Discussions By Condition: I cannot get a diagnosis.

Please Help!!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: WolfRanch4
  • February 25, 2007
  • 01:38 AM

Hello. My name is Mary. I have posted here before, but I have not received any responses so I thought I would try again. I am a post Gastric Bypass patient. I had difficulties after surgery, but got past them. I had several health issues before my surgery, hoping losing weight would take care of them. I was hypoglycemic prior to my surgery, but Not a Diabetic. Well, about 1 year after my surgery the hypoglycemia became much worse. That was about a year and a half ago. I have been to some premiere doctors and still no diagnosis. I drop as low as below 10 and as high as 296. I have constant pain in my middle abdomen and back. I have been told my Lipase levels are high. Not as high as pancreatitis, but high non the less. I have been told by doctors I have "Chronic Conditions' and to go home and live what life I have left. I know that there is a condition called Nesidioblastosis, that they are finding after Gastric Bypass surgery. Even in people who have not had the surgery. If there is anyone who is experiencing this, or knows someone who is, please contact me. I am still trying to find a doctor to take care of it, but it would be nice to speak to someone who understands. Thank you for your time. Mary Sheppard.:confused:

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12 Replies:

  • Mary;I'm sorry to say, I have no experience with your condition. I just wanted to ask if you have explored ALL of your treatment options, meaning ALTERNATIVE medicine.Time and again, I am confronted with people who have been on their "last legs" with death sentences from their doctors, been dragged to an alternative practitioner, like a Naturopath, Accupunturist, Nutritionist, etc. and found welcome relief. "Alternative medicine" really should be the FIRST place we go, and doctors should be for acute illness, but it seems to be the other way around.I don't mean to go on a rant, but to sympathize with what you're going through and offer you a new place to look for help. Start with a Naturopath. He or she will look at your Whole Life, present and past. It's an exhaustive interview, but one that you'll wish your doctors had taken the time to do!!!It's been well established, for example, that hypoglycemia can be controlled and even resolved with eating!! How many doctors even mention that to their patients?? You need some detailed advice and a Naturopath and Nutritionist are good place to start. I hope that this gives you some hope and direction!! It can get better. Let's put it this way; the doctors have given up, but you don't have to!!
    jazzsister 4 Replies
    • February 25, 2007
    • 01:51 AM
    • 0
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  • Thank you for the reply. Unfortunately eating is my problem. My pancreas over responds to any food or drink, and my sugars go way up, then crash and go very low. There are many issues I have going on. I have been to different types of doctors and medical professionals. They all seem to not care. I am hoping my new doctor will be able to get me to someone who can help. I don't think there is a easy answer to what is happening to me. They know it is dangerous, and I go through a lot everyday. They pain never lets up, and no matter what my hypoglycemia is there. They have tried all different approaches from food and diet, to medicine. Nothing seems to work. I just hope they find out what is wrong before it is too late. Thank you again. Mary.
    Anonymous 42789 Replies
    • February 25, 2007
    • 02:01 AM
    • 0
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  • Ok, you sound as though you are putting all of your hope in the next doctor. My question is, what about ALTERNATIVE MEDICINE?? (Kudos to you for so very deftly avoiding that topic)All I'm saying is, EXPLORE that option. We are all taught to hold DR.s in such high esteem that we forget (or don't know) what they don't know. They are highly educated and intelligent people, but they have a PARTICULAR focus (which is actually a BIAS). There are certain areas (Eastern medicine, for example) that they are unwilling to look at, or can't look at because they aren't qualified. That doesn't mean that YOU can't have the best of BOTH WORLDS as far as your treatment goes. It pains me to hear that you're hoping the next doctor will come through and if he/she doesn't, then you're out of luck. BTW, did your doctors put you on a high protein, no-to-low carb diet, avoiding even natural sugars like fruit and honey? It can take up to several months for diet to work to normalize a severely affected body. Even whole grains can be an offender for you at this point. A NATUROPATH and nutritionist would be able to guide you through that process, if you're up to trying again. I hear you when you write that this is not your only problem. I can't even imagine what you deal with every day. I just want to give you the nudge to look in another direction for help IN ADDITION to where you're looking now.
