I need to know if these two things coinside....

[bamagirl]

I am a 31 yr old wf accountant who has been ill on and off for the past four years.  It started out with episodes of tachycardia and insomnia in the middle of the night.  I would go to bed feeling "wired" like I had taken sinus medicine or something and then wake up in the middle of the night with severe palpitations that would last most of the night.  I am not stressed at all so I knew it wasn't a panic attack.  I wrote it off as too much caffeine and would always go in to work the next morning.  The next episode happend while I was driving.  I had a cool rush come over my body and then palpitations again for most of the day.  I also was very wear and had severe diarrhea.  After that, I went down hill.  I was so waek I couldn't hold my head up.  I had to take a leave from work.  I had every test imaginable and all were negative except a holter moniter which was capturing sinus tachycardia in the 150 to 160 range even while laying down.  Finally I quit going to doctors and just quit work feeling horrible every day.  All the while I would have these strange episodes of tachycardia.  Then the episodes would get worse.  I would feel a rush go over my body, then palpitations, then weakness, then nausea & diarrhea, then the next day I would have a stinging sensation all over my arms and legs like ants were biting me.  I finally went to Vanderbilt University for some research studies and they discovered that I have very high methylhistamine levels in my urine(394).  I was wondering, are all of these episodes the same?  Sometimes I get naseaus, flush, then have palpitations and fatigue.  Other times I have a cool sensation go over my body, then get papitations and the next day wake up with a stinging sensation on my arms and legs.  I just want to know if all of this is one illness or two different things.

[bamagirl]

Yes, I have had my thyroid tested, that was one of the first tests that were done.  My gyno is at a loss.  It seems my condition is very rare and I need the assistance of the Mayo Clinic.  It has been a very long and life altering battle but I am hoping we are getting closer to an answer with these high histamine level results.  Thanks for all the good advice and questions :)

[eveningstar]

Have you had your thyroid levels tested?

[yoshi]

just curious,what does your ob/gyne have to say about your condition??

[Kevin Pho, MD]

Ths symptoms are certainly suggestive of a histamine excess - which can cause flushing, palpitations and fatigue.  The high methylhistamine levels in the urine can be suggestive of one of these diseases - namely, mastocytosis.  GI symptoms of this can include abdominal pain, diarrhea, nausea, vomiting, peptic ulcer disease, and gastrointestinal bleeding.

To further diagnose this, a bone marrow biopsy can be considered to evaluate for abnormalities that can affect the marrow.  

Carcinoid syndrome can also be considered, and has been discussed in the comments below.  Testing the urine for 5-HIAA is another test that can be considered to pin down this diagnosis.  

These options should be discussed with your personal physician or gastroenterology specialist.

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.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[surgeon]

As I was reading your post I was wondering if you'd had your urine tested for certain things, including histamines. When I got to the part that you had, and it's elevated, it made sense. What you describe could be various things, but certainly on the list are certain tumors which produce abnormal levels of certain hormones. One is called carcinoid tumor, and what you describe is consistent with "carcinoid syndrome," which comes from having elevated levels of certain histamine-related hormones. There are also tumors of the adrenal  that can produce similar symptoms. The good news is they are generally benign tumors and in the case of adrenal tumors, usually easily removed. Carcinoid syndrome is a bit different, in that it usually means the tumors are in the liver, where they may not be removeable. But there are drugs that can be given to control the symptoms, and the tumors themselves tend to grow very slowly. I'm certain the people at Vanderbilt will be discussing this with you, and ordering more tests, such as abdominal CT scan.