Discussions By Condition: I cannot get a diagnosis.

Extreme Flushing on Upper Body, Tachycardia

Posted In: I cannot get a diagnosis. 46 Replies
  • Posted By: Anonymous
  • March 20, 2010
  • 07:35 PM

I have been seen by my primary, dermatologists, endocrinologists, allergists, and cardiologists. Thus far the only diagnosis I have is postural tachycardia (postural orthostatic tachycardia syndrome), which means my heart rate increases significantly when I stand (as in my body has trouble fighting the effects of gravity). Prior to the onset of my health issues, I was an active 20 year old male-exercise, etc.

The primary symptoms that I am concerned with are the extreme flushing responses I get to: concentration, talking, sun, exercise, and sometimes spontaneous. I did not used to flush as I do now. The other primary concern is my fast heart rate, which can not really be explained (when I am laying down my heart rate is in 60-70s, and when I stand it jumps to the 110-120s). I have a constant blood pressure of about 130/85, which is a bit high, but does not change much when I stand. I am also extremely tired, and doctors typically attribute this to the tachycardia (my heart is like its constantly exercising when I stand).

Thus far the doctors have ruled out mastocytosis, pheochromocytoma, carcinoid syndrome, sjorgen's syndrome, and a few other diseases that could cause these reactions. Despite negative test results, I have also trialed H1/H2 antihistamines. I have also tried 4 beta blockers: metoprolol, propranolol, carvedilol (which actually induced flushning), and nebivolol (which also induced flushing). Unfortunately, 2 of the beta blockers (above) induce a flush on my upper body, and the other 2 make me tired to the point I can not function without 15+ hours of sleep (and I feel groggy the rest of the day).

The flushing occurs on my upper body: face (a little bit), neck (a lot), chest (a lot), and shoulders (a lot). If any one has any ideas on what could cause this flushing and tachycardia, I would appreciate it. I had an exercise stress test, and it came back as a normal heart rate increase to exercise, but I also had a peak HR of 220- which is high. Thanks again for any advice.

Jacob

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  • I have been seen by my primary, dermatologists, endocrinologists, allergists, and cardiologists. Thus far the only diagnosis I have is postural tachycardia (postural orthostatic tachycardia syndrome), which means my heart rate increases significantly when I stand (as in my body has trouble fighting the effects of gravity). Prior to the onset of my health issues, I was an active 20 year old male-exercise, etc. The primary symptoms that I am concerned with are the extreme flushing responses I get to: concentration, talking, sun, exercise, and sometimes spontaneous. I did not used to flush as I do now. The other primary concern is my fast heart rate, which can not really be explained (when I am laying down my heart rate is in 60-70s, and when I stand it jumps to the 110-120s). I have a constant blood pressure of about 130/85, which is a bit high, but does not change much when I stand. I am also extremely tired, and doctors typically attribute this to the tachycardia (my heart is like its constantly exercising when I stand). Thus far the doctors have ruled out mastocytosis, pheochromocytoma, carcinoid syndrome, sjorgen's syndrome, and a few other diseases that could cause these reactions. Despite negative test results, I have also trialed H1/H2 antihistamines. I have also tried 4 beta blockers: metoprolol, propranolol, carvedilol (which actually induced flushning), and nebivolol (which also induced flushing). Unfortunately, 2 of the beta blockers (above) induce a flush on my upper body, and the other 2 make me tired to the point I can not function without 15+ hours of sleep (and I feel groggy the rest of the day). The flushing occurs on my upper body: face (a little bit), neck (a lot), chest (a lot), and shoulders (a lot). If any one has any ideas on what could cause this flushing and tachycardia, I would appreciate it. I had an exercise stress test, and it came back as a normal heart rate increase to exercise, but I also had a peak HR of 220- which is high. Thanks again for any advice. Jacob Hello Jacob..While researching my own symptoms in an effort to try and come up with some explanation...I came across your post. I have been experiencing the same type of symptoms (nearly exact) as you for 28 months now! My physicians thought it was carcinoid. I was tested repeatly with both blood labs for carcinoid and also imaging for carcinoid that included an Octreoscan. All came back negative with the exception of two "slightly" elevated blood markers for carcinoid. (CgA and Serotonin) I was told by an expert in the field that...and I quote "he would bet the farm I don't have carcinoid!" I am still in great pain, body aches, flushing, weakness in legs and arms, headaches, racing HR...I am still not convinced that I do not have carcinoid because I have read many posts from carcinoid patients who had negative testing and scans and went on to find that they indeed had carcinoid! Just wanted to know, since it's been several months since you posted...if you have come up with a diagnosis yet? Are you any better? I would be so interested in hearing from you. Thanks...and hope things have improved for you.
