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  • Advice? Possible Carcinoid Syndrome, Confused

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    Old 07-06-2015, 05:11 PM   #1
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    Vicksburg91 HB User
    Advice? Possible Carcinoid Syndrome, Confused

    Hello all. Im a 24 year old whose been in a medical saga since last September. It started with diahrrea and Iron Deficiency Anemia (ferritin 2, Iron 17). Iron IVs corrected the iron but Ive been in the ER about 19 times since for dehydration from the diarrhea, which is sometimes over 20x a day. Along with flushing and wheezing- I was told I had bronchitis on 10 separate occasions. Also have episodes of high and low blood pressure and my resting heart rate will shot up to 140. Along with low Vitamin D, Hypercalcemia, low phosphorus.
    I was eventually sent to a Endocrinologist in late April who feels I may have Carcinoid Syndrome. I had middle high Chromogranin A and 5 HIAA tests showed a 4.8 on one occasion and 986.6 on second test (under 6 is normal, so that was sky high). I just had a OctreoScan/SPECT scan recently and my doctor is going to review the results. It was clear on the OctreoScan part but the SPECT part noted a 2 cm by 1.4 cm "soft tissue nodule" on my liver noted as "Soft tissue nodule anterior to the left liver lobe. Given the similar density to the liver, this could represent an exophytic malformed portion of the left liver lobe. Non Octreoscan avid neuroendocrine tumor or lymphadenopathy is also considered but less likely. Followup contrast-enhanced hepatic MRI could be obtained for further characterization"
    My question is what is a "exophytic malformation?" Is that some benign thing that is not worrisome? Also does the OctreoScan results rule out Carcinoid? Ive read that they can often miss stuff. Im hoping my doctor will suggest a next step/ diagnosis in the next few days but this has been on my mind a lot since my symptoms and nausea are awful.

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    Old 07-07-2015, 03:34 PM   #2
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    neuroproblem HB Userneuroproblem HB Userneuroproblem HB User
    Re: Advice? Possible Carcinoid Syndrome, Confused

    your symptoms do correlate exactly carcinoid syndrome. exophytic malformation, is a fancy medical terminology for outgrowing tumor. The next step would be the suggested MRI, to see if there is cancer in any of your digestive tract or other organs.

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