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 successful 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.

Seizures

I also have seizures related to low blood sugar. I have brain damage as well from so many severe lows in the 20s and teens. My MRI shows the damage and my EEGs show the abnormal electrical activity and my neurologist said from the reading he can relate it to metabolic insult. One of the worst symptoms I experience from brain damage is called Myoclonus. It is sudden and uncontrollable verbal outbursts and muscle jerks. It is extremely embarrassing and has made me a recluse. I am on THREE anti-convulsants now. The Myoclonus was under control for a long time but after a bad tonic-clonic seizure in Dec, they returned with a vengeance and we can't seem to get them under control. The new med I tried recently has done nothing. I am going to start a new one today. I cry because it has totally ruined my life. It angers me to read that some of your drs refuse to attribute your seizures to hypoglycemia. You don't want to end up like me. You MUST find a dr that is willing to work with little known conditions like ours. I can't stress enough to go to a larger hospital that does research. They LOVE to see patients with conditions like ours and go out of their way to seek out solutions. OH!!!HOW I WISH I NEVER HAD THAT GASTRIC BYPASS! BEING SKINNY JUST ISN'T WORTH THIS! I TYPE THIS THROUGH TEARS. GOD BE WITH US ALL!!!!!
TERRI

It feels good to not be alone...

I can't tell you what it meant to read through these posts. The great part is that I don't have to because you all understand and feel the same way.

I had GB in August of 2009 and never recovered from surgery. It has been one thing after another ever since and never any answers. In fact, six weeks post-op, the surgeon told me that it was all hormonal and depression, that there was nothing wrong with me. His reason for this? Because I started my period two days after surgery and had not stopped bleeding six weeks later. I was on Depo Provera to prevent periods because of their severity and did not usually have a period at all. I will never forget it. I had called the nurse and told her that I was still having trouble even drinking water because of the pain. She said she would have the doctor call me. He called me from his cell phone in the car later that evening and was so harsh with me. I was bawling! He straight told me that there was nothing wrong, I should be feeling better by now and it was in my head. He told me I needed to talk to my GYN or PCP about getting on an anti-depressant.

A week later I am in the ER with severe dehydration and in a lot of pain. The GI did a scope and discovered that my stomach was completely ulcerated. There were no healthy places at all. Told me he was not surprised that even drinking water was painful. HAH! I'm NOT just a big friggin' baby who isn't dealing well post-surgery! It is NOT IN MY HEAD! Unsurprisingly, I never went back to the surgeon again. I started being followed by the GI.

With medication the ulcers had healed when I went for the follow-up scope, but then less than a month later the pain was back and another scope showed that so where the ulcers. I had not stopped taking the medication (protonix) so I was still developing the ulcers while on the medication. Greeeat...

Over the next year, I was constantly out of work. Every time I tried to go back, it wouldnt last and I would be put out again. I have a design/engineering job at a shipyard and when you are out of work on medical, you have to go through the clinic to come back to work. Even when the GI would release me to go back to work, half the time, the clinic wasn't convinced I was healthy enough to return.

In November of 2010, while home recovering from having my gallbladder removed (another long story), I got a phone call that I was being laid off. The company laid off over 1000 people that day. I have since not had health insurance because I could not afford the nearly $500 a month COBRA premiums. It was bad enough trying to find answers and solutions with my regular doctors. Without health insurance, I no longer was able to see my PCP or GI unless I could afford to pay out of pocket. Shockingly, without a job, I couldnt. Since then, I have had to rely on free clinics for help. The doctor at a local mobile clinic is great, but getting me in with an endocrinologist has been difficult since I do not have health insurance. If the pain gets bad enough, I go to the ER to make sure that it is not something new like a perforation.

I believe that I have been having problems with the blood sugar all along, but it was this past summer that it came to light. My mother is diabetic and I had what I referred to as one of my “episodes” while I was over her house. She tested my blood sugar while I was there. It was 37. Since then, I have been on the same journey as most of you. Constant drops, a few 911 calls, fear of going to sleep and not waking up, being told to not be alone and not drive, etc. I did some research online at the time and learned about the “reactive hypoglycemia” and have tried to deal with it as best I could. What I did not find at the time was this blog and testimonies of anyone else like I found here that made me realize how many of the different symptoms I have are all related.

The last development was extreme swelling in my leg that was determined to be my liver not functioning correctly and causing pitting adema. Why is this happening? Due to a deficiency of a protein in the liver. Great, another issue caused by the malabsorption.

I am realizing that I had given up finding any answers or getting any better because I stopped seeking out help all together after the liver doctor telling me it was not something wrong with my liver, but a symptom caused by my liver not functioning correctly due to malabsorption of protein. I wasn’t acknowledging the level of the depression and anxiety. The complete sense of helplessness. Family and friends cared, but at the same time, thought that I should be doing more to find answers and solutions. Thought I should just “eat more” because of how awful I was starting to look being underweight. No one had any answers or solutions and I didn’t have the energy to keep looking. I hurt every day. Not just the severe stomach and chest pains from the gastritis (I have had to assure myself at times that it is not a heart attack), but my entire body hurts! The cramps are awful. I wake up and on top of the all-over aches, there is something new actually hurting…my hands, my big toe, my back, my neck? I’m thinking what the hell is wrong with me? I’m starting to jump on the bandwagon with everyone else and think that I’m just a big baby who is complaining all the time and that it is all in my head. When did I get this pathetic?

Reading everything you guys have written here has given me back what I hadn’t even realized I lost: faith in myself. These things are NOT all in my head and I am not just a bad post-gastric patient. I still feel overwhelmed at the idea of dealing with this for the rest of my life, but at least I know that I’m not alone. That these problems and symptoms are not exclusive to me and there are other patients and doctors working on finding solutions. I just have to find the strength and hold on to the hope that they start finding some answers for us.
~Jenn

Hang in there. I think we

Hang in there. I think we are all waiting for an answer to come along. Unfortunately we are among the first to be documented with this so our cases will provide the answers for future patients. Where that leaves us who knows????

I participated in a study at Hopkins a few years ago. The results were published just this past year in a medical journal. My case was among the first documented that confirmed it was Nesidioblastosis. Through the study they learned that the cause of our hypoglycemia is the overstimulation of the GLP1 hormone in the small intestine postmeal resulting in an exaggerated insulin response. They were excited to learn this important information but they were still left with no answers for treatment. They have been working hard to get pharmaceutical companies to work on formulating a GLP1 antagonist. Up until recently, they have been uninterested in taking on the project because there are not enough of us afflicted with this condition to make it worth their while. Goodness knows lining their pockets with money trumps our health and lives!!! Makes me sick.

My dr said that a study is now in the development stages in CA to trial a new med. If it proves effective, it could be available in 4-5 years. My dr is trying to get me into the study. I would love to give it a try. In the meantime, all we can do is hang in there with whatever works best for each of us. And support one another. Anytime you need to talk, we're here. : )

Terri

blood sugar issues

Hi Teri I am a patient at Hopkins Bayview. I am seeing My endocrinologist about my blood sugars and finding out about my blood sugar monitor.

Hi, Which endocrinologist are

Hi, Which endocrinologist are you seeing? Are you getting a continuous glucose monitor?

blood sugar issues

Hi Teri I am a patient at Hopkins Bayview. I am seeing My endocrinologist about my blood sugars and finding out about my blood sugar monitor.

hypoglycemia after gastric bypass

Where do we find out more about the study at John Hopkins and the research being done?

Hi Julia, The study is

Hi Julia, The study is complete. The abstract is available online. I have the complete version in a pdf file. I am not sure if we are allowed to post emails but if I can get your email, I could send you the full version, it has some nice photos. Here is the concise version found online. I am the patient mentioned that had the 85% pancreatectomy. There is a second paper below the first stating their treatment recommendations following their study.

1.

J Surg Res. 2011 May 15;167(2):199-205. Epub 2010 Oct 29.
Hyperinsulinemic hypoglycemia after Roux-en-Y gastric bypass: unraveling the role of gut hormonal and pancreatic endocrine dysfunction.
Rabiee A, Magruder JT, Salas-Carrillo R, Carlson O, Egan JM, Askin FB, Elahi D, Andersen DK.

Source

Department of Surgery, Johns Hopkins University School of Medicine, Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA.

Abstract

BACKGROUND:

Profound hypoglycemia occurs rarely as a late complication after Roux-en-Y gastric bypass (RYGB). We investigated the role of glucagon-like-peptide-1 (GLP-1) in four subjects who developed recurrent neuro-glycopenia 2 to 3 y after RYGB.

