it does help to hear from everyone. This is Clia-I have posted for the last couple of years. I tried for a partial pancrectomy but
MD Anderson would not do it...they looked for an insulinoma but
sewed me back up. I am finally do better due to diet or lack of...
wish I didn't have to eat then I would be fine. Still have swings
and never know when. It is so hard to be perfect when it comes to
not eating carbs. On your eating try protien/fat-I drink an Atkins
shake-15 grams of protien-10 fat 1st thing in the morning and stay
pretty stable till I had food. At that gets me thru the morning. I've also added zanex 1/2 a pill twice and that has helped the most.

Good luck
Clia

Hi Clia

I've wondered how you've been doing. I am really surprised they sewed you back up without going through with it. They could've seen whether or not it was an insulinoma by an mri. Confusing. My drs here at Hopkins have given me a choice of either a completion pancreatectomy or GB reversal. Both are very big surgeries. We attempted the feeding tube in the remnant stomach approach a year ago but due to a large hiatal hernia my stomach was in my chest cavity and they couldn't complete the procedure. So disappointing. I have been following several patients here who have had reverals and one completion pancreatectomy to help me decide which to do. It is basically a crapshoot. Most of the reversal patients saw improvements in symptoms, one didn't. She had the completion pancreatectomy. It, of course, irradiated her hypoglycemia but right now she is 97 pounds and a brittle diabetic. Scary. I have decided to go with the odds and try the reversal first since all but one of the patients I spoke with saw a huge improvement in their symptoms. I am currently doing the pre-surgery testing to be sure I am a candidate first. I will keep you posted. I remember you were having kidney issues. How is that going? And how are you doing otherwise?
Terri

help needed

I have been researching about post bariatric problems since my friend died 2 weeks ago from an overdose of pain meds. She had pain and was told all in her head. Had feeding tube and had removed still had trouble eating. Had pain became addicted to narcotics which her doctors provided even though she was told no reason for pain. I had bariatric surgery and 6 months after had bowel obstruction surgery. Six months after that had another bowel obstruction and more surgery. I have had problems with alcohol which was never a problem and researched that and found alcohol and drug abuse is rampant after this surgery. I also have periods of hypoglycemia although not to the extremes I have read about. My daughter had this sirgery and has to get IV iron. She is exhausted all the time and today her blood sugar was 39. She has small children and has no energy. I am very angry that we were not told of these possibilities. I am angry that the medical community continues to promote this and downplays the problems. I am a nurse and I have seen patient after patient who have had this surgery with problems. I have had gastro doctors tell me they see nothing but problems after this surrgery yet they continue to give the ok for surgery.. I vomit so much of the time. This surgery has ruined my life. Maybe the doctors did not know of these complications at first but they do now and are ignoring it. PROFIT is motivating them. For everyone on these sights there are a half dozen more who are suffering in silence or think they are the exception. Research has shown that the chemical make up in the stomach efects the brain and when we have our gut altered it alters the brain. Gut to brain research reflects this. I am so angry and sad and frustrated.

Post gastric bypass hypoglycemia and low blood presshure

My name is Maria Teresa I going to tell you what I am going through as a result of the parascopy, gastro bi-pass or bariatric surgery (reduction of the stomach) that I had in 2003.

I was operated of the stomach in September 2003 weighed 200 pounds, my high is 5'3 feet, I have difficult to lose weight easily, within 4 weeks of the surgery I had dropped only 15 pounds and had hardly eaten anything. I was under liquid diet, gelatin and nothing more, after 15 days the surgeon put me in a soft diet purees, and beans, lentils, mush potatoes and soft stuff.

Within 4 weeks I try to eat a fried egg and lettuce salad, I almost dying It stuck in my esophagus and couldn’t pass it (eat it); for 3 years I was eating and throwing up for no reason, could be rice, a Tostitos or chips at the end for anything, when I least expected and anywhere, anything could be stuck in my trough, I was like a anorexic person but not wanting to be so.

My husband was very disappointed with me, because he never wanted that I got the stomach surgery, because the complications that could have in the future and which at the time that I got my surgery, this procedure started becoming popular (bariatric surgery). But we “women” wants’ to look good and this prototype that the skinny girl looks more beautiful I did it (I still think the same way).

For nearly 3 years I had in weighing 145 pounds, but it almost always after I eat I had that go to the bathroom to throwing up, after this episodes I try to hide my sickness but when I coming out of the bathroom trying to disguise what I had, only my husband realized what I was going thorough.

After a while I have not had more throwing up problems to pass the food, but then started the suddenly low sugar and high sugar episodes, health problems of suddenly low and high blood pressure without apparent reason.

I went to the doctor many times and explained my case and blood tests only show than my average of insulin in the 3 last months is under (56).
I am very frustrate because my body asking me for sugar to compensate the low sugar in my system, I was eating something sweet or bread and rice, for that I've gaining weight.

Because an article of the Mayo Clinic I learned that is the contrary, I must not eat sweet or white carbohydrates because after 2 hours low my sugar more. Now I’m weighing 186 pounds.

I have not found reports of suddenly variations in blood pressure as happened to me, I can go form 175 with 110 blood pressure to lower my pressure until 75 with 35 I was feeling like lifeless, my husband gave me a lot of coffee and still in the hospital my blood pressure was 80 to 40 as I already explain, I have not found reports of this blood pressure changes on the internet.

I would like my case published on the internet to be know what people like me are going through and also to communicate with people like me with the same symptoms of the disease and can be able to exchange information.
Plus if this is published and will help as information for another people thinking to have the gastro bi-pass or bariatric surgery, may know that the operation of the stomach is not a final solution and it brings you consequences who will risk your life, I've been in the hospital in emergency at least five times after my operation, and the reason I have had to stay in the hospital , has always been by my blood pressure or my sugar, not for the reason that had gone to the hospital (pneumonia , asthma, broken arm) just other reasons that have nothing to do with sugar or blood pressure.
Please publish my case so that other people read to take an important decision, which will have consequences for your lifetime and can bring consequences of life or death.
Last 07/14/2013 I pass out and my Blood pressure was 55 with 35 my sugar was 40, my husband call 911 and they took me to the hospital with my vital sings in a dangerous levels. I stayed there for 3 days and the doctor’s conclusion was that everything was consequence of my gastro by pass and the only thing that I can do is be careful with my diet and see a GI doctor and a Endocrinology to try to live with my problem.

