Carcinoid Treatment - Tammy's Story - The Nebraska Medical Center

[@Afarmer690]

I'm in the beginning testing stage for carcinoid tumor. I've had vague symptoms for years, since at least 2015, I've seen multiple doctors for various symptoms...diarrhea, nausea, episodic flushing, extreme fatigue and over the last year or so I've developed 'asthma'. My pulmonary doc took the time to listen and agreed that carcinoid syndrome may be the issue as opposed to asthma. I'm hoping to have my 5HIAA results soon and no matter what, at least I will know where to go from there.

[@jordanpatoka913]

Adventurous Aardvark hi!! Are you still having symptoms? What was the result? I am having same symptoms

[@Afarmer690]

@@jordanpatoka913 I'm still having symptoms but my 24 hr urine test came back negative so my doc says it's unlikely that I have carcinoid cancer

[@jordanpatoka913]

Adventurous Aardvark thanks for the timely reply.. what is your next course of action? Feel free to email me if you don’t mind .. [e-mail]

[@ruthlaferriere4276]

I had symptoms for 4 yrs with Dr’s ignoring me for the most part. I went to Mayo Clinic in Jacksonville, FL where they were 1st to provide instructions when they had me do a 5HIAA 24 hr urine for Neuroendocrine tumors (NETs) with instructions to avoid beer & seafood for dinner & begin with 1st urine of the morning; the test came back negative. I had done the test before & over the yrs turned in 6 more of these urine tests with NO INSTRUCTIONS at all; all were negative for Neuroendocrine tumors. I then went to MUSC, a teaching hospital in Charleston, SC where 2 Dr’s in Internal Medicine Dept ordered the test & I rec’d a sheet with some pretty specific instructions. I have fibromyalgia, small fiber neuropathy, interstitial cystitis, trigeminal neuralgia so was on what I considered a lot of meds; partial list Xanax, Amitriptyline, Methadone, Topamax … on more now. I was instructed: 1. No medications that can stimulate or suppress my adrenal gland, or other organs that may produce hormones 2. No foods that would stimulate or suppress etc. 3. Nothing fermented (aged cheeses, wine, liquor, beer) life was OVER! 4. No CARBS PERIOD 5. No meats especially pork It took 8 wks to get off the meds, partly because the symptoms would come raging back. I had to give up most foods I ate as it turns out I normally lived on salads w/ nuts, dried fruit, aged cheese, avocados etc & everything I ate on my salad was in the ‘NO’ list. The other part was it takes 72 hrs to clear ur system of these foods. It came down to living on broccoli & cauliflower & nothing to drink but water for 96 hrs, the 72 hrs cleansing my system & the 24 hrs during the urine catch. Here is a website that offers ‘pitfalls’ of false test results if not given the right instructions for the test. Mine came back positive 3 times after doing it as instructed & negative once when I went back on meds & foods but just stopped 1 medication, Amitriptyline. It’s known for affecting these test results. No tumor 🙌 but now looking at Adrenal Fatigue … being stuck in ‘fight or flight’ mode. I am type of person under weight my entire life, had tachycardia since age 17, never slept more than 6 hrs as a child & 4 hrs as an adult but could eat more than most men & drink Heineken while guys drinking lite beer & last hrs longer than they did. I saw 3 endocrinologists to gain weight, the last had me on 3,500-4,000 calories a day & lifting weights. At 5’7” I got to 113lbs with muscle mass my BMI was 18 at age 38. I left hospital with 2nd child 7lbs11oz weighing 110lbs. Every job the boss would let ppl go saying I got more done in a day than anyone they had ever met could get done in over a wk & no they didn’t give me s portion of those salaries … in the beginning. I learned. Just always on the go, moving, exercising, lifting weights & thought it was the greatest life not sleeping it away. Now I am paying. Highlight the link below and select ‘look up’ then ‘Search Web’ OR copy & paste the entire link including all numbers on the bottom row. When u get to the 1st page, tap PURPLE HEADLINE … it will take u to the article. It explains false positives & advises 24 hr limitations of foods. But the hospital I was at was very specific in wanting a clean catch. After yrs of suffering & scared to death I did as they requested. www.sciencedirect.com/science/article/pii/S237606052030585X