    bufalowgrl 27 Replies
    • August 14, 2010
    • 01:06 PM
    • 0
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  • to the first poster.. your issue may just be postural othostatic tachycardia syndrome. With this tiredness is normal with it esp when on is having like an attack of it (i myself get POTS) and i know that flushing can happen to with it but dont know if its the kind of flushing you describe or not. http://www.dinet.org/symptoms.htm Many meds can make the symptoms worst............. to the second poster... does your heart rate change after standing and go much faster? For it to be POTS it needs to increase by 30 beats per minute after standing (while you are not doing any activities or movement) increase to or be over 120 beats per minute. If it does and you have POTS, this can occur by itself or with other illnesses. By your symptoms i'd think it was occuring with another problem. In your case what sets off flushing???? After you exercise.. do you later on get more symptoms from it??? where is the pain and of what kind is it?
    taniaaust1 2,267 Replies
    • August 14, 2010
    • 02:14 PM
    • 0
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  • Thanks for the responses. Bufalowgirl- Come to think of it, I have seen a few of your posts in the past while researching my symptoms as well. I have been getting considerably better since posting last. I am off of meds, and simply using a lot of SEA Salt (and water). I also work on a recumbent bike about 4 days a week for 25-30 minutes. Through these practices I have been able to keep my standing heart rate under 100 consistently, sometimes even as low as 80's. I have seen some fast improvements, for whatever reason. Before my pots diagnosis I was an athlete- thus my pots was not due to 'deconditioning.' Also equally as strange, I utilized extra salt in the past (with no effect), but since I have started using sea salt I have seen experiencing improvements. As far as the flushing goes- it is still fairly prominent. Sometimes it even burns. I have not seen much improvement with this, other than trying to avoid triggers. Equally as strange- when I perform the recumbent bike, I do not flush. Only when I attempt to jog does it occur in terms of exercising (and lifting weights, temporarily). I should also mention that I have been working out my legs with weights regularly as well, esp. calf muscles. I never would have thought this would be possible just a few months ago. The flushing still worries me, as carcinoid was never officially ruled out. Though like you, bufalowgirl, my doc's don't think it is carcinoid. I had a few slightly elevated serotonin serum levels, that's it. So likely it is not carcinoid, but possibly rather related to the pots and dysautonomia. Who knows...Strangely enough, my doctor also recently had another patient just like me (and you too, then, bufalowgirl) (pots and flushing, no masto or carcinoid). Also, there is a useful website for pots, with a forum, if neither of the two above posters have found it yet:http://www.dinet.org/Jacob
    Anonymous 42,789 Replies
    • August 26, 2010
    • 06:36 PM
    • 0
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  • Hi Jacob,I have carcinoid and was diagnosed in 2006. I have the same symptoms as you but also more. This is usually referred to as "carcinoid syndrome". The fact your CgA was elevated is a very strong indicator of carcinoid along with elevated seratonin. Another name for carcinoid is neuroendocrine tumors.In fact, there are many people whose carcinoid does not show up on Octreoscan - and the tumor(s) can be so small that they cannot be seen on any scan - until they begin to really cause trouble.After every test known to man and even exploratory surgery they never found my primary tumor. The tumors they did find were metastasis to my liver. There are a couple of web sites devoted to carcinoid http://www.caringforcarcinoid.org/and http://www.carcinoid.org/ While I hope that you do not have carcinoid, I would ask your doctor what other diseases cause elevated CgA? You may want to go to see a carcinoid specialist to get the right battery of tests run. There are a few more that can be run.Also, elevated CgA can cause high blood pressure and tachycardia, among other things.Best to you,Andreaespinozaam@san.rr.com
    Anonymous 42,789 Replies
    • August 30, 2010
    • 01:08 AM
    • 0
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  • Thank you for the post. However, my Cga levels were normal, while bufalowgrl's were abnormal. I hope she reads your post as well.It seems that msg and tyramine, un-natural chemicals in food, are making my flushing worse. I am going to limit these chemicals in my diet and will report back on if it makes any difference, so that others may benefit as well. Again, carcinoid is a possibility, which most doctors suggest is unlikely, but something I will follow up with. The only elevated test I have had is a slightly elevated serum serotonin (400, normal 50-250). Though the doc says that usually he sees levels 700+ for carcinoid. And the scans, octreoscan and CT, have been normal, without any liver involvement. But the flushing is terrible!I hope this thread will continue--any one ever get deep flushing without carcinoid/mastocytosis/pheo? Thanks again for the info.Jacob
