What is Carcinoid Syndrome
Carcinoid syndrome refers to the array of symptoms that occur secondary to carcinoid tumors. Carcinoid tumors are discrete, yellow, well-circumscribed tumors that can occur anywher...
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Not diagnosed at this point but need info badly
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hello....I joined this support group in the hope of gaining an insight into carcinoid. I have having symptoms and have had one slightly elevated Chromogranin A (reference range 0 - 50) My number was 62. My physician is not concerned about it because my scans (including an Octreotide) have been negative with the exception of what they have determned to be a hemangioma on my liver (however it did not display the normal characteristics of either the hemangioma or a carcinoid tumor)
My question is...I had one episode last year of extreme flushing and a rapid heart rate with abdominal pain. Since then I have constant URQ pain below ribs and through to back. I no longer turn red with flushing but experience numerous sweating episodes throughout the day and night. The nighttime is especially bad. I am completely heat intolerant and in addition I have muliple joint painand daily lightheadedness. Has anyone ever had this with carcinoid? Should I push for further blood testing? This doctor seems so nonchalant about it.....I'm very scared....time keeps going by...and no firm answers. Thanks so much in advance for your reply. Posted on 07/12/09, 10:07 am |
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I also have the sweats. They only attack my head and back of neck. It's embarrasing when I am out because my hair is soaked when this happens.
Have you had a 24 hr urine test done? or a blood test for serotonin? They are both indicative for carcinoid. They say you don't get the symptoms until it has spread to the liver. I had the flushing for years but had surgery to remove the tumors. I still have a bunch on the upper part of my body and need another surgery but am nutritionally challenged since 2006 surgery. My tumors did not all appear on the Octreoscan. They found the primary when they opened me up. This is a disease that very few doctors know anything about. I suggest you get on the internet and find a specialist. Mine was Dr Woltering in New Orleans. You need someone who knows more than you know! Good luck! Rhonda 
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Hello Rhonda...Thanks so much for responding. Yes, I did have a slightly elevated serotonin which the doctor dismissed. I also have a slightly elevated chromogranin A. I did some research and I called Dr. Woltering and also Dr. Warner in NYC which I am close to. I am going to pursue this with a specialist as you suggested. Thank you so much.
I am a great believer in prayer and have a strong faith...I'll keep you in my prayers. I am sorry to hear of your digestive/nutritional challenges. Have you thought about alternative methods (ie: Johanna Budwig Protocol) I have heard some promising details from others who are currently on it...There are many different alternative approaches. If I am diagnosed I will most definitely incorporate some of the nutritional support methods. I wish you the very best....Most Sincerely, Claudia
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Hi Claudia,
I have heard wonderful things about Dr. Warner and his group up there. I am happy you will be seeing a specialist. I, too, am Christian and depend on my faith for a lot. You will be in my prayers. Please keep me up to date and ask if you need anything I can help with. Rhonda
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Hello Rhonda....just checking in. I have an appoitment with Dr. Warner next Tuesday at 10:00 am. Hoping I will get to the bottom of things.
Hope you are having a good day today....Thanks again for your concern and well wishes! Please keep in touch...I will do the same. Many Blessings.. Claudia
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