Treatment of Hyperinsulinemic Hypoglycemia After Gastric Bypass

Hello Everyone:

I haven't written in a while ... I have been struggling feeling seriously ill, from the various complications. That feel like one compounds the other 24x7x365. I have such regrets about having surgery on my stomach ... to fix one thing caused a host of other things to go dramatically wrong. The ongoing battle of severe, severe fatigue is taking it's toll. I can't explain to the people around me how sincerely ill I feel, the exhaustion is off the scale. Half the time I think I am going crazy ... from dealing with all the medical issues and the other half the time I think I am in a process of slowly dying. It appears to be a no win, I am feeling hopeless lately. Tired of the medical community they have no answers ... just plain sick and tired. This isn't the life path I ever wanted ... regrets, regrets ... jeanne

I not only can't talk right etc sometimes I don't process what others are saying. Last weekend I misunderstood almost everything that was said to me. This is so fustrating.

Will you see e I can e-mail Jade directly?

Thanks
Clia

I was not sure , what was hapenning to me...so by paying attention to my body ...I found you...
I have all of the symtons that many of you write....Since I have my surgery in 2004 Feb...I been in antidepressants, since march last year a Dr diagnosed me with ADD, taking generic,derral 60 mgs a day...I feel so week, my insurance coventry does not pay for me to see my Gastric bypass Dr...Please I need help...if someone can inform me ...I am in Fort Lauderdale my email ccmantilla@yahoo.com
I appreciated any ideas, how to deal with it, what Dr to see..Thanks

The spell worked in the prescribed time-frame but what really got me happy was
his proof of casting. I worked with countless others over the years. No one has
ever make my situation change . He really knows his stuff and he's ethical. He's simply the best. If you're going to have a spell cast of retrieving back your ex you might as well go to the best in the business freemercytemple@yahoo.com.

Don't know if everyone heard but the gastric bypass was said to help people with diabtes 2-------we all need to e-mail all the major news people and the talk shows to get them to tell all that the bypass does so people can make an informed decision. As we know, this is not a cure all. This was so upseting to me as I'm considering have a gastric tube (feeding) put in my rememnt part of stomach to be able to function semi normal(my mind).

Clia

Hello all,
I commented earlier up this page re seizures and sugar intake.
This is how I found this site in the first place. Unlike all of you I have not had gastric by pass surgery. I had cancer of the large bowel and had 2/3s of my stomach removed and about 6 to 8 foot of my bowel removed 30 years ago.
Have had seizures and was diagnosed with "possible dumping syndrome"
but having read most of your comments I believe we share something in common. First of all quite obviously radical gastric surgery.
The purpose of yours seems to be to turn highly effective digestion systems into very poor digestive systems. With mine I had no choice but can testify to the fact I have a very poor digestive system. I weigh between 7 and 1/2 and 8 stone.
I think one quite important thing we seem to share please correct me if I am wrong is that the muscle (valve) that controls the entry of food into the small intestine no longer operates for all of us.
Mine was removed with the bottom 2/3s of my stomach.
There is nothing really but a tube between my mouth and my small intestine,
Everything goes straight in. Without realising it I have controlled the seizures and rapid ingestion of sugars with my diet.
I eat a bung, block of solid food like bread or porridge before eating anything else, that is normal food.
This has only been recently been realised by myself and in no small part come from reading your comments.
To cut this long story short I am undergoing a barrage of tests;
EEG;MRI;Colonoscopy;Endoscopy;Blood tests and then referral to a dietician.
I will keep you informed. lucky for me I live in Scotland and this is all free probably the best thing the UK has ever invented that is the National Health Service.
No politics its just a fact I wouldnt be alive talking to you without it.
I feel incredible that you are all thinking about how to pay. Its bad enough what you have to deal with.
If i find out anything that may be of use, you will know about it here.
My personal theory is that they have underestiimated the importance of the control valve at the base of the stomach. This lets food in when the small intestine is ready for it I think and is not just some sort of pressure valve when your stomach is full. Think there must be some communication from the gut to brain to stomach that is quite critical for safe control otherwise everyone who just stuffed themselves with sugary food would be having seizures.
May whatever you believe in a God or Guardian Angels keep you strong.
Regards John

Hi gang,
Nice to meet you all. I am a doctor previously working in a hospital. I am 11yrs post RNYGB. At first I had mild symptoms of dumping but as the years have gone by it has evolved into life threatening hyperinsulin hypoglycemia. I had the worst episode ever last week and ended up in hospital...my sugars drop to less than 1(thats about 20 in your measurement) I live in canada. I have very little warning of a low...I suddenly get confused, unable to speak or move,shaky, emotional and huge feelings of anxiety. I have now got into the process of diagnosis so that I can find some treatment. This is debilitating...i do find that I get most lows right before my period so I have been medically put into menopause.This really impacts your life...I get very anxious in social situations, I am unable to do my work as I become so confused that my patients are in better shape than me. Anyway, thanks for being here, we need to get the word out because at the increasing rate of the RNY being performed we are going to see this issue become very common.
keep in touch...sam