    Anonymous 42,789 Replies
    • September 1, 2010
    • 02:33 AM
    • 0
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  • Thank you for the post. However, my Cga levels were normal, while bufalowgrl's were abnormal. I hope she reads your post as well. It seems that msg and tyramine, un-natural chemicals in food, are making my flushing worse. I am going to limit these chemicals in my diet and will report back on if it makes any difference, so that others may benefit as well. Again, carcinoid is a possibility, which most doctors suggest is unlikely, but something I will follow up with. The only elevated test I have had is a slightly elevated serum serotonin (400, normal 50-250). Though the doc says that usually he sees levels 700+ for carcinoid. And the scans, octreoscan and CT, have been normal, without any liver involvement. But the flushing is terrible! I hope this thread will continue--any one ever get deep flushing without carcinoid/mastocytosis/pheo? Thanks again for the info. Jacob Hi Jacob- I have what seems to be a foregut carcinoid flush, on face, ears, neck (sometimes), upper chest, shoulders, upper arms, elbows, and knees. My face and ears are deep red, the elbows and knees are bright red, and the rest is pink. I've had it 2-3 yrs. The full flush is every few months, and lesser flushes (one or both cheeks, or one ear) are about once/wk. I've had many blood tests (most twice) including serotonin, CgA, histamine, and about 10 other substances. Also had a normal Octreoscan, and MRI which showed no metastesis in the liver. My doctors say I don't have carcinoid because of all the negative tests. Even Dr Warner in NY, whose a foremost expert on carcinoid, said I don't have it. But no doctor has ever seen my flush. I have researched for two years and am pretty sure I have carcinoid because nothing else fits my symptoms. Octreoscan is at best 85% accurate because it does not catch very small carcinoids, and some carcinoids don't have the receptors needed to light up on the scan. Were your blood tests taken while flushing or very soon after? If not, it is somewhat less likely that the substance (serotonin, histamine) will still be in your blood when the test is taken, so it will be negative. That is why I think I do have carcinoid. I don't flush often enough to have taken the tests during or near flushing. Also, these substances don't circulate regularly or evenly. As for increased heart rate when you stand up, I don't think that's related to carcinoid at all. I have at times (not at all lately) had a considerably increased heartrate when I got out of bed, which lasted about 5 minutes and then normalized. A cardiologist said that was not a problem. How long have you been flushing? How long do your flushes last? Were they only a few minutes long at first and got longer over time, or did even the first flush last at least 30 minutes? Do you have loose bowels as a new symptom? If so, that would make carcinoid more likely. As someone already said, some carcinoids don't show up on any scan for years, so don't rely on negative scans. The only thing I would suggest is going to a carcinoid specialist and ask that a battery of carcinoid related blood tests be taken. CgA is only about 85% sensitive so a negative result doesn't totally rule out carcinoid. I assume your flush is dry because if not, there are many more possibilities of causes. Mast cell disease, niacin flush, and allergies, and possibly histamine intolerance are other possibities. Dr. Warner (the expert) told me there are hundreds of possibilities, but didn't specify what they were! If you learn anything new, I'd be very interested to hear about it. I hope it's anything but carcinoid. Lori333
    Lori333 10 Replies
    • October 1, 2010
    • 08:40 PM
    • 0
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  • Thank you for the post. However, my Cga levels were normal, while bufalowgrl's were abnormal. I hope she reads your post as well. It seems that msg and tyramine, un-natural chemicals in food, are making my flushing worse. I am going to limit these chemicals in my diet and will report back on if it makes any difference, so that others may benefit as well. Again, carcinoid is a possibility, which most doctors suggest is unlikely, but something I will follow up with. The only elevated test I have had is a slightly elevated serum serotonin (400, normal 50-250). Though the doc says that usually he sees levels 700+ for carcinoid. And the scans, octreoscan and CT, have been normal, without any liver involvement. But the flushing is terrible! I hope this thread