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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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A related discussion, Hello was started.
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Avatar universal
Hi Lauren,
My name is Kristen and I have had lots of the same symptoms in the past.  Many doctors might think that it is neurological, but in my case it was not.  I had the cat scan, mri, and other things which all came up normal.  In my case it was hormonal.  Hair falling out is usually a sign of thyroid and or/ vitamin deficiencies.  I would advise that you see an endocrinologist.  They specialize in hormones. Get a full hormone panel done (adrenal glands, thyroid, progesterone, testosterone, estrogen) and a vitamin nutrient test.  I started having hormonal issues when I was 25 years old (didn't think that was supposed to happen until I was older). Hormones can cause a lot of anxiety as well as various other freaky symptoms.  Some of the symptoms I had were...skin flushing (red skin), sometimes purple hands and feet, hot and cold sensations, dizziness, hair loss, loss of sleep, weakness, shakiness, itching, tingling, seeing stars, water retention, weight fluctuations up and down,  sensations like bugs crawling under my skin.  The list just goes on.  I'm not completely sure that you have the same problems as I did, but It would be worth checking into.  Hope you find some comfort soon.
Kristen
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Avatar universal
Debbie - Maybe if you check my profile on this site you will see my email address.  Bufalowgrl was able to email me by checking.

It seems like Dr. Warner uses "anxiety" as the answer to lots of things!  I do have plenty of anxiety and more so now with my symptoms, but my facial flush resembles very much,  the animation on one of the carcinoid websites.  And his response that I don't have carcinoid because all tests are negative does not satisfy me because none of the tests are even close to 100% sensitivity ( he knows that). I was never tested for tryptophan.  He puts lots of importance on serotonin being normal.  You say he's adamant that you don't have carcinoid, but then he says he's "not too worried" (does that mean only a little worried?) about your tryptophan?  He's not being consistent. Has he ever seen your flush? He never saw mine (no dr. has) and I think it's very important that he see it before coming to an opinion, because he kept telling me there are many causes for flushes which look very much like a carcinoid flush. But he didn't name any!Was he testing you for niacin because too much niacin causes a flush?  Do you take niacin supplements?  If not, is it possible to have high niacin without taking supplements?  I assumed my flush was not due to niacin because I only take a low amount in a B-complex supplement, and anyway, I've taken it for years before I ever flushed.  I don't flush very often as I already mentioned.  I don't count one or both cheeks or my nose as a real flush but maybe I should (Dr. Warner didn't).  My flushes that are more extensive and carcinoid-like can be a week apart, but then can be 3  or even 8 mos apart, and then become more closely spaced.  Since you started flushing, has it been most days or also sometimes widely spaced? And can you clarify again what your thigh flush looks like?  Besides covering most of your thighs, are they circular with well-defined edges, or with no particular shape and more speckled and less clear at the edges? You did say they were defined, but I want to make sure your definition of defined is the same as mine. Mine, just above the knees, were very circular like a tomato. I've not had any pains or problem swallowing, but for the first time, a month ago I got back blood tests from a general check-up  -- and my glucose had gone from 96 to 105 in only six months.  I don't know if that's considered pre-diabetes or not but it surprised me. I haven't been thin for years, but am not too overweight. I also gained an extra 5 lbs in the last few months from eating due to stress and just learned I'm slightly anemic for the first time  -- but previous tests over the past several years were just barely normal RBC so it hasn't changed much. Are you very anemic or slightly? Some yrs back I tested a little high on cortisol, but haven't been tested since, but I think anxiety/stress has a big influence on that.  I have no nausea, but if malaise means fatigue, yes, I do feel tired most of the time (but have slightly low thyroid plus hyperparathyroidism, both of which cause fatigue). I definitely am anxious and stressed and sometimes depressed, but have always been to a lesser extent even before these symptoms appeared.    Who is Dr. Odorisio in Iowa?  Is he a carcinoid expert? Where did you hear of him? Since he refers to "blotches" on legs, as you do, that's why I'm trying to determine if a blotch means a well-defined shape or rough edges.  Did Dr. Warner have an opinion on this gallium 68scan?  Dr. Warner also told me flushing on the limbs is not typical but I read everywhere that foregut usually has flushing on the limbs  and foregut is atypical in many ways.  I think he only thinks about midgut carcinoids. I could go on and on, but I've written far too much.  Hope to hear back from you soon.  -- Lori
