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 spent 8 hours yesterday researching information on lupus and other autoimmune disease disorders. my question to you and living with lupus is, do the veins on your hand ever visably bulge and throb as well as your mouth waters and nose runs. the coldness in the hands and feet sounds like raynaud's wich in itself isnt that bad just really uncomfortable, my hands are ice and sore at the moment, also if you do get the swollen throbbing hand veins does your face ever feel like its swollen to even if it might not look it and have you ever had your blood pressure taken while having such a flareup. not trying to put symtoms in your head, if you had these youd know pretty well lol. im 25, 6'2" 180lbs can walk 5-10 miles at a clip but hen one of these attacks sets in im bound to laying down and having a hard time breathing. my best advice for now is try moving to organic foods and stay away from all unattural additives and i mean this to the highest degree, i know they cost more but you tend to eat less when going true organic and make sure what your getting isnt just hitching a ride on the health marketting train. the reason you tend to eat less and actually save money in the long run is because the one tomatoe that costs a dollar has about the same ammount of nutrients as the bag of tomatoes that costs 3$. also for the cold hands and feet ive heard and have had some results myself with ginko biloba, try to keep a normal sleep schedual and if you smoke quit, that will help the raynauds tremendously. im down to 2 a day useing chantix for 2 weeks now and that drug has been a miracle for me. now if i could just get this nerve pinch in my back to ease up ill feel better. livingwithlupus other than my symptoms what should i tell my doctor as far as tests that would be the best to run if this really is lupus im suffering from as well
also my theory on autoimmune disorders and its only a theory is that the body has become so toxified from environmental and diet issues that the immune system actually sees its own host as a threat and thats why i say give the organic a try and also get a colonic no word to lie and no joke, everything has high fructose corn syrup in it these days and that stuff coats your digestive tract and intestines with a slime that doesnt allow proper viatmin absorbtion causing everything from constipation and diareahea to scurvy and malnutritian. so with those questions asked and statements made i wish you the best of luck and if you need support you can always find me on aim as AshNineFallen. well my hands are starting to throb from all this typing, im also a keyboard player and guitarist so that sucks as well but i fought through an attack last night and played for 55 minutes strait before i fell asleep, actually helped in a strange way even tho it aggrevated things. hope all works out and livingwithlupus if you can answere anything i myself have asked please let me know, i may have given some advice but you would know better than i. please hit me back;)
love peace and hold the grease
A S H
l h e
l a a
rise like the pheonix
the liver is the only organ in the body that can basicly regenerate itself from nothing, if the tumors growing you may want to have it removed and inform your doctor your aware of the potential of the liver and its ability to repair itself, in the meantime i advise you start taking a daily regimine of the herb milk thistile wich has saved my life and liver from tylenol poisoning, drink organic pure cranberry juice to help the toxins stay flushed out and above all else EAT AVACADOS they have been scientificly proven to prevent and even reverse bad liver damage wich would be good to post op should you have it removed. also cranberries are very very high in antioxidants and if you can stand the taste i reccomend either getting them with every grocery order, i hate them but my body is constantly forcing me to eat them for lack of a better explination, had my kidney's almost fail a few weeks ago and a 10$ bottle of organic cranberry juice and 2 containers of organic cranberries saved my life. sorry for the rant style of all this but i also suffer from severe adhd but at the same time when i want to focus on a particular subject i focus ten fold but it comes out all jumbled because ive focused too much and start branching out on every possible idea that can be connected to the root of my study. hope all is well and hope i can get some answeres myself, had a regular blood test taken on the 3rd dont kno if that will show anything but the doc who usually gets back to me in a day has had the results for a a few days now and wont consult me over the phone wich tells me maby he found something and i can finally stop worrying about what i might have and treat what it is i do have, im fine with knowing what is wrong with me i just hate the suspence leading up to it lol. ride the spiral
Thank you! I appreciate any ideas at all. Unfortunately, I have already had an ANA titer (lupus test), which came back negative. Just last week, I finally got in to see a rheumatologist at Johns Hopkins, and he is still reviewing my other doctors' reports. He did say that he didn't think I had any kind of connective tissue disease though. I have already been to an immunologist also, but I was just told that I should get a second opinion from a specialist (again, at Hopkins). It's looking more likely that surgery will be necessary to remove the liver tumor, and I'm hoping against all hope that that will just solve everything! (I can dream!) Thank you so much! Good luck- I hope your lupus is under control.