Maria Teresa Quintero

I found this information in the Internet I hope this will be helpful for someone
From Mayo clinic web page
NIPHS
Mayo Clinic doctors have recognized and reported on a seemingly rare but serious complication following gastric bypass called non-insulinoma pancreatogenous hypoglycemia syndrome (NIPHS) or post-bariatric surgery hypoglycemia. After a person eats, this condition can result in very low blood sugar levels that lead to severe neurologic symptoms, including visual disturbances, confusion and (rarely) seizures.
Mayo Clinic doctors have evaluated and treated several patients with NIPHS. When medical and diet therapies do not work, surgical removal of part of the pancreas has resulted in marked improvement of symptoms for most patients. If the symptoms described above occur, patients should notify their physician immediately. Until this condition is controlled, patients should avoid driving motorized vehicles or performing tasks that could affect the safety of those around them.

ANOTHER REPORT OF THE NIPHS

European Congress of Endocrinology 2009
Istanbul, Turkey
25 April 2009 - 29 April 2009
European Society of Endocrinology
________________________________________
Endocrine Abstracts (2009) 20 P315
Non-insulinoma pancreatogenic hypoglycemia syndrome (NIPHS): recently described disease entity: case report
Aldona Kowalska, Iwona Palyga, Danuta Gasior-Perczak, Jacek Sygut, Janusz Sluszniak & Stanislaw Gozdz

Holycross Cancer Centre, Kielce, Poland.
Introduction: Case reports of individuals with non-insulinoma hyperinsulinic hypoglcaemia of organic origin has been more frequently described in literature. This syndrome has been described as a rare complication of bariatric surgeries and the term of NIPHS (non-insulinoma pancreatogenic hypoglycemia syndrome) has been proposed.
Aim: The aim of our study is to present patients case who had previously undergone the gastric surgery. Bilroth II and finally diagnosed of NIPHS.
Case description: A 45-year-old man who had previously undergone gastric surgery, was refered to our hospital for evaluation of hypoglycemia. At the beginning, the patient experienced only episodes of postprandial hypoglycaemia and subsequently episodes of fasting hypoglycaemia appeared. Diagnostic imaging including ultrasound, CT, Octreoscan and EUS were negative for the patient. Post-operative changes and chronic pancreatitis impeded the interpretation of obtained results. Farmacological treatment with Proglicem or somatostatine analogues led only to transient improvement in control of hypoglycemic status.
Because pharmacological treatment was ineffective patient undergone partial pancreatectomy.
Finally the diagnosis of NIPHS has been established based on postoperative histological diagnosis established after partial pancreatectomy.
Conclusion: 1. NIPHS must always be considered in differential diagnosis of adult patients with hypoglycaemia.
2. NIPHS may occur not only in patients after bariatric surgeries but also after gastric surgeries caused by peptic ulcer.
Endocrine Abstracts (2009) 20 P315
Noninsulinoma pancreatogenous hypoglycemia syndrome
AuthorF John Service, MD, PhD
Section EditorDavid M Nathan, MD
Deputy EditorJean E Mulder, MD

INTRODUCTION
The noninsulinoma pancreatogenous hypoglycemia syndrome (NIPHS) identifies a group of hyperinsulinemic hypoglycemic patients with unique clinical, diagnostic, surgical, and pathologic features [1,2]. These patients experience predominantly postprandial hypoglycemia and have nesidioblastosis with islet cell hypertrophy, findings different from those in patients with insulinomas.
The clinical manifestations, diagnosis, pathological findings, and treatment of NIPHS will be reviewed here. Other causes of hypoglycemia and how to differentiate among these causes are reviewed elsewhere. (See "Overview of hypoglycemia in adults" and "Diagnostic approach to hypoglycemia in adults".)
DEFINITION
Noninsulinoma pancreatogenous hypoglycemia is a syndrome characterized by endogenous hyperinsulinemic hypoglycemia that is not caused by an insulinoma. Pancreatic specimens from such patients show beta cell hypertrophy, islets with enlarged and hyperchromatic nuclei, and increased periductular islets [1-3]. These histologic findings are characteristic of nesidioblastosis, a term that refers to neoformation of islets of Langerhans from pancreatic duct epithelium [4]. The pathologic findings are similar to those seen in neonates and infants with persistent hyperinsulinemic hypoglycemia. (See "Pathogenesis, clinical features, and diagnosis of persistent hyperinsulinemic hypoglycemia of infancy", section on 'Pathology of the beta cell'.)
CLINICAL FEATURES
It is usually not difficult to distinguish insulinoma from noninsulinoma pancreatogenous hypoglycemia syndrome (NIPHS) considering the timing of symptoms, gender preference (male predominance), and radiologic localization study results. Pathologic findings can confirm the presence of nesidioblastosis, which is the typical finding in patients with NIPHS and is only rarely described as a concomitant finding in patients with insulinoma [5,6].
Symptoms — The predominant clinical feature of noninsulinoma pancreatogenous hypoglycemia syndrome (NIPHS) is postprandial hypoglycemia. In a series of 18 patients from the Mayo Clinic, age range 16 to 78 years old with male predominance (70 percent), symptoms occurred postprandially, two to four hours after meals, and only rarely while fasting [1,2]. All patients had neuroglycopenic symptoms, and several lost consciousness or had generalized seizures. In smaller series and case reports, a similar preponderance of postprandial hypoglycemia and male predominance was noted [7-13]. However, fasting hypoglycemia has also been reported [13-15].

Hi Maria Teresa, Sorry to

Hi Maria Teresa, Sorry to hear your troubles. Your story is familiar to many of us here struggling with the same thing. I go in and out of the hospital often too because of passing out with low sugar and they make me stay a few days because it makes my blood pressure so low. 85/45. Heart arrythmias too. I am about to have the rest of my pancreas removed to resolve the issue. A very drastic solution. I will be a brittle diabetic on an insulin pump but my drs feel my sugars will be more controllable this way. I go to Johns Hopkins where they have performed this on 3 other patients who are doing well now. Feel free to chat here anytime you want someone to talk to. Take care.

John Kirkwood

Sorry to say to anyone that was following or listening to my brother John Kirkwood who had similar experiences to you all because of an early diagnoses of cancer and the loss of much of his stomach and intestines. John died of a very virulent cancer 2 weeks ago. I remember him being very proud to feel he helped people on this website. As you can imagine his family including me his wee sister is devastated by the loss of such a great person, and I write to you all as I know he felt a deep connection with the problems you face every day. Missed every day my cool brother John Kirkwood.

