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Gastroenterology (Expert Forum)
Carcinoid Syndrome?
Answered by
Kevin Pho, MD - Internal Medicine
Kevin Pho, MD
Boston - MA
This forum is for questions regarding Gastroenterology issues such as Acid Reflux (GERD), Barretts Esophagus, Colitis, Colon/Bowel Disorders, Crohn's Disease, Diverticulitis/ Diverticulosis, Digestive Disorders, IBS, Stomach Pain.
Carcinoid Syndrome?
by Pixie1969too, Aug 11, 2003 12:00AM
Hello, I am really hoping you can help me.
I am a 33 yr old woman with several health issues that are very much affecting my quality of life. I have PCOS (a.k.a. Stein Leventhal) and IBS that was at one time considered to be "segmental colitis." At one time I was also dx with Barrett's Esophagus (none found upon later examination) and suffer from GERD, gastritis, hiatal hernia, fatty liver, and probably some others that I am forgetting. Had my gallbladder out in 2001 due to acalculus cholecystitis but still have pain in that area and my ALT & AST have been consistently elevated (don't have the numbers right in front of me but one of them reached a highest point of 108 which caused my Endocrinologist to take me off the Lipitor 10 mg I was taking). I am currently taking 2 x 500 mg of Glucophage XR for the PCOS (insulin resistant), a prenatal vitamin because we're thinking me might want to try to get pregnant in the coming year or so, Immodium, Nexium 20 mg, and 2 Fiber Con tablets at night.
I am beyond miserable.
At this point the only food I can eat in the morning for breakfast is Triscuit crackers, or every once in a while a protein drink (2 grams carbs). ANYTHING else will send me running to the ladies room with awful pain and diarrhea. It seems the mornings are worst. Sometimes I double up on the Immodium and if I don't have diarrhea because the immodium constipated me, I'll still have the excruciating pain. Come the afternoon/evening I'm usually ok, but sometimes I can have full days of diarrhea.
I had a colonoscopy last year and my gastro found polyps, one was an adenoma. Liver biopsy at time of lap choly was negative.
I have had rosacea for a few years, and in Feb. my face reacted to something (no idea what, wasn't doing anything different at all). Went to see my dermatologist and he was "puzzled" - said it wasn't rosacea and he had no idea what it was but my skin was red and burning and became rough and scaly. He prescribed Rosanil and Elidel and after a few weeks all was fine. A few months later I had a glass of wine and my face literally freaked out.. it became SO red and swollen and burned so intensely I thought I would have to go to the hospital. I put ice on it and after about an hour it calmed down. It happened again after I had one of those hard cider drinks a few weeks later. I started thinking it was the sulfites in the drinks reacting to the Rosanil but the pharmacy said that wasn't possible. A few days ago I had a drink that contained Absolut (I drink very rarely) and it happened again, more severely than the other 2 times.
I read a post on here last night and you advised that gentleman to investigate carcinoid syndrome. I checked that out and became curious.. I have many of the symptoms - do you think that could be what is wrong with me? Does the diarrhea happen with the facial flushing, or is it possible that they can be separate? Any advice would be extremely appreciated. Thanks so much!
I am a 33 yr old woman with several health issues that are very much affecting my quality of life. I have PCOS (a.k.a. Stein Leventhal) and IBS that was at one time considered to be "segmental colitis." At one time I was also dx with Barrett's Esophagus (none found upon later examination) and suffer from GERD, gastritis, hiatal hernia, fatty liver, and probably some others that I am forgetting. Had my gallbladder out in 2001 due to acalculus cholecystitis but still have pain in that area and my ALT & AST have been consistently elevated (don't have the numbers right in front of me but one of them reached a highest point of 108 which caused my Endocrinologist to take me off the Lipitor 10 mg I was taking). I am currently taking 2 x 500 mg of Glucophage XR for the PCOS (insulin resistant), a prenatal vitamin because we're thinking me might want to try to get pregnant in the coming year or so, Immodium, Nexium 20 mg, and 2 Fiber Con tablets at night.
I am beyond miserable.
At this point the only food I can eat in the morning for breakfast is Triscuit crackers, or every once in a while a protein drink (2 grams carbs). ANYTHING else will send me running to the ladies room with awful pain and diarrhea. It seems the mornings are worst. Sometimes I double up on the Immodium and if I don't have diarrhea because the immodium constipated me, I'll still have the excruciating pain. Come the afternoon/evening I'm usually ok, but sometimes I can have full days of diarrhea.
I had a colonoscopy last year and my gastro found polyps, one was an adenoma. Liver biopsy at time of lap choly was negative.
