Did anyone present with some symptoms of Crohn's and it turned out to be Carcinoid Syndrome?

[Eternal_Howl]

Just wondering. Sorry I don't have much of a comment in here. I usually write a book. I just don't feel good in general and some of the carcinoid syndrome symptoms seem similar. I'm exploring all avenues because sometimes the experts get things wrong and since I'm undiagnosed, I don't want to get diagnosed with the wrong thing and it's fatal.

 

[DJW]

I can't imagine how frustrating and frightening being undiagnosed must be.

You have my support. I pray you get answers so treatment can start.

 

[Eternal_Howl]

I have a history of adenocarcinoma, so that's why this isn't a far reach for me to consider. Not trying to scare myself, but trying to look at ways of helping with diagnostics. Sometimes even the experts need help.

 

[Jennifer]

Have you had a CT scan of your abdomen before? The tumor would have been seen then most likely. It's a somewhat common test when searching for IBD. Have you had a blood and urine test done? http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/tests-diagnosis/con-20027127 Do you have these other symptoms? http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/symptoms/con-20027127

I did a search for Carcinoid Syndrome on the forum and very few hits were brought up but they were all worry posts about whether or not they had it or posts about how their doctor tested them for it. Ask your doctor to rule it out which will at least give you peace of mind.

 

[Eternal_Howl]

Have you had a CT scan of your abdomen before? The tumor would have been seen then most likely. It's a somewhat common test when searching for IBD. Have you had a blood and urine test done? http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/tests-diagnosis/con-20027127 Do you have these other symptoms? http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/symptoms/con-20027127

I did a search for Carcinoid Syndrome on the forum and very few hits were brought up but they were all worry posts about whether or not they had it or posts about how their doctor tested them for it. Ask your doctor to rule it out which will at least give you peace of mind.

I had a CT a while back showing thickening in my small bowel midway down I think, telescoping of the lower small bowel and at the time I was getting over several days of pain and had inflammation. I'd also been bleeding mildy in my gut. I've just had the agile capsule which can't pass through, so will break down. Cannot have the pill cam as it will not pass based on this recent test. Had ovarian cancer in 2005. Have had symptoms on and off for 8 years and recently the GI specialist suspected Crohn's - still not ruled out. The diarrhea I don't really get. It's rare. But I get flashes, rashes, lumps and abdominal pain and a while ago I thought my thyroid was playing up as I was getting the butterfly feeling near my heart, but thyroid function was normal. I got someone to my blood count again today as I was disturbed to find a lump on my arm that sprung up out of nowhere, but it's under a rash that I've been assuming is just a heat rash (had it last year too). Never had it before, but in a different country and the temperatures are more extreme in the US. Some carcinoid tumors can take years to diagnose, but can display symptoms for a while. That's why I thought I'd throw this out there. Fatigue so bad sometimes I feel like I'm going to pass out (like today). That could be the result of lacking nutrients, I know. I also generally exercise a lot for my job. It's like I'm paid to exercise. I'm not super healthy or anything like that - it's literally part of the job, so I do a lot of walking. Currently on a temporary lay-off and return to work Tuesday. Time to relax lol.

 

[Momtotwo]

Eternal- A family member was evaluated for carcinoid syndrome a few years ago. It can been a difficult process to diagnosis. One early tests was a chromogranin a (sp?). It can have false elevations with many medications. Have you had that test.
When I was looking for a good dr for my family member, Dr. Warner's name came up often. It's possible he is retired from practice now, but I think he is still active with the Carcinoid Foundation. http://www.mountsinai.org/profiles/richard-p-warner

 

[Eternal_Howl]

Eternal- A family member was evaluated for carcinoid syndrome a few years ago. It can been a difficult process to diagnosis. One early tests was a chromogranin a (sp?). It can have false elevations with many medications. Have you had that test.
When I was looking for a good dr for my family member, Dr. Warner's name came up often. It's possible he is retired from practice now, but I think he is still active with the Carcinoid Foundation. http://www.mountsinai.org/profiles/richard-p-warner

I haven't had the test. Sorry that your family member had to be evaluated for this, but at least they even considered it. It seems like it's not something people think about and many of the symptoms can be similar to Crohn's.

 

[Jennifer]

Did your GI take biopsies when they did your colonoscopy? Have you had a small bowel follow through done or an MRI or MRE of your abdomen since you can't do the pill cam? When was your last colonoscopy? Oftentimes it may take many scopes until something is finally found.

As for the lump it may be a swollen lymph node. http://www.mayoclinic.org/diseases-conditions/swollen-lymph-nodes/basics/definition/con-20029652

 

[Eternal_Howl]

Did your GI take biopsies when they did your colonoscopy? Have you had a small bowel follow through done or an MRI or MRE of your abdomen since you can't do the pill cam? When was your last colonoscopy? Oftentimes it may take many scopes until something is finally found.

As for the lump it may be a swollen lymph node. http://www.mayoclinic.org/diseases-conditions/swollen-lymph-nodes/basics/definition/con-20029652

Yeah, I'm kinda getting that it will be a few scopes and studies before they figure out what's going on. Thanks. No, it's not a lymph node. That would be higher up (elbow) - lymph nodes are basically anywhere you're ticklish or might be. Even the nurse yesterday had to acknowledge that she'd never thought of that. (Neck, pelvis, knees, elbows etc.)

 

[Jennifer]

You said arm so I thought maybe armpit. Some of the medications I've taken in the past caused mine to swell there. You're not currently taking anything though right? What about supplements?

 

[Eternal_Howl]

You said arm so I thought maybe armpit. Some of the medications I've taken in the past caused mine to swell there. You're not currently taking anything though right? What about supplements?

No, no meds aside from Benzos and birth control. Not even supplements right now. I don't want to mask the effects of whatever is wrong while I'm seeking diagnosis.

 

[Jennifer]

Have you been taking those for a while? Just wondering if maybe you could be having a reaction, even a delayed one to anything you might be taking currently as far as the rash etc is concerned.