    jazzsister 4 Replies
    • February 25, 2007
    • 04:38 AM
    • 0
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  • Do you have any abdominal complaints like excessive gas or floating stools? Chronic fatigue, unexplained weight gain or weight loss? If so, get your docs to check for Celiac Disease. I had some of your symptoms plus a host of others and ended up positive for Celiac's. Let me know! C
    Catherine2007 8 Replies
    • February 25, 2007
    • 04:09 PM
    • 0
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  • Thank you for all your replies. I appreciate all the responses from everyone. I know how hard it is to do something like this. Get on a chat room and talk about very personal and private things. It took me awhile to be comfortable with it. Catherine, thank you for the advice, I will talk with my doctor at my next appt. I have looked into it myself, but I have had a lot of problems getting anyone to listen or do anything for me. I hope everything is going well for you now. I think waiting is the hardest part. I wanted to respond to your comment (jazzsister), as to me turning a deaf ear to alternative medicine. First, I understand that you our going on information given by someone you don't know. I do appreciate anyone’s help or advice, as I said I know how hard it is to use these chat rooms and take a chance with information that is extremely private. However, I did not appreciate the way that you responded to me in regards to Alternative Medicine and what I have or have not tried. You really don’t know me, or what I have been through. I have been to so many types of Medical Professionals. I have tried many different suggestions and not just from doctors and not only for a few months. I want you to realize this did not just start yesterday. I have had health problems for many years. You assume this is the first time I have tried anything or that I am ignorant to what is happening to me or what my options are. I have been through ***l and back several times. People come to this chat room to talk, get some understanding, and maybe find a person who can help, not to be insulted by someone who really does not know you. You can not imagine the things I have been told to do by several Medical Professionals, including those who feel alternative medicine would be worth a try. I have considered all of their suggestions, and tried things that seemed right for me. You don’t have the right to judge someone on how they manage their health. Especially if you don’t have all the information on what they have been going through. I am sure you have good intentions and that your concern is to help people, but assuming you know what the person needs or has tried is not a way to handle it. I'm hoping, no matter who I go to or what their medical opinion is that they find out what is wrong, help me to deal with it, and that I can start living my life. I do thank you for your time, and I hope that things are well with you and that what ever path you decide to take is working. Mary Sheppard
    WolfRanch4 1 Replies
    • February 28, 2007
    • 07:49 PM
    • 0
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  • I think I may have your answer. I too had a Gastric Bypass. I was fine for about a year and then my sugar levels started to drop to dangerously low levels. It took me 1 1/2 years to finally get a diagnosis. My Endrocronologist got to the point where he just could not figure out what was wrong with me and he sent me to the Mayo Clinic. They had the answer. My symptoms would come on anywhere between 1 and 4 hours after eating. If I did not eat my glucose levels were normal or at times slightly high but withing 1-4 hours after eating my glucose levels would drop like a stone. When I ate my sugar would go up initially and then after peaking it would spiral down to dangerous levels. I would get the shakes, sweats, dizziness, mood changes, inability to concentrate, abdomial pain and vision problems. It was maddening. When people eat there sugar levels should rise not fall. The doctors here had no clue what was happening. Finally at the Mayo Clinic I got my answers. The problem was caused by the Gastric Bypass. They had just concluded a study and had just published their findings about a month before. I was the 6th person they had diagnosed with the problem. The problem I was having was that when I ate my pancreas would overproduce Insulin and the other Glucose lowering hormones. It did not know when to stop either. My Glucose levels would be down to 25 and my insulin levels which should have kicked off we and been zero were 12. The only thing I could do was eat to get the glucose levels up again but that was a short fix as it started the cycle of my sugar being pushed down again. It was an endless circle. At the point I had gone to the Mayo they had some sucess with the5 previous patients. They mapped their pancreas' to see where the extra insulin was being produced and then removed those parts of their pancreas. Some of them had specific sections that were over producing insulin and were easier to treat. They could focus the surgery on those specific sections. Others, like me were over producing insulin all over the pancreas. I, therefore had to have 2/3 of my pancreas removed and my outcome was more uncertain then the others. By the time I could arrange to have the surgery I was the 25th person they operated on. They had been flooded with people like us with this problem and were finding alot of people with this problem. I had my pancreas surrgery in January of 2006. I wish I could say it worked for me but I can't. It did for a short tiime but only because after surgery I developed panreatitis and a pancreatic pseudo cyst and while my pancreas was not working correctly my sugar levels were good. Once my pancreas was working again my problem returned. I am now trying to find some other treatment for my problem. From what I understand many of the other people who had the pancreas surgery were helped. So please do not give up hope after hearing that my operation did not help. I hope this post has helped you and if you need to get more information from me just let me know. Have your doctors look up the New England Journal of Medicine article from the Mayo Clinic from I beleive it was July 2005 on Post Gastric Bypass Hyperinsulemia. BTW they did another article in December of 2005 which said that Lap Band Patients were also having the same problem. You see when they reduce the size of the stomach by either gastric bypass , lap band or other stomach limiting surgeries there is a small percentage of people who have this problem. Good luck and I really do hope this helps.
