So, now just still waiting, losing my mind being worried and new quest

Posted by jsudjian @jsudjian, 2 days ago

Number 1......I have realized my stool has been kind of chunky and yellowish for a couple months.......so I read that can be from stress alone, but did any of you have that, because I mostly just see diarrhea from others...

2.....remember my only real symptoms are the constant flushing, itching, now I also get itchy a bit all over, but if I flare up worse, it's my head that itches most. At night after some beers, which I'm normally fine with, however once I eat also, no mater what I eat, I then get more flushed, warm, glassy tired eyeballs. More itchy......I was getting faster heart rate, but some of that can be from the panic and stress

3.. if I skip food altogether in morning, I start getting higher blood sugar, i'm in type 2 now but trying to reverse on my own like I usually do by getting back in shape, but anyways, so I eat anything, low histamine or not, then suddenly insanely itchy head and more flush

3.. All these foods have shown negetive for allergy in blood work, but no matter what I eat, I get worse flush and itch.

4...again no diarrhea, no pain, no fatigue,

5.. 24 hour urine was normal, but, it only tested serotonin and cortisol
Tryptase was normal in blood work about 5 weeks back. Liver shows good except higher enzymes but I been drinking and eating and no exercise for over a year so they know I reverse that fast too.

6.. Going now to Endo, GI, and Alergist again, but taking forever with insurance

7.. Thinking about temporary disability but I only have basic through work, I'm in CA USA how am I supposed to pay my bills, but the stress and worry and itching and flushing and blood sugar yuck feelings and depression anxiety is killin me cuz I'm solo trying to do all this.

8.. again I had a CT in 2023 looking hard for tumors that caused my low testosterone after the virus, but nothing found, I know a PET is the real way but can I feel any ease knowing that at least, and that 24 hour urin was normal, how about the fact that if I have NET, it seems to be a histamine type, then what

9...if I have one that hopefully hasn't been around for ever, and these are my only symptoms, is there a good chance of removal

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jsudjian | @jsudjian | 1 day ago

If anyone has new thoughts Im all ears

lindabees | @lindabees | 6 hours ago

I'm so sorry you're so unwell. I know many people have struggled with symptoms prior to being diagnosed.
My husband's tumors are non functional so he doesn't have any syndrome, so I'm afraid I can't help with anything related to that. But I do know that most people with carcinoid syndrome do see evidence of that in the 24 hour urine test, so the fact that yours was negative would seem to be good news.
There is a net specific pet scan, gallium 68, that covers the entire body. If there are any net tumors with SSTR receptors, that scan will pick them up. While some nets don't have receptors so they don't light up, the majority do have the receptors making this pet scan a particularly helpful tool.
I understand your stress and anxiety while looking for an answer. It's difficult to address any what if questions without a diagnosis, however. In the meantime, I would suggest that you focus on what you can control to improve your overall health. Good underlying health is so important to he able to help your body fight any disease. Try to focus on improving your basic health by eating right, exercising and minimize alcohol intake. Maybe also seek out a counselor to help you deal with the stress that you are under since stress does have a big impact on your health.
I pray that you find an answer amd start feeling better soon!

lanierj1 | @lanierj1 | 6 hours ago

In reply to @jsudjian "If anyone has new thoughts Im all ears" + (show)

A friend had the itching you describe for 2 years and had been seen by several specialists with no answers other than a histamine reaction before it was discovered his bile duct was clogged after becoming jaundiced and having discolored stools. In the past 1.5 years, he has had 3 surgeries to put in or change out stents in his bile duct. After the first stent, the itching was immediately gone, and BM returned to mostly normal. During the last surgery, the surgeon noticed his pancreas was inflamed and biopsied it. The results were positive for the presence of a tumor. It was caught early and is treatable with Chemo and surgery. I hope this doesn't cause you any more anxiety. I'm just hoping it may help in your search for answers.