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Gastroenterology (Expert Forum)
5HIAA 6.8 (slightly elevated) so no carcinoid.. could it be mastocytosis?
Answered by
Kevin Pho, MD - Internal Medicine
Kevin, M.D.
Boston - MA
This forum is for questions regarding Gastroenterology issues such as Acid Reflux (GERD), Barretts Esophagus, Colitis, Colon/Bowel Disorders, Crohn's Disease, Diverticulitis/Diverticulosis, Digestive Disorders, IBS, Stomach Pain.
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5HIAA 6.8 (slightly elevated) so no carcinoid.. could it be mastocytosis?
by Pixie1969too, Sep 18, 2003 12:00AM
Hello,
First my background info:
33 yr old female
PCOS w/IR, GERD, hiatal hernia, IBS, elev. AST(36)&ALT(72), fatty liver, chol. 210, LDL 130, esophagitis, gastritis, polyps in colon (1 was adenoma), acalc. cholecystitis/gb removed 10/01, liver biopsy 10/01 neg. for malignancy, constant pain in gb area but MRCP negative (pain possibly from fatty liver?).
Meds: Glucophage XR 1500 mg, Protonix 40 mg, 1 Imodium daily, fibercon at night. Face: Rosanil wash and Elidel in the am.
In short, I'm a complete and total mess.
I originally posted on 8/11/03 re: whether or not my symptoms sounded like carcinoid syndrome. Dr. Kevin, you kindly responded that it could be a possibility and that I should investigate it. I did the 24 hr urine 5HIAA and it came back only slightly elevated at 6.8 mg/liter (r= 0 - 6.0) (yes, I did follow the restrictions). I am still having the same problems as before with diarrhea, abdominal pains, nausea, hot flashes, fatigue, EXTREME sensitivity in my facial skin, and EXTREME flushing when I drink alcohol (have only tried to drink 3 times since April and even a sip will turn my face purple-red, hard, and burn as if someone poured acid on it). I noticed a few months ago I had this little raised bright red "mole" on my scalp 3" above my ear. Just recently it began to burn even if I had not used any hair products. My dermatologist said it was a cherry angioma and to leave it alone, couldn't explain why it would burn. I'm also having frequent tension-like headaches starting in the back of my neck and going up my head. My sex drive has gone from WAY high to almost zero over the past few months.
I am so frustrated and I'm getting very depressed. The almost daily diarrhea bouts made me break out in tears at work the other day. I'm only 33 but feel like I'm 85.
My gastroenterologist has been extremely patient with me and very helpful. He called with my results and said since the 5HIAA was only slightly elevated that this all may be caused by something else. We ruled out Celiac Disease a few months ago with bloodwork, so he thought I should be checked for mastocytosis. That doesn't sound like a fun thing to have either, but if I do have it then so be it. The problem though is that I cannot find a doctor in my area that is familiar with this. He suggested my Endocrinologist but she has never dealt with this before and suggested maybe an allergist/immunologist.
What do you think of my symptoms in relation to mastocytosis? And can you either suggest a doctor I should go to (I live in northern NJ) or point me to a resource where I can get this kind of info? Or maybe even just tell me what KIND of dr. I should look for? OR do you have any other ideas as to what might be at the bottom of all this?
I am at the end of my rope, I've always been such a positive person but this all has totally changed me. I really need help, I hate myself more every day.
Thank you very much. Sorry this is so long..
First my background info:
33 yr old female
PCOS w/IR, GERD, hiatal hernia, IBS, elev. AST(36)&ALT(72), fatty liver, chol. 210, LDL 130, esophagitis, gastritis, polyps in colon (1 was adenoma), acalc. cholecystitis/gb removed 10/01, liver biopsy 10/01 neg. for malignancy, constant pain in gb area but MRCP negative (pain possibly from fatty liver?).
Meds: Glucophage XR 1500 mg, Protonix 40 mg, 1 Imodium daily, fibercon at night. Face: Rosanil wash and Elidel in the am.
In short, I'm a complete and total mess.
I originally posted on 8/11/03 re: whether or not my symptoms sounded like carcinoid syndrome. Dr. Kevin, you kindly responded that it could be a possibility and that I should investigate it. I did the 24 hr urine 5HIAA and it came back only slightly elevated at 6.8 mg/liter (r= 0 - 6.0) (yes, I did follow the restrictions). I am still having the same problems as before with diarrhea, abdominal pains, nausea, hot flashes, fatigue, EXTREME sensitivity in my facial skin, and EXTREME flushing when I drink alcohol (have only tried to drink 3 times since April and even a sip will turn my face purple-red, hard, and burn as if someone poured acid on it). I noticed a few months ago I had this little raised bright red "mole" on my scalp 3" above my ear. Just recently it began to burn even if I had not used any hair products. My dermatologist said it was a cherry angioma and to leave it alone, couldn't explain why it would burn. I'm also having frequent tension-like headaches starting in the back of my neck and going up my head. My sex drive has gone from WAY high to almost zero over the past few months.