will continue--any one ever get deep flushing without carcinoid/mastocytosis/pheo? Thanks again for the info. Jacob Hi Jacob - I was also told by the same expert that buffalogrl saw, that I did not have carcinoid, although he never saw my flush. He took many boblood test which were all normal (except one of the 3 CgA I took was 6 (not 5 or under -- which he said was negligable), he said I did not have carcinoid since in all his 2,000 patients, not one had carcinoid if all their test were negative. But there are, indeed, at least several people who post, that did eventually get diagnosed with carcinoid even though their tests were normal. Octreocans and all other scans are not nearly 100% sensitive, so they cannot be relied on. Also, the substances which cause flushing don't have a continuous level in your blood. If you didn't get tested during a flush, there might not have been a high enough level to show up on the test. I think that's my case, because my flushes aren't that close together. I don't think a heart rate that increases when standing up is related to carcinoid. But in some cases, a lower heart rate and tachicardia are present during a carcinoid flush. How long have you had the flushing? And how long do your flushes last? If they are less than about 10 minutes they would be midgut, and if longer than 30 mins even from the first flush, it is likely foregut, if it is carcinoid. The expert checked me for Mast Cell disease by taking a tryptase test which was negative, but that, too, is not reliable to rule out that disease. I would suggest seeing an expert and getting a whole battery of blood tests to try to further rule out carcinoid (although no test is 100% proof if negative). And try to take tests while flushing. It is very frustrating trying to diagnosis either of these diseases. I am retesting every 6 months-1 year, and once a year, get a scan of some sort. If you have any luck in your diagnosis, I'd like to hear about it. Hope it's anything but carcinoid! Lori333
    Lori333 10 Replies
    • October 1, 2010
    • 08:58 PM
    • 0
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  • Thanks for the responses. Bufalowgirl- Come to think of it, I have seen a few of your posts in the past while researching my symptoms as well. I have been getting considerably better since posting last. I am off of meds, and simply using a lot of SEA Salt (and water). I also work on a recumbent bike about 4 days a week for 25-30 minutes. Through these practices I have been able to keep my standing heart rate under 100 consistently, sometimes even as low as 80's. I have seen some fast improvements, for whatever reason. Before my pots diagnosis I was an athlete- thus my pots was not due to 'deconditioning.' Also equally as strange, I utilized extra salt in the past (with no effect), but since I have started using sea salt I have seen experiencing improvements. As far as the flushing goes- it is still fairly prominent. Sometimes it even burns. I have not seen much improvement with this, other than trying to avoid triggers. Equally as strange- when I perform the recumbent bike, I do not flush. Only when I attempt to jog does it occur in terms of exercising (and lifting weights, temporarily). I should also mention that I have been working out my legs with weights regularly as well, esp. calf muscles. I never would have thought this would be possible just a few months ago. The flushing still worries me, as carcinoid was never officially ruled out. Though like you, bufalowgirl, my doc's don't think it is carcinoid. I had a few slightly elevated serotonin serum levels, that's it. So likely it is not carcinoid, but possibly rather related to the pots and dysautonomia. Who knows...Strangely enough, my doctor also recently had another patient just like me (and you too, then, bufalowgirl) (pots and flushing, no masto or carcinoid). Also, there is a useful website for pots, with a forum, if neither of the two above posters have found it yet: http://www.dinet.org/ Jacob Hello Jacob...Just checking in after all these months. How are you doing and have your symptoms abated? I, myself, am still on the rollercoaster ride of trying to get a proper diagnosis. My symptoms remain the same..flushing, sweating, rapid heart rate etc..but my most troublesome symptom is the RUQ pain and mid back pain now. I am still not entirely convinced it is not carcinoid despite Dr. Warner's insistence that it is not. Many posts I've read say there are many carcinoid patients with normal blood markers. I know you once had an elevated blood serotonin as I did. My CgA was only elevated once...but remains on the high limit of "normal". Have you ever retested? I do hope you have been able to resolve your issues. Please take a moment to get back to me with your progress. Perhaps you can shed some light on things for me. By the way, do you or did you ever have abdominal symptoms along with the flushing..etc? Hope to hear from you....Thanks!