METHODS:

A standardized test meal (STM) was administered to all four subjects. A 2 h hyperglycemic clamp with GLP-1 infusion during the second hour was performed in one subject, before, during a 4 wk trial of octreotide (Oc), and after 85% distal pancreatectomy. After cessation of both glucose and GLP-1 infusion at the end of the 2 h clamp, blood glucose levels were monitored for 30 min. Responses were compared with a control group (five subjects 12 mo status post-RYGB without hypoglycemic symptoms).

RESULTS:

During STM, both GLP-1 and insulin levels were elevated 3- to 4-fold in all subjects, and plasma glucose-dependent insulinotropic peptide (GIP) levels were elevated 2-fold. Insulin responses to hyperglycemia ± GLP-1 infusion in one subject were comparable to controls, but after cessation of glucose infusion, glucose levels fell to 40 mg/dL. During Oc, the GLP-1 and insulin responses to STM were reduced (>50%). During the clamp, insulin response to hyperglycemia alone was reduced, but remained unchanged during GLP-1. Glucagon levels during hyperglycemia alone were suppressed and further suppressed after the addition of GLP-1. With the substantial drop in glucose during the 30 min follow-up, glucagon levels failed to rise. Due to persistent symptoms, one subject underwent 85% distal pancreatectomy; postoperatively, the subject remained asymptomatic (blood glucose: 119-220 mg/dL), but a repeat STM showed persistence of elevated levels of GLP-1. Histologically enlarged islets, and β-cell clusters scattered throughout the acinar parenchyma were seen, as well as β-cells present within pancreatic duct epithelium. An increase in pancreatic and duodenal homeobox-1 protein (PDX-1) expression was observed in the subject compared with control pancreatic tissue.

CONCLUSIONS:

A persistent exaggerated hypersecretion of GLP-1, which has been shown to be insulinotropic, insulinomimetic, and glucagonostatic, is the likely cause of post-RYGB hypoglycemia. The hypertrophy and ectopic location of β-cells is likely due to overexpression of the islet cell transcription factor, PDX-1, caused by prolonged hypersecretion of GLP-1.

Copyright © 2011 Elsevier Inc. All rights reserved.

PMID: 21414635 - in process

J Gastrointest Surg. 2011 Jun 14. ahead of print
Advances in the Etiology and Management of Hyperinsulinemic Hypoglycemia After Roux-en-Y Gastric Bypass.
Cui Y, Elahi D, Andersen DK.

Source

Department of Surgery, Johns Hopkins Bayview Medical Center, Johns Hopkins University School of Medicine, 4940 Eastern Avenue, Baltimore, MD, 21224, USA.

Abstract

INTRODUCTION:

Hyperinsulinemic hypoglycemia with severe neuroglycopenia has been identified as a late complication of Roux-en-Y gastric bypass (RYGB) in a small number of patients.

DISCUSSION:

The rapid resolution of type 2 diabetes mellitus after RYGB is probably related to increased secretion of the incretin hormones glucose-dependent insulinotropic polypeptide (GIP) and glucagon-like peptide-1 (GLP-1), and patients with post-RYGB hypoglycemia demonstrate prolonged elevations of GIP and GLP-1 compared to non-hypoglycemic post-RYGB patients. Nesidioblastosis has been identified in some patients with post-RYGB hypoglycemia and is likely due to the trophic effects of GIP and GLP-1 on pancreatic islets.

CONCLUSIONS:

Treatment of hypoglycemia after RYGB should begin with strict dietary (low carbohydrate) alteration and may require a trial of diazoxide, octreotide, or calcium-channel antagonists, among other drugs. Surgical therapy should include consideration of a restrictive form of bariatric procedure, with or without reconstitution of gastrointestinal continuity. Partial or total pancreatic resection should be avoided.

PMID: 21671112 - as supplied by publisher

I have the same problem!!!

my lowest awake blood sugar reading was 30! I wore a monitor a few months ago and my sugar drops to the 30-40 range between 3 and 4 am.

sally

emiopihi's picture

Reactive Hypoglycemia Experiences

Aloha all. Just happened upon this blog and your postings. I am having a challenge again with my reactive hypoglycemia and severe depression.
I had a RNY in 2008. Did well for a year or so and dropped ~ 145#. I still weigh ~ 60# more than I would like or should. I am 192#. BMI is 33. I would be eligible for gastric bypass with this BMI :).
About 2 years ago I passed out during a meeting. Before the loss of consciousness I felt ringing in my ears, got cold and clammy, etc.
The sx were attributed to vasovagal sx and dehydration. I didn't quite believe the health care providers at the time but what more could I do? I am a nurse with over 30 years of experience including working in ICU but it was an isolated event at that time.
Around 5 months after passing out. I began to feel a bit funny when shopping. I went to eat at the McDonalds thinking maybe my sugar was low. Had 1/2 a hamburger without one of the buns. Purchased a meter and test was 80. Told my Dr about episode who then ordered a glucose tolerance test. At 2 hours after the test I was hungry, it was time to eat. I walked to a restaurant to purchase food around 1/2 a mile away. After I returned the Dr informed me that my 2 hour result was 40. I had no symptoms and walked the 1/2 a mile and didn’t pass out. So not only do I have reactive hypoglycemia, I have hypoglycemia unawareness.
I have a great team of providers and specialists helping me. Problem was that I also had a hysterectomy a year before the bypass and many of my sx were attributed to menopause because I also could not take hormone replacements as I was being treated for breast cancer. I am gratefully nearly 5 years out from the breast cancer and then I can go off the Arimidex which can cause symptoms of hotflashes. So after being pretty insistent that I wasn't just a crazy menopausal middle-aged woman, I got tested for hyperinsulinism which was verified (and they ruled out that I was taking meds to give myself the hypoglycemia with the C-Peptide). I was tested to make sure that I didn’t have an insulinoma or other pancreatic problem. I also ended up being scoped and it was found that the connection between stomach and small intesting was way to big and therefore the food just went straight into the small intestines. I saw the endocrinologist and cardiologist and was started on acarbose (some good results if consistent). I was also started on a beta blocker for frequent and symptomatic arrhythmias (PVCs). A band was placed on my stomach a year ago and I went for fills frequently until I was able to tolerate food better and sugars seemed to go up and down over a more normal time frame with less severe and frequent lows. Luckily the anatomy of my bypass made it so the band wouldn't slip. Apparently this procedure does not work for all and the band just slips. Prior to the band placement my sugars were so labile and I had the hypoglycemia unawareness that I ended up with a continuous glucose monitor (CGM). It is great and helped to validate my experience with my health care providers, family, coworkers and even myself. And mostly it is especially helpful because it warns me when I am either going up too fast or going down too fast since I don't have the symptoms until really, really low or inconsistently. My lowest sugar on my one touch was 28. I was still alert with the 28 blood sugar but felt a bit out of body and was not thinking too well. I find when I get clumsy that I need to test and I usually am in the 40s. the CGM is usually pretty accurate except that day that I change to a new sensor but I have had rare occasions where the CGM read in the 100s and I was actually in 40s. I knew to test using my meter because I had that out of body feeling again even though the CGM read 100. These extremely low sugars are very scary. I do live alone and my dog has also been there to awaken me as she licks me awake when sugars are too low. Amazing that she seems to know and how she has helped me.
Interestingly, I was having symptoms every 330 - 430 am. This is when I would awaken to my dog licking me. I was getting afraid to sleep because of the fear of not awakening. This lack of sleep certainly didn’t help my sense of well-being or personality. When I shared these sx and usual occurrences at 330-430 am, my docs attributed sx to the crazy middle-aged menopausal woman syndrome it seems. This was until the continuous glucose monitor did again validate the swings in blood sugar at this time. I keep dex4 (or any dextrose tablets) and a snack at my bedside because of this. I used to keep peanut butter (ate 2 tbsp) but my niece has a life threatening allergy to peanuts so I have switched to string cheese. I eat this after taking the dex4 and when my sugar is above ~ 80. I also have a baby monitor that I used to place my CGM next to because many times I would not awaken for the low sugar alarms. I have been sleeping better most times when my sugars are under control and I am reassured by having the CGM. However, once I get into the roller coaster blood sugar fluctuations, I have terrible symptoms again and it takes a long time to get out of these fluctuations and low symptoms.

