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 April 26, 2009, 08:30:59 PM
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Full Member
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Posts: 125
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I've never heard of a metabolic panel test before.. I will be looking that one up after I post this up. I've pinpointed the closest description of this phantom smell..a chemical/plastic burn or wires burning. It gets so strong I have to sit down sometimes. I did some research on this and they say it might be due to a brain tumor (one can only hope!). I'm praying my upcoming MRI will show something.. Update* I think I've gotten blood tests done for some of the ones listed in the metabolic panel test. I'm pretty sure I've never had most of these done though. I'll mention this test to my GP soon. Thanks Jas. 
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May 11, 2009, 02:25:41 PM
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Hey Kirsten! No, I don't recall ever doing a metabolic blood panel run before. I've never heard of it before, I'll look it up after this post. My decreased urine looks very cloudy..I've never looked at it real close up..it could very well be foamy or bubbly. I've had blood tests to check my kidney function, all normal. I did many random urine tests and two 24 hour urine tests so I'm guessing they would've done a protein test. They were all normal. I haven't had a CT scan of my kidneys yet, but I think that's my next step. I have suggested getting a referal to a Nephrologist, but my doctor said that until they find something wrong in my kidneys, he can't refer me. ?!?! I will keep trying to push for a referal though. I thought it was my kidneys for the longest time too, but after all the normal tests, I thought it could be my liver. Do you know that liver disease (acute or serious) can lead to edema, hyperpigmentation, problems with urine output, lathargy, heat intolerance, hot sensations (especially the face), dark urine, & constipation/diarrhea. I didn't know that the phantom smells had anything to do with a kidney disorder! That's something I didn't know for sure! I'll start looking into possible kidney problems. Thanks for all the info Kirstin! 
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July 18, 2009, 07:06:03 AM
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Hey girls! Sorry I haven't been updating for quite some time now. So I'm going to make this quick. Pathology on ileum (colonoscopy found excessive nodular mucosa in the ileum) came back normal (whatever THAT means *rolls eyes*). My gastro put me on this medication for people with crohn's and ulcerative colitis, which did not stop the diarrhea. He then put me on this medication that slows down my bowels so that I don't have diarrhea anymore. Again, not working. I still have loose bowel movements - just not as frequent as before, and since my bowels are slower b/c of the medication, I'm feeling alot of gas/pain. My family doc put me on a mild diuretic and I'm feeling alot better than before with the edema. I'm finally peeing out clearer fluids which is what I like to see. I've been having troubles breathing when I'm lying down (I think its because my edema has gotten worse). I told my doc about this, and surprise, surprise..he didn't listen and decided to give me an xray of my chest instead of giving me a stronger diuretic. anyways girls, I have alot of catching up to do with whats going on with u guys so I'm gonna go and start reading 
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September 16, 2009, 11:44:44 PM
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Full Member
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Ok, So as a record for myself, I'm going to write down the tests that I've done since I was away from the forum:
-Colonoscopy (found "excessive" nodular mucosa suggesting nodular hyperplasia)
-Endoscopy (nothing)
The doc I'm seeing got fed up with me and just gave me a YEARS WORTH of prescription diuretics to help with the swelling. (he refuses to send me to a urologist for my undiagnosed urinary problems..but agrees to the years worth of diuretics...hmm..is there something wrong with this picture? Jesus, I can't believe doctors these days..I should file for medical malpractise lol)
After 2 weeks of taking them, I felt sore right along the sides of my torso..went to the clinic and they found white and red blood cells in my urine..TWICE. It wasn't a UTI because they cultured it TWICE, and there was no bacteria.
I wasn't feeling pain while urinating or anything. I asked 2 pharmacists, 1 doctor and 2 nurses about diuretics causing blood in urine. THEY ALL SAID IT WAS IMPOSSIBLE! There should be a red light going off right here. If diuretics don't cause blood in the urine, then why is am I getting blood in my urine WHILE ON diuretics and NOT when I'm off...???HMMM...
Went to the ER and they did blood, urine, xray and ultrasound of my abdomen, and they found little bit of bacteria in my urine, and found that I was severely constipated.. They said I had about SIX POUNDS (6lb) of stool in my colon..
I wasn't feeling uncomfortable or anything because I guess I got used to having so much stool backed up in me.