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Hi again, I see that my email address was blocked out so I guess we can only use this forum. Debbie
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Avatar universal
It has been a very crazy 2 years with every test imaginable. We have lots in common. Dr. Warner still does not think I have a neuroendocrine tumor and was pretty adamant about it. He didn't have any explanations for the PP being so highly elevated except "anxiety"???? The colonoscopy this time still shows ileitis and colitis so he said maybe its early Crohns????? It is not because I have gained 20 lbs. in last 2 years and have no diarhea. Also blood tests were neg. for Crohns. I was very frustrated. I also had low tryptophan which is consistent with Carcinoid but he said since my serotonin is low normal, he wasn't too worried. He did retest the tryptophan, pp, and niacin. I am so confused because I had sent my records to Dr. Odorisio in Iowa because he is getting a Gallium 68 scan in the next 4 months, that should pick up very small tumors, and I wanted to be on the list. Lori, Dr. O. called me and said from my symptoms and records, he does feel I have "Carcinoid Complex." He thinks I should go on Sandostatin and said he has seen several people in the last 2 months who have flushing as blotches on legs. I am very confused!!!!!!! 2 experts with 2 different opinions!!!!!! Also saw a local oncologist who suspects forgut carcinoid but isn't sure cuz no tumors yet and markers in normal range. To answer your other questions, did you do the 5HTP test at Mayo? What were the results? The blotches on my thighs covered whole thighs; it was after light housework and they were huge red,defined blotches that took about 1/2 hr to fade away.I started having flushing on my face in January. It is, like  with you, a pin prickly, sunburned sensation usually out of nowhere and lasting on and off for hours. Some days I don't get it. I also feel short of breath and have occasional wheezing but have had asthma for 20 years. The wheezing has gone away for now but the flushing has not.  The symptoms I had 2 years ago were and still are: severe pelvic pressure when sitting which led me to a hysterectomy for fibroids that did not help!: followed by tightness in my throat when I swallow, pre-diabetes that came out of nowhere as I was thin; weight gain now of 20 lbs.,intermittant anemia,mildly high cortisol a couple of times-now normal;iileitis,colitis with no symptoms:alot of anxiety and depression over all this; malaise and nausea at times...do you have any of these? Lori, please write to my email and let's stay in touch. It is ***@****. Looking forward to hearing from you. Debbie
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Avatar universal
Hi again -- I accidentally pressed "Post" before I finished.  I wanted to mention that octreotide scan doesn't pick up very small tumors and that's why I worried about foregut carcinoids since they secrete substances directly into bloodstream without the liver having to metastasize first. That means carcinoid syndrome can occur at very early stage before the tumor grows big enough to be picked up by the octreoscan.  

Forgot to ask if your thigh blotches were close to your knees or on upper thigh?  

Hoping to hear from you soon, and again, I hope Dr. Warner had only good news.

Lori
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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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Avatar universal
If you are still flushing with no answers, get checked for thyroid cancer.  I had the same red flushing and no one could figure it out for years...turned out to be a rare thyroid caner (medulary thyroid cancer) it cuases calcitonin to be produced in the body and calcitonin inhibits heat release.  Easy blood test will tell you...
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Avatar universal
I also have this extreme flushing you speak of. I have been trying to get a diagnosis for over a year. I have tried propranolol, clonidine, H1 and H2 antihistamines, singulair, and other various beta blockers with no success. I especially flush when in the sun, and my skin becomes very hot to the touch. It feels like a burning sensation, but in an hour or so after being flushed it usually dies down. I have been tested for mastocytosis, thyroid issues, carcinoid, and had all the basic blood tests done, to no avail.

