On 9/29/2009 hopehope1 wrote:
Hi everyone. I am a female who has just turned 33. I am panicking at the moment. Have been fatigued since the birth of my son a year ago, but put that down to sleepless nights etc. Started flushing about three months ago, first just my right ear and then kind of spreading across the face. The flushing itself last for a short while only, but the redness persists. Sometimes my ear and flace flush at the same time, sometimes separately. Dermatologist has ruled out Rosascea. Flushing is brought on by eating and stress. I can feel my heart beat "harder" during flushing. If I eat chocolate or drink Coke I get like a rush of adrenaline or endorphins, sometimes followed by flushing but not always. My face is permanently reddish, but better in the morning. Gets worse as the day goes on. I have never had any skin problems before, have not even had a pimple!! Normal bowel habits, apart from feeling a bit nauseaus at times. Get palpitations when I lie down to go to sleep, and it takes a while for me to actually fall asleep due to this. Have been tested for just about everything. No mastocytosis, no early menopause, 24-hour urine normal, Chromogranin A on higher end of normal, Slightly elevated Pancreatic Polypeptide. CT scans showed nothing. Had an Octreoscan which showed prominent uptake in chest area but within physiological limits. Some uptake in the Pancreatic and adrenal area. Doctor doesn't seem to worried, and he is on holiday in Europe for 4 weeks. Have slightly underactive thyroid, and was given Thyroxine for it, but had a really bad reactin to it; major flushing, heart racing, nearly fainted and husband took me to the hospital (by the time I got there I was feeling better). Stopped taking the medication after two tablets.
I am so scared and stressed about this , as I am only 33 and have a three year old girl and a one year old boy at home that I want to see grow up. Does anyone have any advice as to who to contact about this? Am seeing an endo who seems on the ball but if he gives up, who can I contact?? If I have a carcinoid tumor on my pancreas, I understand that the tests usually come back negative?? Such a mess....
Thanks for your time. Oh, and I am based in Sydney, Australia
Dear hopehope1: Do not panick, I was only 40 whin I was Diagnosed You need to stay stress free as much as possible. Carcinoid is very complex. I would suggest speaking with Dr. Warner in New York City. Call his # @ 212-241-4299 He may be able to tell you who to see since you live "Down Under". You want to see somone who specializes in Carcinoid. There is an issue with carcinoid that may effect your heart. The tumors release what is called Seratonin. This is naturally produced in the body but since the tumors release more of it you could have excessive amounts. I had 5 times the amount than a "normal" human should have before I had my primary removed. I was put on a med called SANDOSTATIN made by Novartis Pharmaceuticals. This will help supress the large doses of Seratonin. The other thing about having large amounts of Seratonin is that it could damage your heart valves on the right side. Your blood travels from the right side of your heart, up, over and into the bottom of your lungs than through the left side of the heart valves. I have an issue where I have a tiny hole in my heart so I had a simple test done to see if the hole was large enough to let the blood (and seratonin) leak from the right to the left without getting absorbed by the lung first. It wasn't the case so I was OK for that. But it is important to see a cardiologist who knows how to treat Carcinoid. The other thing is that you should never have Epinephrine, Ever!, This may cause Severe Increase or Decrease in your blood pressure and may kill you (Called Carcinoid Crisis). Dentists use it in novacane so be very carefull about that. Get a medical bracelett that says no epinephrine on it if infact you do have carcinoid. and be sure to let any one doing any procedure on you that you may or do have Carcinoid and should be noted on your charts that you should not have Epinephrine. Most people I have spoken with have had flushing after they ate. Also if drinking red wine may be a trigger to flushing. Some people have no symptoms at all which is A-Typical but should be checked anyway. It is importatnto get the primary. You should read all the messages in this forum and also check out the ACOR web site it has a forum and may be of help to you also. There is also a test called a pancreostatin test the is a molecular version or more precise test that can detect your "markers" better than a (CGA) Gromogranin A test. Avoid eating foods naturaly high in seratonin like Bananas, pineapple, nuts, avacado, tomato, chocolate, cafine. When you took a 5HIAA Urine test they should have given you a list of foods to avoid while taking this test. I wish you all the best. Katsen