Discussions By Condition: Medical Errors

flushing, fainting, diarrhea, and IBS - puzzle solved

Posted In: Medical Errors 8 Replies
  • Posted By: wildmonkeys1
  • June 12, 2010
  • 06:04 PM

I went through years of counseling for conversion disorder and somatoform.


My health complains were: flushing, fainting, diarrhea, abdominal pain, and IBS. I had also been diagnosed with orthstatic hypotension (tachycardia arrhythmia & low bp).

Carcinoid Cancer is a very rare form of cancer and can be difficult to find even when medical professionals are looking for it. Some tests to help determine Carcinoid Cancer: CgA, 5-HIAA 24 hr urine test, CT scan (doesn't always see it), and Octreotide Scan (aka OctreoScan, 85% accurate). Carcinoid Cancer is often misdiagnosed for years.

PLEASE consider this before accepting a diagnosis of conversion or somatoform disorder. By the time they found my Carcinoid Cancer, I was at stage 4 (terminal, metastasis to the liver) with the beginning stages (leaky right-sided heart valves) of Carcinoid Heart Disease.


Thank you,
Jennifer Holm
Stage 4 Carcinoid Cancer patient,
Advocating Carcinoid Cancer Awareness

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8 Replies:

  • sorry to hear your story. Too many patients are told their symptoms are all in their heads (esp England, i wonder if you are in England) when they have serious issues. I'd think flushing would indicate a physical issue. Orthostatic issues too are indicative of something physical. i hope your story helps another.
    taniaaust1 2267 Replies Flag this Response
  • Jennifer - I agree with your ranting. I had carcinoid cancer tumor removed. I was misdiagnosed as having irritable bowel and rosacea. It was just luck I went to a new doc that listened to my symptoms and decided to do a colonoscopy even though I wasn't at the 50 yr old mark yet. Hope you're doing ok. Have you joined the Carcinoid ACOR listserve?Linda
    Anonymous 42789 Replies Flag this Response
  • I went through years of counseling for conversion disorder and somatoform. My health complains were: flushing, fainting, diarrhea, abdominal pain, and IBS. I had also been diagnosed with orthstatic hypotension (tachycardia arrhythmia & low bp). Carcinoid Cancer is a very rare form of cancer and can be difficult to find even when medical professionals are looking for it. Some tests to help determine Carcinoid Cancer: CgA, 5-HIAA 24 hr urine test, CT scan (doesn't always see it), and Octreotide Scan (aka OctreoScan, 85% accurate). Carcinoid Cancer is often misdiagnosed for years. PLEASE consider this before accepting a diagnosis of conversion or somatoform disorder. By the time they found my Carcinoid Cancer, I was at stage 4 (terminal, metastasis to the liver) with the beginning stages (leaky right-sided heart valves) of Carcinoid Heart Disease. Thank you, Jennifer Holm Stage 4 Carcinoid Cancer patient, Advocating Carcinoid Cancer Awareness Hello Jennifer... So glad I came across your post. I have had more than two years now of the same symptoms you described. I have been tested for carcinoid and both the octreo scan and the ct scans have been negative. I have had the CgA test 3 x and the 5HIAA test along with the pancreastatin test. All were normal except one CgA was slightly elevated...I had another after that that was high normal range. The doctors are dismissing it but my symptoms are classic. I have read in my internet browsing on the subject that there are others who have similar circumstances...Any advice? Can you tell me if your blood tests and urine tests were elevated at the beginning? Any advice would be appreciated. Do hope you are doing well and the outlook is brighter now!
    bufalowgrl 27 Replies Flag this Response
  • Hi Jennifer. I hope you're doing okay. Thank you for pointing out the misdiagnosis problem at the Wikipedia psychology project. I have added it to the differential diagnosis section of the IBS article.Anthony
    Anthony Cole 1 Replies
    • December 20, 2010
    • 05:35 PM
    • 0
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  • Hello Jennifer... So glad I came across your post. I have had more than two years now of the same symptoms you described. I have been tested for carcinoid and both the octreo scan and the ct scans have been negative. I have had the CgA test 3 x and the 5HIAA test along with the pancreastatin test. All were normal except one CgA was slightly elevated...I had another after that that was high normal range. The doctors are dismissing it but my symptoms are classic. I have read in my internet browsing on the subject that there are others who have similar circumstances...Any advice? Can you tell me if your blood tests and urine tests were elevated at the beginning? Any advice would be appreciated. Do hope you are doing well and the outlook is brighter now! Hi you guys! (Jennifer, Buffalowgirl, others), I have had classic symptoms for 2.5 years with both of my pregnancies. The expert in our area Dr. Vinick in Norfolk, Va. says that you can have carcinoid for 5 years with all the hormones that cause the symptoms, but not see it on the octreotide scan for the first 5 years. So, as long as you have the symptoms.....do not give up getting checked. If you can, see an expert in the feild of carcinoids. Sincerely-Amy
