Peg

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About Peg

  • Rank
    Senior Member
  • Birthday 02/16/1961

Profile Information

  • Gender
    Female

Information

  • Surgeon
    Dr. Vallina
  • Height (ft-in)
    5-08
  • Start Weight
    287
  • Current Weight
    138
  • Goal Weight
    150
  • Surgery Date
    11/30/2009
  1. Same with me, I wasn't diabetic pre-RNY surgery and never had blood sugar issues before. It's true, very little is known about this condition; my surgeon had never had a case and he's done hundreds of RNY's over the past 7-10 years. Most of what I know, I researched on my own; some of the doctor's I've gone to are amazed when I walk in with my binder full of research. My Endo at University of Chicago said I probably know more about this condition than most Endo's and bariatric surgeons. I just hope they figure out a way to prevent this in future RNY patients or come up with a better treatment for the unlucky few who get the severe form of this complication.
  2. BugdocMom, Hang in there! My Endo warned it could take several months for the pancreatic beta cells to calm down and stop mass producing insulin. I was told It's very likely I'll need to keep using the injections and other meds for a while. If it doesn't work or gets worse the pancreas is the next step. Hopefully your little beta cells are just doing a little final rebellion. All we can do is take it a day at a time; good luck, keep us posted on your progress. You're a step ahead of me in this nightmare; hope we both find a happy ending!!!!
  3. PaulaRC - you definitely need to see your doctor right away! This can be life threatening. I would also get a referral to an endocrinologist familiar with post gastric bypass hypoglycemia; they're usually specialists at university hospitals. I too had no issues with dumping in the beginning and was one of my surgeons "success stories". This problem usually starts showing up between 2-4 years post-op. About 3 years out I started having episodes of sweating, shaking, dizziness, followed by major fatigue. Then I started noticing weird things like I must have gotten up during the night. drawers and closets were dumped out, pill bottles spilled on the floor, food wrappers in my bed... scary stuff! I had no memory of doing these things; turns out I was having frequent blackout episodes, mostly during the night where I wander around the house and do things, talk to people or eat with no memory of doing it. I didn't realize how bad my issue was until they put me on a 7 day continuous glucose monitor and found out my blood sugar is below 55 about 31 percent of the time and was going into the low 20's; often during the night when I was sleeping. That was last June and it's gone down hill since then. Be very careful about what you eat; carbs and sugars, even small amounts can trigger episodes; alcohol is also a trigger. Always carry a glucose meter, glucose tabs or hard candy in case you're out of the house and don't have access to juice. Always check your blood sugar before driving; I've actually had a few scary episodes where I drove for several miles past my destination and don't remember how I got there. My Endo told me I shouldn't be driving at all. I was prescribed a Glucagon Emergency Kit; it's an injection I carry with me in case I lose consciousness. On a positive note; there are several medications they can prescribe and most people respond well to the drugs and/or diet modifications. Good luck; I hope you are one of the folks who can shut this down with minimal intervention.
