BRIGHT RED FLUSHING- please help!

[lauren81]

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!!!

[JRychner]

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...

[basktbal22]

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.

[Hannahmoo]

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?

[pumpkin71]

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

[LivingInHope]

You probably already had your estrogen levels & FSH checked?

[Hannahmoo]

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.