Lauren81: the itching you speak of is similar to what I had. I found that by taking claritin daily it helps with the itching. After doing some research, I found that some people naturally expel IgE onto their skin when the sweat glands are activated (to a large degree). Try this out and see if it helps with the itching if you have not already done so. Any updates would be appreciated.


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Avatar universal
Hi Lori...Long time since anyone posted on this thread. I am still in the pursuit of some answers to my flushing, multi-symptom odyssey! Still no answers. Saw Dr, Warner (NYC carcinoid specialist) over the summer and he thinks my negative carcinoid tests (with the exception of one slightly elevated CgA) "don't support a diagnosis of carcinoid"....I am completely at a loss.

Have you had any progress? Very interested in hearing from you. Have you heard from Lauren81?
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Avatar universal
I've read your symptoms and I agree it sounds like some form of mast cell disorder. I'm being tested at the moment and have found that you can have mast cell activation disorder with normal tryptase and skin biopsy results. I have flushing and a host of other symptoms. Diahorea is another symptom. Alcohol is a trigger for releasing histamines.

Have a look on the mastocytosis society wesite www.tmsforacure.org.

When I looked I had all the symptoms. I've spent 8 and a half years trying to find out what it is. It is rare so don't get dismissed by the doctors. I haven't found one doctor that has even heard of it (except the specialist obviously!!!) including a cardiologist and an orthopaedic specialist
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875426 tn?1325528416
You probably already had your estrogen levels & FSH checked?
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Avatar universal
Hi...don't know whether you both are still folowing this thread. I posted earlier and it is now 17 months for me without a diagnosis. All carcinoid related blood tests with the exception of a slightly elevated Chromogranin A and the initial slightly elevated serotonin have all come back normal! All Scans in cluding Octreotide came back normal as well with the exception of a liver hemangioma. I am still experiencing flushing (now it is more like sweating episodes with redness of face and neck 24 hrs. a day) URQ pain that extend through to back, joint pain, rapid heart rate (over 135 at times), hair thinning, headaches. Went to see Richard Warner in New York and he feels it is not carcinoid but there is something definitely going on. He suggested perhaps mast cell disease! I'm at wits end at this point!

Has anyone on this thread gotten any answers yet???? I feel as they there is carcinoid present somewhere and it's being missed!!! I would love to hear from Lauren81 or Lori637 on your progress. Hope this post finds you both in better health. Look forward to hearing from everyone.
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447063 tn?1316560930
I have Flushing Of The Face & Hair falling out, cold hands & feet as well along with sweating alot. I was diagnosed with Addison's disease that caused alot of this. The flushing I had was coming from Low Potassium, and Stress. Because with Addison's my adrenal glands cannot handle stress. Also with Addison's it messes with my Blood Sugar causing my face to flush also. I now have Menopause and I get very hot from chest up with high heart palpitations for about 20 minutes, and my face will turn red when this happens. So there are 3 reasons why my face turns bright red along with my arms, and legs also bright red. Its all Hormone related. For 2 years no doctors could tell me why I was having flushing with all the other symptoms. Do your research and take your symptoms to a good Endocrinologist about the flushing. Check Adrenal glands & make sure they check your glucose, your sodium, your potassium & any other electrolytes. Because the Low Potassium causes my face to flush daily. Low Potassium will cause you to sweat more too because when your potassium is low your heart rate and blood pressure go up. Goodluck
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612876 tn?1355514495
Mastocytosis and MCAD are not synonymous and doctors not familiar with these disorders can have a particularly hard time making the diagnosis for MCAD.  Many doctors are not fluent when it comes to these disorders, and you may need to seek out a masto specialist to be properly tested and if need be treated.  One of the top specialists in the US is Dr. Mariana Castells of Brigham & Women’s, but there are also specialists at other top hospitals such as Mayo, etc., I just don't know names off the top of my head.  Point being, if you can't find another explanation for your episodes and masto or MCAD make sense, you may have to get to a masto specialist to really get a definite answer.  
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Avatar universal
Hi....I can't believe this thread! I felt as though I was reading my own story! I have been going through all of the same symptoms...had all the same carcinoid tests...bloodwork, ct's., mri's, even an Octreotide Scan and all are negative except a "slightly elevated serotonin". The doctors say it's not carcinoid but I have read and heard from one other carcinoid patient who tested negative on all tests but they found carcinoid in her small intestine and root of the mesentery!

