Frustrated with doctors!

Okay, I'm having lots of problems with hypoglycemia. Saturday night, 1 hour after eating, I felt really dizzy. Checked my blood sugar and it was 37! I'd had hamburger, and corn. I've been having increasing problems with low blood sugars. So I called my PCP yesterday. I told the nurse I wasn't taking anything for blood sugar. She called back later and said I was supposed to cut the glucophage in half. That would be a neat trick since I haven't taken it in about 2 months! So they were going to talk to the doc again and call back. Now, if they had actually looked at my chart, they should have been able to tell I wasn't taking anything since I was just in there 2 weeks ago. No call back yesterday. Finally at 10AM this morning they called. She said my cell phone must be disconnected cuz they tried calling but it kept saying it was no longer in service. There was a reason I gave them the area code with the number. My cell number is from Ames which is long distance for Des Moines. Grrr! This is the same clinic that couldn't figure out that they needed to dial 1 to fax something to the surgeon's office. Anyway, she says, cut the glucophage in half! What part of "I'M NOT TAKING THE GLUCOPHAGE" do you not understand???? So then she tells me I'm supposed to come in and talk to the RN who works with diabetics so she can tell me how to eat. I saw a dietician and that was totally worthless. I've been eating like this for 2 1/2 years. I think I know how to eat! I declined that visit. So I called my surgeon's office. He still hasn't called me back. Grrrr! What's strange about this is that I haven't changed how or what I eat. Now suddening I'm bottoming out. It's pretty scary when it's that low. It hit me very quickly. Okay, I feel better now since I've vented. Lyn

I totally understand why you are frustrated, I'd probally would have chewed somebody out bigtime, if I was in your situation. Even though I work in the medical field, I have ageneral distrust of most practioners and have only met one nutritionist in my life who actually made any sense when it came to eating for your metabolism vs following the food pyramid (I'm sure she was a rebel among them at NUT school). Anyway, I also developed hypoglycemia after surgery. I discovered that by eating 5-6 high protein meals a day heped tremendously. At first I timed all my meals, wrote down eveything I ate and recorded my blood sugar levels several times during the day. Now I know when I need to eat, what to eat and I always carry an emergecy protein bar or cheese crackers in my purse. The first sign of any dizziness and I'm munching away. It gets easier to eat that way, the further out you get. In the beginning it feels like a chore, but then it becomes apart of your life. Jane

Hypogylcemia is common with us after WLS. I have it. My doctor has me eating 5-6 meals a day. It seems to help. They are small meals but it allows my blood levels to be more consistant. Darlene

Hi Jane, The frustrating thing is that I DO eat 5-6 small meals a day. I eat something about every 2-3 hours. It hasn't helped. I'm almost 3 years out and am used to eating like this and have been eating like this since I could have solid food. This is something that has become an increasing problem. I eat the a food one day and no problem. The next day it is a problem. And there really isn't any pattern to it. It might be protein that does it or it might be a carb. I fully expected oatmeal to do it yesterday but my sugar was steady as a rock. Go figure. And my surgeon still hasn't called me back. GRRRR

I passed out and wrecked my car in August. My sugar was very,very low. They told me in the e.R. To eat sugar. I can't!!!!! Just a pinch of sugar makes me want to die. They don't understand. I can't do sugar.....So I am stuck. Been to 3 doctors and they all say add sugar. Sooooooooooo I just pass out. Or feel real bad..............God bless amy

Lyn, Corn is high in natural sugars. I'd suspect that your body overreacted to the corn. I know you ate it with protein which should lessen the reaction. Best to keep away from the high glycemic index things for now. Sorry the doctors are so confused!! I feel your frustration. Be well, Kathy

Lyn, I understand your frustration. I told the nurse that I was having hypoglycemic episodes and she got disgusted with me. She said it wouldn't happen if I wasn't eating the wrong foods. She told me it was latent dumping syndrome. I disagree, however I don't think the doctors know what causes it so they act like it's all our fault. I have found that being over two years out that weird things make me sick and it is not at all consistent. A cookie and I don't dump today, tomorrow I'll be sick as a dog. A bowl of low sugar oatmeal may make me sick, maybe not. It's really annoying for me and for my family. I have to be soooo careful when we dine out with friends so that I don't embarass myself. I have to stick with steak and brocolli. I didn't have these problems at 6 months post op! Sorry to vent, hopefully it makes you feel better to know you're not alone. Maybe someone will start to study long term post ops and figure out what this is. Do I have to live my life on a low cal, low fat version of the Atkins diet? That's kind of the message I'm getting from my NUT. Amy

Just a thought. You have been eating this way for this long and are still having hyopglycemia episodes. Maybe meeting w/ a dietician is a good idea, and trying following what they recommend even if it is different from what you are doing now, or different from the common wisdom of wls ideas(which all of the programs seem to have differing ideas of what a wls siet should actually consist of, so I follow my own program) . something isn't working right for you and you need some help here, but you also have to take ownership. if your dr isn't calling you, then maybe it is time to call a differnt dr. Have you been under the care of an endocrinologist?

