Can blood work be normal and carcinoid be present?

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Can blood work be normal and carcinoid be present?

by jsmb234 on Wed Mar 07, 2018 04:54 PM

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Hi, 

I have been sick for 5 months with flushing, diarrhea, rapid pulse, and now night sweats, tingling/buzzing sensations in my neck and arms, and blurred vision.  My 5-HIAA (urine and blood) were both normal, as were my seratonin levels and Chromagranin A.  Could all of this be possible and carcinoid still be present?  Had a colonoscopy in Dec that showed colitis, but all biopsies were normal.  CT in Dec also normal except for hemangiomas/cysts on liver.  I have been feeling worse and worse and not sure where to turn next.  

RE: Can blood work be normal and carcinoid be present?

by Cindygi on Sun Apr 01, 2018 04:44 PM

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On Mar 07, 2018 4:54 PM jsmb234 wrote:

Hi, 

I have been sick for 5 months with flushing, diarrhea, rapid pulse, and now night sweats, tingling/buzzing sensations in my neck and arms, and blurred vision.  My 5-HIAA (urine and blood) were both normal, as were my seratonin levels and Chromagranin A.  Could all of this be possible and carcinoid still be present?  Had a colonoscopy in Dec that showed colitis, but all biopsies were normal.  CT in Dec also normal except for hemangiomas/cysts on liver.  I have been feeling worse and worse and not sure where to turn next.  

Hi, I've been having the same symptoms for many years. Since August it's on overdrive. Been to specialist cardiac, rheumotologist and endro.  Everything has come back negative/normal.  My last appt with my cardiologist really believes I have carcinoid reccommend that I have all tests repeated and go for scans.  So that's my next step. Let me know what you decided to do. Oh he also recommended I go to Hopkins Endrocrinology. He said they have more intense screening.

RE: Can blood work be normal and carcinoid be present?

by jsmb234 on Thu May 03, 2018 06:42 PM

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Thank you.  I'm not far from Hopkins.  We have a local NET expert at EVMS in Norfolk that I'm seeing who is trying to get to the bottom of this.  Have you had any luck getting answers? 

RE: Can blood work be normal and carcinoid be present?

by Cindygi on Thu May 03, 2018 08:14 PM

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Hi, I did have a repeat of 5-HIAA and it came back High. I have an appt with my Rheum this month to review my latest testing.  I just had another 24 hr ph test to check my acid levels.  My GI doc believes also my issues are somehow conncect to carcinoid.  I think the next test they are going to order is a Scan. At least I feel like my doctors are on the same track.  Hope you are doing well.

RE: Can blood work be normal and carcinoid be present?

by Cindygi on Sat Sep 01, 2018 04:07 AM

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Hi, how are you feeling?  Did your doctors find out the cause of your illness.  I'm still having a rough time of it.  Doctors are still leaning towards a carcinoid but still want to rule out other diseases.  I just want them to do the scan at Hopkins instead of all this other crap.  I have had enough and I'm sure a lot of other patients that go through the diagnoising are in the same boat. Well let me know if you had any success with the doctors in Norfolk.

RE: Can blood work be normal and carcinoid be present?

by Daisy17 on Fri Sep 14, 2018 01:30 PM

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This cancer is damn hard to figure out! My husbands blood work came back good except one thing. I think it was called Cdx2? So for us it was the biopsy and scans and they barely found anything. After a CT, MRI, colonoscopy, endoscopy, capsule endoscopy, it was the octreotide scans that found 1 2cm tumor in his liver and one enlarged lymph node in his mesentery. Next stop, exploratory laparoscopic surgery where they expect to find more tumors. He is scheduled for a bowel resection and hemicoloctomy and to burn the tumor in his liver...depending on what they find. The only symptoms my husband has is fatigue, chills, and constipation. If you’re having all those symptoms they’ve got to be missing something. Keep pushing!
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