  4. Thanks for all the positive messages. They don't seem to have a lot of data to go on, but the current theory is the bypassed portion of the small intestine causes a chemical change in the digestive system for some people. This causes the insulin producing cells in the pancreas to basically go into hyperdrive mass producing insulin and causing dangerously low blood sugar levels. They used to remove most or all of the pancreas to treat; now they think restoring pyloric function and reconnecting the intestine/duodenal continuity has a higher success rate.
  5. This has been one of the toughest decisions, but my hypoglycemia has become life threatening; I no longer have a choice. I'm having my RNY gastric bypass taken down on April 14th; they're going to attempt to convert to a sleeve, if possible. I am so afraid of gaining back the weight; I'm the one insisting on the sleeve. I had an open initial surgery and had to have a second surgery due to severe adhesions; so the sleeve is questionable. I already know this will be an open surgery and was told it will be very complicated. I started noticing what I thought was "dumping" symptoms at around 3 years out; I never had many problems with dumping, so I thought it strange. Several months later I mentioned it at an appointment with my NUT; she said it could be blood sugar related; sure enough; I got a glucose meter and found I was dropping into the 20's and 30's. That was about 18 months ago, since then I've seen all kinds of specialists, including a team of doctors at University of Chicago; they've done a complete work-up over the past 8 months and had every test they could think of; admitted me for 4 days of fasting and glucose tolerance tests. Their final conclusion is my pancreas is mass producing insulin as a reaction to anything I eat; reversal of the gastric bypass is my best option. If that doesn't work; they'll need to look at removing most or all of my pancreas. I currently inject myself 4 times a day with Octreotide/Sandostatin and take Acarbose with meals. My blood sugar tanks no matter what I eat; a piece of chicken can do it. I get down in the 30's every day, 20's every few days and recently started going down as low as 18. Doctor's aren't quite sure why; but it's also effected my potassium; I had a normal level and less than 2 day later was rushed to the hospital by paramedics when all my muscles contracted and wouldn't stop. My potassium was 2.1 and my blood sugar was 21. I often have periods where I become confused, do or say things I don't remember or become unresponsive; I was told it's only a matter of time before I have a seizure, go into a coma or die. All these episodes leave me feeling tired and weak; I'm ready for this to go away and get back to being healthy. I don't want to scare anyone; I'm told this is a very, very, rare side effect of RNY; probably occurs in 1% - 3%; most can be controlled by avoiding carbs and sugars and/or meds; the extreme version I have happens in about .03% (why couldn't I be that lucky and win the lottery?). If they knew more about this possible complication when I had my surgery in 2009 and told me the odds; I still would have done the procedure. No regrets about that! I'm still having a hard time dealing with the fact I have to give up something that was so good to me.... at least for the first 3 years. Hoping the sleeve is a success and I can just maintain the weight I'm at right now. Sorry, know I'm rambling on, but if one other person reads this and realizes they are having issues too; don't just write it off as "dumping"; especially if you start noticing extreme symptoms of sweating, shaking, confusion, etc. Don't take any chances; pick up an inexpensive glucose meter and check your sugars; Walmart has a really good, low cost meter; you don't need a prescription. If your sugars are going below 55 or even worse into the 30's or 40's; talk to your doctor!
  6. Late Dumping Syndrome

