Carcinoid syndrome symptoms

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?

Hi, is the flushing constant, any bad itching

I have bad itching bouts that come mostly at night. It attacks my chest, thighs and arms mostly. Only ice packs or cold shower helps to alleviate it. Disrupts my sleep at least twice most nights. I have Gr.2, slow growing pets for past 8 months.

Antihistamine doesn't help?

I've tried hydroxyzine for months and also benadryl. Only cold helps. Liver specialist says paraneoplastic effect of liver NETS. He has done a bland embolization of one lobe of my liver and wants to do the other.

I have this horrible itching also. My scalp is the worst. Top of my thighs above kneecaps, upper chest, neck, drives me crazy. I had a 3x3” area, upper chest that I had scratched so much it was starting to bleed. Was referred to a dermatologist, she tested & ruled out allergies so she biopsied chest & sent to Mayo for results. Results 4-6 wks later showed “nothing”. Antihistamines didn’t work so Dr prescribed a steroid cream that I use very sparingly & liquid drops for my scalp. Cold compresses also help to remove the heat. Skin is the most comfortable right after I have my Octreotide shot for at least a couple days; therefore I believe the itching is directly related to my GI Nets with Mets. I cannot tolerate the hot sun so I stay in the shade or indoors in AC. Hopefully my experience will help someone else.

i'm curious why antihistamines don't work, with whatever I have going on, they work, praying it's not carcinoid