Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
@mimighosh I totally agree with the experience of the nurse giving the shots is very important. Ive been getting Ocreotide shots for a few years now and have had the same nurse. I believe I had a different nurse maybe twice in that time frame and the results were not the same. Her name is written on my records as preferred. She lets me know when she will not be there and I schedule my injection appointments accordingly. My doctor also prescribed Lidocaine patches which I apply a few hours before I get the injections. It does help..
-
Like -
Helpful -
Hug
6 ReactionsHi
Well in my experience they found a 13 mm nodule in my rll during a chest xray incidently I was going for hip surgery a lung surgeon did a pet scan and it had very low uptake and they said was stable for 4 years surgeon said we will do ct scans watch it he was sure it wasn’t cancer I asked to get it out since my mom and two brothers died of cancer years ago not sure what kind. In Nov 25 I had it removed by wedge resection and it was a net but also tested positive for STAS ( spread thru air space) which surgeon said was the first case he had seen. STAS can be reoccurring he didn’t know if stas (tiny micro clusters of cancer cells floating in the airspace beyond the tumor were left in my lung. I found out I have a small 4 mm in my right lung and in a recent ct scan follow up it says it’s 6 mm in one of my airways they sat it’s stable. Since my surgery I had flushing diarrhea weight gain blood work crazy but all the tests for carcinoid syndrome come back normal and the gallium scan was nothing but thyroid so it’s frustrating cause why the symptoms without a cause? My family dr checked me for Cushing’s syndrome first thing neg I would get them to check into those nodules in the lungs cause like saying they are stable cause they been there a year means nothing mine was stable for over 4 years and was typical carcinoid. How big are they? I hope you get to the bottom of this.
@mne262728 Hi and welcome to Mayo Connect. You seem to have some experience with MCAS. What led up to testing for it? What symptoms did you have?
My symptoms were hot and flushing of my chest and face, my stomach hurt so bad it would wake me up, I could feel my stomach spasm, if I sat with my legs crossed, where they touched I would feel like my skin was burning. My stomach hurt if I didn’t eat and hurt differently when I did eat. I had very high anxiety from a car accident a few years ago. I went to several doctors and a rheumatologist asked if I wanted to try the 24 hour urine test and I said I’d try anything - it showed all kinds of high readings. She said to take Allegra generic and formantidine at least 4 times a day and it helped immediately ! I also found TMS for my anxiety, they put magnets around your head for a few minutes each day for a few weeks and it got rid of my anxiety after the sessions. I suggest anyone with anxiety that cannot be controlled with meds to try TMS, it was covered by my insurance. My auto accident was in 2018 and I suffered with a nervous stomach, terrible panic attacks etc and it helped so much. Three days after I ended TMS I found out I had NET tumors in my stomach. I went through the operation and working with several specialists at Mayo easily, I know it was due to TMS helping my brain because if I heard I had cancer before I had TMS I would be on the ground in the fetal position. You just have to try everything to see what helps your mental and physical health. Even with cancer I feel great and am doing very well mentally!! 🌻
-
Like -
Helpful -
Hug
3 Reactions@mimighosh thank you so much. This is very helpful. Sorry for my delayed response, I am still getting used to this site. My husband should be getting his first shot in the next few weeks. Just praying he is able to follow through monthly.
-
Like -
Helpful -
Hug
1 Reaction@missywv good luck with the first shot. For my husband, it was easier than we imagined it to be. Also, FYI, the first couple of shots may result in more side effects (diarrhoea and gas ), but then the body seems to get used to it. But do not be afraid to ask the nurse if she is expereinced in giving this particular medicine.
Here is the instructions for the health care professionals on how to administer Lanreotide.
https://www.somatulinedepot.com/en-us/hcp/administration/dosing
Please reach out if you have any other questions. You can also email me directly at mimighosh@yahoo.com
-
Like -
Helpful -
Hug
1 Reaction@mne262728 It is great that you are feeling well physically and mentally. What operation did you go through?
EUS endoscopic ultrasound where they can remove the cancer and also see how deep into the tissue it has grown with the ultrasound. They can also check your spleen, pancreas and kidneys with the ultrasound through your stomach n I do have a lesion on my spleen that they are watching. Hope you are feeling well!
-
Like -
Helpful -
Hug
2 Reactions@mne262728 So a lot was checked? That's great. Is there a treatment plan moving forward? I am feeling well. Thanks.
The plan now is to have an endoscopy in 6 months, around February unless something changes. It’s always on my mind as I imagine it is on yours too. Take care !
-
Like -
Helpful -
Hug
2 Reactions