Hey Lyn ... I feel your frustration. I too have been battling with hypoglycemia. I had a grand mal seizure a few months ago and the rescue squad measured my blood sugar at 23. The rest of my story is toward the end of the post, but essentially, my next step is seeing an endocrinologist in three weeks .... I know this post will be kind of long, but I am basically copying and pasting a conversation from another board (a few articles, links, and experiences), hopefully it will give you some info. Good luck and keep us posted ... Karyn _________________________________________________________________ #133724 From: "Eileen" Date: Wed Nov 1, 2006 10:17 pm Subject: noninsulinoma pancreatogenous hypoglycemia I have not posted in a long time. I am 4.5 years out from an rny and bounce up and down from 140-160 which is fine. I started at 307. This is the best thing I have ever done for myself. Problem-I am so severely hypoglycemic. I have to eat every 1.5-3 hours and it is driving me insane. After an hour of eating my vision begins to blur and I get a headache. My sugar is still "normal" at 90. After 2, I am so anxious and have lost and my speech capability and begin to slur, can't find words, and I shake uncontrollably...today....80 I had a glucose tolerance test a month ago, you know, drinking the evil sugar.....I am still a dumper so I do not know how valid this is. Fasting Glucose 70.... 1 hour 92 and 2 hours glucose 30. Should have been 1 hour 170ish and 2 hour 100ish. My endocrinologist freaked. Based on what she told me, I am freaked too. She doesn't know, but thinks it may be noninsulinoma pancreatogenous hypoglycemia with enlarged pancriatic cells. For those that may know, enlarged islet of Langerhans. Meaning, my cells within my pancrease are enlarged and my pancreas is enlarged and therefore producing insulin at a very high rate. This is extremely rare, but, it has been attributed to gastric bypass patients. If you are having these problems or know anything, please let me know. Thanks. _____________________________ #133731 From: "indy Date: Wed Nov 1, 2006 10:49 pm Subject: RE: noninsulinoma pancreatogenous hypoglycemia Hi The following is from a post I did about a month ago. I hope it helps you some. The calcium-stim test is the only way they can truly tell if it is hyperinsulinemic hypoglycemia with nesidioblastosis or normal hypoglycemia. Even after this surgery I still deal with hypoglycemia (over the weekend I snacked on some Sweet Tarts, yes I am a bad girl, and my blood sugar dropped to 52. But now things are much better then before. The calcium stimulation test is the most important test you could have now though, it will tell the doctor if this is the issue and exactly which part of the pancreas is the culprit. _____________________________ (from October 2, 2006 post) I had severe issues with hypoglycemia for the past 2 years (I am 3 years post op). Chances are you are dealing with normal hypoglycemia however in my case I ended up going through numerous tests in Hawaii before being sent to the Mayo Clinic for what ended up surgery for hyperinsulinemic hypoglycemia with nesidioblastosis. Basically this was due to the fact my pancreas kept thinking I was still 307 pounds and was secreting enough insulin for that large of a body. To deal with it the doctor actually removed approximately 2/3 of my pancreas and since then I have 1-2 hypoglycemic attacks a month in comparison to the 1-2 a day before. The Mayo Clinic has been doing a lot of research on this and are discovering that it is a much more common problem then originally thought. To diagnose it they had to do a selective arterial calcium-stimulation test (basically an angiogram) and rule out any insulinoma. My hypoglycemia was getting worse and worse (even precipitated by teriyaki beef jerky once). Chances are you are dealing with reactive hypoglycemia but I would discuss this possibility with your doctor to rule it out. indy _____________________________ #133738 From: Steve Date: Thu Nov 2, 2006 7:30 am Subject: RE: noninsulinoma pancreatogenous hypoglycemia nesidioblastosis would have been my first guess for a RNY postie. Sandy sent this to the list earlier this year. See first paragraph: Low Blood Glucose Levels May Complicate Gastric Bypass Surgery, Study Shows BOSTON--October 12, 2005--Physicians monitoring patients who have undergone gastric bypass surgery should be on the alert for a new, potentially dangerous hypoglycemia (low blood glucose) complication that, while rare, may require quick treatment, according to a