How tragic

I'm so sorry to hear of your loss. We will miss his presence here. Take care and cherish your precious memories.

post gastric bypass glucose fluctuations

Wow, I am just amazed at the number of posts on here for this "rare" condition. I had my surgery 5 yrs ago began feeling horrible 1 year ago. Most recently found my glucose to range from 33-240. My HGA1c of course and fasting doesn't reflect this 5.9. Needless to say I feel sick and miserable. I was never told of the potential for this either and I am a nurse and did much research and thought I new everything that could go wrong. I am starting a medication tomorrow to try to control the extreme roller coaster I am on. I have been so fatigued walking into work is taxing. I hope the word spreads about this condition and some awareness is made. Treatment research is limited and my Dr. is trying. I don't only have the hypoglycemia symptoms but also get hyperglycemia after meals.

Do you mind sharing what

Do you mind sharing what treatment you are recieving, like the name of the medication and diet your on

Low's

I wanted to share with you all the issue that I have and have come to at least control. I thought mine was a sugar issue and even though my sugar drops sometimes it's usually because of stress. I get the same dizzy, light headed, sweaty feeling that all of you get. Mine is sodium. I do not absorb sodium very well now (some how connected to the anemia) and I get the same reaction. I keep peanuts with me (which is also good for raising your blood sugar and keeping it level) or some type of protein with salt in it. I agree that more people should know the aftermath of the surgery. I still think I would have done it, because I wouldn't have the life I do now. My husband is considering it for his type II diabetes. He's not severely over weight in fact his BMI is just 34. We have tried diet, exercise, medications, pump and nothing helps keep his sugars down. I keep reminding him what I go through..... We will see how it goes.

Same problems as all of you!

Same problems as all of you! Forwarding all comments to my Dr. See if he can figure this out. Gastric 11 yrs out!

Hyperinsulism Post Gastric Bypass Roux en Y

I feel so terrible for all that have commented about their suffering.I can relate.

I did not see anyone mention the medication Proglycem in liquid form.

It has been added to my Acarbose apparently as a last resort before pancreatic surgery, however, at this time, I absolutely refuse to have that type of MAJOR surgery, in which my endo states, that I would have to be "well enough" to have the surgery anyway.

The Acarbose has worked very well for about three years to level out my bs highs and lows, but the endo added the Proglycem when I started to have some new lows which seemed to be attributed to stress only.

I was VERY interested to read about the very low carb diet working for many. If that is the case, then I have been doing it all wrong all along.

I have been unable to lose weight and actually gained about 30lbs back from my total 70pound weight loss after the bypass, when my gastric bypass surgeon just took my Glucophage pills away after my surgery while I was still in the hospital 10 yrs ago and stated, "your diabetes (type II) is cured." I was later put on it again a couple of years later.

I have tried every diet again, and had worked out a routine of, I thought, very healthy diet and exercise, (common sense), and have dropped very high cholesterol and triglyceride numbers by diet.

But I have been into organic whole grains, and lots of slow absorbed carbs which I thought was helping my diabetes. No refined sugar.

Anyway, I have been on the Proglycem for a month, and my lows are better, much better. I hope this information might help someone out there! However, I have no idea how long Proglycem can be used.

My endo states that he can only recommend referrals to dietitians as far as diet. But I am very grateful that he is my doctor. No one at the major teaching hospital where I saw him seemed to be aware of this situation or the testing for it when I was hospitalized on an emergency basis for bs after lab testing well below the 30s.

My endo had just finished his training at another teaching hospital/medical school and was aware of what might be going on with me. This was about three years ago, (7yrs after the bypass)

However, I can see how my other doctors would not recognize a problem with my bs sugar, because my complaint was infrequent, yet severe low blood sugar readings (low 40s) when I even tested it, and therefore the standard diabetes tests showed that my averages showed diabetes, but that my A1C or what ever it is called, stayed at a pretty good low average - but that I still had diabetes.

As I said, my personal decision is NO more major surgery of any type. I want to try EVERY dietary and medical treatment. I was interested to see some things the Johns Hopkins docs might be trying, something about a feeding tube.

I have not done a lot of research, but every doc I have mentioned pancreatic surgery to has stated almost the identical words, "that's a very big surgery," and anything I have tried to look up on the web does not seem to show a great outcome.

Even my endo in briefly describing it to me, (I think) made it sound like a kind of hit or miss surgery.

I also saw someone mention the "glucose monitoring unit" which works 24/7, which would be EXTREMELY beneficial for me and probably others, in my case I have the real possability of going to sleep at night and not waking up, but Medicare and my supplement AARP have turned me down the last three times we have tried to get it, since 2010.

That is another area where I and others are trying some advocacy, but I am afraid there are too few of us out there and our calls for help may be falling on deaf ears, since basically this condition or side effect of this surgery APPEARS to be either "rare," (per NIH), or undereported or underecognized. Who knows, maybe, many of the people who have had this complication have died without anyone knowing what caused their death!

Thanks to you that have shared helpful information, and I hope that the little bit that I know, may help others.

My original roux-n-y was in

My original roux-n-y was in 2006. I was in the hospital all the time for high blood pressure and there was no control over it so the insurance authorized the weight loss surgery. Of course, as with anyone, I was excited about the idea of losing all the weight. By this time I was 400lbs. I am not a superstitious person, however, I was a bit nervous that my surgery was scheduled on a Friday the 13th. Well...I can say that is the most regrettable day of my life!! Oh sure I lost the weight! Over 240lbs and have kept it off since then but the price has been way too high. Eleven months after the original surgery I had non healing ulcers so they had to redo it to remove them. Then I absolutely could not eat so my weight plummeted to 125lbs and I had almost 30lbs of excess skin!! I was then by force admitted into a psychiatric hospital for anorexia!! I was forced to sit in a room with nothing but a desk and chair and had a try of food in front of me. It consisted of a dinner plate full of food, an Ensure, 2 yogurts and a dessert. Because I couldn't eat that I was diagnosed as being unwilling and heavily medicated. Finally I found a counselor there who would listen to me and they contacted the bariatric nutritionist who explained that there was NO WAY I could consume that food!! It was 10 days of torture in that place before we came up with a reasonable plan. I know that over the next 3 years my low blood sugar went undiagnosed. I would pass out by this point and was literally out of my mind. I was forced into counseling and psychiatric care that put me on a bunch of meds telling me that I was mentally ill. My mother is diabetic so one day I checked my sugar and was blown away at how low it was! Finally some proof that I had a medical condition that was severely life threatening! I've been treated with every kind of medication...even medication that isn't for blood sugar issues. We even tried for 3 months an injection monthly that is for people with gigantism. Those shots were $3000 a month!! This was all to no avail. In March of 2011 my bariatric doc and I decided to reverse my bypass in hopes that the lows would be cured only to find that my stomach had become damaged and would not allow digestion and the food to pass through which caused me severe pain and the inability to eat for 4-5 days at a time. That helped my lows because I only get the lows AFTER consuming food. I refused the surgery on my pancreas and he agreed that he didn't think it was worth the risk but I still needed help with the new problem with my stomach. In September of 2011 he did a stomach resection and unfortunately I had the same results..inability to eat for days at a time and severe pain. Today I am 6 weeks out from having the roux-n-y surgery once again. There is nothing left to do now. My stomach pouch (the only stomach I have left!) is the size of a pencil eraser. This was done in the hope that I would have some quality of life by being able to eat something on a daily basis. I am fearful that this isn't the answer either because unfortunately now I have developed an intolerance to lactose, sucralose (spenda) and also gluten! I am at a loss with how to live anymore. I also suffer from RSD which is a severe chronic pain issue and because of the size of my stomach and how quickly everything passes through me my medications are no longer working like they should and my depression has increased. I have read all the comments on medications that everyone has tried. Unfortunately for me either they haven't worked or I had too many side effects to continue them. I am not quite sure why I wrote a comment other than to get the word out there that gastric bypass is not worth the complications! Everything that I have had done to my body has aged me considerably and shortened my life expectancy. At this point neither the doctors nor I know what to do. I am wishing for everyone who has commented on this site for God to bless each and every one of you and pray that you each find a solution that works for you!!

