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What should I do? Carcinoid symptoms but no answers.
I'm a 41 yr old male and for the last 16 months I have had almost daily flushing (face, ears, chest, upper back/shoulders) episodes along with slight tingling in my extremities. I have had more tests than I could ever imagine. I DO NOT have diarrhea, wheezing, heart palpitations or any other carcinoid syndrome symptoms. Aside from a little weight gain. After a few tests ordered by my GP that didn't provide any answers, I brought up the possibility of carcinoid syndrome and he ordered urine 5HIAA (2.1 mg/l) and chromogranin (61 ng/ml). Both came back within range. I've had MRI's on thoracic, cervical, and brain. I've had abdominal and chest ct's as well as an ultrasound on my liver. Really the only thing that was found was that I have mild fatty liver and 3 small pulmonary nodules on my lungs that have remained stable for the last year. My ferritin is also slightly elevated. I've since seen an endocrinologist who ordered more tests (Cortisol, TSH, T4 Free, Metanephrine Free plasma, IGF-1, Tryptase, another urine 5HIAA) and they all came back normal. I've seen a couple dermatologists who have treated me for Rosacea, but no creams or anything has helped. I'm currently on a clonidine patch to help with the flushing, but I've not seen much improvement. I've even had an autonomic reflex test and a sweat test and neither of them indicated anything abnormal. So, I am left with daily flushing episodes triggered by working out, anxiety, sun/heat, sometimes alcohol and sometimes it happens for no reason at all, just laying in bed at night.
My concern is that I do indeed have carcinoid syndrome, but the tests and scans have not identified anything. I've brought up to the GP how hard it can be to diagnose NET's and that they are often missed on CT scans, but he basically has dismissed me as being overly worried and having anxiety. I really don't know what to do....I just can't accept the fact that at the age of 40 I just started to randomly flush for no reason at all. It has impacted daily life and made social situations much more difficult to deal with.
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I would see a NETS surgical oncologist & ask for a dota PET scan.
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3 ReactionsI would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my small intestine and spread to my liver. I had a biopsy diagnose what the tumors were. I was getting the hot flashes 25-30 times a day, I get Ocreotide injections monthly and that seems to keep the hot flashes under control.. my flashes were only facial..
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3 ReactionsHi,
I'm sorry you've had to go through so much and have no answers. What about a PET scan? And I'm not being facetious here, but if you could find a really good acupuncturist they actually might have some answers or at least suggestions.
Mollie
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1 ReactionI appreciate your response. Did you have any other symptoms besides flushing? Also, did you have any tests ( 5HIAA, chromogranin, etc) or scans that indicated the presence of a NET? The problem I am running into is I am only having the flushing, but no blood/urine tests or scans are indicating anything, so my doctor is not recommending me anywhere.
Well, you are certainly an interesting case. I'm a NETs patient. I went a long time before I found out what my real problem was. That problem is a Neuroendocrine mass in my mesentery. So far it seems you do not have a good diagnosis. Don't give up. This can take a while. Not only is Nets a possiblity, but you may have something completely different going on. You might find help with a Rheumatologist. It wasn't until a radiologist successfully captured NETs under a microscope for me did I start getting the proper help. This can be a long frustrating journey. Best of luck.
I had the same symptoms of sweating every day and fainting! Also, my digestive system was messed up. My doctors could not figure out what was wrong. Sent me to GI, Endo, Neuro, pain management. Very frustrating until I went for a Hida Scan for my gallbladder. They gave me CCK(hormone) IV and all my symptoms disappeared. We finally figured out it was my vagus nerve, possibly damaged and causing these problems. For some reason the CCK calmed down everything. So I researched the vagus nerve and what to do and I am almost symptom free!. I use a tens unit for the ear, you can purchase on amazon, I try to snack all day or chew gum, this releases CCK, meditate, take deep breaths and smell lavender. Believe me all this has helped. I did so much research on the vagus nerve and CCK that all my doctors asked me for a copy of my notes! There is no harm in investigating and trying. I really thought I was a NETs patient, but thank goodness not. Living a better life after years of dealing with all these symptoms and so many test. Good luck and never give up. Be your own advocate and keep searching. You would be surprised how you can heal yourself.
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1 ReactionHello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small bowel) neuroendocrine tumor last year. For at least 2 years before that he started having flushing of face and chest. Of all the hormones measured, testosterone levels were abnormal. Later after his diagnosis, we think this is related to the liver metastasis. As for imaging, ultrasound or initial CT scans were not helpful. What was needed was a MRI, followed by liver biopsy and then a PET dotatate scan confirmed the diagnosis. He is on monthly Lanreotide shots which controls his symptoms.
I would definitely advise you to consult with a NET specialist.
I had sporadic diarrhea for quite a few years, the hot flashes pretty much started when I was diagnosed with NET’s.. the tumors were discovered after I had a CAT scan to validate my Diverticulitis attack, My GI doctor noticed the tumors on my liver. They were not there on a previous scan in 2017. She the sent me for a MRI, and after that a biopsy.. The results of the biopsy was neuroendocrine tumors.. Next was a PET scan to see if they could pinpoint where it started..
I know there was bloodwork in between but I’m not sure if any of the results would have pointed to the this Cancer..