Carcinoid Syndrome and Serotonin

When intestinal neuroendocrine tumors (NETs) metastasize to the liver, people can develop carcinoid syndrome, which can also occur with lung, ovarian, and other types of NETs. Dr. Lowell Anthony, Dr. Aman Chauhan, Dr. Shikha Jain, and Dr. Edward Wolin explain carcinoid syndrome and why it occurs, how it can be confused with other health conditions, its impact on quality of life, and treatment options.

[@latasha3472]

Been dealing with this disease for five years and it’s been hell on earth

[@dominikjericho5749]

you probably dont care but does anyone know of a method to get back into an Instagram account? I was stupid forgot the login password. I would appreciate any tricks you can offer me

[@thaddeushezekiah3167]

@Dominik Jericho instablaster :)

[@dominikjericho5749]

@Thaddeus Hezekiah i really appreciate your reply. I found the site on google and Im in the hacking process now. Takes quite some time so I will get back to you later when my account password hopefully is recovered.

[@عبدالرحمنمحمد-ط2و7ز]

Please, I suspect that I have carcinoid, intestinal serotonin, high in urine and blood. Unfortunately, I had pain in my intestines, and then severe diarrhea and white fat like balls in the stool, and then burning pain in my flesh and bones. My case puzzled the doctors, and they did not know where the carcinoid was spread. I did a gallium image and stratified and nothing showed up. Can you tell me how you were diagnosed?

[@scottkaercher1733]

I have carcinoid syndrome and they haven't found the tumor or tumor's yet. I got diagnosed in 2008 and its 2021 and they still haven't found it. It didn't respond to the octreotide so they took me off it and now the dr says we wait until it shows up then they can cut it out.

[@FMHammyJ]

I have been suffering with sweating and flushing for about a year and a half.....I have also had bouts of diarrhea, and also bouts of wheezing(sometimes so bad I have to use a salbutamol inhaler), anxiety at times, and rapid heartbeat...I finally suggested to my doctor after researching online that could we investigate carcinoid syndrome(the one thing he did not test for). He sent me to an internal specialist, and he has ordered a 24 hour urine 5-HIAA test to check for carcinoid syndrome. If its positive, I will be having a word or two with my GP.....

[@CarcinoidNETs]

Hi FMHammyJ, we're sorry to learn you are having issues with your health. Were you told the foods and medications to avoid before the 24-hour urine test? Here's more info: bit.ly/24HrUrineTest. Please let us know if we can be of help in any way.

[@crw7539]

I am in the early stages of diagnosis; I have the flushing most times, but no GI symptoms. I have vertigo-like symptoms with nystagmus and increased heart rate and blood pressure. The vertigo has been ruled out and 2 labs were marginally positive, the 5-HIIA and the Chomogranin-A; a barium contrast CT of the abdomen was also negative. I am waiting to be able to schedule a colonoscopy & gastroscopy, but it is slow going and it is the uncertainty that seems to be worse than the symptoms.

[@crw7539]

Anecdotally, I have found that I can blunt the vertigo-like episode by carefully using a half dose of Azelastine nasal spray and 12.5 mg Benedryl when I feel the episode starting, which may include the flush, but mostly a slight headache and vision changes. I still feel bad for several hours but not as sick as before, I have to get into bed and close my eyes for several hours.

[@latasha3472]

Did they ever find where your primary tumor originated from

[@trinidadruiz5801]

Do you have inf in espanish

[@CarcinoidNETs]

Hi Trinidad, the information we have in Spanish is our Basic Review. We hope to have a newer version translated in the coming year. www.carcinoid.org/for-patients/general-information/un-analisis-del-cancer-carcinoide/. You might also be able to find some information in Spanish on the INCA, International Neuroendocrine Cancer Alliance, website, incalliance.org/category/awareness/. There is a wonderful organization in Spain, NET Espana, and their website is in Spanish, netespana.org/. Hope this helps!

[@CarcinoidNETs]

Here's info about NETs you can download in Spanish, incalliance.org/net-info-packs/.