These symptoms and wide fluctuations have been affecting my personality, my ability to think, my speed to perform tasks. It is also difficult because this problem is not well known and although I work with health care providers, it feels they do not believe the wide fluctuations in my sugar is affecting me. My manager actually stated once, "Just go have some licorice like everyone else when they are hungry or have a low sugar." This was after I told her about my problem and that I needed to eat every 2 hours. Such is life and working with other health care providers who are mostly catty women.
So I want to share about my diet for reactive hypoglycemia. This is a really hard situation for me as a previously food obsessed extremely obese person. I cannot eat simple carbs in any form. I have trouble with most complex carbs too if in an amount per meal or snack more than 15 gms. I was pretty much eating just string cheese for breakfast, peanut butter for snacks (now I eat string cheese for snacks dt niece allergy), soybeans with garlic as another snack, meat and veggies without any sauces on either. I also do ok with black olives and I have always liked beef jerky. On occasion, I really just want some fruits and will eat oranges or bananas. These do make my sugars go wild. If I have a dietary indiscretion like during holidays or birthdays and have some dessert or candy the wide fluctuations start again and are again so hard to get out of.
The problem when my blood sugar swings from high of 300 to low in 40s in 1/2 to one hour, is that I also get these cramps in large muscles of legs (like charlie horses) and hands cramp up in a ball (carpopedal spasms) and I feel the palpitations start. This is scary if it occurs when driving or when working. Luckily with CGM and eating every 2 hours this problem is rare. I do however get the arrhythmias any time my sugars fluctuate widely even if not too low. Unfortunately my heart rate is slow already (40s – 60s) and when I get the palpitations I get really dizzy. The beta blocker to stop the palpitations also lowers my heart rate. When I feel terrible the rate is in the 40s. But with the arrhythmias (PVCs) the palpated rate is more likely in the 30s. I have passed out a few times when I have had diarrhea and the wide sugar swings and needed hydration.
I am having memory issues too sadly. I used to be a nursing instructor. Sadly, I cannot even tolerate a 12 hour shift anymore and I cannot see myself keeping up with 10 students and 20 patients and remembering everything like I used to so easily. I am still young and have ~ 18 more years to work. The physical changes also affect my daily work as an RN in a clinic. I have gotten so depressed by this situation. I am also so tired of having to be so vigilant about my eating. I never wanted to end up obsessed about food again. And I am again due to this problem. I am tired of not feeling like I can pull my fair share at work but recognize that I am doing my best but worry that it is not enough. Sometimes I do worry about the safety of my patients and myself. Once when I asked for help because I couldn't stop throwing up, I was left for over 45 minutes to care for a patient (who was luckily sleeping) before anyone came to help/relieve me. So when I get a bout of blood sugar problems or arrhythmias I end up having to call out of work for fear of not getting support to care for my patient or take care of myself if and when I need it. This is depressing too. I have to do a lot of thinking about what is next for me career wise due to this medical nightmare.
I feel like I am such a drag to be around. I am tired of hearing myself complain. I do hope that someone will read something in my posting and be comforted that they are not alone; realize that there are other strategies out there (acarbose, diazoxide, sandostatin LAR, diltiazem are a few of the meds); continuous glucose monitoring may also help. The continuous monitor did help me to anticipate and intervene in a more timely manner. It is very expensive though to purchase it, the sensors monthly and the strips for the one touch meter needed to calibrate the CGM and also verify high/low readings from the CGM. Since I have the severe hypoglycemia I need to keep Dex4 (take 4 - 5) or another quick glucose (15 gm) source available at all times. I keep retesting sugars every 15 minutes and repeat until sugar is better (for me about 80- 100) and then I eat a small meal without many carbs. I also have a glucagon kit that I carry with me at all times. This is a hormone that someone can inject in me in the event that I end up unconscious and can't take the dextrose tabs. It is a good idea to get a prescription for that if you have terrible lows and pass out and make sure to teach family, designated persons how to use in event of passing out due to low sugar. I am not sure how insurance covers the meds or supplies for reactive hypoglycemia. This problem is not recognized like diabetes is but certainly is as scary and worrisome. I also make sure to wear a medical alert bracelet. I ordered my medical alert bracelet so that in the event that I am unconscious bystanders or med professionals know what problems I have. I got my bracelet from Medical Alert ID (which is online). I have ordered the fancy gold or silver in the past. I have ended up preferring the steel one that seems to tolerate lots of use. Eating every 2 hours does help in dealing with this problem. I have to be careful though to watch the caloric intake so as to not gain weight. Anyone with reactive hypoglycemia must plan meals and snacks for themselves and not expect that others will have the right food for you. Pot lucks, parties, outings like hikes or physical activities can especially be a challenge so I make sure to plan ahead. I carry string cheese with me. Visiting a dietician helped me create a plan with the right amount of calories and carbs so that I could eat every 2 hours while awake and not gain weight. I want to share what I have learned for myself and these are things you may want to ask your health care providers about. In no means am I offering medical advice. I find that this might help anyone with reactive hypoglycemia due to gastric bypass since this situation is rare though it is becoming more recognized over the last year or so as a side effect of bariatric surgery.

I have realized that every time I have a period where things go well for a long while (couple months), I forget that I have this problem and believe I am cured. I think loved ones and coworkers and acquaintances also forget because things can go well for a while. I went through such a situation most recently where I believed I could stop the acarbose, stop using the CGM and wanted to get into vigorous exercise and eat normally. Well, everything got out of whack again after being ill for 3 weeks with a URI and then a bout of diarrhea. My eating was not consistent during this time either because of the Holidays. Shucks. All of this contributes to my feeling depressed. It is so ironic that I worked so hard to get this surgery and lose the weight and to improve my health, only to end up with this chronic, life-altering and potentially life-threatening problem that is so all consuming in many ways. It makes me sometime wonder if it was all worth it. I can even feel suicidal at times and that seems just so contradictory since I worked so hard to try to get better. Luckily, I have help from meds, therapists, family. I realize that I would not like to leave such a legacy for my family. I have 2 young nieces who I just adore as well. But it takes a lot to get out of the dumps at times. And it is really finally sinking in that this problem is not going a way either.
So, if I cannot get the problem controlled with diet, meds and the band, the next recommended step for me would be a partial pancreatectomy. I am not liking that choice at all. Basically, I am tired of surgery. In 2004 I had a major Pulmonary Embolism and almost died. I had a filter placed in my Vena Cava (had clots in my leg due to clotting abnormality. My weight of over 300#s probably contributed as well). I was also placed on warfarin (blood thinner) lifelong. In 2005 I had breast cancer, and ended up with a lumpectomy and lymph node dissection and radiation. Less than a year later, I had to have a hysterectomy because of bleeding from the warfarin due to uterine abnormalities and medication I was taking for breast cancer also contributed. I ended up with complications from that surgery and it took 2 months for my bikini-cut wound to heal. I ended up with an open hysterectomy because the vaginal approach failed also due to my large size at the time. I bled into the wound because of the warfarin and had to have the wound opened. Then about 6 months after this episode I had to have another surgery on my breast for a questionable growth found by my OBGyn. Of course I was concerned again about breast cancer. It was the following year that I applied for and was accepted for bariatric surgery after the year of required classes and screening. Luckily I didn't have to have an open surgery. I had the lap RNY and I healed without complications this time. A year later, I started having those weird symptoms and started passing out. Had lots of cardiac work ups for passing out and PVCS. Last year I also learned that the filter that was placed in me in 2004 was being recalled and had a procedure to take that out. Due to the problem of my sugars not stabilizing with meds and the problem of the large stoma, last year I also had the band placed in order for the doctors to fill the band to shrink my stoma. After reading this, I think it would be clear why I wouldn't want another surgery.
I am working hard to get back on track with the meals and snacks, being consistent in taking the acarbose with first bite of meal and gradually adding exercise back into my life. I am also working hard with behavioral health to help me with the depression. This certainly will be a lifelong battle that I must attend to. As for what is next with my employment situation, I do not know. I really am worried about how long I can go on like this as even when I am on track I do have challenges at times and I also fear that the memory problems may be permanent and seem to be worsening.
Do want to mention that I just had labs drawn and my blood counts that have returned are all in target. I am not anemic. My B12, Calcium, PTH are all normal. I am still waiting on the HA1C. My Cholesterol level could be better and I did not get the triglycerides back so I wonder if that is elevated (abnormal labs are not released online). I would not be surprised if Triglycerides were elevated as this can go hand in hand with high insulin levels. I also did not receive my kidney or lyte results and wonder if they were abnormal since they were not released on line. I am concerned about what these wide swings of sugars from below 100 in am fasting but rapid swings from up to 300 and down to 40s (if not attended to quickly enough when CGM alarms) and back up again if carb intake is above 15 gms will do to my body long term. High glucose levels can have an effect on the blood vessels just like high sugars do in diabetes that is out of control. It is important to get sugars under control.

