Are these all symptoms of carcinoid syndrome/ MAYBE!

[seand777]

I am not a doctor, but I am experiencing some very troubling similar symptoms. As a 37 year old male, I know it's not menopause. The flushing is constant now 24 hours a day. My head, face, back of my neck and back and chest feel like they are on fire (burning heat) almost like the sun shining directly on a sunburn. Occasional attacks of watery explosive diarrhea with blood and mucous. Profuse cold clammy sweating, shortness of breath and wheezing. Even after being a steroid therapy for 2 months. I also feel very anxious and have chronic fatigue along with all of these symptoms. Everything but the flushing, wheezing and shortness of breath have been an ongoing problem for about 7-8 years now. I also have lost my voice and it's been beyond hoarsed for 7 weeks. My blood pressure has also been spiking beyond control with the worse damn headaches I have ever had.  The problem with carcinoids is, they mimic so many other non threatening diseases and they are VERY difficult to diagnose.

I have had a who battery of blood tests and CT scans of the Adrenal Glands and Renal arteries only. The ultra sound was only done on the upper abdomen which revealed cysts on my kidneys and an enlarged liver. After doing so much research, Carcinoids secrete Serotonin which cause the mass flushing along with other symptoms. I have also been on Zoloft and Prozac SSRI's Selective Serotonin Reuptake Inhibitors for 8 years. Why the flusg=hing all of a sudden over the last 8 months? Well, If I have a carcinoid that is secreting Serotonin, and I am taking Serotonin Anxiety meds, to me that equals Serotonin Syndrome on top of the Carcinoid. Too much or lack of serotonin can cause all kinds of serious problems. Fatigue, anxiety, tremors, dizziness, diarrhea etc,.

Out of all of the visits to the doctor and the Cardiologist, why can't someone give me any relief. Why can't I get my primary to order a 5HIAA 24 hr urine collection and a chromogranin A blood test which are the main 2 tests given to detect Carcinoid Syndrome. I am not asking them to rob a bank for crying out loud. Why not a CT scan from my lungs to my waist? My body has been telling me for so long that something is very wrong! None of the antidepressants did any good at all, none of the medicines like Lorazepam didn't do a damn thing for the flushing.  Out of all of the treatments I have been given for whatever I was diagnosed with NEVER WORKED! CAn one of these Doctors who actually care wake up and do something about this? If it is a carcinoid, I am definitely worried now because of the constant flushing, Wheezing/ Shortness of breath and enlarged liver with a hoarsed voice for 7 weeks.

SOMEONE HELP ME PLEASE! These symptoms have and are ruining my life. Everyone in my family and wife thinks it's all in my head. But it isn't. Going #2 with chunks of blood and mucous is not in my head. Profuse clammy sweating with a subnormal body temperature is not in my head. I am worried that if it is Carcinoid, it sounds like it has metastasized to other areas and this could have been fixed long before it got to this point! It's like a nightmare! I keep telling these Doctors and nobody is concerned because I am only 37!  SO WHAT!!!!! Stop making such a calloused decision by simply denying that it isn't Carcinoid with any testing or proof that it doesn't exist!


This discussion is related to Are these all symptoms of carcinoid syndrome/.

[Millan75]

Did you ever get clarity ?

[CalGal]

If you can't get your docs to do the testing you'd like to have done, look around in your area for a direct access testing (DAT) lab. I beleive that there are currently 34 states that permit health care consumers to order their own lab tests – without a medical order from their health care provider. The labs may or may not be able to do the testing you'd like, so you'd have to check individually. It's also known as patient authorized testing, so you could also query those terms and see what you can come up with.

Your symptoms my be indicative of carcinoid, however, it's also possible that they could indicate other conditions. And for many, the flushing with carcinoid does not seem to be constant as you say yours currently is. Since you're also having bouts with bloody diarrhea, have you also had a colonoscopy?