    Catlady84 2 Replies Flag this Response
  • I think I may have your answer. I too had a Gastric Bypass. I was fine for about a year and then my sugar levels started to drop to dangerously low levels. It took me 1 1/2 years to finally get a diagnosis. My Endrocronologist got to the point where he just could not figure out what was wrong with me and he sent me to the Mayo Clinic. They had the answer. My symptoms would come on anywhere between 1 and 4 hours after eating. If I did not eat my glucose levels were normal or at times slightly high but withing 1-4 hours after eating my glucose levels would drop like a stone. When I ate my sugar would go up initially and then after peaking it would spiral down to dangerous levels. I would get the shakes, sweats, dizziness, mood changes, inability to concentrate, abdomial pain and vision problems. It was maddening. When people eat there sugar levels should rise not fall. The doctors here had no clue what was happening. Finally at the Mayo Clinic I got my answers. The problem was caused by the Gastric Bypass. They had just concluded a study and had just published their findings about a month before. I was the 6th person they had diagnosed with the problem. The problem I was having was that when I ate my pancreas would overproduce Insulin and the other Glucose lowering hormones. It did not know when to stop either. My Glucose levels would be down to 25 and my insulin levels which should have kicked off we and been zero were 12. The only thing I could do was eat to get the glucose levels up again but that was a short fix as it started the cycle of my sugar being pushed down again. It was an endless circle. At the point I had gone to the Mayo they had some sucess with the5 previous patients. They mapped their pancreas' to see where the extra insulin was being produced and then removed those parts of their pancreas. Some of them had specific sections that were over producing insulin and were easier to treat. They could focus the surgery on those specific sections. Others, like me were over producing insulin all over the pancreas. I, therefore had to have 2/3 of my pancreas removed and my outcome was more uncertain then the others. By the time I could arrange to have the surgery I was the 25th person they operated on. They had been flooded with people like us with this problem and were finding alot of people with this problem. I had my pancreas surrgery in January of 2006. I wish I could say it worked for me but I can't. It did for a short tiime but only because after surgery I developed panreatitis and a pancreatic pseudo cyst and while my pancreas was not working correctly my sugar levels were good. Once my pancreas was working again my problem returned. I am now trying to find some other treatment for my problem. From what I understand many of the other people who had the pancreas surgery were helped. So please do not give up hope after hearing that my operation did not help. I hope this post has helped you and if you need to get more information from me just let me know. Have your doctors look up the New England Journal of Medicine article from the Mayo Clinic from I beleive it was July 2005 on Post Gastric Bypass Hyperinsulemia. BTW they did another article in December of 2005 which said that Lap Band Patients were also having the same problem. You see when they reduce the size of the stomach by either gastric bypass , lap band or other stomach limiting surgeries there is a small percentage of people who have this problem. Good luck and I really do hope this helps.
    Catlady84 2 Replies Flag this Response
  • Dear Catlady84, Thank you for the response. I have not heard from anyone in months. I too know about the Mayo Clinic. I was trying to get back there last summer, but financially it was impossible. I am currently in the same condition that has only worsened. My sugars have been so low they don't even register on my machine. I have had doctor after doctor tell me it's in my head. They cannot believe anyone could be awake with sugars that low. I recently was told that my body has gotten used to the lows and I don't have the same symptoms as someone else would. Things for me have just spiraled out of control. Know my pancreas not only makes too much insulin, it doesn't make the correct digestive enzymes for my food to be processed. If you would email me and let me know how to contact you I would be so appreciative. I have been through ***l and I am still fighting. Please, any information would be helpful. I will leave my email below, and if you wouldn't mind please email me back. Your the first person that I have had contact with that understands. Thank you so much.Mary Sheppardwolfcubs2@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • Have you had an x-ray to see if they left anything inside you?
    Monsterlove 2921 Replies Flag this Response
  • Dear MonsterLove,I have had several test done. Unfortunately I have had horrible doctors. I just recently found a Gastroenterologist that did an Endoscopy, where they put the tube down your throat and look. They discovered that the doctor who did my Gastric Bypass did not do it correctly. I really have no stomach at all. I find out next week what is going to happen about that. The pancreas problem is very much there, and my current doctor is aware of it. The rest of them just sat on there hands. My problem is I live in a very small town. Anything this complicated requires me to travel. This is not possible for me right now. The expense would be great. I am hoping with all my might that this new doctor can help, but I don't know yet. You would be surprised at how the doctors have treated me then dismissed me like I was nothing. It has been one difficult ride, and I am ready to get off. Thank you for your reply and I hope all is going well with you. Mary
    Anonymous 42789 Replies Flag this Response
  • Could you have an insulinoma?
    rad-skw 1605 Replies Flag this Response
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  • wow my mom just went to the doctor because well she too had gadtric bypass surgery about 1 year ago she has been experiencing horrible back pains for the last 3 months i would say, by her kidneys. she did ct scan and is going to do an ultrasound now because they foind that her uterus was also inflammed. sounds like what you got but she has not gotten an answer yet either... let me know ehat goes on with you and ill let you know if they find anything on her ultasound..
    Anonymous 42789 Replies Flag this Response
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