Hyperinsulinemic Hypoglycemia

Hello to all~I have read quite a few of these comments, but not all. Honestly it is all very overwhelming and a little scary for me. I had my Roux-En-Y gastric bypass approximately 14 months ago. I have lost almost 90# and am at my goal weight. I was not super morbidly obese to begin with, but I was diabetic--which was one of the main reasons to have the surgery. My diabetes has since reversed--I also have the Hyperinsulinemic hypoglycemia, but honestly I was diagnosed with this condition before I had the surgery anyway. Yes, I had both diabetes and hypoglycemia! I have been living with both for almost 17 years! Has anyone heard of having both??? Well anyway, my hyperinsulinemic hypoglycemia returned approximately 4 months after my surgery. My surgeon told me that it would, but honestly as rough as it is...I am still glad that I had the surgery because my blood sugar honestly got way too high at times. Atleast now I only have to control the low end instead of both the highs and lows. I have a family history of diabetes so I'm sure this hypoglycemia is in part related to a faulty pancreas. My dad got diabetes when he was 60, he is physically fit, active, thin--and got it anyway. I'm sure it will creep back into my life when I am older. Right now I'm 43. I am a small bit skeptical that the surgery itself caused this hypoglycemic problem in everyone--it probably exacerbated it more than anything, with a pancreas that isn't working right anyway with "most" of you. Again, I can't stress enough that I had this problem before the surgery--the diabetes is gone, but the low blood sugars are back. I saw that someone wrote that a high protein diet is bad for you, I couldn't disagree more! A diet is supposed to be rich in protein and vegetables (I don't like vegetables by the way)--so this makes it more difficult for me. I'd like to know where that person got the information that high protein is bad for you. There are certain proteins that are bad for you if you eat too much of them--but there's moderation in different kinds of protein. Anyway, just curious to know what people think about this. Thanks, if anyone wishes to e-mail me privately they can do so at kristin971@live.com

High protein foods meals are not the answer

Take it from someone who knows. Yes, protein is good but in moderation. Proteins only will over load and damage your liver , plus cause worse conitive deficits and damage to you brain. Complex carbs shoul be no lower than 60 grams per day. 139 is better. The fuel our brains runon is dependent upon glucose as primary fuel along with all the vital nutrtitrents from whole foods and your daily vitamins.Your brains main full is glucose. Glucose does not come protein. Not enough fuel for the brain, you cognitive abilities will fail you. If you can get 1500 calories in per day split the carbs into 3 meals and 3 minis with a little extra protein. Exercise on a daily basis. Start out slow but do something you will enjoy doing. The exercise will help with you sugars also have a emergency protein bar or trail mix and a bottle of water and yes some protein. Keep a log of what your eating, how much and how it makes you feel.,,even if your monitors are telling you differently. Listen to your body. The symptoms you are are getting are warning signs thatbsomeother things are going worse. IMF your Pcp or specialist won't listen find someone who will. There arebpeopeple out there. Not everyone sees you as a mental case or a productivity number money maker for themselves. And another thing staynaway away from anything with gluten and soy . Both are processed in such a bad way that it causes over 256 dieseses and disorders, and many can be contributing to your current health issues. Get the word out. Therse surgeries are just another making be corporate scheme to scare you enough to sacrifice and shorten your life while making them wealthier. Is thisvwhat you You want to contribute to society not alone to your own pain?
I know I don't and I am exact 4 years out from Gastric Rny and living in home bound hell. In constant pain, never
know when I am going to blackout, pass out, have a heart attack of hypoglycemic attack. What adds to the hell is it has slowed me down so much, there is little enjoyment from the things I onceed love doing or had aspired to do. I'll fight to the death, if it makes the difference in at least oneperson's life. I hope you feel the same why.

acarbose med

Help! I'm now on Acarbose and can't figure out how to eat. If I eat
carbs it tears my stomach up-painful and gas----if I don't eat carbs
I can't keep my sugar up. Anyone who is on Acarbose please share
how/what you are eating- I know everyone is different but the info I
got from you this past summer helped so much. Hope all is going well
for ya'll.
Thanks
Clia

Acarbose

I've been using Acarbose for a few years now and for the most part it seems to be working. If I ingest carbs that exceed 25 grams, I take two Acarbose. I used to take just one, but that no longer works for me. I can take up to 6 (25 mg) tablets a day. I try to keep my carbs at a minimum but occasionally I blow it. No painful stomach cramps or gas. I have my 10th anniversary of my gastric bypass surgery next week, and the problem was diagnosed about four years ago, although I had problems for several years prior. I can pretty much tell if my BS is in the high 50s if I'm not distracted, and absolutely for sure when it's in the 30s or 40s. Thankfully, for the most part I now can catch the drop before it drops too low. Believe me, in the beginning I never knew what hit me, but after all these years I pay attention to the signs that my body is giving me. For the most part, I stay away from pasta, bread, rice, chips ... those are the kinds of foods that trigger the problem. I always keep a couple of Atkin bars (low carb) with me in case I'm in a situation where there's food that I should not be eating.

You definitely have to start

You definitely have to start VERY slowly on Acarbose. Chewing rather than swallowing it allows it to work more effiently also. Always take it with the first bite of each meal. I hope you were started on the lowest dose of 25 mg. Try breaking it in half to begin with. Try these suggestions before you give up totally. Hope this helps.

My bariatric saga

My name is Loretta. I had gastric bypass in October of '06 and have had numerous complications. In July of '07 I had been suffering from a non-healing ulcer and basically had to have the entire procedure done over. I had started weighing almost 380lbs and by this time had lost close to 190lbs. After months of not being able to eat I had started an outpatient group support for depression. They took my weight on a daily basis however I had to stand with my back to the results and wasn't told what they were. After a weekend I went back in on Monday for my support having lost another 5lbs and the doctor and security came into the room and forcibly admitted me into a psychiatric hospital with the diagnosis of anorexia!! Their treatment involved locking me in a room with a tray full of food and leaving me in there for long periods of time and then reprimanding me for not being able to eat! It was the most horrible experience of my life!! Finally the nutritionist from the gastric bypass center informed them of what I could and could not eat. At present I weigh 145lbs.

After being released I tried to eat the lean cuisine meals but constantly felt horrible after. I was always sweating, passing out, heart racing, etc. I honestly think I had developed the hypoglycemia and it went undiagnosed until just 1 year ago. I tried diet changes and also a medication called Precose which didn't give me the desired results. The internist wanted me to go to Mayo Clinic to have part of my pancreas removed which I refused so my bypass surgeon and I decided to reverse the bypass and hook up my 'old stomach'. This helped with the hypoglycemia somewhat however during the surgery to remove the ulcer in '07 my original stomach was damaged and didn't work anymore. I was only able to eat every 3 days because everything sat in a huge pouch in the bottom of my stomach that had developed which made me so miserable that I had to take very strong pain meds all the time. In September of this year my surgeon removed my stomach and just left me a 'sleeve' from my esphogus to my intestine which still causes quite a bit of pain when eating and low and behold the hypoglycemia came back with a vengeance! I'm desperate to find a diet plan that will help and don't know where to turn. The internist tells me no carbs however there are carbs in EVERYTHING...vegetables even! My dog seems to sense when I'm crashing especially if I'm sleeping (I think I pass out instead of falling to sleep sometimes) and he rouses me. Last night was especially scary to have him rouse me drenched in sweat and hardly having enough sense to check my sugar. It was 30 and I felt helpless! I finally was able to call out to my husband loud enough to wake him and it took 5 glucose tablets to raise it to 41. Gluscose seems to be my main diet lately! I realize it's trial and error but just talking to someone who is experiencing the same thing I am because nobody else can even understand the roller coaster ride this affliction involves. I would enjoy having someone to talk to regarding this.

Rrespse to Loretta's "bariatric Saga"

Hello Loretta,

I'm so sorry to read about what's going on with you. I have some ups and downs, but so far nothing that bad. I had my surgery (gastric bypass)in May 2007. About 4 months or so ago, I noticed some sweating, lightheadedness, and would grab a piece of candy and minutes would feel better. I started researching on the web and diagnosed myself, which was confirmed by the endocrinologist I was referred to.

So far, I have to eat a low carb diet, 6 small meals a day-when I can, so far so good. The lowest I've been was 52 on Thanksgiving Day, after having some desserrs made with Splenda instead of sugar.

WIsh the best for you and all of us on here.

CIndyGjjua

The saga continues...

I had another seizure a few weeks ago. I had eaten a blueberry muffin and the seizure happened two hours later. Honestly, I know I shouldn't have eaten something so high in carbs & sugar, but I did. I have been gaining weight because my diet is so poor. I am craving comfort foods because I'm dealing with anxiety and depression. Oddly, I think the anxiety & depression are exacerbated by vitamin deficiencies from malabsorption.

My blood sugar during the last seizure was 54. That's at the time the ambulance came and the EMTs checked it. It was probably lower at the time the seizure started. I've checked it randomly at home and it's been as high as 355. The random swings clearly show that my body can't control sugar at all.

I recently moved to another state and got a new primary care physician just yesterday. I explained to her what was going on and her first comment was that she thought maybe I was diabetic. I am fairly certain that's not the case. She sent me for blood tests, including an A1C. That should give a good picture of my blood sugar over the last few months. I will be interested in seeing how that comes out.