    bufalowgrl 27 Replies
    • November 18, 2010
    • 05:27 PM
    • 0
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  • Hi Jacob - I was also told by the same expert that buffalogrl saw, that I did not have carcinoid, although he never saw my flush. He took many boblood test which were all normal (except one of the 3 CgA I took was 6 (not 5 or under -- which he said was negligable), he said I did not have carcinoid since in all his 2,000 patients, not one had carcinoid if all their test were negative. But there are, indeed, at least several people who post, that did eventually get diagnosed with carcinoid even though their tests were normal. Octreocans and all other scans are not nearly 100% sensitive, so they cannot be relied on. Also, the substances which cause flushing don't have a continuous level in your blood. If you didn't get tested during a flush, there might not have been a high enough level to show up on the test. I think that's my case, because my flushes aren't that close together. I don't think a heart rate that increases when standing up is related to carcinoid. But in some cases, a lower heart rate and tachicardia are present during a carcinoid flush. How long have you had the flushing? And how long do your flushes last? If they are less than about 10 minutes they would be midgut, and if longer than 30 mins even from the first flush, it is likely foregut, if it is carcinoid. The expert checked me for Mast Cell disease by taking a tryptase test which was negative, but that, too, is not reliable to rule out that disease. I would suggest seeing an expert and getting a whole battery of blood tests to try to further rule out carcinoid (although no test is 100% proof if negative). And try to take tests while flushing. It is very frustrating trying to diagnosis either of these diseases. I am retesting every 6 months-1 year, and once a year, get a scan of some sort. If you have any luck in your diagnosis, I'd like to hear about it. Hope it's anything but carcinoid! Lori333Hi Lori, my name is also Lauri. I have very similar symptoms to yours. No tumours have yet been located, but I was fortunate enough to have a trial of carcinoid treatment injections(Sandostatin) which resulted in a dramatic improvement in my symptoms. My flushing started from teenage years from alcohol and stress (I'm now 36yo so not sure if they were specifically related), then 5 years ago the flushing escalated. Still only brief and patchy though. Thought it was stress and a food allergy. Then late last year I had dreadful abdominal pain, and (only a little) diahhorea. Had a 'healthy' appendix removed, and because surgeon noticed my flushing in hospital he ordered a serotonin test which came back a little bit elevated. 6 weeks later it was even more elevated. My flushing became more frequent and diahhorea got worse. Just before starting the injections the flushes went from just my ears, face, neck and chest, to include my breasts, back, upper arms and inner knee area. Oh and I also have bouts of heart palpitations that started 5 years ago. Have had multitudes of scans including Octreoscan which haven't found anything, but I am hoping a Gallium 68 PET Scan early next year will reveal all! Because my bloodwork is well below that of most Carcinoid patients I now take photos of me flushing with me to show any new doctors. I found only a couple of medical references on-line to how carcinoids do not necessarily constantly secrete, and yet I think this is such important information for doctors to be aware of. Anyway, keep going in your quest for diagnosis because I wouldn't be surprised if they did eventually find a carcinoid somewhere. Will be thinking of you : )
    Anonymous 42,789 Replies
    • December 14, 2010
    • 01:51 PM
    • 0
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  • Hi Lori, my name is also Lauri. I have very similar symptoms to yours. No tumours have yet been located, but I was fortunate enough to have a trial of carcinoid treatment injections(Sandostatin) which resulted in a dramatic improvement in my symptoms. My flushing started from teenage years from alcohol and stress (I'm now 36yo so not sure if they were specifically related), then 5 years ago the flushing escalated. Still only brief and patchy though. Thought it was stress and a food allergy. Then late last year I had dreadful abdominal pain, and (only a little) diahhorea. Had a 'healthy' appendix removed, and because surgeon noticed my flushing in hospital he ordered a serotonin test which came back a little bit elevated. 6 weeks later it was even more elevated. My flushing became more frequent and diahhorea got worse. Just before starting the injections the flushes went from just my ears, face, neck and chest, to include my breasts, back, upper arms and inner knee area. Oh and I also have bouts of heart palpitations that started 5 years ago. Have had multitudes of scans including Octreoscan which haven't found anything, but I am hoping a Gallium 68 PET Scan early next year will reveal all! Because my bloodwork is well below that of most Carcinoid patients I now take photos of me flushing with me to show any new doctors. I found only a couple of medical references on-line to how carcinoids do not necessarily constantly secrete, and yet I think this is such important information for doctors to be aware of. Anyway, keep going in your quest for diagnosis because I wouldn't be surprised if they did eventually find a carcinoid somewhere. Will be thinking of you : ) I so feel all of your pain as I, too, have this awful flushing with tachycardia. I was dx'd with "POTS' at the Mayo Clinic and they attributed the flushing to that but then my POTS started to improve on some medication but the flushing first stayed the same and then became dreadful and for me it is often accompanied by GI issues and I get some swelling (internal - tongue, GI tract etc) and external (puffy face etc.). I also had recurrent bouts of cyclical vomiting, stomach cramps, nausea and migraine that land me in the hospital a couple of times a year and which they always label "food poisoning" or "stomach bug" - when i'm sure they aren't - they were actually anaphylaxis, my dr.'s now know! I was checked for carcinoid (also by Dr. Warner in NYC) and then, after much digging, discovered something called "Mast Cell Activation Disorder" which i am currently being treated for with H1 and H2 histamind blockers and a mast cell stabilizer called "Cromolyn Sodium" (brand name "Gastrocrom"). To learn more about this disorder, you can check out: http://www.tmsforacure.org/ or this great board, this is the link to the old one: http://mastcelldisorders.lefora.com/ which has lots of great info on it but it moved to a new location so all of the most recent posts are at: http://mastcelldisorders.wallack.us/yabb/YaBB.pl. I am currently being seen by one of the experts on mast cell issues at Brigham & Women's Hospital in Boston (I go there from NYC). I hope this helps. (NOTE: if you do have this issue, beta blockers make the flushing worse because they tend to trigger mast cells)......