    Anonymous 42789 Replies
    • January 21, 2011
    • 07:16 PM
    • 0
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  • Hi you guys! (Jennifer, Buffalowgirl, others),I have had classic symptoms for 2.5 years with both of my pregnancies. The expert in our area Dr. Vinick in Norfolk, Va. says that you can have carcinoid for 5 years with all the hormones that cause the symptoms, but not see it on the octreotide scan for the first 5 years. So, as long as you have the symptoms.....do not give up getting checked. If you can, see an expert in the feild of carcinoids. Sincerely-Amy Hello Amy...Thanks for posting and sharing your information. I was just wondering a few things...if you don't mind. You mentioned having classic carcinoid symptoms with both of your pregnancies...does that mean that when you weren't pregnant your symptoms cleared up? Do you have the Octreotide scan? What exactly were your symptoms and do you still experience them? Have any of the blood tests for carcinoid come back elevated for you..such as CgA, Pancreastatin, 5HIAA etc? I went to see Dr. Warner (expert in carcinoid) and he said that he felt I did not have carcinoid because my CgA was also slightly elevated once. I have taken it two or three times along with a number of other tests. No one seems to know what the problem is. I DO NOT have the classic diarrhea like others with carcinoid do...much more the opposite! Can you tell me if you have palpitations? Dizziness or weakness? What did your doctor in Norfolk suggest as far as continued follow up in the absence of a definitve diagnosis? Thanks in advance...Look forward to hearing your response. I am still scared stiff over all of this...and it doesn't help that I feel so poorly all of the time.
    bufalowgrl 27 Replies Flag this Response
  • Hello Amy...Thanks for posting and sharing your information. I was just wondering a few things...if you don't mind. You mentioned having classic carcinoid symptoms with both of your pregnancies...does that mean that when you weren't pregnant your symptoms cleared up? Do you have the Octreotide scan? What exactly were your symptoms and do you still experience them? Have any of the blood tests for carcinoid come back elevated for you..such as CgA, Pancreastatin, 5HIAA etc? I went to see Dr. Warner (expert in carcinoid) and he said that he felt I did not have carcinoid because my CgA was also slightly elevated once. I have taken it two or three times along with a number of other tests. No one seems to know what the problem is. I DO NOT have the classic diarrhea like others with carcinoid do...much more the opposite! Can you tell me if you have palpitations? Dizziness or weakness? What did your doctor in Norfolk suggest as far as continued follow up in the absence of a definitve diagnosis? Thanks in advance...Look forward to hearing your response. I am still scared stiff over all of this...and it doesn't help that I feel so poorly all of the time.hello i was wondering if anyone has the palpitations and racing heart also and i have severe flushing on my chest and i have so many other terrible symptoms i only had 5HIAA 1 time many years ago when i researched many diseases and found this and alot of the symptoms match but i have more also andi have seen many doctors and the first things they think about are carcinoid and pheocromocytoma im scared all the time with all these symptoms and i have the worse reflux anyone has ever had and i go with out a voice alot and have strange fumes that coem up and make my neck break out in a rash and so much more if anyone will hear my story and maybe help me even though i have been to many doctors i will not give up i have chest pains and breathing problems so bad but it feels as though it is coming from my stomach i know this sounds strange but its true i fight for air some days and have like squeezing tightness in the upper abdomen and now and the doctor said i will have heart tests next week so if anyone can talk to me about this and where there is a good doctor for this disease i would like to talk to you thank u!!
    Anonymous 42789 Replies Flag this Response
  • Hello and I know you posted this several years ago but if you could getback with me as I got chills when I read your post as it sounds like it could have came right out of my mouth but I have had bizzare symptoms for 38 years and they never go away but sometimes better than other time and its back with a vengeance.Could you pleas get back with me as I would like to see if you have got more info or better/worse and would like to give info that I might have Please if you get read this please please get back with me

    Anonymous 2 Replies Flag this Response
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