I'm on disability for anxiety and depression. I'm wondering how I will go back to work even if I get these conditions under control, since the seizures seem to come at random.

To top it all off, I have a brother with epilepsy. I don't think this is related, since I had gastric bypass surgery in 2009, but it does add another factor.

I lost 155 lbs after my surgery. I was down to 195. Yesterday, I weighed in at 236 and am really upset about it. I should be much more in control of myself, but I'm not.

Unrelated to the seizures, in 2010 I had a life-threatening complication of gastric bypass, called internal hernia. When the doctor did the surgery, he didn't close the mesentary completely and my intestines herniated through it. The surgeon said that if my intestines had twisted, I'd be either dead or on a transplant list. They performed emergency surgery and I've been fine ever since.

As awesome as it is to have lost weight, I'm sort of at wit's end with the complications from the gastric bypass. Neither of the problems I've experienced were disclosed to me as possibilities prior to the surgery.

If anyone would like to reach me privately, I'm at unchainedmuse@yahoo.com.

-Theresa

So glad to get some answers

I am 7 years out from RNY GB surgery.I,too, have been suffering from the hypoglycemic episodes off and on and am glad to know that I'm not crazy. In the beginning, I attributed the problems to "dumping" and avoided sugary foods. But as of the last year and especially the last 6 months, the episodes are more frequent and the symptoms more severe. My GP thinks I'm crazy and possibly a hypochondriac since my sypmtoms cannot be backed by a one-time blood test conducted in his office. I have bought my own glucometer and have been tracking my own levels. My "normal" fasting levels in the mornings have been around 70. My 2hr after eating levels have been around 58-60 and when showing bad symptoms as low as 40. Am trying a diet of low glycemic index, but still feel awful and very tired. Any idea how long these feeling will go on before I start to feel better?

hyperinsulinimic hypoglycemia

You will not start to feel better. The only thing that will help is a vigilant low carb diet, possibly Acarbose and possibly Exendin (9-39)to prevent the lows. Exendin is a GLP-1 receptor blocker which seems to limit the overproduction of insulin. By low carb diet, I do not mean low glycemic index; you have to meticulously count your carbs, including measuring and weighing your food. Always pair a carb with protein and eat the protein first. Mesure your blood sugar meticulously before and after meals to find out the amount of carbohydrates you can safely eat. These measures may provide some relief for a while. Contact the University of Minnesota Bariatrics team; they are looking into this complication. Some surgeons believe a takedown may help. Read the article on takedown in the October issue of Bariatric Times.

Hi, I hate to be the bearer

Hi, I hate to be the bearer of bad news but I haven't known anyone to get better with this. If your dr isn't helping you, please see an endocrinologist. Try to find one that is familiar with post-gastric bypass hypoglycemia. Even better, there are some great drs at some of the larger hospitals that have done a lot of research on this condition. Mayo Clinic, Joslin, Johns Hopkins, Mass General, Cleveland Clinic & I am sure there are others. If you live close to one or can travel, it would be well worth it to be evaluated. Good luck and take care.

response to all

Gayle and everyone whose comments I am reading here:
I accidentally found this conversation five minutes ago, and wish I could have you all together with me to talk. I too had Roux-en-Y, ten years ago next month. I will keep this short- open Roux was successful, I lost 151 pounds by one-year anniversary. Two years later, fistula formation and open revision. Two years later, ulcer formation and adhesions to the liver, a third open procedure with gastrectomy. I have nothing left now - no reversal for me. My sugar, too, falls to the low thirties after I eat or when I get stressed. The crashes started out mild, lots of warning (funny feeling in my head, sweating, confused, rapid pulse), and have progressed to nearly instantaneous - makes driving and social activities very difficult. I have taken acarbose but stopped after two years, as it became ineffective. Next they wanted to do pancreatic resection. That just didn't seem logical, since they couldn't pinpoint where the hypersecretions were coming from exactly in the pancreas and no guarantees of success. My worry was that other parts would begin hypersecreting. I have had enough surgery.

Someone talked about memory loss. I have CT scans and MRIs that actually show changes in my brain. This is attributed to vitamin B deficiencies (the B complex)and they don't know if it can be reversed. I've done the iron infusions for anemia and thiamine infusions for B1 deficiency, give myself B12 shots weekly. My lab numbers range from "too low" to "just kissing the bottom end of normal" since this all started in 2001. This just isn't good enough: Ten years is a long time to be deficient and its taking its toll on me. I thought I had Alzheimer’s about six months ago when everything seemed to be deteriorating. I can't remember things, can't find my words, can't get my point across, can't form coherent thoughts. I get lost now in my own neighborhood. I am on leave from my job because I just can't do it effectively anymore. I can't "connect the dots" when I think, get lost, ramble, like I'm senile. I changed up my diet a few years back to high-protein, low-carb. I did better with sugar crashes, but this type of diet is high in fat, and messes with your kidneys, blood pressure, sodium levels and blood fats. So I'm back to crashing, though I have good BP, sodium, and kidney function, at least today.

My question to you all is this: Has anyone found one doctor to treat the whole person? Endocrine doesn't care what hematology says, who doesn't care what neurology says. The PCP’s are just clueless. The latest is, "how about psychiatry?" I am at a loss what my life is going to be like. I am so glad I found you all. I have never felt so alone in all my life. While we’re at it, how about never-ending muscle cramps, bone and joint pain, muscles that ache for no good reason?

doctors, in response to Gail's post on Nov, 29, 2011

Hello Gail,

I had gone to my PCP when I self-diagnosed, after finding this site and reading all the posts on here. He was flustered, but sent me to an endocrinologist at Joslin Diabetes Center, here in Nashua, NH. The Dr. there I'm seeing has taken a special interest in post-gastric bypass patients that have this hyperinsulinemic hypoglycemia. She has ordered so much bood work, I feel like apin cushion. She also put me on Metformin, which was making my blood sugars drroopeveemoreeso. The Dr. that heads up that office called and told me to quit taking that.

I am solely watching what I eat, trying to stay on low card high protein-starting most of my days with a protein shake (made with 100% whey protein powder, fat free milk, blended like a smoothie with ice. Occasionally I put a banana in it, just have to drink it slowly, making it last for several hours.

This really sucks and I wish I was told this prior to surgery. I more than likely would have opted for the lap band instead.

Good luck to all of you on here and to anyone else you know that is in this predicament.

Cindy D.

hypoglycemia after bypass

Hi Gail,
How are you doing now? I am in NH and considering a second opinion at Joslin Clinic in Boston with Dr Patti.
I see endocrine at Dartmouth Hitchcock. have more testing coming up but talking around partial pancreatectomy....
my sugars slump to 30's, even 26; and there is less of a pattern now.
Would appreciate if you could update me on your journey.
Thanks, Diane in NH

Hi Gail, I am so sorry for

Hi Gail, I am so sorry for what you have gone through. Your story sounds worse than mine. I have brain damage from severe hypoglycemia and your description sounds identical to mine. It has caused me severe depression and panic attacks (when I have gotten lost like you.) I finally found an anti-depressant that is helping me.
Unfortunately, to address your question about finding one treating dr, I have to see five different specialists, but they are all great about communication. I live within driving distance of Johns Hopkins and see specialists there that research this condition who communicate with my primary drs closer to home. They were talking about doing a reversal on me previously but have since ditched that idea because the few they have attempted it on have shown little or no improvement. The drs at Hopkins are now recommending that I have the remainder of my pancreas removed (already had 85% resected.) They have consulted with other surgeons in Denmark who specialize in the GLP1 hormone, the gut hormone that is the cause of our problem, and they feel that it may be the best course of action. I will be a type 1 diabetic and have to take pancreatic enzymes (already do anyway) but as they say, it is something that is controlable and easily manageable with an insulin pump. Our condition is not controlable in the least. Many people live without a pancreas successfully. Long term complications are a very real issue with us. Wild swings in blood sugar are the cause of diabetic complications more so than high blood sugar levels in themselves (according to my drs) so we all stand a very strong chance of developing life threatening complications as soon as ten years after developing this condition. If I can keep my blood sugar levels under better control without a pancreas then I stand a good chance of living a longer life. As my life stands right now, I think it sounds like a better option. A total pancreatectomy is something that has been done many times before and people live fine like that. I went on a blog in yahoo groups and talked to some people who work full time and live completely normal lives. I think this is something I am ready to try. I am soooo tired of hypoglycemia EVERYDAY. Headaches from rapid drops in blood sugar. Getting overwhelmingly sleepy from rapid rises in blood sugar. And you are so right, the high protein, low-carb diet works better but it is not very healthy. As a type 1 diabetic I will be able to give myself a bolus of insulin based on the carbs I eat and I will basically be able to eat a normal healthy diet. No extreme diets. I, too, suffer with severe anemia. Makes me so weak and tired. I have to get iron infusions off and on. I hate the side effects. It's funny I have never had a B12 problem, very unusual.
I hope you can find drs that are willing to work together. Please keep in touch. It helps so much to have someone to talk to about this. Most people just don't understand because our condition isn't visible. I have been on disability for 2 1/2 years because of this. It started out because of passing out/seizures then after my pancreatic resection I thought I would be able to go back to work but my lost brain functions totally changed my life. Keep me posted on your progress. I'm glad you found this blog too. Take care.