    Anonymous 42,789 Replies
    • February 7, 2011
    • 04:02 PM
    • 0
    Flag this Response
  • Hi Lori, my name is also Lauri. I have very similar symptoms to yours. No tumours have yet been located, but I was fortunate enough to have a trial of carcinoid treatment injections(Sandostatin) which resulted in a dramatic improvement in my symptoms. My flushing started from teenage years from alcohol and stress (I'm now 36yo so not sure if they were specifically related), then 5 years ago the flushing escalated. Still only brief and patchy though. Thought it was stress and a food allergy. Then late last year I had dreadful abdominal pain, and (only a little) diahhorea. Had a 'healthy' appendix removed, and because surgeon noticed my flushing in hospital he ordered a serotonin test which came back a little bit elevated. 6 weeks later it was even more elevated. My flushing became more frequent and diahhorea got worse. Just before starting the injections the flushes went from just my ears, face, neck and chest, to include my breasts, back, upper arms and inner knee area. Oh and I also have bouts of heart palpitations that started 5 years ago. Have had multitudes of scans including Octreoscan which haven't found anything, but I am hoping a Gallium 68 PET Scan early next year will reveal all! Because my bloodwork is well below that of most Carcinoid patients I now take photos of me flushing with me to show any new doctors. I found only a couple of medical references on-line to how carcinoids do not necessarily constantly secrete, and yet I think this is such important information for doctors to be aware of. Anyway, keep going in your quest for diagnosis because I wouldn't be surprised if they did eventually find a carcinoid somewhere. Will be thinking of you : ) Hi Lauri - I am writing to see if you've had the Galliuim 68 scan you said you were going to get early this year. If so, did it find anything? I'm very interested to hear how things are going with you. I have not had many scans -- only octreotide and MRI, which were negative (with simple cysts in the liver). Had slightly elevated CgA and serotonin a few months ago, but since then both markers have been normal from InterScience Labs, which seems to be the most reliable lab according to experts. Still, it's very odd that within a month my CgA can be elevated and then in the lower third of normal range. Have you been tested for Pancreastatin? Where will the Gallium68 scan be done for you? I just heard one has just become available in Iowa -- the first in the U.S. Hope to hear from you. Lori333
    Lori333 10 Replies Flag this Response
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  • I so feel all of your pain as I, too, have this awful flushing with tachycardia. I was dx'd with "POTS' at the Mayo Clinic and they attributed the flushing to that but then my POTS started to improve on some medication but the flushing first stayed the same and then became dreadful and for me it is often accompanied by GI issues and I get some swelling (internal - tongue, GI tract etc) and external (puffy face etc.). I also had recurrent bouts of cyclical vomiting, stomach cramps, nausea and migraine that land me in the hospital a couple of times a year and which they always label "food poisoning" or "stomach bug" - when i'm sure they aren't - they were actually anaphylaxis, my dr.'s now know! I was checked for carcinoid (also by Dr. Warner in NYC) and then, after much digging, discovered something called "Mast Cell Activation Disorder" which i am currently being treated for with H1 and H2 histamind blockers and a mast cell stabilizer called "Cromolyn Sodium" (brand name "Gastrocrom"). To learn more about this disorder, you can check out: http://www.tmsforacure.org/ or this great board, this is the link to the old one: http://mastcelldisorders.lefora.com/ which has lots of great info on it but it moved to a new location so all of the most recent posts are at: http://mastcelldisorders.wallack.us/yabb/YaBB.pl. I am currently being seen by one of the experts on mast cell issues at Brigham & Women's Hospital in Boston (I go there from NYC). I hope this helps. (NOTE: if you do have this issue, beta blockers make the flushing worse because they tend to trigger mast cells)...... Hi - Could you please describe your flushing. How long did each episode last, what parts of your face/body did it affect, what triggered it, etc. When you saw Dr. Warner, did he see your flush? Did he have your blood tested for carcinoid markers like CgA, serotonin, pancreastatin, calcitonin, gastrin, etc? If so, were any of them elevated? When I saw him none of my markers were elevated, and he didn't see my flush, so he was sure I didn't have carcinoid. Since then I developed mild espisodes of diarrhea, which he calls IBS, and two carcinoid markers were mildly elevated. He toldl me to retest at ISI labs, and the results were normal, so again, he says I don't have carcinoid. He had tested my tryptase for Mast Cell disease, and from what I've read I don't think I have that, although sometimes when I rub my skin, it gets red more than it should. I take half a dose of a beta blocker atenolol every few days to prevent afib, but that doesn't trigger flushing. I will read about Mast Cell Activation anyway, but I doubt that's what I have. Thanks for the information and hope you will respond to this message. Lori333