So sorry

I feel your pain and frustration. I am watching my daughter go through several complications from tis surgery and was told by mayo clinic that she would be so much better after the surgery that 80% of her health issues would be gone. She is 30 years old had the surgery at the age of 29 was 254 lbs. and gaining at an accelerated pace. She was told that her immune system was not working right and neither her metabolism and that this surgery was the only option. She has always caught any kind of virus out there since she was little and just he past year her weight started getting out of control, no diet would work even working with a trainer. The doctors said that she would have all kind of health issues with in 5years and they were glad that she was on board to have this surgery to get ahead of all the future problems. Well now she has no quality of life and mayo clinic has pretty much abandoned her. She is hypoglycemic, has neuropathy (which they now want to use her in a study for that ) and come to find out the endocrinologist that she is seeing in Utah thinks that she had Addison's disease and never needed this surgery in the first place. Mayos ignored the low cortisol levels in her blood test because she was heavy and because of that they old of killed her during the surgery. It is so frustrating to know that these doctors are still performing this surgery and screwing up people's life's. I have contacted dr. Oz and 60 min. To try and get a show done about this to get it out to the public since the doctors are not telling you about this hypoglycemia and other complications that can happen. I hope that somehow you get to feeling better and pray for all out there that are suffering from this. Stay positive I know that it is so hard to do.

Wow! What a story! That was

Wow! What a story! That was heartbreaking to read. I sure hope that someday a viable solution is figured out for you. As my dr told me, we are all treading on uncharted waters as this is a relatively new condition. There are no precedents to look back on to say that is what worked in the past so they must experiment over and over to find something that works. I have been a guinea pig many times over. I think each time more and more damage is done to my body. They are very well meaning and have my best interests at heart trying their hardest to help me. I only wish the original gastric bypass surgeon had my best interests at heart and TOLD ME BEFOREHAND like you said that this was a real possibility. This has had life altering consequences. I am on disability with permanent brain damage and have been told that it will take my life prematurely. A consultation with several lawyers yielded no results. The GB surgeon does not have to be held accountable for not disclosing this to us. The whole system is screwed up. There are so many of us suffering. My heart breaks for you and I, too, pray that you find peace and a quality of life after what we've been through. Thanks for sharing your story. If you ever find something helpful or just want to vent, please share! Take care.

Hi. I did try Proglycem in

Hi. I did try Proglycem in its generic form, diazoxide, for about 4 weeks. I gained 17 pounds of fluid during that time so I had to be taken off of it. It definitely did help my BS while I was taking it though but it can have that side effect unfortunately. I had the 85% pancreatectomy you mentioned. It definitely is a big surgery. My condition was life threatening at the time. I was being hospitalized several times a month for lows in the 20s with unconsciousness & seizures. My drs thought I would die during my sleep. It definitely did not cure it but it did lessen the severity of the symptoms. Now most of the time I dip down to the 40s and 50s...still pretty bad but I am usually able to take care of it before passing out. Drs are not recommending the surgery anymore though because it doesn't offer enough of a benefit.

I tried the feeding tube but when they went to put it in discovered my stomach was in my chest cavity so couldn't insert it. I just can't win.

As far as Medicare and the CGM, if you go through Medtronic they will work with Medicare in the appeals process and can get approval but it takes about a year and a half and numerous appeals. They work hard in your behalf. They let you use the CGM in the meantime. They are great. They came to my house and trained me to use it and explained the appeals process. I had been previously using another brand of monitor who was not interested in working with Medicare. Hope this helps.

Terri

Wow, I stumbled onto this

Wow, I stumbled onto this site by searching rny snd cortisol, I am so glad I did. I had rny 6 years (lost 93 lb.) ago and haven't been the same since. I am a type 1 diabetic, diagnosed at age 7 and I am now 53, have always been brittle and hard to control. I developed Grave's Disease in 1997, after just having a total hysterectomy in 1996, my thyroid gland was destroyed by radioactive iodine ablation. I had always exercised and knew how and what to eat, but after the rai I started to gain weight and kept gaining, so that's why I ended up having rny. Had tried everything to get the weight off. Less than a year after my surgery, I developed a stricture. I now am on Iron, B12, Folic acid and vitamin D as a result from my rny. I was already taking 4 injections daily, thyroid hormone, beta blocker (for protein in my urine) lasix, cholesterol med and a anti-depressant. In the past 3 years I have had multiple seizures from hypoglycemia, and pass out, usually the seizures occur during the night. The last one I had lasted 10-15 minutes and my husband had to call 911 and my blood sugar was 16, was given glucagon in a IV and in a shot. It came up to around 100 and then a few minutes later, dropped back down to 16 again. I have diabetic neuropathy, retinopathy, nephropathy, diabetic hand syndrome (surgery on 8 of my fingers), hypoglycemia unawareness, osteoarthritis, scoliosis, hypertensive cardiovascular disease,among other problems. I am just sick of being sick! I sleep most days away, hardly have the energy sometimes to walk through the house, memory loss, muscle aches, stomach cramps and distention, nausea, weakness, insomnia, fatigue and since the rny my DEXA resulta are awful, teeth are in horrible shape, I've had torn cartilage in one knee and surgery, tendonitis and rotator cuff complications and surgery, and hair loss. In the last 6 years I've had 2 colon polyps removed and have colonoscopies regularly because my Grandmother had colon cancer. The rny has probably caused more things, but already having 2 auto immune diseases, it's hard to distinguish what is causing what. And I never have the energy or have a normal blood sugar to exercise much anymore, which is very disgusting to me, I love exercising. I have 2 grandchildren and I want and NEED to be here for them and be able to help their Mother (my daughter) with them. I have been sick my entire life, but having this surgery has caused so many more problems. I live off cottage cheese and protein shakes, I am unable to digest most meat without geeting sick.I have been able to get 64 ounces of water down daily without much trouble. I totally agree with everyone that we are not properly informed of the long term affects of this surgery, it isn't a quick fix, it's a lifetime of change. And as a diabetic, I counted carbs all my life to know how much insulin I needed at meals, so eating mostly protein was a big change for me. I'm not the kind of person who feels sorry for theirself, but all these health problems is really depressing! I was already unable to work from all my diabetic complications, but at least I was able to go to town and church and feel normal, now I cannot be in a room with a lot of people, I have a anxiety attack. I am so nervous all the time, it's hard to explain. It feels good to be able to vent to others in the same situation as you!