new study by collaborating researchers at Joslin Diabetes Center, Beth Israel Deaconess Medical Center (BIDMC), and Brigham and Women's Hospital (BWH). The paper, recently published online by the journal Diabetologia and scheduled to be published in the journal's November print edition, follows on the heels of a Mayo Clinic report on six similar case studies published in July in the New England Journal of Medicine. About 160,000 people undergo gastric bypass surgery every year. The study details the history of three patients who did not have diabetes, who suffered such severe hypoglycemia following meals that they became confused and sometimes blacked out, in two cases causing automobile collisions. The immediate cause of hypoglycemia was exceptionally high levels of insulin following meals. All three patients in the collaborative study failed to respond to medication, and ultimately required partial or complete removal of the pancreas, the major source of insulin, to prevent dangerous declines in blood glucose. "Severe hypoglycemia is a complication of gastric bypass surgery, and should be considered if the patient has symptoms such as confusion, lightheadedness rapid heart rate, shaking, sweating, excessive hunger, bad headaches in the morning or bad nightmares," says Mary-Elizabeth Patti, M.D., Investigator in Joslin's Research Section on Cellular and Molecular Physiology and Assistant Professor of Medicine at Harvard Medical School. "If these symptoms don't respond to simple changes in diet, such as restricting intake of simple carbohydrates, patients should be evaluated hormonally, quickly," she adds. Dr. Patti and Allison B. Goldfine, M.D., also an Investigator at Joslin and Assistant Professor of Medicine at Harvard Medical School, were co-investigators of the study. The study reported on three patients - a woman in her 20s, another in her 60s and a man in his 40s. All three lost significant amounts of weight through gastric bypass surgery, putting them in the normal Body Mass Index (BMI) range. Each, however, developed postprandial hypoglycemia (low blood glucose after meals) that failed to respond to dietary or medical intervention. As a result, all patients required removal of part or all of the pancreas. In all three cases, it was found that the insulin-producing islet cells in their pancreases had proliferated abnormally. A potential cause of this severe hypoglycemia in these patients is "dumping syndrome," a constellation of symptoms including palpitations, lightheadedness, abdominal cramping and diarrhea, explains Dr. Patti. Dumping syndrome occurs when the small intestine fills too quickly with undigested food from the stomach, as can happen following gastric bypass surgery. But the failure to respond to dietary and medical therapy, and the conditions worsening over time, suggested that additional pathology was needed to explain the symptoms' severity, Dr. Patti adds. "The magnitude of the problem was way beyond what doctors typically call dumping syndrome," she says. Other causes of postprandial hypoglycemia can include overactive islet cells sometimes caused by excess numbers of cells, a tumor in the pancreas that produces too much insulin or familial hyperinsulinism (hereditary production of too much insulin), which in severe cases can necessitate removal of the pancreas. In patients following bariatric surgery, additional mechanisms may contribute to overproduction of insulin. "First, insulin sensitivity (responsiveness to insulin) improves after weight loss of any kind, and can be quite significant after successful gastric surgery," says Dr. Patti. "Second, weight gain and obesity are associated with increased numbers of insulin producing cells in the pancreas, and so some patients may not reverse this process normally, leaving them with inappropriately high numbers of beta cells." Finally, after gastric bypass surgery, GLP1 (glucagon-like peptide 1) and other hormones are secreted in abnormal patterns in response to food intake, since the intestinal tract has been altered. High levels of GLP1 may stimulate insulin secretion further and cause increased numbers of insulin-producing cells. "In our patients, the fact that the post-operative onset of hyperinsulinemia was not immediate suggests that active expansion of the beta cell mass contributed to the condition," Dr. Patti adds. Other researchers participating in the study included S. Bonner-Weir, Ph.D., of Joslin; E.C. Mun, M.D., J.J. Holst, M.D., J. Goldsmith, M.D., D.W. Hanto, M.D., Ph.D., M. Callery, M.D., of