Glad I'm not just crazy

I have been having problems for the last 2 months and getting no where when I found this blog. 2 months ago was my first bad drop I guess. I was at work and started shaking, felt nauseated, and just out of it. I work at a school and the nurse was called. She thought it might be my sugar, but had nothing to check it with. Had me eat some peanut butter, but took a while for it to change anything. The nurse called the ambulance. It took 20-30 minutes for them to get there. I was still shaking and felt exhausted when they got there, but they checked my sugar then and it was 72. They took me on to the hospital where they ran a few tests and sent me home. I went to my regular physician and he said it was vertigo- wow- really! Then, went to my gastric bypass surgeon and talked to them. They said they didn't know what was wrong, but the dietician said to start checking my sugar and documenting what I was eating. Really quickly I realized that my sugar was rising and then dropping dramatically after I eat. Going from 178 to 30. I have been alone a few times and it took me a while just to be able to go get something to eat- I was so "out of it." I did a search for sugar spike and crash and heart palpitations and found this site. I'm so glad to have some idea what is going on. I have been having horrible pain after eating- feeling like my stomach will explode, feeling terrible "heartburn" types of pain and reflux when I was told I wouldn't ever have that problem again post surgery. I am a year and a half post gastric bypass. I've lost down to 127 from 282. I've been pleased with the surgery for the most part- I had to have part of my colon removed last year because it was folded over on itself- but I was having similar pain symptoms then. Now, with this going on, I've gotten scared of going places by myself.

Hypoglycemia

I'm about 7 years out from Rouen-Y and am now experiencing hypoglycemia. It is debiliatating when it happens. I sweat profusely, get confused, and am on the edge of fainting -- and it's happening more frequently. Reading this blog has been very helpful & make me realize I must find help quickly with this. I use glucose tabs when it happens. They drain me & all I want to do is lay/sleep. Anyone aware of a doctor in Washington state that might be familiar with this? Email me at; benderg@charter.net please. I can't say I am sorry I had the surgery - yet. From the sound of this, I may be saying that down the road if I can't get this controlled soon. Until this started, I was very pleased with the result & changes the bypass had made in my life. I, too, would have opted for something other than Rouen-Y had I known about this!

Appreciate this blog & any help in finding a medical professional that is knowledgeable with this specific issue.

Gayle

hypoglycemia after gastric bypass

I had Gastric Bypass Jan 2010 have lost about 150 pounds. For the past 6 months I have had sugar drops but in the past 45 days they have gotten severe. I have been seeing a endocronologist who has prescribed multiple glucogons. I have had two episodes driving, one while singing on the praise team at church, one at work the ambulance was called 3 times twice I was told my body was shaking so bad that they think I was having a sezure not sure I don't remember hardly anything.
I really would like to talk to others that are experancing the same issues after this surgery. I was tested for a insolonmia test were normal in fact fasting 72 hours my sugar only dropped to 62 but when I eat somtimes it drops as low as 20. I am scared I will hurt someone driving so I have been approved for a dextros monitor that will monitor my blood sugar every 5 minutes and will sound an alarm if it drops below 70.
If you know of treatments others are having with hypoglycemia please let me know.

Reply Nancy ...

Nancy and Bloggers:

If you have time read this entire blog ... many helpful hints and great information. I understand your fears and medical issues as they are very much like my own. You will have to be extremely careful in how (eat slow) and what you eat (avoid carbs & sugar). Stay to a very low carb diet ... high carbs will cause severe low blood sugar problems because of the rebounding ... sugar will throw you too high then drop you extremely low ... once this starts, it is at least in my experience a cycle that will take the next 4 plus hours to level out back within a normal blood sugar. But when you are crashing you need 15g of carbs to level out, usually. Don't over do it ... take it easy ... even if afraid and I know how it is. Try to stay with the 15g of carbs and ride it out ... it can take up to 20 minutes until level again. Plus and or minus the Dex 4 bits usually 4 of the Dex 4 glycose bits works without all the added calories of other foods. But we are all different ... so do what works for you.

Additionally stay away from fruit juices as they are loaded with sugars ... you will have to switch to a diet juice or 50% less sugar items and measure what you eat and or drink so you can identify what is happening and what is causing the low blood sugar problems and the rebounding when your blood sugars go too low.

When the symptoms of severe hyper insulmatic hypoglycemia first start it's frightening, and I know you think your dying or going to pass out ... which can happen but some of this can be managed, it's just scary. Teach those around you how to help you in a crisis when your blood sugars are too low. This is going to require lots of TLC from your choices of foods and how you manage your eating and eating patterns. Small meals many times per day ... with lots of protein and low carb foods. Sounds hard at first ... but you can do this ...

When you are crashing and your blood sugars are dropping to an unsafe level too low go for approximately 15g of carbs no more ... (eating a whole candy bar is not the right choice or a glass of orange juice) or you will toss yourself into rebounding of having your blood sugars go too high then drop out in the 40's, 30's and 20's which is not good and what needs to be avoided.

The other thing that is helpful is a glucose meter if you can't get one by rx through your medical provider Target has a non-brand glucose meter and strips available the meter is approximately $9.00 and 50 strips $12.00 (50) but please get a glucose meter ASAP. If you buy a Accu-Check Aviva there is a card the you can register and your Test strips will never be over $15.00 per RX. I just filled mine using the card that I registered $15.00 for (300) test strips per my RX. For more information go to: www.accu-chek.com

Test before you eat and 20 minutes after you eat and or when you feel strange or start to have symptoms of your hypoglycemia. In some cases people do not feel their hypoglycemia coming on ... so testing is important to know where you are and what you need to stay on board. Always test before you drive and have the proper carbs available an on your person and or in your car at all times. This includes Dex 4 is very portable and like products which are sold at Walgreens small qty's of a 10-12 bits $2.00 and brand name Dex 4 about $5.99 for 40 bits.

Also, keep in mind that there are good carbs and bad carbs ... bad carbs are anything "white" bread, potatoes, pasta, ice cream etc., which will cause major problems with the elevation of your blood sugars and make your blood sugars ultimately "crash" in the too low ranges like you have in 40, 30, 20's.

Good carbs are multi-grain dense breads, Dream Fields Pasta - sweet potatoes in moderation these are wonderful for NOT causing spikes in the glycemic index and give you some kind of normal. I recommend that you get some information with regard to low carb diet and low glycemic index diet this will help in creditably to reduce the low blood sugar crashing.

I hope some of this information is helpful to you and anyone else reading this ... as living with this surgically caused medical condition is a 24x7x365 nightmare to adjust too and live with it robs the quality of life and I am not sure if I/we ever do really adjust ... I don't know. I just try to do the best I can and share what I have learned with those who also suffer with this condition. The doctors have told me that I had 6-7 years to live with this condition ... that was in 2006 but hopefully I will beat those odds and you will too. Healthy is a state of mind ... be mindful. God Bless, Jeanne

Jeanne's info

Jeanne- your blog is so helpful. To the new people on here this website had given me the most information on our disase. Read it all- write it down-print it- save to your favorites. I re-read this info at least once a week- its hard to remember it all- this has caused me to have short term memory loss. It also helps to realize you aren't alone when you are having a bad day. It is real easy to feel hopeless and when I read blogs like Jeanne-Jade's etc it helps a bunch. God Bless to all Clia

Low Blood Sugars

I have been having episodes where after I eat something high in protein that I have a hypoglycemic reaction within an hour. Today my sugar dropped to 39 after eating fish for lunch. I usually take a glucose tablet and feel better within 20 minutes. I know when to test my sugar because I start to feel lightheaded and then I start sweating. Right now I am going through a different problem with my surgery and that is severe iron deficiency. I am currently recieving weekly iron infusions because my Iron dropped so low that it affected my memory, breathing, and immune system. If I had to do this over I would never had agreed to the surgery, ever since the surgery 11 years ago I have had major health issues. I was told that I needed the surgery to save my life but I have more health issues now than before the surgery. I wish I could see an endrocronologist but right now my infusions are being paid for by a church because I am not working and have no health insurance. Maybe someday the full effects of this surgery will be publicized and people will realize it is dangerous.