cortisol

Did you get the results of your Cortisol? because my daughter found an endo Dr. that found her cortisol levels were way too low and treated her for Addisons disease and by taking cortisol she is improving as far as the foggy brain, slurred speach, and some other symptoms that are alot like the hypoglycemia symptoms are. She still has the swings with glucose levels but what a difference since she has been taking cortisol. We really thought she was not going to be with us much longer and now we have some hope. We go back to the Dr. on the 20th and will see what the plan is now. Have your Dr. check for Addisons or a pituitary gland problem.

Absolute-betrayal by medical community pre-during-post RNYGB

Hello All:
I haven't written since last May 2012. All I can say is that there is no answer. I have tried relentlessly and the doctors just don't know what to do for me. The RNYGB that I had done in 2004, the doctors never told me the extreme-life altering complications ... I know without a doubt that I will certainly die not from the RNYGB surgery, but from the staggering limitless complications - that I suffer every single day. My life was ruined and forever altered by having the RNYGB. I hope Dr. OZ and or 60 Minutes takes this issue on to warn the public at large, it scares me to know young kids have had this surgery - the discipline it takes to survive day to day ... isn't possible for most and they dye, that is the reality. I have known three people now who have died from the complications. I was NEVER told the down side to the RNYGB ... I know without a doubt the complications of the RNYGB I had, will ultimately take my life as I was told in 2006 by my endocronoglist/s that there was nothing they could do for me and that I should expect to live about 6-7 years post RNYGB surgery, because the complications are so severe and no way to stop the cascade of side-effects --- which are numerous. Certainly I will not dye from the surgery ... it will be from the cascade of side effects that there is no answers for from the medical community as they just think we are all out of our minds - when in reality - we are suffering at the hands of a money hungry - greedy medical system who wants to perform all these RNYGB's at $28-$30 thousand dollars each. They do the surgery and then abandon us to figure out the fallout on our own. I struggle every day to work full-time when that is where all my energy goes so I can have medical insurance. The rest of my time is lost to trying to stay alive and sleep as the fatigue is off the scale - no amount of sleep will allow me to have a semi-normal life ever again. I work, I sleep that is my life ... I do all I can to stay alive ... but I know I am near the end. Please tell your family, friends those you love to NOT have the RNYGB it's a death sentence, my life was destroyed - I lost the weight, but I also lost my life. Jeanne

Wow I am sorry to hear about

Wow I am sorry to hear about your struggles. I do agree that people are not educated on how to deal with the "what ifs" after weight loss surgery. I also wish more people would talk about their experiences to help educate others and maybe prevent someone from going through similar problems.Praying you're doing well.

illness after RNY no help from doctors

Is there any doctors in the US that are familar with illnesses following RNY and know how to treat us?

I don't think the doctors know what to do

I really don't think that the doctors know what to do and are only experimenting to figure out what will work. The best thing is to read these forums and find out what is helping others like yourself, I think you will get better help. Makes me mad that the doctors continue to do this surgery and are ruining people's life's. It would be nice if the doctors at least be upfront with patients before they have the surgery about what could and may happen. This surgery has totally destroyed my daughters quality of life. If you find help let us know.

There are but there are not

There are but there are not many. Definitely an endocrinologist not a GP. Usually at the large teaching hospitals. Mayo Clinic, Johns Hopkins, Cleveland Clinic, Brigham Womens, Mass Gen I know for sure. I've been treated at Hopkins for the last 4 years. They have tried every option available. Some things work for some patients better than others. They have learned that the pancreatic resection does not have lasting benefit, the bypass reversals do not either because the damage to the GLP1 release in the gut will still be there after the reversal and still signals the abnormal insulin release. The meds octreotide, acarbose and diazoxide have some benefit for a few...they didn't for me. The latest treatments are the feeding tube placed in the remnant stomach. Quite a few are seeing a significant improvement. I tried that but when they went in my stomach was in my chest cavity and they couldn't place it. Bummer. I was just told there is a new med just hitting the shelves this month (March) called pasireotide (brand name Signifor) that is approved for Cushing's disease but during studies was found to suppress GLP1 and now there are several studies going on for post-gastric bypass patients to get it approved for this purpose. My dr at Hopkins is trying to get my ins to approve it for me off-label (not easy) right now...very expensive. If not, he is getting me into the study at New York Hospital. They have agreed to pay for travel. This way I will know if it will work for me. Getting a good endocrinologist that is willing to work hard for you is not easy and you may have to travel (I drive 1.25 hrs each way) but it is important enough to do it. What city do you live in?

Mayo clinic

Mayo clinic in Rochester is where my daughter had her roux en y surgery and she is so messed up. We contacted them when she had her first seizure about 6 months ago and several times after to schedule an appt. for her to be seen. They just now have sent her information to set her up with appts. And also want to use her on a study for the neuropathy that she ended up with also. I am not impressed with mayo clinic we found that they could of killed her during her surgery by ignoring the fact that her cortisol levels were low. She has neuropathy, hypoglycemia and now being tested for Addison's disease which the doctor in Utah thinks might of been the problem all along and the roux en y was unnecessary. I don't know if she will go back to mayo clinic or not but not impressed at all in fact just vey mad about what they have done to my daughters life and being ignored when they know damn well what is wrong with her. I am very interested in this new drug I will tell her to ask her doctor about it. Keep us updated.

Treatment of Hyperinsulinemic Hypoglycemia After Gastric Bypass

Hi I have an appointment @ Johns Hopkins in Baltimore next month. They are aware of the disorder, my NP from Johns Hopkins, Bayview  referred to the Docs at the downtown location. I guess I have to see what they say....

