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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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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?
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1 ReactionI 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?
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1 ReactionDid 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.
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