    I'm just hoping this resolves on it's own; may be wishful thinking on my part, but the Endo say's it does happen on rare occasions. I've pretty much made up my mind there's no way I'm letting them reverse my gastric bypass. Despite what's going on right now; I am still glad I had the surgery; I am four years out and very happy with my weight loss... don't want to go back to the person I used to be. I have another appointment with the endo tomorrow to discuss next steps... we shall see.
  7. If you haven't already; you should see an Endocrinologist, there's several diet modifications they can suggest and medications they can try to help regulate the blood sugar. They can also put you on a continuous monitor to measure your sugars around the clock over a period of time. Carbs can definitely be a trigger, but monitoring showed my sugars also tank dangerously low when I ate only protein or in the middle of the night, several hours after I've eaten anything. You definitely want to carry glucose tabs or hard candy in case you're out of the house and don't have access to juice; especially driving. I was also prescribed a Glucagon Emergency Kit; it's an injection I carry with me in case I lose consciousness. I've come very close getting down in the 20's the lowest I've measured is 21; so far I've been able to recognize when my sugar is too low and can get it back up with juice or glucose tabs, followed by a protein.
  8. Late Dumping Syndrome

    I've been seeing an endocrinologist at U of C for the past 3 months; he told me they're seeing hypoglycemia after bariatric surgery in over 10% of patients who had RNY or duodenal switch. Most cases aren't as extreme as mine and can be controlled with diet and/or meds. On the other hand, my bariatric surgeon said he's done hundreds of surgeries and I'm the first patient he's had with this issue. The doctors are definitely on different pages; the endo thinks I should have my gastric bypass reversed and the bariatric surgeon says absolutely not; my original surgery and subsequent surgery for adhesions both had to be performed as open surgeries; my organs were fused together, he had very hard time doing the bypass in the first place, trying to reverse the bypass would be nearly impossible. I know I have more adhesions, so any abdominal surgery at this point would be very complicated. The other option is removing part or all of my pancreas (pancreatectomy). I don't want any surgery at all! I'm reading that some people go through the reversal surgery and it doesn't help; they end up having the pancreatectomy. At least 15% of the pancreas must be left to produce its enzymes for digestion; if the entire pancreas is removed you become a severe diabetic because you no longer produce insulin. I've had some very scary episodes with blood sugars as low as 21; I get down to the 30's and 40's every day, sometimes multiple times a day. In the meantime, the endo's been trying different meds to raise blood sugars I've been on Prednisone for almost 3 months; over the same time period I hurt my back and hip and got 4 cortisone injections in my spine and hip over a 7 week period; the steroids helped raise the blood sugars, but it was only a short-term solution. For about 3 weeks I've been giving myself injections of Octreotide at night; but still having very low blood sugars every day.
  9. I'm having the same issues! Started last November when I was 3 years out; began with what I thought was "dumping"; I was never a dumper, but started having episodes of sweating, shaking, dizziness, followed by major fatigue. Then I started noticing weird things like I must have gotten up during the night. drawers and closets were dumped out, pill bottles spilled on the floor, food wrappers in my bed... scary stuff! I have no memory of doing these things; turns out I was having frequent blackout episodes, mostly during the night where I wander around the house and do things, talk to people or eat with no memory of doing it. Was referred to an Endocrinologist, had lots of tests, did low carb diet modifications, tried Acarbose; nothing seemed to work. I would have blood sugar crashes as low as 25; crashes were happening multiple times a day, didn't matter what I ate; pure protein could set me off. They put me on a 7 day continuous glucose monitor and found out my blood sugar is below 55 about 31 percent of the time; mainly during the night when I'm sleeping. My lows were below what the monitor would pick up. At that point they decided I needed to be referred to a specialist at a university hospital; went to that Dr... more test, more evaluations; he said my condition was very severe and life threatening. Normally they try a drug called Diazoxide, but I have a severe Sulfa drug allergy; so they wont try it. Next step was injections of Octreotide to suppress insulin production in the pancreas. I battled with the insurance company for several weeks and they would not cover this expensive drug for a diagnosis of post gastric bypass hypoglycemia. Back to square one. I went back to the endo 4 weeks later; I actually felt like my symptoms weren't as bad the past several weeks, but they did a random glucose test and my blood sugar that afternoon was 41; despite the fact I felt fine. He said my condition has advanced to hypoglycemic unawareness and this is even more serious and life threatening. He said one of these days I could pass out, have a seizure, go into a coma or die. The specialist thinks the best solution is to either reverse my gastric bypass or remove at least half and possibly all of my pancreas. I totally don't know what to do at this point; I don't want to do either. He's trying me on a combo of Prednisone (steroid) and Norvasc (calcium channel blocker); both can have a side effect of raising blood sugar. He told me to file an appeal with my insurance company about the Octreotide and get an attorney if needed; he will support his decision this is the only possible drug to help me. I will appeal the insurance decision, but not sure what else to do!
  10. Late Dumping Syndrome