It's a pain

In 2002, I had Roux-n-Y surgery and lost 100 lbs, and over these past years have gained back 25 and am holding.  In 2006 I began having problems feeling week, shaky, confused, etc., and the doctors didn't know what the problem was.  Basically, I figured out that my blood sugar was plummeting. Previously, I had type 2 diabetes and still had my meter and bought new supplies.  When I'd have one of these "episodes" I started taking my blood sugar and low and behold they all turned out extremely low, some of them into the 30s. I was referred to an endrocrinologist who stated they were just beginning to learn about this byproduct of the surgery, and he recommended taking Acarbose with each meal as well as reducing the number of carbs.  

Honestly, it's been an uphill battle over the past several years.  My body is so sensitized now to carbs that it doesn't take much to make my bs rise and fall very low rapidly.  It's only been in the past three years that I've pretty much can tell when my blood sugar is getting low, in the 50s and 60s.  Most of the time when it goes into the 30s and 40s, it happens so rapidly that I haven't a clue.  Only when I become weepy, sweaty, and totally confused do I know that my bs is too low.  My mental state when this happens scares the hell out of me.   I'm sure you all can relate.  My favorite snack food is pretzels, but now even eating those I risk my bs dropping too low.  

I am trying very hard to keep my carbs on the low end. The foods that seem to be the very worst are any kind of bread, potatoes, rice, any kind of potato chips, pretzels, pasta, tortilla chips, cake, pies, cookies, any breakfast pastries, pizza, etc.  Sometimes, even when I don't eat these carbs and seem to be eating the right things, the bs gets low.

This wasn't something that I was informed about prior to my surgery, unfortunately. Perhaps they didn't know of this side effect at that time. However, it would have given me an opportunity to either change the type of gastric surgery or put it off until they knew more about it.  Do I feel better having this weight off?  Absolutely.  But I sure wish I knew what I was getting myself into.

I continue to be amazed at the lack of information on the part of the medical professionals regarding hyperinsulinemic hypoglycemia, eleven years after my surgery.  

Low blood sugar

I'm 10 years since the surgery - I lost the weight also, but now have the awful low blood sugar - especially if I eat any carbs. I'm glad I read this article and now will be more careful about what I eat. Today, I had cereal and a pastry for breakfast and 2 hours later I thought I was going to pass out - really bad. I agree, I wish I would have known about this before the surgery, but honestly I don't think that at that time the medical profession knew. I hope that now they tell their patients what they are in for.

I have appreciated being able

I have appreciated being able to read others' stories. There are so many of them out there. The hypoglycemia has been one of the minor complications I have had the joy of experiencing from gastric bypass surgery. The first of my problems was kidney stones a few week after surgery because of dehydration. Next I had a stricture and had an upper endoscopy so they could stretch out the stomach again. Everything went well for the next 6 months and then I had extreme burning pain radiating from my stomach up. My esophagus. I went through countless doctors and tests trying to figure it what was going on. The initial concern was that something had happened with the incisions. I had a barium swallow, a few more upper endoscopes, and a test to wear tubes from my nose down into my stomach to test the acid in there for a day. All were normal. Finally my surgeon said that the pain was in my head and sent me for a psych evaluation. That was the final straw when that came back normal. I was.able to get into a pain clinic. The doctor just treated me with narcotics that only minimally helped.
My next appt. I arrived to find my pain doctor had committed suicide and they felt so bad for me that I was able to get in and see the director of the clinic who knew right away my problem. The nerves are entrapped in scar tissue where I was cut open. 6 nerve areas all together. I was put on different meds to treat block the pain pathway to the brain as well as narcotics. I got nerve blocks for a while, but they stopped working.
Exhaustion set in. Well, because of the narcotics I have central sleep apnea and need to use a bipap machine. This still left me in wretched pain so met a neurosurgeon who implanted a spinal nerve stimulator into my spinal column with a battery inplanted into my hip. Tis has led to 6 other revisions and cutting of the bone of the spinal column. The pain is finally at a tolerable level as long as I take the lyrica and methadone throughout the day and, keep the nerve stimulator charged Nd running at all times.
Throw in a little hypoglycemia whenever I eat too ,any carbs, iron deficiency, and it all starts to run into one big fun party!
My health was a 100 times better when I was a 100 pounds heavier. Go figure!

My 30 yr. old daughter is now suffering from Hypoglycemia

Myself and my 29 year old daughter went to Mayo Clinic in Rochester about her immune system and weight problem. She always seemed to and still catches every virus out there and also after every diet and working with trainers her weight just seemed to be packing on faster and faster. Mayo Clinic ran a bunch of tests and told us that her immune system and metabolism was not working and that the RNY surgery would be the answer to all of her issues saying that 80% of her health issues would be gone (which that never happened). A few months after her surgery she ended up with Neuropathy in her legs from a Thiamine defiency and a year post-op she had her first grand mal seizure. After several calls to Mayo Clinic and seeing a Neurologist locally with no help I started looking on the internet and found the answer to what is happening to my daughter by reading these typ of posts. She has several episodes daily with low blood sugar she has had more seizures she has blacked outseveral times hitting her head and causing concussions. It all comes on so fast she doesn't have time to react. Mayo Clinic has pretty much abandoned her by not calling back and I found out that they know about this problem (did I say she is a patient of theirs?). I am so mad about what has happened because of this surgery when we were in no way told about this problem before hand or even after contacting Mayo Clinic. They made it sound like we had an answer to our prayers on her other issues and that this was the only option. I wish we would of been informed because no way would she of had the surgery we would of looked at other options. I do think that this information needs to get out because right now more and more people are having this surgery without being informed of this horrible side effect. She is now without a job, cannot function on her own, and got married after the surgery thinking of starting a family and I don't know how this could even happen now. I have seriously thought of looking into legal advice and like someone else on this forum mentioned getting it out to the media. This surgery should not be allowed. I feel like I am watching my only daughter slowly die.