Have either of you gotten a definitive diagnosis yet?? I would ove to hear from you. I do hope that you both are getting better and have found the root cause of your problem...Hope to hear from you. I am at my wit's end and everyone had a different opinion about carcinoid and it's presentation with regard to testing and diagnosis. Thanks...please respond.
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875426 tn?1325528416
Hi, Lori!

My facial flushing usually happens when I'm stressed or overexcited.  It is a dry heat type.  I haven't had the knees thing show up red for quite some time now, but I didn't have to be stressed to have it happen.  I don't remember having any diarrhea with it, however, I copied some more from dinet (who I think got it from ndrf) regarding mast cell and POTS.  Note the mention of diarrhea towards the end of the quote.

"Mast-cell activation disorders may play a role in the development of POTS in some individuals. Some patients with orthostatic intolerance suffer from episodes of flushing, palpitations, shortness of breath, chest discomfort, headache, lightheadedness, hypotension or hypertension and occasionally syncope (Jacob & Biaggioni, 1999). Exercise may trigger an attack (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Patients may complain of increased fatigue, sleepiness, increased urination and/or diarrhea after an attack (Jacob & Biaggioni, 1999)."

When I tried to get tested for mast cell activation disorder, the primary care doctor I had at the time did not want to bother because the treatment for it if I had it was medication she said I couldn't take anyway (I believe because of my tachycardia problem).
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Avatar universal
No -  I never had 4 hr. urine sample for Mast Cell.  The only urine test I've taken was 5HIAA for carcinoid. One yr ago it was normal, as was all blood tests for carcinoid and the tryptase for Mast Cell.  Today I'm again collecting 24 hr. urine for 5HIAA. I had a flush today and diarrhea (almost daily for two wks), so if my symptoms are from midgut carcinoid, the test should be positive for sure. If foregut carcinoid, which I think I have because flush symptoms are typical of foregut type, this test is only 30-50% sensitive so it's not very useful.  As for Mast Cell disease, I remember reading that flushes can be induced by rubbing the skin.  Don't know if it happens 100%  of the time though.  The skin scratching test was done to me by expert carcinoid dr.  I supposedly had a "hypersensitive skin reaction" because it caused a red welting. Then I learned that most people have that sensitivity, so it's no help in diagnosing anything.  Can you tell me if you've had chronic or increased diarrhea since you began flushing?  If so, how often and how bad?   Have you been tested for carcinoid?  Your name suggests that your flushes are wet flushes, which is not typical of either carcinoic or mast cell disease.

Lori637
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875426 tn?1325528416
The rheumatologist did not tell me it had to be limited to knees and feet to be episodic arthritis.  Of course, he didn't help me any either.

  Also, I read about mast cell disorder (I also have gotten flushed face before) in relation to postural orthostatic tachycardia syndrome (something I was diagnosed with).  This is on ndrf and dinet websites:
"An increase in urinary methylhistamine, a marker of mast-cell activation, can be found in these patients.

Mast-cell activation results in the release of the vasodilator histamine, which may contribute to symptoms of POTS. Other mast cell mediators, such as plasma prostaglandin 2, may contribute to symptoms as well. Urinary histamine is often measured in the evaluation of flushing, but it is less specific than methylhistamine and not useful in the diagnosis of mast-cell activation (Shibao et al., 2005). Patients should be instructed to collect urine for a 4-hour period immediately after a severe spontaneous flushing episode. Urinary methylhistamine is usually normal between episodes in patients with mast-cell activation disorders,"

Lori, may I ask if they did this 4 hour urine collection and test your urinary methylhistamine after one of your flushing episodes?
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