I am so frustrated and I'm getting very depressed. The almost daily diarrhea bouts made me break out in tears at work the other day. I'm only 33 but feel like I'm 85.
My gastroenterologist has been extremely patient with me and very helpful. He called with my results and said since the 5HIAA was only slightly elevated that this all may be caused by something else. We ruled out Celiac Disease a few months ago with bloodwork, so he thought I should be checked for mastocytosis. That doesn't sound like a fun thing to have either, but if I do have it then so be it. The problem though is that I cannot find a doctor in my area that is familiar with this. He suggested my Endocrinologist but she has never dealt with this before and suggested maybe an allergist/immunologist.
What do you think of my symptoms in relation to mastocytosis? And can you either suggest a doctor I should go to (I live in northern NJ) or point me to a resource where I can get this kind of info? Or maybe even just tell me what KIND of dr. I should look for? OR do you have any other ideas as to what might be at the bottom of all this?
I am at the end of my rope, I've always been such a positive person but this all has totally changed me. I really need help, I hate myself more every day.
Thank you very much. Sorry this is so long..
Doctor's Answer
by Kevin Pho, MD, Sep 21, 2003 12:00AM
, Sep 21, 2003 12:00AM
Mastocytosis refers to the increased amunt of mast cells in the system. Released mast cell mediators may induce vasodilation, hypotension, flushing, pruritus, syncope, diarrhea, fatigue, headache, cachexia, local anticoagulation, and/or tissue remodeling and fibrosis.
Systemic mastocytosis may occur at any age among adults. This disease can cause flushing, syncope, vascular collapse or anaphylaxis triggered by exercise, alcohol, aspirin and NSAIDs, morphine, narcotics and opiates, insect stings, infections or exposure to iodinated contrast and medical/surgical procedures (such as biopsies or endoscopy).
The reported frequency of GI effects varies greatly depending upon the source, ranging from 18 to 85 percent with a mean of 50 percent. Symptoms and abnormalities include abdominal pain, diarrhea, nausea, vomiting, peptic ulcer disease, and gastrointestinal bleeding. Precipitation of symptoms is common with the administration of drugs (such as narcotics, aspirin and NSAIDS, procaine, and penicillin), exposure to cold or hot temperature, barium enemas, trauma, stress, exercise, alcohol, and medical procedures (including bone marrow biopsy, laparotomy, or endoscopy).
Diagnosis would involve various tests of the bone marrow for increased amounts of mast cells. Elevations in urine histamine levels are useful for the diagnosis of systemic mastocytosis. A urinary histamine concentration above 30 ng/mL is considered abnormal, with two measurements required for diagnostic accuracy.
You may want to discuss this diagnosis with a hematologist for further evaluation.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Systemic mastocytosis may occur at any age among adults. This disease can cause flushing, syncope, vascular collapse or anaphylaxis triggered by exercise, alcohol, aspirin and NSAIDs, morphine, narcotics and opiates, insect stings, infections or exposure to iodinated contrast and medical/surgical procedures (such as biopsies or endoscopy).
The reported frequency of GI effects varies greatly depending upon the source, ranging from 18 to 85 percent with a mean of 50 percent. Symptoms and abnormalities include abdominal pain, diarrhea, nausea, vomiting, peptic ulcer disease, and gastrointestinal bleeding. Precipitation of symptoms is common with the administration of drugs (such as narcotics, aspirin and NSAIDS, procaine, and penicillin), exposure to cold or hot temperature, barium enemas, trauma, stress, exercise, alcohol, and medical procedures (including bone marrow biopsy, laparotomy, or endoscopy).
Diagnosis would involve various tests of the bone marrow for increased amounts of mast cells. Elevations in urine histamine levels are useful for the diagnosis of systemic mastocytosis. A urinary histamine concentration above 30 ng/mL is considered abnormal, with two measurements required for diagnostic accuracy.
You may want to discuss this diagnosis with a hematologist for further evaluation.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Member Comments (1)
by Pixie1969too, Sep 18, 2003 12:00AM
Also, I've had numerous various imaging studies (CT Scans, small bowel series) done of my abdomen and nothing has shown.
by Hadou, Nov 16, 2008 08:28PM
A related discussion, Mastocytosis/Herpatic Sores was started.