I can't say that I have any of those same symptoms. I have plenty of odd symptoms, but those are actually not on my list for once! I tend to have other things, such as an odd heartbeat (supraventriuclar tachycardia) and vaso-vagal syndrome (I pass out alot). I'm sorry you get those attacks though- it doesn't sound fun!
I do eat pretty healthily. Not as good as I could be; I don't eat organic, but I do avoid processed sugars/flours, etc. I have not had a soda in over 2 years now. I do not drink caffeinated tea on a regular basis (I don't drink coffee at all). I eat little red meat, little seafood, lots of fresh veggies & fruits & whole grains. My one weakness is dairy products- I can't give them up- I've tried!
Thank you so much for your reply though. I will definitely contemplate going organic. At this point, I'm willing to try anything. thanks!
i urge you both to read the information in these links, fibromyalgia does not show up on any tests yet altho this treatment is primarily for autoimmune disorders like lupus it explains that its also seeming to work for that as well and there is a possibility that maby you have an endorphine defficiency, do you ever find yourself craveing chocolate especially dureing your flare ups?
and i would consult your doctor with this information im about to give as well and if he says your nuts find a new one and chew him out for not thinkng outside the box a little, no growth comes from stagnated thinking
http://www.gazorpa.com/interview.html ---an interview with the doctor whom discovered this treatment
information on the treatment itself
some testimonies of lupus sufferers whom are undergoing the treatment calling it a miracle, search and you'll probly find more
best of luck
You may look into Celiacs Disease or an allergy/intollerance to gluten. The flushing and ulcers in mouth (Aphthous ulcers) are a common symptom. Have a look and see if it fits; you could always try to eliminate gluten for a few months and see if things get better if you don't want to do the DNA or antibody blood test.
Classic symptoms may include:
abdominal cramping, intestinal gas, distention and bloating
chronic diarrhea or constipation (or both)
steatorrhea -- fatty stools
anemia - unexplained, due to folic acid, B12, or iron deficiency (or all)
weight loss with large appetite, or weight gain
dental enamel defects
bone or joint pain
fatigue, weakness and lack of energy
infertility - male/female
Dermatitis Herpetiformis (DH) is skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks.
Thank you for the suggestions!
My gastroenterologist also felt that alot of my symptoms were similar to those of celiac, so he did have me tested, and it came back negative.
I also saw an allergist/immunologist, and went through the whole gamut of allergy testing again (I have alot of allergies, and have to be re-tested every few years or so). I am not sure if they specifically tested for gluten though; I will have to ask. He did try putting me on a plethora of antihistamine-like drugs to see if the flushing was a mast-cell response that could be halted. Unfortunately, it didn't work.
I have recently been advised to see some top-notch specialists at Hopkins about the flushing. Currently, I have to wait until the hepatologist decides whether or not surgery is necessary for this liver tumor. (I have a feeling that it will be; it's rather large and still growing.)
I am not the most patient person in the world, so in the meantime, I'll just keep gathering more ideas! Thank you for your help!
I am a 28 year old female and have never had any serious health problems until this year. Recently however I went through a long medical experience that sounds somewhat similar to you. In May of last year, I started having an extreme skin rash where I felt itchy all the time and it evolved over the summer months into a rash of lesions/ulcers. I went to over ten doctors/dermatologists/infectious disease doctors and they couldnt figure out what it was but tried numerous antibiotics thinking it was a systemic staph infection. Finally at the beginning of August, one doctor did every test available, including ANA for autoimmune and liver functions tests. These were done several times during August and my GGT (liver enzyme) was consistently approx 600 (normal range 10 - 29 for someone my age) and my first ANA was positive but then negative the second time. Eventually, an ultrasound, CT scan and MRI showed a 13 cm liver tumor that the doctors could not determine whether it was FNH or fibrolamellar carcinoma definitively so I had to undergo a right hepactectomy. Thankfully, it was a large, atypical FNH. In hindsight, I now realize I was suffering from numerous symptoms during the summer including difficulty breathing (the tumor was attached to my diaphragm), extreme tiredness (I am usually very energetic) and abdominal fullness and back pain. It has now been about 2 1/2 months since the surgery and I am feeling better but it is a huge surgery and I still feel like I don't know exactly what was wrong with my skin since they never definitively cultured staph or told me what was going on. Since the tumor has removed and I have not been drinking, my skin ulcers/liver spots completely disappeared. Interestingly, I have started drinking alcohol in moderation again (I was told it was fine to do so) but am starting to think that my skin thing is DEFINITELY related to my liver problems/regeneration because the itchy feeling returns and lesions seem like they may come back the few times I have had alcohol.