    I started having problems exactly 3 years post-op; started with episodes I called major "dumping"... shaky, sweaty, dizzy, heart pounding, weak, etc.; I had never really had dumping problems before and mentioned it to my NUT at the 3 year post-op visit; she said it sounded like a blood sugar problem. Got a meter and started checking my sugars; sure enough; I was getting readings as low as 25; most of the time in the low 40's about an hour or two after meals. This wasn't just happening after high carb meal; it would happen after mainly protein too. When I'm extremely low - bad things happen; I'm confused and I can have a black-outs of sorts where I wander around and do things or say things I don't remember; sometimes I'm told I can't even speak; everything comes out garbled. Also started noticing weird things in my bedroom when I wake up; things would be pulled out of drawers, closets; I've found pills dumped out on the floor and often find food wrappers in the bed... scary! Apparently I get up and wander around at night and don't have any idea what I'm doing. The past few months I started keeping food on my nightstand: protein bars, cheese sticks and life savers; it seems to have slowed down my wandering; in my low sugar state of mind I must know I need to eat something and go searching for it. After really low episodes I often feel tired and have bad headaches. Discussed with my doctor and he referred me to an Endocrinologist. The Endo ran more blood tests... Cortisol, A1C and had me keep more detailed blood glucose monitoring for a month; the Cortisol and A1C were normal and my monitoring showed lots of very low sugars; mainly after eating. I was in the hospital with a gallstone in January so they had a recent CT scan of my abdomen and nothing showed up on my pancreas. Endo suspected a condition being seen in more and more Gastric Bypass patients called: Islet Cell Hypertrophy or sometimes referred to as Nesidioblastosis it's a form of acquired hyperinsulinism where the pancreas starts over producing cells that create insulin. She put me on a drug called Acarbose that can slow the digestion of carbs in the body and told me to eat smaller, low carb meals with snacks every few hours; didn't help for me, but it seems to help a lot of other folks. Endo decided to put me on a 7 day continuous blood glucose monitor and had me keep a food diary of everything I ate along with the carb values to get a better view of my blood sugar levels and how they were reacting to food. Wow... that was an eye opener! I knew my sugars were low after eating, never knew they also tanked at night while I slept and pretty much stayed in the 30 - 45 range most of the night.... no wonder I wander. Final test showed during the 7 day period my blood sugar was below 55 more than 30% of the time... not good! There was one more drug they could try called Diazoxide; it slows down insulin production in the pancreas; turned out that wouldn't work I have severe sulfa allergies and it has a sulfa base. The Endo said the problem is beyond what she can treat and has now referred me to a specialist at the University of Chicago Medical Center. She said the next step is a Arterial Calcium Stimulation test... sort of like an angiogram where they go in through the groin up to the pancreas and inject a medicine into the veins and measure samples of how the pancreas reacts. This should confirm if the problem is Islet Cell Hypertrophy or determine if the problem is a insulin producing tumor "Insulinoma". Either way, she firmly believes surgery is probably the only way to resolve. For severe Islet Cell Hypertrophy they usually remove part or all of the pancreas; not sure yet what that entails; just setting up my consult with U of C right now. If you are having similar problems; get a referral to an endocrinologist for further evaluation. Also... I was trying to rebound some of these attacks with juice; but the Endo said I should only do that for really low blood sugars; otherwise I would likely have another low rebound in a few hours. She told me to have a combo of about 15-20 carbs and protein to level off my sugars; protein bars are good.
  11. Celebrate vitamins coupon code?

    This coupon code is still working for 10% off: BTV459
  12. Dawn, Sorry for the delay; I haven't been on for a long time. It took several months for my ulcer to heal; I had poor blood supply to the area, but it did finally resolve. I still take Prilosec every day to prevent another one. Turned out my severe abdominal pain was not all ulcer related; ended up having more surgery for adhesions in Sept when I couldn't keep anything down. Good luck; ...

  13. Hi Peg, I have been reading some of your threads regarding your ulcer issues. I am 3 months out G-bypass and have an ulcer. Going thru major pain meds they gave me zegrid and carafate are not helping. I have been on them for 4 weeks. and eating only liquids. Have a scope this friday the 25 to see what it looks like in there. i know the ulcer isn't any better. But how are you. it has been some time since your hospital stay and i wondered how your feeling. Dawn

  14. 2 new pic's from yesterday

    You are doing an awesome job; you look great!
  15. Morningstar

    If you can find them, the Amylu Chicken Burgers are awesome. The label reads: Sweet Caramelized Onion Chicken Burgers with Red Bell Peppers and Gouda Cheese. They have 22 grams of protein. My Costco carries them a few times a year; I always stock up. Serving Size 1 patty (112g) Amount Per Serving Calories from Fat 50 Calories 140 Total Fat 6.5g Saturated Fat 2.5g Polyunsaturated Fat 0g Monounsaturated Fat 0g Trans Fat 0g Cholesterol 70mg Sodium 560mg Potassium 0mg Total Carbohydrate 3g Dietary Fiber 0g Sugars 2g Other Carbohydrate 0g Protein 22g