Beth Israel Deaconess Medical Center. Collaborating investigators from the Brigham and Women's Hospital included R Arky, M.D., who also is a Joslin Overseer, G.T. McMahon, M.D., M.M.Sc., A. Bitton, M.D., and V. Nose, M.D. All participants are on faculty at the Harvard Medical School. Funding for the study was provided by the National Institutes of Health, the Julie Henry Fund of BIDMC and the General Clinical Research Centers. Besides helping afflicted gastric bypass patients, the research has hopeful implications for treating people with diabetes, says Dr. Patti. The gastric bypass patients have what many of those with diabetes lack - ample insulin - and perhaps an understanding of this phenomenon could be harnessed to help those with diabetes. "If we can understand what processes are responsible for too much insulin production and too many islet cells in these patients, we may be able to apply this information to stimulate insulin production in patients with diabetes, who lack sufficient insulin," Dr. Patti says. _____________________________ Also: Nesidioblastosis and Standard of Care Edward E. Mason MD, Ph.D. The Summer 2005 IBSR Newsletter article, "Obesity Surgery, Insulin, GLP-1 and Cancer - A Literature Review", explained the benefits from bypass operations with regard to reducing plasma insulin stimulation of cancer growth and preventing or curing type-2 diabetes mellitus (T2DM) by stimulating the secretion of GLP-1 from the distal ileum. Now we are confronted with two reports of life saving pancreatectomy in patients with nesidioblastosis following Roux-en-Y gastric bypass (RYGB). Service et al found one patient had insulinomas and five had a diffuse overgrowth of beta cells.1 Patti et al reported three similar patients.2 One had a reversal of the RYGB without relief before the pancreatectomy. What may be a rare complication can become too frequent in absolute numbers when treating an epidemic with the projected 200,000 RYGB operations for 2006. Patients need effective and life saving treatment, but continued follow-up for life has become even more important. In 1999 I suggested further study of transposition of the distal ileum to a juxta-duodenal position so the ileum would be exposed to glucose more frequently to possibly prevent or cure T2DM, without the complications of bypass operations.3 The operation should not be used in humans until we learn how to avoid hypoglycemia from excessive insulin secretion. Patients must know what is being done and the possible consequences.4 Nesidioblastosis should be explained as a possible but rare result. If it occurs it will probably require another major operation. The result of that second operation could be permanent insulin dependent diabetes if the entire pancreas is removed or failure to control the attacks of hypoglycemia if some pancreas is left in place. However, there may be the choice of a restriction operation without bypass. For the majority of patients in 2006, the choice will be either RYGB (bypass) or no operation at all. Restriction operations should be offered and may, at some time, be recommended as the operation of choice.5 Surgeons need to prepare for the time when there may be sufficient reason for no longer using bypass operations. Encourage your colleagues to join a registry that is attempting to obtain lifelong information about outcome. Together we can solve whatever problems arise and improve the outcome for these patients. One variable that summarizes the most serious complications of both obesity, and the surgical treatment of obesity, is length of life. MacDonald et al observed a marked survival advantage for patients with diabetes following RYGB.6 No difference in survival was found following bypass or restriction operations performed from 1986 to 1999 in a survival analysis by the IBSR.7 We found a mortality rate of 3.45% (654/18,972) for patients followed an average of 8.3 years. Here are some additional suggestions for patient education. The normal stomach can hold over three pints of food and liquid. As digestion begins, the pyloric muscle at the lower end of the stomach controls emptying. This muscle is regulated by osmoreceptors in the duodenum that keep the mixture of food, bile and digestive juices at the same concentration as body fluids. However, if glucose reaches the distal ileum, the ileal brake hormone (GLP-1), is secreted into the blood stream. GLP-1 has two ways of slowing the movement of nutrients through the normal digestive tract. 