I dont know if this helps but feel free to email me if you have questions about the resection and please tell me if any of this sounds similar to what you have experienced because, having gone through this for a while now, I am beginning to believe that these liver lesions are so recently being discovered that the nature of them and incidental symptoms are not truly understood well yet.
Good luck to all of you!
I would really appreciate being able to talk to someone who has actually undergone a liver resection. I have not spoken with my surgeon yet (he is supposed to be calling me shortly- ha!), but the hepatologist gave me a ballpark of 8- 10 weeks recovery. PLEASE tell me that you did not have to be out of work for that long- I'm going out of mind trying to figure out how I am going to live without a paycheck for almost 2 1/2 months! I am assuming that the docs will want to get me in for surgery fairly soon (probably by March?), since it's growing at a pretty fast rate. At the moment, I'm pretty scared. I've had surgeries before, but nothing as major as this. And I completely agree- I too think that liver lesions and their causes/side effects/concurrent conditions aren't understood yet. I just want an answer. I need to know WHAT it is, and what to do about it, you know? They are considering the possibility of it being a carcinoma or a neuroendocrine tumor with me too. He basically told me that it's a 50/50 chance of being cancerous, but they won't know until they operate and send it off to pathology. (I've already had a biopsy and it didn't tell them anything conclusively). Anyway though, again, I would really like to talk with you about the resection and your story, etc. Alot of your symptoms do sound extremely similar, and I'd love to know if you've experienced some of the weirder ones that I have too (or if I just have other weird things going on.) ;)
I will try to email you now, but I figured I would post this, just in case it doesn't work.
Just as an update, my surgeon did schedule me for a liver resection for February 19th. He's going to take ~ 60% of my liver, and my gallbladder. He may also do a bowel resection (he seems to feel that I may have a tumor in my intestines that spread to my liver). They still can't tell me whether or not the tumor has anything to do with my symptoms. It basically depends on whether or not it's cancerous. If it's not cancer, they're adamant that the flushing red, diarrhea, hair falling out, & EXHAUSTION have nothing to do with it. So...while nobody ever hopes for cancer, I REALLY want to solve all of this! If anyone out there has actually undergone a liver resection or experienced something similar (like carcinoid syndrome), I'd still love to hear from you!!!
I hope your diagnosis was not serious. Your post is the only place on internet which mentions bright red flushing above kneecaps! I also have dry flush on face, upper chest, neck, elbows and above knees which lasts at least 20 minutes (even the first flush was that long). Did your first flushes last that long? Did you have diarrhea from the start or did it start a couple years after flushing? My only symptom is flushing but I only started one year ago. I have major flush every few months, with minor flush only on nose or cheeks more often. I think it's carcinoid, but expert carcinoid doctor says no because blood/urine/octreoscan all negative. He says flushing on knees and elbows is not a symptom of carcinoid, so I'd like to know if you've gotten a diagnosis of carcinoid. I've got no diagnosis yet and won't rule out carcinoid until they figure out what else it could be. Were you negative for Chromogranin A blood test? Hope to hear from you. Lori637
I know! It's the weirdest thing to see right above your kneecaps bright red, isnt it?! Anyway, I did wind up having the tumor removed in February, along with 65% of my liver & gallbladder. It wound up being "atypical" but not cancerous. It was actually a mixed FNH/Adenoma, which is apparently why they couldnt diagnose it from scans and the biopsy. I am still experiencing symptoms however (the flushing, feeling of being hot all the time, abnormal perspiration, acne, hair falling out, really bad dandruff, weight gain, etc). The doctors cannot figure me out. I'm actually about to go to a reproductive endocrinologist, because some doctors have recently suggested PCOS. They seem to keep circling back to the ideas of Cushings Disease or PCOS, although most of my tests have come out normal or only slightly abnormal. I'm supremely frustrated!
