What should I do? Carcinoid symptoms but no answers.

Got it!
He was expereincing flushing and first they tested the free testosterone whic was below normal, but not severly so. However, the total was very high, around 1300..as was SHBG.
Incidentally, he has had itching issues for many many years and takes Xygal every day. We always thought its allergies, but perhaps it had something to do with his NETs.
Feel free to message me if you have more questions

Did you get any closer to a diagnosis?

@parker27: I know you don’t feel like smiling, but in reading your symptoms they were the same as mine at age 50. Episodes of overheating to the point of abtuse sweat running down my face & back, feeling like I was going to explode! Mental clarity no longer taken for granted… fuzzy brain feeling! Much embarrassment in social settings when I felt the internal temps rising!
Could it be? I believe you may find that your hormones are in flux, at least that was determined to be my dx culprit!
I was diagnosed as “Menopausal”.
:-). Bette. dbamos1945

Well, I'm a male and my flushing is dry, no sweating at all.

@nicodangelo46, welcome. I believe your question was for @parker27, asking if he was able to confirm a diagnosis. I'll let him respond.

In the meantime, @nicodangelo46, I wanted to ask, are you currently in the process of diagnosing/ruling out carcinoid cancer? How are you doing?

@parker27 My flushing was also dry just intense heat facial only..

You should have a PET scan and then have a Dotatate PET scan. There are blood tests that could help identitfy problems with your blood as well. If your doctor is dismissive, get a new doctor. I had a doctor tell me to wait and see about the nodules found all over my lungs, abdomen and lymp nodes and two years later I have been diagnosed with NETS along with other serious growths that need radiation therapy because they are blocking my airway. Fight like a mad dog--you know better than anyone how you feel.

@mimighosh

@mimighosh thank you for sharing your story. How is your husband. My husband at 49 yrs old had a SI resection due to a blockage in Jan 2025 after a trip to the ER for what we thought was a gall bladder attack. Biopsy showed SI NET in Ileum → G1 → Ki-67 <3% → pT3N1 → 10 of 17 lymph nodes positive → negative margins. So far no evidence of distant metastasis. PetScan in Dec2025 showed a 5mm node lighting up and in Jul2026 same area but 8mm and now lighting up at a second adjacent point. His oncologist said wait and watch but we reached out for a second opinion in which the new hospital reanalyzed his tumor samples and this week reclassified as Ki 67 10% which makes it a Grade 3 now so growing faster than we first thought. Yesterday I posted a question about side effects of Lanreotide. My husband read many negative comments on Reddit about bad side effects such as diarrhea, depression, very sore injection site etc. Any insight would be greatly appreciated.

Hello. My husband has not had too many side effects from his monthly Lanreotide shots. He has a bit of gas and loose stool for a day or two. But he is well enough to be able to go to work even on the day of the shot. The injection site soreness is very dependent on the experience and skill of the nurse. You really need nurses who are trained in this particular shot because it has to be warmed to room temperature for 20 min or so and administered very slowly. In a large hospital we do not always get the same nurse. Most have been really good but there are occasions when the warming or the administration was not done right resulting in pain. He takes Tylenol after the injection, this is preferred over Advil.
We have learned to advocate for ourselves and if we get a new nurse we actually ask if they have experience with Lanreotide. Sometimes they do not like that but I think it’s very important that we get it done correctly.