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Carcinoid syndrome symptoms
I have had carcinoid syndrome symptoms for a few years. Had many blood tests and urine and scans, scopes first couple years. All neg. but I continue to have GI problems, I get flushed hot face, chest not as bad as face both feel hot like sun burn. My heart rate goes up though not severely and I can feel it pounding and sometimes skip beats. I had echocardiogram in 2016 normal. Nothing shows up but I know my symptoms are very abnormal and it is hard to eat.
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Hello @gtassithomas
I see that this is your first post in the NET discussion group. I see in other posts, that you have been diagnosed for SIBO. Has your doctor indicated that your current symptoms might be related to the SIBO or to any meds you are taking for SIBO?
Your symptoms certainly sound like carcinoid syndrome, but since your tests reveal otherwise. It might be good to look in another direction. Have you had a consult with an endocrinologist yet?
You also say that it is hard to eat. Have you lost weight as a result of the problems eating? Have you ever tried to journal your symptoms based on what you have eaten before having these symptoms and/or what you were doing?
Is there any history of this type of problem in the family?
You mention having scans and scopes. Could you describe these scans? Were they MRIs or CT scans? Were they of the abdomen, liver, etc.? Were your scopes both for the upper GI tract (endoscopy) and the colon (Colonoscopy)?
Many of us on Connect have had hard-to-diagnose health problems and we have done a lot of personal research. I would encourage you to do the same. You might also consider getting a second opinion from a multi-disciplinary medical center like a university medical school or a Mayo facility. There you can get the benefit of a team of specialists to look at your symptoms and work together to solve the problem.
If you decide to seek a second opinion at such a center, I would encourage you to read this discussion on how to discuss your problems with a new specialist, here is the link to that discussion, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765.
From personal experience, I would encourage you to go into your appointments with an open mind and not try to convince the doctors of any self-diagnosis, but to instead lay your cards on the table, so to speak. Tell them of the history of your problems and how you have approached a diagnosis with other medical teams, bring in any research that you have done and let them take it from there.
I look forward to hearing from you again. Will you keep in touch and provide updates as to how you are doing in your journey for an answer?