    Lori333 10 Replies Flag this Response
  • Thank you for the post. However, my Cga levels were normal, while bufalowgrl's were abnormal. I hope she reads your post as well. It seems that msg and tyramine, un-natural chemicals in food, are making my flushing worse. I am going to limit these chemicals in my diet and will report back on if it makes any difference, so that others may benefit as well. Again, carcinoid is a possibility, which most doctors suggest is unlikely, but something I will follow up with. The only elevated test I have had is a slightly elevated serum serotonin (400, normal 50-250). Though the doc says that usually he sees levels 700+ for carcinoid. And the scans, octreoscan and CT, have been normal, without any liver involvement. But the flushing is terrible! I hope this thread will continue--any one ever get deep flushing without carcinoid/mastocytosis/pheo? Thanks again for the info. Jacob Hi Jacob - I, too have no diagnosis yet. I have similar flushing, and once had similarly elevated serotonin. Unlike you, I also had moderately elevated CgA but, when retested one month later at ISI labs (the most reputable for carcinoid testing) the CgA was in the lower third of normal range, and serotonin was just within normal range. Serotonin levels can bounce around (it can become elevated from improper handling in the lab), but CgA is stable, so my variable results are confusing. I have tachycardia when standing up after lying down. It lasts about 5 minutes, but does not occur most of the time. Like Bufalogirl, the same carcinoid expert told me I did not have carcinoid. Even with what he calls IBS, and my varying blood test results, he does not think it's carcinoid. I DO think it's carcinoid! My octreoscan and MRI of liver were normal, but as bufalogirl said, it is not uncommon to have many normal scans and normal blood tests, and end up having carcinoid. I suggest retesting serotonin, CgA and testing for pancreastatin, which is supposedly much more sensitive than CgA. ISI is the best lab to use for CgA and pancreastatin. It wouldn't hurt to get other markers tested too, every 6 mths. People often go 5-10 yrs or more with symptoms and no diagnosis..... Lori333
    Lori333 10 Replies Flag this Response
  • Hi all,The flushing has greatly subsided, though it is still present at times, especially during exercise. The POTS and subsequent symptoms (tachycardia upon standing, etc.) have also dissipated. I can't really attribute this to anything except for time. It is likely I had some damaged nerves. I was told by doctor's that there is no need for further testing for carcinoid, unless the GI symptoms start up again. Thanks for all the posts. I will follow this board every now and again to see how you all are making out. Just know that my symptoms were fairly extreme, and have changed suddenly without no real known reason. There's always the chance yours will do the same. ThanksJacobHi Jacob - I, too have no diagnosis yet. I have similar flushing, and once had similarly elevated serotonin. Unlike you, I also had moderately elevated CgA but, when retested one month later at ISI labs (the most reputable for carcinoid testing) the CgA was in the lower third of normal range, and serotonin was just within normal range. Serotonin levels can bounce around (it can become elevated from improper handling in the lab), but CgA is stable, so my variable results are confusing. I have tachycardia when standing up after lying down. It lasts about 5 minutes, but does not occur most of the time. Like Bufalogirl, the same carcinoid expert told me I did not have carcinoid. Even with what he calls IBS, and my varying blood test results, he does not think it's carcinoid. I DO think it's carcinoid! My octreoscan and MRI of liver were normal, but as bufalogirl said, it is not uncommon to have many normal scans and normal blood tests, and end up having carcinoid. I suggest retesting serotonin, CgA and testing for pancreastatin, which is supposedly much more sensitive than CgA. ISI is the best lab to use for CgA and pancreastatin. It wouldn't hurt to get other markers tested too, every 6 mths. People often go 5-10 yrs or more with symptoms and no diagnosis..... Lori333