So glad I am not the only one! Horrible palpitations and headaches and muscles that scream pain and the list goes on... I had a daughter almost two years ago and while pregnant my iron dropped so low I had pneumonia and my lung collapsed and I also needed iron infusions. My original doc was on vacation and the one covering told me I was tired and couldn't breathe cuz I "was pregnant. There is nothing wrong." I left his office and went to the ER where someone finally did a chest fray and some bloodwork on me. We almost died.
I have since then started with the spike and crash. I almost black out a lot sweat shake vomit & all the other fun stuff that goes along with it. I too have been brushed off by hematology an now I have no insurance so I am trying to deal with it all and work and take care of four daughters. It scares me that I can get down to a sugar level of 30 and still be up walking around, just feel crappy.
Anyone know what the complications and mortality rate are for this if it goes untreated? From what I have read it does not get any better :(
Best wishes and hugs to everyone.

Hello all, my name is David. I am a 28 year-old male from Philadelphia and I had RNY gastric bypass surgery in Dec 2007 (at the Barix Clinic in Langhorne, PA - my surgeon was Dr. Lyudmila Pupkova). My weight before surgery was a little over 300lbs, and now I am at 172. I have been completely fine and have had no complications whatsoever up until just this past summer of 2011.

It first started with extreme fatigue. Then hair loss. I'm talking HANDFULLS at a time were just falling out during every shower (it still is happening). I constantly felt breathless. My heart always felt like it was racing, and I was having frequent violent heart palpitations, especially after meals and at night. I went to ER after ER, and I was always discharged and told to "follow-up." Well I have no health insurance, so it makes things extremely difficult for me, as doctors and specialists charge outrageous prices when you have to pay out of pocket...and that's not even counting any further diagnostic testing which can run you into the hundreds, if not, thousands of dollars. So that was this past summer.

CONVINCED there was something wrong with me, I took it upon myself to go to a private lab and have a whole range of tests ordered on my blood (cbc, comprehensive metabolic panel, iron panel, cardiac enzymes, vitamin b and folate levels along with a bunch of other vitamin levels, thyroid, etc etc etc). Well everything came back fine except for a few things: My iron was EXTREMELY LOW (ferritin was <10 and sats were down below range) and my hemoglobin was slightly low at 12.9 (normal range for a male is 14-16). Yay for finding the problem!!!..... (not really)

So my next step at this point was hematology. I figured hey, I finally got to the bottom of it...I'm iron deficient! That's easy to fix, right? WRONG! I saw the hematologist in October, and here we are 5 months (and 6 iron infusions) later, and my number have just hit the normal range...and I'm STILL FEELING BAD. I get the impression from my hematologist that he just doesn't want to get too involved in my case, so he basically cleared me from his standpoint, and at my most recent appointment with him last week, he told me to follow-up with him in 3-4 months, but "everything looks good for now." Meanwhile I STILL FEEL LIKE CRAP! Obviously the iron deficiency was NOT the cause of why I feel like this.

On top of feeling so poorly, I have recently noticed that I CANNOT...and I say CAN NOTTTTTT tolerate meals. It seems that NO MATTER WHAT I EAT, it throws me through a loop. After I eat a meal, about 45 mins after eating, I start with the rapid POUNDING heartbeat with intermittent palpitations coupled with shortness of breath. It is so uncomfortable that I am fearful to eat lately because that is what triggers these feelings. And don't get my started with sugar. I've also had a few episodes that people have described on here: confusion, flushing, sweating, racing heartrate, very shakey, and feeling like I "NEED" sugar. During these episodes I immediately grab candy, juice, peanut butter, whatever sweet I can find...and about 20 or so minutes later I notice the symptoms subside and I feel EXTREMELY DRAINED. It is a HORRIBLE THING TO GO THROUGH.

Since getting those episodes, I have went to see a cardiologist who ran EKG's, did an echocardiogram, and I wore a holter monitor. All of which were normal. So that was good. It's not a cardiac issue.