1) It acts upon the pyloric muscle to decrease gastric emptying and 2) it slows intestinal peristalsis. GLP-1 also stimulates beta cells in the pancreas to grow and to produce more insulin. To prevent prolonged action of GLP-1 the circulating enzyme, dipeptidyl peptidase-4, inactivates GLP-1. Gastric bypass causes weight reduction through interference with all of this elaborate, automated control of storage in the stomach, metering of food entering the intestine, and regulation of the rate of movement of the digesting food stream through some 23 feet of small bowel. RYGB prevents or cures T2DM but it also interferes with the normal regulation of insulin secretion. Stimulation of GLP-1 release by exposing the distal small bowel to glucose prevents T2DM, but continual stimulation of the pancreas may result in overgrowth of insulin producing cells and, in some patients, the secretion of insulin becomes excessive and out of control. This causes blood sugar levels to be too low for survival. The only treatment then becomes a major operation to remove enough of the pancreas to rid the patient of excessive insulin. The use of a one time major operation to regulate the concentration of sugar in the blood is inferior to the continually active and elaborate control mechanisms that normally regulate blood sugar levels. What should the response of surgeons performing bypass operations for obesity be to these reports? A surgeon cannot solve a patient's weight problem without some participation by the patient and change in that patient's environment and life style. The informed patient must decide what is best for their remaining life. Unfortunately, we do not know the lifelong frequency of some complications from these operations. It is a difficult task explaining complex potential consequences and surgeons must continue to gather information from longer follow-up. If necessary, surgeons need to be prepared to make changes if it becomes apparent that bypass operations produce more complications, than cures. RYGB causes weight loss but also loss of many important body regulatory systems that keep a normal person healthy. Lifelong medical care following gastric bypass is expensive and difficult to obtain, but it is necessary. In the meantime, help each patient find the best treatment for what we expect to be a long and more pleasant life following surgical treatment for obesity. 1. Service GJ, Thompson GB, Service J, Andrews JC, Collazo-Clavell ML, Lloyd R. Hyperinsulinemic hypoglycemia with nesidioblastosis after gastric-bypass surgery. NEJM 353, 249-254, 2005. 2. Patti ME, McMahon G, Mun EC, Bitton A, Holst JJ, Goldsmith J, Hanto DW, Callery M, Arky R, Nose V, Bonner-Weir S, Goldfine AB. Severe hypoglycemia post-gastric bypass requiring partial pancreatectomy: evidence for inappropriate insulin secretion and pancreatic islet hyperplasia. Diabetologia 48: 2236-2240, Epub Sep 30, 2005 3. Mason EE. Ileal transposition and enteroglucagon/GLP-1 in obesity (and diabetic?) surgery: Review of the Literature. Obesity Surgery 9: 223-228, 1999. 4. Mason EE, Hesson WW. Informed consent for obesity surgery. Obesity Surgery 8: 419-428, 1998. 5. Mason EE Development and future of gastroplasties for morbid obesity. Archives of Surgery. 138: 361-366, 2003. 6. MacDonald KG, Long DS, Swanson MD, et al. The gastric bypass operation reduces the progression and mortality of non-insulin dependent diabetes mellitus. J Gastrointestinal Surgery 1: 213-230, 1997. 7. Zhang W, Mason EE, Renquist KE, Zimmerman B, IBSR Contributors. Factors Influencing Survival Following Surgical Treatment of Obesity. Obesity Surgery 15: 43-50, 2005. From: http://www.surgery.uiowa.edu/ibsr/wwinter05.htm _____________________________ And, other articles: The following can be found at http://www.medpagetoday.com/tbprint.cfm?tbid99 Rare Complication Leaves [a tiny tiny tiny minority of] Gastric Bypass Patients Almost Disabled (Bracketed text added by Anita, *****ally hates misleading, alarmist headlines that exaggerate the facts) By Michael Smith, MedPage Today Staff Writer Reviewed by Robert Jasmer, MD; Assistant Professor of Medicine, University of California, San Francisco Source News Article: Boston Globe, MSNBC, Washington Post (Text of article follows below) _____________________________ MedPage Today [Physician's] Action Points Inform patients contemplating a weight-reduction operation that, although it is a rare complication, nesidioblastosis is more frequent among patients who have had Roux-en-Y gastric bypass than in the general population. Note also that while the cause of the nesidioblastosis