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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!!!
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!!!
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
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.
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.
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.
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).
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).
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
Lori637
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?
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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