Next, I went to see GI, who sent me for a CT of my abdomen and pelvis. On my CT from January, it showed a "1.5cm peripherally enhanced lobulated lesion in the gastric antrum" of my gastric remnant (my OLD stomach). The doctors all agree that it is PROBABLY an ulcer, although they are not sure. They told me that because of my particular gastric bypass anatomy, this "old" stomach is no longer accessible by mouth, so they are NOT able to do a traditional endoscopy procedure to evaluate this abnormality. So they decided to treat it AS IF it is an ulcer. So I've been taking 40mg Prilosec every morning for 4 weeks in hopes that the reduction in stomach acid will allow this supposed ulcer to heal. I just had the CT repeated yesterday and I go on 3/1 to meet with my GI doc for the results. He told me last month that if the abnormality is still there after this repeat CT, they basically need to take me to the operating room to do a laproscopic endoscopy into that "old stomach" to see exactly what's going on there.

During this whole GI ordeal, I went 2 weeks ago to see my primary doc. Every ER I've been to keeps telling me YOU NEED TO GO TO A PRIMARY DOCTOR SO HE CAN REFER YOU IN THE RIGHT DIRECTION. Well, I followed their advice, and lo and behold, the primary doc was a waste of my time and a waste of my $75. He tells me that from a medical standpoint (meaning all my bloodwork), everything that HE CAN SEE looks fine. He then brought up the point that "maybe it is all psychological" which I find highly offensive, and an absolute cowardly cop-out. It is NOT psychological that EVERYTIME I EAT A MEAL, I FEEL HORRIBLE! These are actual PHYSICAL symptoms...NOT "manifestations" (as he put it). I don't know how many different ways I can say this to these doctors to make them understand!!!! It is incredibly frustrating, and every time I go to a doctor with hopes of getting answers and getting to the bottom of this increasingly debilitating problem, I am brick-walled... EVERY TIME! The emergency departments won't admit me to get to the bottom of it (because they see "nothing acute going on") and the specialists they refer me to, well they all have this very conservative approach, making me wait months and months in between appointments, all the while I am SUFFERING DAY TO DAY with this. I just cannot take it anymore, and it has caused me to lose my job, my unemployment just ran out last month so I have ZERO income now, and I have NO MEDICAL INSURANCE.

I tried signing up for Blue Cross Personal Choice insurance a few weeks ago, because I am willing to pay out of pocket for it (they quoted me something like $147/month)... and you believe they DENIED ME? Why, because they are calling my gastric bypass procedure a "PRE-EXISTING CONDITION." This is the same exact insurance company who PAID for this procedure 4 years ago in the first place...now they are denying me coverage based upon it. How is that even legal???????

I am just so fed up with it all. I am only 28 years old, and never did I imagine my life would have taken a turn in such a scary and uncertain direction. All I want is to just feel like myself again. I went from running 4 miles per day (before August), to barely being able to get out of bed. I'm afraid to eat because of how it makes me feel, and I'm scared that something awful is going to happen to me. I feel like none of these doctors are taking the time to actually listen to me. They are all worried about "what kind of insurance do you have?" And when they see you are a charity case, they order AS FEW TESTS AS POSSIBLE TO SAVE THE HOSPITAL MONEY. The GI doctor I'm seeing isn't even an attending physician. Because of the "charity care" program the hospital has me on (Thomas Jefferson University Hospital in Philadelphia), they threw me to some "GI FELLOW" (basically a student), so that's who I've been seeing. I feel like with my condition, I deserve a REAL SPECIALIST, not some student!!!

If there were a doctor out there who can guarantee me a positive REVERSAL of this RNY procedure, I'd have it in a HEARTBEAT. I'd much rather be fat and HAPPY than thin and sickly. This is horrible. I pray every day to just feel better again. I want to live a long happy and healthy life, that's all. That's the reason I got this surgery in the first place. Now I'm left, completely ALONE, to deal with the aftermath of the surgery.

Anyone can feel free to email me at keys2thebeamer@aol.com. This is so hard for me to go through, and my heart really goes out to all of you who feel the same frustration I am feeling. I really wish I can have this procedure reversed. :(

please add this to your e-mail notification. I was listed as
cguyans@yahoo.com but that e-mail was comprised.

thanks
Clia

I got the gastric bypass to help me do better at my job and now with these terrible drops in blood sugar it may ruin my career. Im upset and depressed now over this entire thing. Im glad to see this is being told to people now before they have the surgery, cause if I had known this was any part a complication I would not have dont this at all.

I cant believe what I have just read. I have had 3 full blown seizures in the last ten years. The last one in August of last year. Was sent to a neuro surgeon on Friday there and am now booked in for an MRI (brain scan) and EEG?
The fact that I have told them that every time I can relate it back to sugar intake and I suspect this may have something to do with the fact I had the bottom 2/3's of my stomach removed and 6 foot of my bowel removed because of cancer 30 years ago. Dumping Syndrome is ticking a few of the right boxes now I think.

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

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.

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

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

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

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?

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?

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.

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