How many doctors did you see to get to your NETS diagnosis?

@pamela1685
It sounds like the endocrinologist who tested for intrinsic factor antibodies was a remarkable doctor! He was able to predict your future health issues 20 years ago. Is he still in practice?

Yes, I agree, looking good is OK with me as well. I remember talking to one person who complained about it. She felt that she didn't get much sympathy from friends and family because she didn't look like a cancer patient.

I'm glad that you found this community. I hope you will continue to post. You have an encouraging story of advocating for yourself. We all need to hear these stories.

I had 3 ER visits where there were a variety of inconclusive diagnosis. Not sure if anyone else had this but I couldn’t keep food down. Every time I ate there was a strange symphony in my gut that always ended up in the loss of my meal. By the 4th ER visit at a different hospital thank god they decided to remove my gall bladder. I knew this was the cure or hoped so. Within a week of being released from my gall bladder surgery I was back in the ER laying there crying and praying for them to believe me. Finally and I don’t know how many doctors later a female surgeon did an exploratory and found it. By then of course had munched through my intestine wall. So far it has traveled to my ovaries and liver. Just started chemo a few months ago
More good days than not😁

My former endocrinologist Dr. Kenneth Woeber was the head of UCSF endocrinology when I last saw him 20 years or so ago. He was already in his late 60s or early 70s then, so I'd doubt that he's still in practice. But I think he was working on a paper then about the high incidence of autoimmune atrophic gastritis among those with Grave's since that, too, is an autoimmune disease.

I just read your profile, and was humbled by all that *you're* going through. Thank you for moderating this site, and for all your warm responses despite all your health challenges, too. I hope you're doing well.

I appreciate your kind remarks, @pamela1685. So many of on Connect have experienced a myriad of health challenges and I suppose that is what keeps us reaching out to others to provide support to those who are like us! I don't believe that any of us should ever walk alone in times of health crises.

I am doing well. In terms of health issues, it seems to be under control for the time being. I live a balanced lifestyle which make a difference.

I hope that you will continue to post.

I'm so glad that things are under control, and that you're doing well. Please take gentle care of yourself. You're a blessing, and we all need you. Thank you so much for being there for us!

As a GI nurse for 32 years, now retired. I can honestly say that no amount of money would make me return to the medical profession.
Unfortunately it's now a money making business and no longer about patient care.
I have a strong suspicion of Gastric NET and have been advocating for certain tests to be done but no one seems to listen.
I'm also a long haul Covid X 3 and basically all organs affected except for lungs 🙌.
I spent 2 weeks at Mayo in Minnesota for testing and unfortunately the only diagnosis I received was inconclusive.
If you are not on PPI's (omeprazole) you should have your gastric levels checked.

Praying for you 🙌

I'm sorry about all that you're going through. I hope you get a conclusive diagnosis soon.
I have autoimmune atrophic gastritis, so I produce no gastric acid. My most recent gastrin level was 565, but it has been as high as 800 in the past. (Normal level is under 115. )

Have you had a 24hour urine done? When you have an upper endoscopy w/biopsy they have to do a special stain to R/O NET's.
Just stay vigilant and continue to be your own advocate.

My NET’s were discovered by my gastroenterologist during reviewing a CT scan after I had a diverticulitis attack. She then scheduled a MRI, which increased her suspicion of the Tumors on my Liver. Referred to Mayo, Jacksonville, where they had the tumors biopsied, and confirmed the diagnosis as NET’s. This all happened in a month’s time. Prior I was having sporadic diarrhea for quite a few years and some discomfort a my lower right side, was treated with meds sometimes they helped(so I thought). Immediately after the biopsy I had a PET scan to determine origin. It was in my small intestines.. So I really don’t know how long I’ve had it , but after seeing the tumors it was diagnosed within a month..I assume I’ve had it quite a while since it was in the advanced stages!

I already have NET. There's nothing to rule out.