    Anonymous 42,789 Replies Flag this Response
  • Hi all,The flushing has greatly subsided, though it is still present at times, especially during exercise. The POTS and subsequent symptoms (tachycardia upon standing, etc.) have also dissipated. I can't really attribute this to anything except for time. It is likely I had some damaged nerves. I was told by doctor's that there is no need for further testing for carcinoid, unless the GI symptoms start up again. Thanks for all the posts. I will follow this board every now and again to see how you all are making out. Just know that my symptoms were fairly extreme, and have changed suddenly without no real known reason. There's always the chance yours will do the same. ThanksJacobHi Jacob - That's great news about your symptoms subsiding. Mine too (much less flushing and no GI symptoms for about 6 months). Could you tell me if any of your doctors were carcinoid experts -- and if so, who they are? Also, what blood tests besides CgA and serotonin have you taken, and how recently? My understanding is that carcinoid symptoms get progressively worse, not better or almost gone! I have not been diagnosed with anything yet but do strongly suspect carcinoid, although I am puzzled by improved symptoms. Please let me know if you are still improving, and I'd appreciate answers to my questions. Thank you.Lorraine (Lori333)
    Lori333 10 Replies Flag this Response
  • Hi Loraine,I have had numerous tests including 5HIAA (urine), Cga, serotonin, and scans including CT and an octreotide scan. You are right to assume that the carcinoid symptoms would not likely just 'subside' like ours have. I would name the carcinoid specialists if I remembered their names, but unfortunately I do not. As you probably already know, getting in to see an endocrinologist at an academic institution is your best bet. I have not been tested in well over a year. Do not struggle to understand your improvement of symptoms- accept them. Many things cannot be explained, be grateful for your improvements (which you will likely never understand, regardless of how many tests you undergo). Unless you have GI symptoms, which persist, I wouldn't suspect carcinoid- especially if other doctors have downplayed its significance.Hi Jacob - That's great news about your symptoms subsiding. Mine too (much less flushing and no GI symptoms for about 6 months). Could you tell me if any of your doctors were carcinoid experts -- and if so, who they are? Also, what blood tests besides CgA and serotonin have you taken, and how recently? My understanding is that carcinoid symptoms get progressively worse, not better or almost gone! I have not been diagnosed with anything yet but do strongly suspect carcinoid, although I am puzzled by improved symptoms. Please let me know if you are still improving, and I'd appreciate answers to my questions. Thank you.Lorraine (Lori333)
    Anonymous 42,789 Replies Flag this Response
  • Good Morning,I have been reviewing the posts on here. Your symptoms are exactly mine. I have had three doctors start the conversation by telling I do not have carcinoid before I even say what I am there for.When I explain I had a lymph node removed and biopsied followed by the surgical removal of the primary tumor at the National Health Institute..they realize I not only have carcinoid, but it is stage 4 in my liver and lymph nodes! It is amazing how quick I hear them jump to the dismissal. My grandmother died without proper treatment. I do not have diarrhea, so I am dismissed. I never have. They removed my gallbladder so I can handle the treatment for carcinoid, if I ever get insurance to get treatment. Another tumor is forming. It is hard to tell what causes your symptoms. I have Dysautonomia POTS (which mimics carcinoid == ugh), supraventricular tachycardia, mytrol valve prolapse (again, similar symptoms), dementia and I am being tested for Elders Danlos ....{forgive my spelling.. it is too early in the morning} I was diagnosed at 38 and I am 40 today. Can you get to Norfolk to see Dr. Vinik? The waiting list is long, but he is brilliant! Also check out Dr. Diane's videos at http://prettyill.com because it goes over some of the symptoms. ]I wish you the best!
    Anonymous 42,789 Replies Flag this Response
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    peleperezxx 86 Replies Flag this Response
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    peleperezxx 86 Replies Flag this Response
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    peleperezxx 86 Replies Flag this Response
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