What should I do? Carcinoid symptoms but no answers.

Nothing else found thank goodness. It’s amazing what the vagus nerve can do to you and doctors never bring it up. Again, be your own advocate!

I didn’t have any genetics test done after the diagnosis, we started the monthly injections at that time.. Did the results of the genetic tests alter your treatment plan?

I am a year and six month passed first surgery, big neck job. Endocrinologists at Cleveland and MD Anderson recommended the genetic testing for top 16 or 18 mutations shortly after I was diagnosed. Four months before surgery. Partially because I have zero parental history from the former Soviet Union. During the first "big targets" test, SDHB double hit mutation was identified. First hit is hereditary most likely, second we are trying to find out. Radiation exposure in the military, Burger King, complete unknown. SDH A, B, C, D, and AF2 are at the top of the list to cause NEC. Also, since SDH complex is supposed to metabolize (convert energy from food to energy for cells, especially T-cells fighting inflammations, infections, there are few things your doctors will want to look it. My treatment plan is still a work in progress. Like many here I have been miss-diagnosed before (liver failure, auto immune disorder, and even shingles). At least picture today is somewhat clear to work on the treatment and quality of life plan: double SDHB mutation, Carotid-Vagal Paraganglioma surgery resulted in First Bite Syndrome, some hearing and muscle control problems on the surgery side. A year after Paraganglioma surgery we found a microscopic baby Pheochromocytoma in my adrenal gland. Lost my to bridges and eventually all my teeth to dry mouth cause by parotid gland on the left side becoming useless. I have weekly or bi-weekly blood pressure spikes in low 200s. It goes away after an hour normally. I have had dysautonomia diagnose at Methodist and Memorial Herman here in Houston. Trying (I swear I am) to learn to meditate, control diet, etc. Selecting right combination of meds has been a hardest one. I responded horribly to nerve pain medication and beta-blockers. My doctors told me that knowing about SDHB mutation helps provide direction at least coming up with a treatment plan how to deal with this all. Blood pressure spikes are the most confusing. I have had them for the past three + years, since I got Johnson & Johnson shot. I started taking pictures of them and waving to prove to family and friends that I am not dead. Not as far as I know at least :-). This community is literally a light at the end of a tunnel. Thank you all for sharing !!!! I hope I can help somebody like people here helped me.

Forgot to add, former Olympic hockey goaltender. Not sure if it helps in any way. I don't think Soviets had the technology to build super athletes using NETs :-). Imagine some sprinter or power lifter with 3 times the normal amount of adrenaline, norepinephrine, and dopamine?

Did he have Covid 19 prior? I'm 57 with similar situation diagnosed at 54 1/6/23. I'd say my symptoms went on for 2 years after I had COVID.

He has actually never had Covid.
I do not think there is a link with Covid diagnosis (looking at the data available), however, pre-existing comorbidities and stress can potentially activate the neuendocrine system.
My husband's condition may have existed since at least 2015, when he was hospitalized for an infection and they noticed what looked like a cyst in the liver. But in the absence of symptoms and without the proper imaging (MRI, Dotate-PET), it was never followed up.

Hi Parker27
Re: your urine 5HIAA test, I had 2 and then by the 3rd thoroughly read the info (online) and the diet is quite restrictive for 72 hrs. prior to taking the test. The first 2 came back as normal as I might have ruined the results by not following the pre-test diet, but I am going in for a 3rd attempt next week.