remains unclear, a partial removal of the pancreas appears to resolve the condition. Advise interested patients that the so-called "dumping syndrome," whose symptoms include flushing, dizziness, profuse sweating, and weakness, is commonly seen in gastric bypass patients; however, central nervous system glucose deficiency is not part of the dumping syndrome. _____________________________ Review ROCHESTER, Minn., July 21-A rare complication of gastric bypass surgery leaves its victims virtually disabled, Mayo Clinic researchers here reported today. But others said the complication, called nesidioblastosis, a hyperfunction of insulin-producing beta cells, may also point the way to new treatments for diabetes. The complication leads to a potentially life-threatening deficiency of sucrose in the central nervous system, says Fred Service, M.D., a Mayo endocrinologist and colleagues reported in the July 21 issue of the New England Journal of Medicine. They described six patients who were referred to Mayo between 2000 and 2004 because of severe neurological symptoms -- including confusion and loss of consciousness -- after eating. The symptoms were so severe, Dr. Service said in an interview, that patients couldn't drive or work, and "had to be babysat" for fear they could have a potentially deadly episode. The diagnosis was hypoglycemia, caused by excess insulin production, leading to a severe deficiency of glucose in the central nervous system (i.e., neuroglycopenia). One patient had insulin-producing pancreatic tumors that were surgically removed, but the rest had enlarged and overactive islets without cancer. The mean size was significantly larger than in obese controls (214 micrometers versus 151, p=0.001). When the first patient was referred, the researchers considered the Roux-en-Y gastric bypass to be coincidental, especially because the patient also had insulin-producing pancreatic tumors. But "subsequent experience...led us to raise the possibility of a link between the islet hyperfunction and the bypass surgery," Dr. Service and colleagues wrote. Over the same time period, nine people who had not had gastric bypass surgery were shown to have nesidioblastosis at the Mayo Clinic, meaning that the gastric bypass patients formed 40% of the total caseload. However, only about a tenth of 1% of the U.S. population has had a gastric bypass. The treatment was partial removal of the pancreas, Dr. Service said, which appeared to ameliorate the problem in all but one of the patients. That patient had a recurrence of symptoms, possibly because not enough of his pancreas was removed. The cause of the nesidioblastosis is less clear, but it seems "possible that beta-trophic factors may be brought into play after bypass surgery," causing the growth of beta cells and islets, excess insulin production, and post-meal hypoglycemia, the authors argued. "There is some scientific evidence that gut hormones could be mediating this," Dr. Service said. If that's the case, said University of Washington endocrinologist David *******s, M.D., in an accompanying editorial, it should spur research to identify the mediators "so that their physiological effects can be harnessed" against diabetes. "On the face of it, the paper is a report of a novel adverse consequence of gastric bypass surgery," Dr. *******s said in an interview, adding that the condition remains quite rare. "It's hardly a public health crisis." One of the effects of gastric bypass surgery is to cure type 2 diabetes, he said, and it may be that "the same physiology is melting away the diabetes most of the time and occasionally goes too far." He added, "I see this a hopeful finding that there's something about gastric bypass surgery that causes beta cells to regrow -- and rarely overgrow -- and if we can find that thing we have the potential of bottling it and using it treat diabetes." Dr. Service said he's not entirely comfortable with that view: "I think Dr. *******s may be looking at this through rose-colored glasses." If there is an upside to the finding, he said, it's that surgeons who perform Roux-en-Y surgery will be alerted to the possibility of nesidioblastosis in their patients. "The follow-up of (gastric bypass surgery) patients hasn't been as assiduous as it should have been," Dr. Service said. He said the symptoms should not be mistaken for those of the so-called "dumping syndrome" -- flushing, dizziness, profuse sweating, and weakness -- that is commonly seen in gastric bypass patients. Related articles: Bariatric Surgery, a Growth