BRIGHT RED FLUSHING- liver tumor & exhaustion!

[lauren81]

Please help! 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 flush BRIGHT RED almost all the time now. My face, neck, chest, sometimes arms & knees turn mottled bright red, while the tip of my nose, fingers and toes freeze. It happens for no reason, and I feel ridiculously HOT! I sweat more than normal now, and this is gross, but it has a strong sour smell.(NEVER used to smell that way before). I am EXHAUSTED all the time & the hair on my scalp is falling out. I also get little white ulcers in my mouth frequently, and 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 (it was 6cm in August, and 8cm now). Since FNHs aren't supposed to grow like that, the doctor is concerned that it might have been misdiagnosed. A liver biopsy WAS done in August (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 (surgery). The doctors can't link my flushing to the tumor though. I just don't see how it's possibly anything else. Just this week now, I am now seeing little flashing lights in my peripheral vision (eyes open and closed) for just a few seconds. My doctor's quickness in calling me about these results (the CT was done on Monday, and I heard from him on Wednesday), 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 starting to panic. Does anyone have ANY ideas?!? I'm open to any suggestions! Thank you!!!

[lauren81]

star queen,

Thank you! Unfortunately, I have already been to an endocrinologist, and completed several 24 hour urine tests, as well as a cortisol suppression test, blood tests, etc. (They originally thought I probably had a pituitary tumor. After an MRI failed to see any macro or micro adenomas though, they abandoned that idea. I was checked for Cushings, and while I do have many of the symptoms, the cortisol suppression test didn't support that theory either. I had Hashimoto's disease several years ago (thyroiditis), but it resolved itself, and my thyroid levels are only borderline low now. I did mention the fact that these symptoms (especially the flushing) appeared after the Hashimoto's diagnosis, but the only thing they could find in my bloodwork was my female access horomones were very low one time. I agree with you- I do not take any herbal/over the counter things, and I also stopped drinking alcohol about 2 years ago, because it exacerbated the flushing. Obviously, since the liver tumor was diagnosed, I most definitely won't touch it now. The hepatologist said the chance of a horomone-secreting neuroendocrine tumor being part of the FNH is extremely low. Unfortunately, due to the tumor's size and the iffy diagnosis, it looks like I'll be having a liver resection (surgery) done. So I probably will have to wait and see if the flushing goes away then. If not, I've been told that I should try endocrinological and immunolgy experts at Johns Hopkins. Thank you so much for the reply though. I was so upset when I originally posted this, but I've sinced calmed down a bit. I am just not a patient person at all, and apparently, 2 years of trying to get diagnosed is my limit! lol. thank you!

[star queen]

You need to get your Thyroid checked.  Thyroid testing is usually a blood test, but you can also get the 24 hour urine test done for Thyroid and Pituitary.  It is a bother, but a great test.  You may also get your hormone levels tested, that is also done by a simple blood test. I suggest you stay away from over the counter and herbal remedies until your liver problems are worked out. Most of the herbs and ITC meds can effect the liver and may cause more harm than good for you.  Tumors can sometimes make their own hormones and cause problems seemingly unrelated to the organ they are in or near.  When your liver problems are resolved, there is a chance that your other problems will resolve as well.  Since your symptoms are more annoying than physically harmful, If your blood and urine tests are normal, I suggest you put up with your symptoms until after the liver resolves before moving forward on them. I know you are tired, but it is important to get some exercise every day to keep your body functions and muscles in good condition, so take short walks even it is only around the yard, up and down the driveway, or up and down the hallway in your apartment or house.   good luck