Hi Nancy, I feel for you. I

Hi Nancy, I feel for you. I have been where you are. I am faring a little better now. I had 85% of my pancreas removed which has definitely helped some but did not cure the problem. I don't pass out near as often. I also wear a continuous glucose monitor. It is my life saver. They have backed off doing pancreatectomies now except in extreme cases because it only helps some. GB reversals have been tried on a few as well and although it helped initially, in all cases the hypoglycemia returned in time. I almost had a reversal done recently but decided not to when the results of other patients was not very promising. The only other therapies I can tell you that are being used and are helping some patients are the medications Octreotide, Diazoxide, Verapamil and Acarbose. I have tried them all. I have been on Acarbose for a couple of years. It does help lessen the severity of the spikes and drops. Low carb, high protein frequent meals is absolutely imperative. Finding the foods that work for you and the ones that are poison to your blood sugar levels is crucial. It means your life. Feel free to chat anytime.

update from Jade

Jade,
Its good hear you are doing somewhat better. I too, am doing a little better- found a dr that would let me try the meds-on Acarbose. I left my job as an office manager and went back to what I used to do- that seemed to help also. Any ideas on how not eat the bad stuff? I know what I'm supposed to do- I'm the one who suffers but sometimes it is so hard to control. Does the Acarbose cause you to have gas? Thanks for your help
Clia

Finally some news!

Hi folks,

I am so happy to have found this site. I have been having strange attacks that my doctors have described as seizures. They only happen when I eat foods high in sugar, so I didn't think that diagnosis was accurate.

An hour or two after I eat something high in sugar, I get very shaky and lightheaded, and subsequently pass out. When I wake up, I'm in a fog for awhile.

I'm so glad to know this isn't a seizure disorder and that there are some doctors who are aware of this condition.

-Theresa

Hyperinsulinemic Hypoglycemia

Hello,

About a few months ago I started getting these strange feelings that started on the top of my head, then dizziness, sweating and such. It was mostly only happening to me in the mornings, after breakfast and at work. Thankfully, I went on the net and googled "low blood sugar" and found this site. I had gastric bypass about 4 1/2 years ago, felt great up until a few months ago. Like a lot of people said on here, it's nice to know I'm not alone with this. Fortunately, things haven't gotten so bad for me that I can't work (yet anyway). I went to my primary care doctor, who was stumped when I told him I self-diagnosed with this and he researched as we were talking. He referred me to an endocrinologist. I am having an MRI of my pancreas next Thursday-have to say I'm a bit scared. My husband is Type 1 Diabetic, and even though the lows are similar, it's so different. He has been a huge help to me emotionally as well as in the home. He will do anything at all to help with housework, laundry, etc. He's the best!!

Have any of you looked into getting a lawyer for malpractice due to lack of total information prior to having this surgery? I've written to our local news station. as well as Ellen Degeneres. Of course, I haven't heard anything as of yet, but am keeping my fingers crossed. This is an outrage that we were not informed about this possible 'side effect' of the surgery we all wanted.

I hope everyone gets the help they need, I'm sure trying but even the doctors are stumped. I feel like a pin cushion with all the blood tests I've been going through lately. Hopefully it'll all be worth it in the end.

Cindy

Funny you should mention the

Funny you should mention the malpractice issue. Yeah, I tried. I, too, am so angry because my GB surgeon is fully aware of this condition. I was referred back to him initially when I was first diagnosed and he was not the least bit interested in helping me. They don't want to hear of any problems. They only want to paint a happy, positive picture of GB surgery and rake in the profits. They leave out the disabling long-term affects. Five attorneys all told me the same thing. Informed consent is far too difficult to win and none of them would take my case. It just makes me sick that they can get away with hiding this from people pre-surgery. I, too, would love to somehow get the message out there to warn any who are contemplating this surgery that is SUPPOSED TO SAVE OUR LIVES BUT ENDS UP DISABLING US. I have a friend who died from this a year ago. She lived alone and her mother hadn't heard from her and found her unconscious on her kitchen floor. She was brain dead from low blood sugar too long. They took her off life support. Somehow the word needs to be gotten out there. I just don't know how.

Reply: Donna & Blog Mates

Donna:
I am sorry that your journey with having the RnY gastric bypass has devastated your life as much as it has mine, we all have different outcomes and carry different diagnosis's all in the same direction - in having become surgically unhealthy while trying to initially get healthy in losing weight to have a better quality of life. Unfortunately, we have the weight loss initially and then have lost our quality of life - I didn't sign up for that nor was I ever told - by anyone that this could happen. I felt the same way in finding the blog ... and finally having a name for what it is that is happening to me ... and to others who have undergone the same surgery and medically challenging issues that interfere with daily life and relationships. I truly and sincerely hope that the blog helps in some way to ease the level of uncertainty that we all share. I am thankful our blog administrator gave all of us a format to discuss, help and support each other ... which I truly appreciate ... God Bless you and keep you in the zone of being the best you ... that you can be, it's hard work ... that most people don't even have a comprehension of what our experience really is ... for me it is a 24x7x365 for the balance of my life struggle - that I personally feel has destroyed my life, relationships. You are right the doctors don't have enough knowledge in this area ... with exception to perhaps the Mayo Clinic, MN and John Hopkins ... and who has access to those places through HMO's? Not me ... I am not severe enough and or debilitated enough ... purely because I do everything within my power to "try" to stay in the best condition I can ... with this chronic severely debilitating surgically caused disease process. It is a cascade of illness one into the next ... I don't really know where I am going in this process ... but hopefully I can bring some comfort and perhaps a grain of knowledge to those that are also suffering as I am ... even if it is simply emotional support. God Bless you and stay strong ... I pray for each of us ... and our blog administrator Matthew P of whom I am grateful as he made this blog possible to give us this format ... "Thank You" Matthew ... I sincerely appreciate having an outlet for my emotional and physical grief that most people don't understand.

God Bless, jeanne

Takedown

Thank you Jade for your reply about a takedown being a possible answer to the hyperinsulimic hypoglycemia. Do you know who the doctors are at Hopkins who are working on this? My doctor, Dr. Rosemarie Jones, likes gastric plication. The problem is insurance doesn't cover it, and as a consequence there is very little data. She says it is like a sleeve but without cutting as the stomach is folded in on itself. I would self pay for the plication if I thought it would be beneficial. I weigh 102 now though. Pain is a terrific motivator in keeping me from eating carbs.

Hi jennnys, I thought I

Hi jennnys, I thought I replied too but I'm not sure what happened. Thanks for the well wishes. Yes, I am talking with the doctors about doing the takedown now. The few who have had it done have seen modest improvement in the severity of their hypoglycemia. It is not a cure by any means but at this point I will take a modest improvement over no improvement at all. The surgeon who is doing the takedown surgery there comes highly recommended, Thomas Magnuson. Dr. Todd Brown is an endocrinologist there who is seeing patients with this condition and is trying different medications before recommending surgery as a last resort. I already had the pancreatectomy done two years ago at Hopkins. Although it didn't solve the problem, it did save my life. It gave me significant relief. Maybe this surgery will help even more. Being on disability at 50 wasn't what I had in mind for my life. I've got to try this. I've tried everything else and there is nothing else to try. I'm not ready to give up and say this is how I'm going to spend the rest of my life.

I have never heard of the gastric plication. I will def research that. Thanks for the well wishes. I will keep you posted as things progress. Please keep me posted on your progress too. Best wishes to you.

Takedown

This comment is to the moderator. I may be confused. I think Jade made a reply to my comment about Johns Hopkins, but I can't find it. How do I look for it and reply back to her? I think she is going to have the takedown and pancretomy and I want to wish her well.

I am 3 years post RYGB. I

I am 3 years post RYGB. I feel I am relatively doing fairly well, not too much hair loss, slightly anemic, but as long as I am compliant on my iron that goes away. I have been very lucky not to have any severe dumping issues except with ice cream, which I stay away from. I have lost 155 lbs.

I have recently started having hypoglycemic episodes. The first time happened 30 min after I ate a high carb (pasta and garlic bread) meal. I contributed the episode to that, and started watching my carb intake. Two months later, I had another episode. This one was 1 hour after I had eaten, (taco salad, no shell and a few tortilla chips) 20 min after the episode started my sugar was 60 so we think it was below 50 when it happened, and 2 hours after I ate, it was back to normal at 99. And once when I had not eaten anything, sugar was not taken so I am not sure what the glucose was.

I will be having a 2 hour glucose challenge with insulin levels in the next week. I am hoping that this is just something that is a fluke and will not continue to happen.