Market, Quadruples in Five Years Experience Counts for Laparoscopic Gastric Bypass Surgery -------------------------------------------------------------------------------- Disclaimer The information presented in this activity is that of the authors and does not necessarily represent the views of the University of Pennsylvania School of Medicine, MedPage Today, and the commercial supporter. Specific medicines discussed in this activity may not yet be approved by the FDA for the use as indicated by the writer or reviewer. Before prescribing any medication, we advise you to review the complete prescribing information, including indications, contraindications, warnings, precautions, and adverse effects. Specific patient care decisions are the responsibility of the healthcare professional caring for the patient. Please review our Terms of Use. © 2004-5 MedPage Today, LLC. All Rights Reserved. _____________________________ #133767 From: "Karyn" Date: Thu Nov 2, 2006 4:52 pm Subject: Re: noninsulinoma pancreatogenous hypoglycemia WOW ... you are a plethora of information, BUT ... I'm confused (not difficult for me these days). On August 20th, I had a grand mal siezure at the Renaissance Faire. The rescue squad measured my blood glucose level at 23 (I had eaten about an hour and a half prior). Now my docs think that this may not have been my first "episode" ... backtracking a bit to May, I was in Dallas at a nightclub that my company rented out, and they had to call paramedics because I was found on the bathroom floor, unconscious ... but I was starting to come to when they were taking my blood pressure, and they never did a blood glucose check (and they ended up leaving me there). I do recall having the same "light" feeling (as I did before my seizure in August) about 5-10 minutes prior to blacking out. A few weeks ago I did do the oral glucose tolerance test (ick)... my blood glucose level at 1 hour was 38 and after two hours was up to 64 (and my insulin level was high, but I don't know the exact number). Because of this, my doc had me do a "fasting" test ... basically had me wait at the lab until I felt dizzy or nauseated and then have them draw blood (but I never did feel dizzy or nauseated, well, not any more than I normally do anyway). He wanted my insulin and c-peptide levels checked. I just got the results, everything checked out fine. My thing is though ... I seem fine when I DON'T eat ... its when I do eat that I have problems. So, I guess my question is ... is the calcium-stim test the same as this fasting test? Thanks. Karyn / Chicago _____________________________ #133774 From: loko@... Date: Thu Nov 2, 2006 6:16 pm Subject: Re: Re: noninsulinoma pancreatogenous hypoglycemia Hi Karyn The calcium stimulation test is definitely different. Basically it is the same as an angiogram. It is done through the radiology department. They put a catheter into the artery on the side of your groin area and another into the vein. From there they "snake" the catheter up to the arteries connected to the pancreas, pancreatic, mesenteric and splenic. They then shoot a small bit of calcium in and start taking blood samples at specific intervals. When they hit the area of the pancreas that is putting out too much insulin they will start to see changes in the blood chemistry. The fasting test you had won't diagnose this at all. Like you I had no problem when not eating it was only when I ate. While I was at Mayo they did a combination of a fasting test with one after I ate my trigger foods. That was done before the catheterization since it was easiest. Your symptoms really sound like mine. I was lucky in that I never went unconcious, the doctors still can't believe that I didn't with as low as I would go. I am no doctor but I would definitely suggest you continue looking into this. Hypoglycemia at this level can begin to destroy brain cells. Your brain feeds on sugar and if all the extra insulin is feeding on sugar there is nothing left for your brain. While working with your doctor I would suggest you get a food diary started and a glucometer. From there write down what you eat and when, then when you start feeling the symptoms take your blood sugar and make a note of it (again with the time). As much as I hated this diagnosis not to mention such a radical surgery it has made a difference in my life. I have some of my energy back and I find I can lose weight a bit easier now. The "insulin monster" is under control so I feel like I can go from meal to meal without eating all the time. I hope this helps. indy