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BRIGHT RED FLUSHING- please help!

Please help- I am desperate. I have been trying to get diagnosed for over 2 years now, and I am at my wits' end. I am a 26 year old caucasian female. Here is my story:

I have been flushing BRIGHT RED almost all the time now. It happens for no reason, and I feel ridiculously HOT. My face, neck, chest, sometimes arms & knees turn mottled bright red, while the tip of my nose, fingers and toes freeze. I sweat more than normal now, I get random little white ulcers in my mouth almost constantly. I have random skin rashes and itchiness that my dermatologist can't solve. I have been diagnosed with a primary liver tumor. The original diagnosis was that of a benign focal nodular hyperplasia. However, the doctor just called with the results of my 6-month CT scan, and it's growing rather rapidly (which FNHs don't do). A liver biopsy WAS done before (with CT guidance), but the pathologist had a hard time on diagnosis and actually sent it to specialists at Johns Hopkins Hospital for a 2nd opinion. They now believe that the FNH diagnosis was wrong, but still can't tell me what it is. I'm currently scheduled for another biopsy and possibly resection. The doctors can't link my flushing to the tumor though. I just don't see how it's possibly anything else. My hair (on my head) has been falling out now, and just this week, I am now seeing little flashing lights when I close my eyes, for just a few seconds. My doctor's quickness in calling me about these results (the CT was just done a day and a half ago), the fact that it's growing, the concept that some of the best doctors on the East Coast have no idea what is going on with me, and these new symptoms have me SCARED OUT OF MY MIND. Does anyone have ANY ideas?!? I'm open to any suggestions! Thank you!!!
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Avatar universal
Hi Debbie -  How did your meeting go with Dr. Warner?  I hope he had good news for you.   I saw him 1 1/2 yrs ago. At that time I only had flushing and had negative test results for several things, plus a negative octreoscan.  He said I didn't have carcinoid because my description of flushing was not typical --some minor asymmetric flushing (sometimes just one check and nose), even though I've had at numerous major symmetric flushes on face, neck, upper chest, shoulders, just above knee caps, ellbows and a few times little mottling on arms and lower legs. The color of my face is a deep red, while knees and elbows, etc. are brighter red. From the beginning, flushes lasted about 20-30 minutes (not including fading time of same length) so I felt I had foregut carcinoid.  I feel tightening, heat and sometimes tingling at the outset. Dr. Warner also said it was not typical of carcinoid to have several months (3-8 mth) gaps between major flushes.  Anyway, one yearr later  diarrhea began (all stool tests normal) and called him for his opinion.  He still said not carcinoid because by then I had taken about 15 blood/urine tests all with negative results. Then, last month, my retake of CgA was slightly elevated so I called him again.  He said it was insignificantly elevated, and that stress, anxiety, IBS, etc. could elevated it.  He sounded like he didn't want to hear from me again, although he was very polite......  I still feel I might have foregut carcinoid and will retake a few tests every year and wait to see what direction my symptoms go. There is really no one who knows more about carcinoid than Dr. Warner, so what more can I do?

If you think you have it, there's a 24 hr. urine serotonin test for 5-HTP (not 5-HIAA) which is rarely done. The only place I found that offers it is the Mayo Clinic. Because foregut carcinoids often have very low serotonin levels because they don't have the ability to convert to 5HIAA, the regular tests for it are not very useful. But this 5-HTP test picks up the unconverted form of serotonin in foregut carcinoids. (I'm not sure ALL foregut carcinoids have serotinin, but still it's a good test.)

When you say you've been ill for 2 yrs, may I ask what type of symptoms you've had if you only started flushing in January?  If you didn't have Crohn's symptoms, does that mean you do not have diarrhea?  Do you have pain, or what?  Were your big blotches on your thighs well-defined in shape or without a clear outline? Was there any known cause for the normalization of your elevated pancreatic polypeptide?  Does Dr. Warner have an explanation why they would go from positive to negative?
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Avatar universal
I am so glad I just found you all. My story is so similar. I have been ill for 2+ years and have had all kinds of tests and scans. There is now some suspicion of carcinoid locally. Have been to Dr. Warner 2x and am going back tomorrow as he did a colonoscopy last week and we will have the biopsies. I had been diagnosed with ileitis and colitis "suggestive of Crohns" but no Crohns symptoms. In January,  I started flushing...it can last for long periods...sunburned sensation on face, sometimes red cheeks, blotches on neck and yesterday big red blotches on thighs!!! Some wheezing on and off, but do have asthma too.Also slightly short of breath. My pancreatic polypeptide was 2x normal on 2 occasions and NSE slightly elevated once, but all in normal range now. Octreoscan was atypical due to ileitis but no tumors found on that or CT. I really feel I have foregut Carcinoid. I don't know what to do. Can you relate to any of this. Debbie
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Avatar universal
Hi Lori....So glad to hear from you! I am going to try and send you a message to your profile...to give you my direct email...so we can more readily communicate. If I don't hear back from you in a short time. I'll post here again. I have to pull out my labs with regard to the CgA results for you. Don't panic...I'm right there with ya! Totally frustrated and scared. Wish Lauren would post!!!! Wonder how she is??? I'm going to try to send message to you now..

Talk to you in a bit
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Avatar universal
I'm so sorry I haven't checked this site sooner, but I was too depressed to deal with the subject.  I tried to put it out of my mind because everyone tells me I'm obsessing and paranoid.  I haven't heard from Lauren.  I sure hope you check this site soon so we can communicate more.We've both seen Dr. Warner.  He's a really nice man but getting on in age and I hope he lives a long time especially because there are so few experts in this field!  Although I only saw him once, which was 1 1/2 yrs ago, I've called him a couple of times and he was very pleasant but kept it really short because he's so busy.  I hope he responds this time too.

Lori637
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Avatar universal
You mentioned a slightly elevated CgA as your only positive test result. Was it the 0-5 range or the <38 range? What was your result?  I don't even know what is considered slightly elevated. Since Dr. Warner told you that the slightly elevated CgA was not enough to diagnose carcinoid, I wonder what he'll tell me.  Has he ever seen your flush?  How many times have you seen him?   I'm in R.I. so it's hard to get to him.

Lori637
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Avatar universal
The latest is that for a year now I've had moderate diarrhea on and off but almost none last 2 months. Also no real flushing for a couple of months. But just got back a CgA test which was positive: 6 (with a range of 0-5). About a year or so ago I had two other CgA tests which were negative, but just within upper limit of the range. I am waiting to hear from Dr. Warner, who earlier said even with diarrhea he didn't think it was carcinoid because all my many tests have been negative.  Now one test is positive so I'm really scared. I've ruled out all the other diagnoses like lupis, mast cell, niacin, etc. an am convinced it's carcinoid because the flush is exactly as seen on internet video.  Because my flushes lasted at least 20 minutes from the first one, and because it's not just my face and upper chest, it's most likely foregut which is so much harder to diagnose.  These last two + years have been so stressful.  Please let me hear from you all as to your situation now.  Thanks.

Lori637
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