However, hopefully, to help you, here is how I started...My first flushes only started when I had a few alcoholic drinks. And yes, they lasted over 20 minutes (closer to 40, actually.) I did have diarrhea sporadically then, but I have always had a sensitive stomach, so that wasn't too out of the ordinary. The gastroenterologist has since diagnosed with me IBS. Anyway, then, gradually (over a year or so) the flushing episodes happened when I only had a sip of alcohol. Then gradually, (after another year or so), they started happening when I hadn't had anything to drink. They just happened all the time for no reason. Now, I'm just chronically flushed 99% of the time. Hot weather, cold weather, emotions, physical activity, hot foods/drinks all make it worse. I was also checked and rechecked for carcinoid with the Chromagranin A blood test, the octreoscan, the 5HIAA 24 hr urine tests, etc. They all came back normal. (Except for having some slightly elevated cortisol levels in a few of my tests.) That's actually how they found my liver tumor though. As a last-ditch effort to see if they could "see" any tumors in my intestines to completely rule out carcinoid, they did barium xrays (I think they were called lower GIs). While doing those, they spotted a weird "shadow" in the xrays. The doctor called me later that night and told me he wanted me to have a CTscan. That was done like 2 days later, and again, he called me that night to tell me I had a liver tumor. And apparently, doctors have no idea what causes the type of tumor I had. It's of "unknown etiology". I hate that term now! Anyway, on the bright side, I'm alive (which, while going through this, was in question. If it had been cancerous, they told me it would be a terminal diagnosis, and most likely, I wouldn't live more than a few months). Actually, I hit my 9-month post-op mark just last week, so I'm excited. I go for another checkup next month to make sure my liver has mostly grown back by now. As for the rest of the symptoms that are driving me crazy, the doctors are still trying to figure it out, and I'm hanging in there until they do! If you find out anything, let me know. I'll take all the info I can get! ;) Good luck, and let me know how it goes with you. Thanks! Lauren81
if you scratch an area of skin that is flushed, does it turn red or white where you've scratched? i have flushing symptoms similar to yours and my doc told me it was an allergy but i don't have any allergies that i know of. Just wondering if you get it too.
thanks and hope you're doing better.
Have you ever been checked for mast cell activation disorder? It causes flushing of face & chest. In the past, my knees and feet would get bright red and my knees would feel like they had been in a brick oven. I was told I had "episodic arthritis" although I didn't have much pain at all with it. The rheumatologist said he'd seen lots of cases of it and seemed to believe it had a psychological component to it. He told me to take ibuprofen when it happened, but at least one of the times it happened, I was already taking cyclic ibuprofen for something else!
I responded to your reply to me, but cannot see it posted - so I'm trying again.
It's really scary that all your tests (CgA, 5HIAA, octreoscan, etc.) were normal. What other tests were also normal? I was also retested on some and they were again normal. I think we both have foregut type carcinoid because of areas of flushing and length of flushing. Cushing syndrome might be possiblity for me too because 4 yrs ago coritsol was slightly high. Were you tested for ACTH? If that's high, then it might be ectopic ACTH syndrome - a type of Cushing which usually means a cracinoid is in the lungs. Do your flushes vary in intensity and extent (extremities with the strongest flushes)? The foremost expert on carcinoid in this country says he doesn't think I have it and shouldn't bother re-testing because in all the carcinoid cases he's seen, no one had all negative lab tests. I haven't had any X-ray, CAT scan, etc on the chest -- only octreoscan which is only 85% sensitive. I have read, over the past year, so much on carcinoid that I'm really fearful that I have it because it usually takes average of 8 yrs to diagnose it. Even when it's suspected it takes years. The doctors think I'm paranoid or that I actually WANT to have carcinoid! After flushing on and off every month or so for 6 months, I went 8 months with no major flushing -- only pink cheek and/or nose. But few weeks ago it started again and had two big ones. Also diarrhea (barely formed stools) began in last two months and is almost daily for last two weeks. Still, the expert says it's not carcinoid. No other explanation for symptoms seems reasonable.....Hope you get this message and of course I hope you are feeling better. I'd like to know if anyone figured your case out yet. Hope to hear from you.
As for Mast Cell disease, a triptase blood test was normal, so the doctor ruled it out. If episotic arthritis causes flushing only on the knees and feet, then I'll rule that out because my flushing is face/ears/neck/upper chest/shoulders, sometimes knees and elbows and other areas on arms and legs. Thanks for the suggestions because the doctors don't seem to have any. Can't be menopause because flushes are dry and I never flushed during menopause, 12 yrs ago. Can't be supplements or food allergies because I've taken same things for years with no problems and had 8 months without flushes even after 5 months of flushing. I've kind of ruled out everything........... Guess I'll have to wait several years until blood tests, etc. finally are positive. Too bad it's not possible to figure it out at an early stage. Thanks for your suggestions!
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?
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.
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).
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.
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.
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
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.
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
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?
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.
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...
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.
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.
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.
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..
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
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?
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.
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
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
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.
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