Legal advice

Hi there. Your daughter's story is so sad. I, too, was not told beforehand and was so angry. I know my surgeon knew about this possible side effect as well. I contacted several attorneys and got the same response from them all. It is called informed consent and no attorney would touch it because they all said it is impossible to win. It is so unfair. I lost my job because I passed out with seizures so many times on the job they said it was affecting my job. I have been on disability for 4 years now. It has ruined too many lives. I spoke with drs at Johns Hopkins about not performing the RNY anymore until they figure out how to prevent this side effect and they said that will never happen because too few (comparatively speaking) are affected by this and it is too big of a money maker. They were all for halting it but they said they were by far in the minority. They were also talking with drs at Stanford who are studying a medication that will inhibit the GLP1 response (that gut hormone is what is responsible for the overproduction of insulin in post-gastric bypass patients) but they are having a hard time getting a grant for the study because the pharmaceutical companies aren't interested in persuing the drug because too few are affected with this condition so it will not be a big money maker for them. This came straight from a dr. It just makes me sick. There could be a drug that could help us all but we can't get it because of the greed of the pharmaceutical companies. So in the meantime we will all just suffer and our lives are basically a crap shoot every day. If only we could find an advocate that is well-known that could bring this to a larger nationwide forum maybe we could get some help. I know Mayo has been instrumental in conducting some studies on this condition, so I am surprised that they are not helping your daughter. Maybe you need to check into a different dept. I know Dr Service conducted the study. See the endocrine dept rather than the bariatric dept. Just a thought. Stay in touch and take care.

Unreal

Thanks for your reply....I guess my daughter did get a response from the endocrinology dept. at Mayo Clinic but they are trying to get an appt. with the neurology dept at the same time. I don't know why because they know what this problem is according to their information and she needs to be seen by an endocrinologist and 4 months later we still havent got an appt. She has had some help by going to Salt Lake City, Utah and saw an endocrinologist there which he knows about this hypoglycemia issue with bariatric patients. He was surprised that she got it at only 1 year post op. he said he usually sees it around 3-6 years post-op. he has ran some of his own tests and thinks that she has a tumor on the pituitary gland which might be part of the problem and could of been the problem with her health issues before the surgery. In other words she probably did not need the roux en y surgery at all. Her cortisol levels were off before the surgery when mayo clinic did their tests and they mentioned it but just ignored it and told us that this roux en y surgery was the only option. She is on cortisol now and if it helps some of her head issues then I guess the doctor will set a plan of action on what to do. We will find out this week. So now she has this problem and the hypoglycemia problem from the surgery. Then while she was down there she started getting sores on her head bigger than a quarter skin peeling off, oozing, and hair falling out, you wonder why she has to suffer so when all we wanted was an answer to why her immune system doesn't work and why she was putting weight on so fast and no diet or even trainers could get it under control. She started at 254 and is under 150 now so I guess the only good thing about the surgery is the weight loss but is it worth possible death? NO!!!
I have contacted The Dr. OZ show and also 60 minutes , I hope that they will do a show on this problem, it has to get out to the public. Will keep updating on anything that happens good or bad to try and help everyone out there that is trying to figure this out.

check this out

My daughter is being treated for Addisons disease and so far the cortisol that the Dr. put her on has helped the slurred speech and foggy head. He is waiting for a month before they go ahead and make a plan of action on what to do next. He thinks that she could possible have a tumor on the pituitary gland and that is why her immune system is not good and also her metabolism. The Cortisol levels were low before her RNY surgery and the when we asked the DR. about that he said that it was a fluke because she would of had a hard time keeping weight on. If you look into Addisons disease there are precautions that you take before any surgery and by the sounds of it she could of died, also she had all the other side effects after the surgery. This Dr. (DR's) should of never blown this off. I wonder how many out there had their pituitary gland tested to see if this was their problem and the RNY surgery was not necessary like it was not for my daughter. She still has horrible swings in her glucose levels and I am thinking that since it will swing high (175) and low (31) if diabetes is just around the corner. I am quickly losing faith in the medical world and we went to the "BEST" ????

Stumped

I want to update you on my daughters diagnosis.....she was put on hydra cortisol for 6 weeks and the first 3weeks it seemed to help the black outs but then it did not help so the doctor tripled the dose and still not much success. Now after seeing the doctor again he has decided that the low cortisol levels were probably from a steroid shot that was given to her a few weeks before for her throat swelling. He is weening her off of it and then retaking the test. He thinks that it is part of the side effects from the roux en y surgery. Her last episode was pretty bad, she had slurred speech then started falling asleep / blacking out, then a massive bloody nose. To function normal for even 4hours a day is pretty much very rare. The doctor told her that he is not giving up on her, lets hope he can figure something out at the next appt. here in 2 months. Still haven't heard back from either dr. Oz or 60 minutes guess I will write again.

Wanted to write to you about

Wanted to write to you about your letter, I just got out of the hospital 2 weeks ago. I have had 2 incidents within a month with my blood sugar dropping to 26.
I had a ROUGH-N-Y GASTRIC BYPASS done in Sept 1998 and up until this year thought it was the best thing I ever did. Please contact me about this we need to do something and spread the word about this surgery.
Thank you Susan Gomez

Nothing changed

Sorry to hear that you too are having hypoglycemia issues. My daughter thought that she found a doctor who said he could help her and he has no suggestions but that there is nothing you can do except try and figure out a diet that will work to keep the sugar drops in check. I met this doctor and thought nothing of him. He knows about this problem with this kind of surgery and I wonder if he made my daughter think he could help her because he saw the money coming in the door since people like her go in a lot because they need help. When I came out and started asking him questions and told him that he should go on this website and read what you all are dealing with, he then changed his tune. I asked him straight out "there is nothing that you can do is there?" And he said "no". My daughter had another gran maul seizure her levels were at 44. This does need to get out to the public but I haven't had any success with trying to get it on any talk show but will keep trying as I think everyone else suffering from this should. They just don't think there are enough people out there that suffer from this hypoglycemia from the surgery, I think they would be surprised. I do have a friend that is diabetic and has a lot of the same problems. She and her dietician have found to not completely take out carbs but eat small portions to keep the levels steady so that the body doesn't freak out when you do have a carb. Worth a try nothing else seems to help. Good luck and stay in touch.

Wow, so sorry to hear she is

Wow, so sorry to hear she is having such a terrible time. I feel for the both of you. Glad she has a dr that is working hard for her.

Is her blood sugar low when she is having the episodes? or is it related to her low cortisol levels?

Definitely keep in touch. Wishing you the best.

