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Carcinoid Syndrome & Autoimmune Diseases.
Neuroendocrine Tumors (NETs) | Last Active: Jul 20, 2023 | Replies (10)Comment receiving replies
@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and from experience, I know that they are hard to detect outside of the Octreoscan. It sounds like you have educated yourself about this rare disorder. I'm glad to hear that you have a knowledgeable doctor in the area where you live. Has your doctor run the blood tests like Serotonin and Chromogranin A (or G) levels? My carcinoids have all been in the upper digestive tract and have been originally found by EGD, however, I have had the Octreoscan. Were you aware the NIH has clinical trials using the Galliium 68? You can check their website if interested. This type of scan picks up more than the Octreoscan does. Please feel free to share with us more of your story as you feel comfortable (such as length of time of your carcinoid diagnosis, surgeries, etc.). We are looking forward to getting to know you better. Teresa
Replies to "@joannem Hello and welcome to Mayo Connect. Yes, carcinoids are an unusual type of cancer and..."
opps i was originally diagnosed with crohns disease. Getting my 6 month o-scans next week and will be able to update when I see my doc at the end of the month. I will mention the tests that you mentioned to get a better understanding of them. I no longer suffer with much diarrhea since I started the sandostatin. I take 2 Imodium every morning and most of the time that is good enough but I am allowed 8 a day. I have never had to take more than 4. I am very happy with that as after my surgery for about 6 months, it was constant every day. I have improved so much in the last 2 years and considering where I was, I am doing very well. I suffer mostly from fatigue which limits how much I can get done it a day, sometimes not much.
I have also found that taking a probiotic is very helpful
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I would have to pull out my reports to see exactly what tests she runs. I know all about all the other tests as There is a local support group that I belong to and many of them are trying to get these tests. I am the "most well" of all the members. Some of them have had a hard time getting treatment that was given to me almost immediately. I feel like a first grader learning all these terms. I know that I have had symptoms for at least 15 years and was originally diagnosed