Discussions By Condition: I cannot get a diagnosis.

Weird Symptoms. Possible Endocrine Disorder?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: bmac423
  • February 21, 2009
  • 05:11 PM

First off, I'm a 23 year old male in good shape (6'1" 173) and have always been relatively healthy until the last few years.

For the past couple of year I have suffered from some very strange symptoms. I have constant varying amounts of cold sweats, very noticeable in the armpits, but also hands and feet. When the sweats are bad, I have times where I seemingly can not retain liquids, when I drink I immediately have to urinate. Along with this comes a dry mouth (sounds like I am slurring words), debilitating fatigue and a fuzzy head.

About the same time this started happening, I noticed that I would have facial blushing at the drop of a hat. Things that would never bother me before would make me beet red and sweaty. Social interactions, a big meal or just extreme focus (like working on a test or project) will do the trick. I'm in college and if a teacher asks me a difficult question I often will just break out in a sweat. It's very embarrassing. This would have never happened to me before. I also have feelings of anxiety, but I don't know if this is because of the possibility of facial blushing and gas or something physiological. I took accutane and I've read that facial blushing is a possible side-effect, but I'm not sure.

My blood sugar levels have been tested multiple times and they always come up normal. I do have a history of bowel problems (gas, bloating, constipation, occasional diarrhea) and have been diagnosed with systemic mastocytosis of the colon. The bowel problems started a few months before the sweats and accompanying symptoms.

Recently, I was referred to an endocrinologist by my gastrointerologist. I did a 24 hour urine test and had several samples of blood taken. My results were the following:

Early Morning Gastrin level was 19
Thyroid Stimulating immunoglobulin was 85
ANA was negative
Thyroglobulin and thyroid peroxidase antibodies were absent
TSH was 2.8

Vasoactive intestinal polypeptide was 39.7
Vitamin b12 was 326

All of these are said to be normal, however these are the abnormal results:

Metanephrine was 270
Normetanephrine was 495
Total Metanephrine 765

Cortisol was 25.6

24 hour urine for 5 HIAA was 12

I've read that the 5 HIAA results can be affected by mastocytosis. I've also read that the elevated metanephrine may be a sign of an adrenal tumor, such as pheochromocytoma. However, I just had a catscan and the adrenal glands along with everything else in the abdominal scan came up clear. I really think there may be something going on with my endocrine system, based on my symptoms and these results. I also have a bit of vitiligo on the left side of my scrotum which points to a possible autoimmune response to something in the endocrine system.

What do guys think? I fully appreciate any input. Thanks in advance.

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3 Replies:

  • That's interesting. What do you do to relieve your symptoms? It seems like those things are unavoidable.
    bmac423 2 Replies
    • February 22, 2009
    • 00:54 AM
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  • My blood sugar levels have been tested multiple times and they always come up normal. I do have a history of bowel problems (gas, bloating, constipation, occasional diarrhea) and have been diagnosed with systemic mastocytosis of the colon. The bowel problems started a few months before the sweats and accompanying symptoms. Im no doctor but I have an uncle with systemic Mastocytosis.. so thought i'd comment. Sweating and flushing are common in systemic mastocytosis (my uncle sweats and flushes often before he collapses with it). Systemic Mastocytosis can affect all different parts of ones body. It's quite a serious illness. I wonder if all your symptoms are due to it.
    taniaaust1 2267 Replies
    • February 22, 2009
    • 01:44 AM
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  • Im no doctor but I have an uncle with systemic Mastocytosis.. so thought i'd comment. Sweating and flushing are common in systemic mastocytosis (my uncle sweats and flushes often before he collapses with it). Systemic Mastocytosis can affect all different parts of ones body. It's quite a serious illness. I wonder if all your symptoms are due to it.That's something I've considered too. I'm kind of just hoping it's something else, something more treatable. Also, the cold sweats, dry mouth, and frequent urination don't fall in line with a typical mastocytosis case. The sweats typically associated with mastocytosis come with hot flashes and flushing. It makes me think that there might be more to it, although it is rare to find a perfect diagnosis for anything. What does your uncle use to treat it? My doctor has me on a mast cell stabilizer called ketotifen, but I don't think it's helped all that much. From what I've read, it's supposed to make a significant difference if the mastocytosis is causing the problems.
    bmac423 2 Replies
    • February 22, 2009
    • 05:48 AM
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