I have had rosacea for a few years, and in Feb. my face reacted to something (no idea what, wasn't doing anything different at all). Went to see my dermatologist and he was "puzzled" - said it wasn't rosacea and he had no idea what it was but my skin was red and burning and became rough and scaly. He prescribed Rosanil and Elidel and after a few weeks all was fine. A few months later I had a glass of wine and my face literally freaked out.. it became SO red and swollen and burned so intensely I thought I would have to go to the hospital. I put ice on it and after about an hour it calmed down. It happened again after I had one of those hard cider drinks a few weeks later. I started thinking it was the sulfites in the drinks reacting to the Rosanil but the pharmacy said that wasn't possible. A few days ago I had a drink that contained Absolut (I drink very rarely) and it happened again, more severely than the other 2 times.
I read a post on here last night and you advised that gentleman to investigate carcinoid syndrome. I checked that out and became curious.. I have many of the symptoms - do you think that could be what is wrong with me? Does the diarrhea happen with the facial flushing, or is it possible that they can be separate? Any advice would be extremely appreciated. Thanks so much!
Doctor's Answer
by Kevin Pho, MD, Aug 11, 2003 12:00AM
, Aug 11, 2003 12:00AM
Carcinoid syndrome should definitely be considered. Diarrhea occurs in 80 percent of cases. Stools may vary from few to more than 30 per day, are typically watery and nonbloody, and can be explosive and accompanied by abdominal cramping. The diarrhea is usually unrelated to flushing episodes.
Flushing occurs in 85 percent of cases. It primarily involves the face, neck and upper chest, which become red to violaceous or purple, and is associated with a mild burning sensation. Most flushing episodes occur spontaneously, but they can be provoked by eating, drinking alcohol, defecation, emotional events, palpation of the liver, and anesthesia.
The most useful initial diagnostic test for the carcinoid syndrome is to measure 24-hour urinary excretion of 5-hydroxyindoleacetic acid (HIAA), which is the end product of serotonin metabolism. Determination of the whole blood serotonin concentration should also be considered. These tests should definitely be considered if carcinoid syndrome is suspected.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Sitaraman. The carcinoid syndrome. UptoDate, 2003.
Flushing occurs in 85 percent of cases. It primarily involves the face, neck and upper chest, which become red to violaceous or purple, and is associated with a mild burning sensation. Most flushing episodes occur spontaneously, but they can be provoked by eating, drinking alcohol, defecation, emotional events, palpation of the liver, and anesthesia.
The most useful initial diagnostic test for the carcinoid syndrome is to measure 24-hour urinary excretion of 5-hydroxyindoleacetic acid (HIAA), which is the end product of serotonin metabolism. Determination of the whole blood serotonin concentration should also be considered. These tests should definitely be considered if carcinoid syndrome is suspected.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Sitaraman. The carcinoid syndrome. UptoDate, 2003.
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HI, I also had a question regarding carcinoid syndrome posted as Any Clues on August 8th.
Sounds like carcinoid to me based on everything I've read. Not only do you want a urine for 5HIAA but you should get a CT of the abdomen.
My story is alot different and I suspect bronchial as my symptoms are similar to carcinoid as Lung carcinoid can be. I'm still seeking information on lung carcinoid.
Carcinoid is a very slow growing tumor. '
I wish you all the best and good luck, you have my full support.
Ed
HI, I also had a question regarding carcinoid syndrome posted as Any Clues on August 8th.
Sounds like carcinoid to me based on everything I've read. Not only do you want a urine for 5HIAA but you should get a CT of the abdomen.
My story is alot different and I suspect bronchial as my symptoms are similar to carcinoid as Lung carcinoid can be. I'm still seeking information on lung carcinoid.
Carcinoid is a very slow growing tumor. '
I wish you all the best and good luck, you have my full support.
Ed
Yes, yours was the post I referred to.. I have to say, I'm a bit scared out of my wits right now and I don't see my gastroenterologist until next week. Please keep me posted on how you are doing, I will keep my fingers crossed that things turn out ok for you!
Well I finally saw a GI Doc yesterday. It has been 2 years. Unfortunately nobody has found an answer for me and I have had problems my Internal Med Doc's. They want me to let it go. They said physiologically I am healthy and maybe I should talk to a psychiatrist so I can better deal with my unexplained symptoms. I find this unexceptable. I have been tested up the wahzoo but with no answers.
This GI Doc was fantastic. He said I should continue to search for an answer yet be reassured that everything is ok at this point. I was inspired. Finally someone who wants to help. He said my symptoms were weird and didn't think it was carcinoid although my symptoms are similar. He said bronchial carcinoid is still a possibility but he didn't know much about it.
We started with a chest x ray, which of coarse was neg, and a serum seratonin. He said he would give me a CT of the Thorax after trying protonix for 4-6 weeks. Hey, at least he belives me.
I am glad everything has been normal to this point but I fera what the true cause is. Well I'll ust have to trust in the Lord.
I don't know where else to go with this. My life has changed so much. I am not myself the past 2 years. I have made some wonderful changes in my life, things I wish I had done years ago but I also have given up so much. I just want my life back. I'd love an answer.
I hope you get one. Then at least you'll know what your up against. Keep telling yourself that YOU WILL WIN.
Keep me updated.
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