6 years post

I am just getting worse and worse. Did not even talk to my Doc about it. What can he do? It started after high sugar meals..Ice cream and such..It was sooo easy to stay away from the sweet foods. Then it would happen after high carbs. One day I just had a piece of sprouted bread. 1 piece but maybe not enough food and I started shaking,sweating and crawling and was very hungry. That is when I bought a monitor. Normal in the mornings. If I eat every 2 hours..high protien low carbs and small portions..I am fine. Funny thing is now if i miss a meal I have terrible attacks and my meter will read under 40 just by missing a meal. So at first it was what I ate and now it is also if I dont eat or miss and it hits me fast. I bought glucose tabs for when I am driving and have to make sure I have food on me at all times. Just yesterday I was at starbucks and it hit and I could not stand and had to grab a chocolate bar and eat it before I ordered. I normally dont eat chocolate bars, but this was an emergency and it did the job. Just saying your symptoms might not go away and to be careful. Hi protein low carbs every 2 hours and small portions.. Noooo potatoes. Worst attack I ever had was after a bowl of mashed potatoes on an empty stomach.

Reply to Wendy and Commentary ... to all.

Reply to Wendy:

I have found a doctor who has been helping me ... I live in Minnesota, however if you make contact with Dr. Foley maybe his office can refer you to someone in your area ... I don't know if it's possible but it's worth the try. I really, sincerely do understand we are all just battling this beast as best we can.
God Bless each of us:

PLEASE contact your doctor and or Contact:

Dr. Christopher Foley M.D., Minnesota Natural Medicine, 3640 Talmage Circle #208, Vadnais Heights, MN 55110 Phone: 651-484-5567 Fax: 1 - 651-344-4400.
_____________________________________________________________________
_____________________________________________________________________
However:

Most of the doctors I've seen so far don't have the training and or understanding of Hyperinsulinemic Hypoglycemia and the other many, many "other" associated disorders and or how to even treat this surgically caused disease process ... with exception to Dr. Foley.

The low carb diet isn't the cure all either, as I still suffer from extreme hypoglyemia lows 27-34-42 etc., even with the low carbohydrate intake there are problems.

I have found eating extremely slow "helps some" if I am eating a carbohydrate or anything for that matter. It's hard to learn and stay with the extremely slow eating and drinking process. It takes me approximately an hour (60 minutes) to an hour and a half (90 minutes) to eat a small meal of approximately 3/4 to 1 cup of food.

When I don't have the time to deal with eating "real" foods, I have resorted to blending my foods and supplementing with powdered protein such as NytroWhey it blends really nice in water, milk etc., (2 scoops 150 cal, Fat 4, Cholesterol 10 mg, Fiber 1, Sugar 1g, Protein 22.5g, Cal 120mg, Sodium 100mg, Potassium 180mg. Distributed by Prosource 1-800-310-1555 or you can find other protein powders at GNC or online health sites.

Drinking is problematic as well as I am always semi-dehydrated as I can't get enough fluids (like water) in on a daily basis. Forget drinking anything alcholic ever!!! Six years ago on a holiday (before) I realized what was going on with my malabsorbtion, anemia and ongoing hypoglycemia ... I was offered a glass of wine, I had less than a 1/4c of a small wine glass and I was immediately stumbling drunk!! I haven't had anything alocholic since. Anyone else experienced this?

At times I have pain after eating ... which doesn't happen all the time, but I can't explain ... the cause which can be dull to sharp stabbing pain at times. Anyone else experience this?

My hypoglyemia also seems to be affected by my activity level as well, not only eating. Going for a walk even a short distance of a few blocks ... I have to have my Dex4 and or food with me to recover from dropping/crashing too low. I am fortunate that I can at least feel ... when I am dropping/crashing. However, I have to take immediate action because once I start to drop it can happen so fast within minutes ... I feel like I am going to passout. Does anyone else experience this?

The same goes for if I eat a carbohydrate my blood sugars shoot up extremely fast which is the reason I can not eat at resturants - (learned this the hard way.) I asked for no sugar iced tea - got the sugared iced tea two sips and there I go. I just can't trust out to eat places how they make the food can often have hidden sugars/ carbohydrates especially in salad dressings etc. Anyone else experience this?

After a severe low ... it takes me a while to stablize and I suffer 24x7 from an extreme and profound fatigue, sleep doesn't in no way resolve. Ironic isn't it the surgery that was going to save my life has ultimately destroyed my life ... I don't have a quality of life and I truely feel, at the rate I am going that I will not be here in 2-5 years. I just feel so betrayed on so many levels ... but I keep on trying the best I can and warn others to NOT have the Rn&Y Gastric Bypass, there is too much that science and surgery do not understand the complications nor how to treat the complications of this surgery. I am feeling really depressed these days ... just sick and tired of being sick and tired ... not enough good days to outweigh the tough days. Jeanne

could jeanne please get in

could jeanne please get in contact with me as i to have all of the problems she is suffering from. seh can e-mail me at dmoorer1@hotmail.com.

Aug 31 post

Jeanne,
I have problems with exercise(normal day to day routines) and achocol. One drink does me the same way-so no drinking. I don't exercise anymore because of this and still aren't able to go to the store clean house without bottoming out. I have an office job but walk around a lot so my Dr has me on restrictions. I also slow my pace down so I walk like I;m a hundred- most days I feel like it too. I too, have dehydration-malnutrition-etc. I know need to add fiber to my diet due to a tear(may need surgery) which is hard since I'm so limited on what I eat. You are right- this info needs to be told to potential surgery patients.Clia

low carb diet

One month ago I started the 10/60 Diet ... lose 10% in 60 days. Although I have lost five pounds--I can't seem to lose anymore--my blood sugar does not get the extreme highs and then bottom out as they did before. No breads, no pasta, no rice,no potatoes ... although I do take one day a week and eat something that I've been craving. The few blood sugar episodes I have had were when I would get a bag of pretzels out of the vending machine and NOT take a pill (Arcabose). The longer time goes by, the more I am certain that my body has become extremely sensitive to carbohydrates and, sometimes, even a pill does not ward off the hypoglycemia. I'm trying to convince myself that this low carb diet is for life. It's a wonderful thing to not always have to worry about my b.s. getting so low, but I am still in the back of my mind always aware just in case.

help with hypoglycemia after gastric bypass

My gastric bypass was done in 2004 and for the past five years I have been seeing every neurologist, intern and endocronologist you can imagine. I have tried to get accepted into a program at the Mayo Clinic but to date they say I am not bad enough. I lost 130 pounds and couldn't eat anything after my surgery. I became very weak, vitamin deficient, lost hair, and was having metabolic seiazures a few times a day. I was on vitamin injections, growth hormone shots, sandostatin and diazoxide. Nothing but nothing has stopped these episodes. I can not digest protein, I throw it up and the only thing I live on is sugar and carbs. Needless to say I have gained back 75 pounds but worse, I have brain damage and no life. I never know when I am going to have an episode where I lose consciousness for up to an hour where it takes me 24 hours to regain my strength and memory. I do not drive anymore because I had an episode while driving, luckily as always I have a few minute notice that my body is dropping and I become all numb, tingly and disoriented and I know to lie down right away. My sugar drops to the low 30's and the only thing that sometimes helps bring me back before going out are the glucose tablets, candy or sugar. But it does not always work. If someone knows of a dr that only specializes in this field, not an endocronologist but a dr that specializes in hypolycemia fter the bypass please, I beg you, let me know.. I not only am hypoglycemic but also hyperglycemic which makes it more of a problem..Although it is wonderful to know I am not alone in this world, I desperately need help in correcting this problem. Just eating a low carb diet does not stop my episodes.
What a mess this surgery turned out to be. Thank you for your help and support.

Just found this site

I have tried to find out what was happening to me for so long! If I knew I would be this sick I would have never had this surgery. It's been years ago, but it is killing me! I am scared to eat cause I get so sick. I checked my sugar while ago cause I feel so bad after eating and it's 37 This is everyday I go through this. I have begged doctors to help me. A friend of mine died, she was just 30 years old. They said they don't know why she died. She had also stayed sick ever sense this surgery. Does anyone know what type of Dr might help or even listen. I have lupus, fibermyagia and COPD to cope with each day already. I'm tired of being sick!

eating plans for reactive hypo

If some of you get a chance will you plz post what you eat in a day and how often? What kind of protein bars do you eat? Any suggestions on how to work-clean house-go to Walmart- and remember to eat every hour? I am better but not back at work- not sure how I'm going to do that anymore. I am eating protein/veggies only-no carbs-sure is blah. If I have more than 5 or so carbs I shoot real high then bottom out and have a really bad next day. Thanks for the input.

Clia

What can I do!! NEED HELP

Hi I read the whole page,(all the blogs) And it's like if I would have wrote it my self with all the symptoms, I NEED HELP!! I have two kids NEED TO CONTINUE WITH MY LIFE. I have vitamin D deficency, anemic, low low ferritin, and Lost of body pain and fatigue. I want to get started on a low carb diet, Any low carb you suggest?? and how can I cope with the Horrible sugar craving?? I need to feel better,, I can't stop my life two little ones depend on me.

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