I told the GP yesterday and he put me up for a CT scan..which would take up to 2 months for an appointment :(
His exact words: "I'm willing to do any tests that I BELIEVE IS NECESSARY to reassure you that THERE"S NOTHING MORE I CAN DO TO HELP YOU"
Should I be complaining or celebrating with what he said? What do you guys think?
Anywhoo, 'm seeing another GP (secretly...you're not suppose to have two GPs at the same time, but who cares lol) and she referred me to a urologist. I hope that things will look up for me..I'm buried in school work..see y
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September 27, 2009, 02:49:23 AM
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Newbie
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You are describing multiple symptoms of acromegaly - darkened skin, swelling of soft tissues, growth in feet (and hands), fatigue, and particularly the facial changes. Nothing else - no other medical condition - causes abnormal craniofacial bone growth like you describe. Other illnesses like Cushing's can cause your face to become rounder - a so-called "moon face," like people get when they take steroids - but nothing else causes craniofacial bone growth. The excess eyebrow bone growth is called "frontal bossing."
Acromegaly is caused caused by excess growth hormone (GH) which increases somatomedin-C (also called IGF-1.) Almost always, it is caused by a pituitary tumor, hence the reason you had the brain scans. You also had a skull x-ray to look for excess deposition of bone which occurs in acromegaly. So your GP was obviously thinking along the same lines as I am. Unlike him, though, I wouldn't stop there.
The pituitary is NOT the only place a tumor can lead to acromegaly, unlike popular belief (and websites galore that discuss acromegaly.) Sometimes, another kind of tumor elsewhere in the body can produce GH. Or, a tumor in the hypothalamus or elsewhere in the body can produce GH releasing hormone (GHRH) which stimulates the pituitary to make more GH than is needed.
But most important, first things first. There's no point in getting more scans to look for other tumors if you are not making excess growth hormone, because if you aren't, you don't have acromegaly. If I were you, I simply would not accept that acromegaly has been ruled out until I was sure that I had had growth hormone levels checked correctly, and not just had a single random level, which is absolutely meaningless. IGF-1 levels can be measured directly, and GH levels should be checked at multiple times of day and/or using an oral glucose load, which can be more accurate.
See a real endocrinologist and take photographs with you to show the progression over the past several years. This is absolutely KEY to get the doctor to believe you, because the changes and symptoms are so non-specific that acromegaly usually takes years (12 years, on average) to get diagnosed. However, a series of photographs makes the diagnosis so clear that it can practically be diagnosed by pictures alone. This is the kind of condition worth traveling to the US or paying a doctor out-of-pocket for in Canada, if allowed. The sooner you act, the better, because if this is acromegaly, the bone growth will continue until you start treatment.
Hope this helps.
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September 28, 2009, 06:35:41 PM
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Group: Administrator
VIP Member
Gender:
Posts: 921
I Will Be Diagnosed !
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Jenny if you can start taking pictures so you compare features, may help the Doctor.
I've just been researching a little more and found some more info that might help:
Other tumors
In a few patients, acromegaly is caused not by pituitary tumors but by tumors of the pancreas, lungs, and adrenal glands. These tumors also lead to an excess of GH, either because they produce GH themselves or, more frequently, because they produce GHRH (Growth Hormone Releasing Hormone), the hormone that stimulates the pituitary to make GH. In these patients, the excess GHRH can be measured in the blood and establishes that the cause of the acromegaly is not due to a pituitary defect. When these non-pituitary tumors are surgically removed, GH levels fall and the symptoms of acromegaly improve.
When do you see your Doctor next ??
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September 28, 2009, 06:52:36 PM
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Full Member
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Posts: 125
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Hey Sammy, Yes, I've been doing alot of research on this. Last time I brought old photos of myself to the doc, he definately noticed a change and thanked me for bringing the photos, saying that "they helped alot". But this was back when I thought I had Cushings.. He did an xray of my skull to look for any tumors (poor judgement on his part..an xray is not the best way of detecting tumors). I definately am taking this whole acromegaly idea seriously. Though, I don't think I match some of the symptoms (excess sweating, pain in joints, and sleep apnea). I'm just focused on getting the GH suppression test and IGF-1 blood tests. I have yet to make an appointment with my doctor, I am planning on doing that after the CT scan tomorow morning. Wish me luck!! 
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