I got to 93 lbs and nobody took me serous

Hi all,
History bypass 2001 failed due to being done wrong. Starting weight 280 lost 100 lbs in year but had bile reflux due to surgery being done wrong. Revision scheduled 2005 to fix bypass Doctor got in there and found about a 1/2 ounce part of my stomach that wasn't ulcerated from bile. Did what is called sub totally gastrectomey. Took out all of my stomach. So did pretty good for a couple years stayed around 130lbs. All of a sudden I started feeling like I was going to die.sweating, fatigue , shaking, slurred speech and then the passing out started. I talked to numouros doctors all of witch thought I was in early menopause. I don't think so..... Anyway around the same times started dropping weight again and fast. I got down to 93lbs before I stumbled across this forum/website. SURE ENOUGH. I started testing and found like many others on here that after I ate carbs or anything that made my blood sugar spike it would then crash soon after. I've been as low as 19 and just started to get symptoms but then I've also been 70 and have been sweating and non verbal. I was sent to a diabetic dr whom I had to convince him to read the liditure on here and other web sites his answer. " eat every two hours" as many of you know sometimes were still full from our previous meal two hours earlier. I too have been battling one medical issue after another since getting the re do RNY. I have lupus, osteoarthritis, sever osteoporosis, Malnutrition, malabsorption, anemia and all the other fun stuff that comes with gastric bypass. I too take pain meds for the osteoarthritis and I vomit a lot so end up having to re take meds. Hard to explain to pain management that your not a junky your vomiting 3-4 times a day. I had a pain Managment doctor offer me a challenge she said since I wasn't able to keep down the ensures and proteins drinks that she dared me to try a kale, bannana and OJ smoothie for a week and tell her I didn't feel better and wasn't able to keep more food down so I figured what the heck at 93lbs what else did i have to loose. Sure enough 3-4 days later I started to ge more energy, I noticed my pain level wasn't as high. I could actually keep a little more food down then normal. Now I am not one to jump on These new fad diets and gimmicks. However, I did see an improvement. I am now 110lbs. I added veggie burgers and soy burgers and yes I'm gaining weight but I'm steal dealing with those nasty crashes. I've been averaging about 1-2 a day. I've started to stop becoming symptomatic until I'm in low 20's which isn't good. I'm thinking of getting a contentious glucose monitor has anyone tried this? Does anyone on here have anything that's been able to help them control this? I know there are certain meds that might help and surgery to take out yor pancrus I'd rather try diet or medicine. No more surgery for me!!! Any thoughts on glucose monitor or anything you think might help would be great! Thanks and best of luck to everyone on here its an awful thing to deal with.

So sorry for everything you've been through

Hi Apwell. What a story. You definitely need a good endocrinologist. It sounds like you haven't found one yet that knows about hyperinsulinism post-gastric bypass. Do some research and try to find one. I would suggest a teaching hospital as they tend to have better drs. I found mine at Johns Hopkins and they are wonderful. I have had 85% of my pancreas removed for this condition. It eased some of the symptoms but did not cure the condition by any means. They do not do this procedure anymore because it is a serious and invasive surgery that does not provide enough results to be worth it. Reversals have been tried on several at Johns Hopkins but again the results have not been good in those cases. There have been very good results with patients getting feeding tubes placed in their remnant stomachs. I attempted this procedure in Oct but they couldn't do it because they found my stomach had found its way into my chest cavity. I will need MORE SURGERY to repair it first. I was so disappointed because I was really looking forward to the relief from the feeding tube. I, too, suffer from daily hypoglycemia and no diet techniques that we have tried have changed anything. I do used a continuous glucose monitor which has proven to be a life saver to me as it warns me by an alarm when I am going low and even when I am dropping rapidly. Unfortunately, it goes off ALL NIGHT LONG so I do not get much sleep but I guess the alternative is not good so I must live with it. I do appreciate it and am so glad I have it. I also take Acarbose before each meal. It slows the absorbtion of carbs which helps with rapid rises and drops of BS. It helps but, of course, does not stop the lows. I hope this information has helped you. Please find a good Dr knowledgeable in our condition. My Drs at Hopkins diagnosed me with Nesidioblastosis of the pancreas after doing the pathology following my pancreatectomy although some prefer to call it hyperinsulinism post-gastric bypass. Either way it can be hard to find an Endocrinologist that knows anything about it. It took me five months to find a Dr after I started passing out and having seizures. Keep in touch and take care.

Jade-Sam

Hi Ladies,

thanks for the replies to my post. It's so sad to read all the stories on here of what all of us are going through do to a procedure that we all thought was going to improve are quality of life not hinder it even more.  I wish there was a way to get this information out there not only to the people who might be considering getting this surgery but also to the medical community. Jade you had mentioned that you were seeing doctors at John Hopkins. I too was being treated there before moving out of state. Even at one of the most world rebounded hospitals in the United States and they still seemed to know less about this condition then I did. I don't know how we can get the word out about this subject. I do feel that if I had all the information available to me prior to doing the surgery I would have made a different choice. I truly believe that my lupus, RA, osteoarthritis and severe osteoporosis is directly caused by this surgery. I also have thyroid issues, iron, malabsorption issues as well. Jade I too was going to get the feeding tube but since we were moving I opted to wait and I'm very thankful I did. I've gone from 93 lbs to 120 lbs as of yesterday. That's is huge for me because no matter how much I ate of what types of food I couldn't gain even a pound. But since going on a superfood type diet and eating a ton of soy and little to no carbs and of course eating non stop I am gaining and seem to be keeping my lows to just a couple a week now instead of 2-3 a day. I know a lot of you are un able to control your lows with diet and for a long time I couldn't either. Even with Adkins and low carb. It wasn't until I started doing the super foods and eating all day long was I able to get it some what under control. If you haven't tried the whole clean diet- super food maybe you might want to give it a shot. Like I said before I've tried changing my eating so many times and nothing worked. Why this is now working for me I have no idea. It all started to turn around when I intradouced those kale shakes. If any of you want to give it a try I can email you a sample of what I eat through out a day and maybe see if this works for you. Like I said before I am not into fad diets or any of that other BS but since it has worked so well for me I feel I should at least share the information if anyone wants it. On another note do any of you have any ideas how we can spread the word about this condition? I really believe that patients should have all the info before under going this surgery. I hope everyone is feeling well today and I appreciate the info and support from you ladies.   Take care Angela 

Gastric Bypass

I so glad I just saw this page. I have been battling this same situation for the past two years. I had gastric loss 100 pounds 3 years ago. Within the last 2 years, I have seen neurologists, psychiatrist, put on anti-depressants, spinal tap done - all because my sugar was dropping, memory loss, fatigue, etc. I knew something was going on but could not pinpoint it. I have seen my MD and she basically looked at me like too much carbs, my rheumatologist, I have lupus said too much carbs, the gastric doctor said you taken in too much carbs. I was literally driving one day and had to pull over to the side and the funny thing I did not eat anything. On top of all that I was going through premenoupasal. Labs came back fine but still have all kinds of stuff wrong with me. When I feel the onset coming I just take the glucose pills. I have gained 30 pounds and doctor just say carbs and hormonal. I see that I need to go to an endo and maybe I can get help. I have gotten so tired.

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