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    Old 07-08-2008, 02:34 PM   #1
    nopearce
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    I need help

    I thought I only had secondary adrenal insufficiency, but I went to my endo today, and he said he thinks I have a tumor on one of my adrenal glands or near my spine (something to do with my nerves???). I was shocked. After all of this time, and now I have to start worrying about a tumor. He ordered a 24 hour urine test, bmp, and an MRI of my adrenals, spine, and ovaries. He said my symptoms aren't the norm. My heart rate and blood pressure goes way up when I stand. I am so confused and nervous. If a doctor tells you he thinks you have a tumor before checking, does that mean he is almost positive.

     
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    Old 07-08-2008, 02:51 PM   #2
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    Re: I need help

    You could be me posting, except for the name! I'm from Louisiana also, and I have a small adenoma on my adrenal gland, AND my heart rate and b/p also go up when I stand! And that is why I stay home most of the time, and have to sit in my living room. I can't shop anymore or go do anything in the heat(even sitting!) as my hr and b/p go up and I feel lightheaded. I have been at a standstill with all this for 2 1/2 years, as none of my 24-urines will show anything abnormal. I can just feel the "surge" happen the longer I stand, or if I get stressed. How are your symptoms?

     
    Old 07-08-2008, 03:31 PM   #3
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    Re: I need help

    That is exactly what is happening to me. I have been feeling bad for 2 1/2 years. I had to retire from teaching because you can't have a teacher who can't stand and needs a nap everyday. Do you sleep well at night? I don't. I also sweat easily, especially in my sleep. I have all of your symptoms. I sit in my living room all day because every time I stand I get dizzy, a little nauseous, and a funny feeling in my chest. I get palpitations, also. Where in Louisiana do you live?

     
    Old 07-08-2008, 06:43 PM   #4
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    Re: I need help

    Well, at least I know I'm not talking to myself as I'm not a teacher, LOL! I live in southwest LA. I don't sleep well at night. I can't work, obviously, as I can't stand, and I quit driving because of never knowing when it's going to make my heart race and feel lightheaded. Whereabouts are you?

     
    Old 07-09-2008, 07:38 AM   #5
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    Re: I need help

    I live 40 minutes north of Lafayette near I-49. I went to endo who is in La Place, because he was the only one I could find that specialized in adrenal problems. He was treating me for secondary insufficiency, but I told him about how I still couldn't get off the couch. I walk a little and get that "surge" which makes me weak and dizzy. He asked if I exercised (lol), and I told him I walk the dog for 3 minutes and try to do little things around the house, but then get tired. I also told him how I can shop for a few hours, but I have to rest first, and then it takes me a day to recover. I asked if this is normal, and he said no. I brought my med records from my heart doctor and he saw how erratic my heart rate and blood pressure are, so he now thinks I also, have an adrenal adenoma. Right now I am doing the lovely 24 hr. urine test, then I will go in a few days to do an MRI of the adrenal, nerves along the spine, kidney, bladder, and aorta.

    I have a question; if you have an adrenal adenoma, why don't they take it out. Apparently, you have symptoms, even if your 24 hr tests don't show it? I told my husband about you, and he said I will go to Oschner's if my tests come out like yours. I am so tired of being tired and feeling like I am always in a brain fog. I pray this will lead to a solution.

     
    Old 07-09-2008, 08:13 AM   #6
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    Re: I need help

    I live in Kinder, just down Hwy. 90 west from Oplelousas! Boy, we are close. I went to Oschner about 5 years ago, and the endo I saw did absolutely nothing for me. I have been to Houston, and same thing. I am seeing a dr. in Lafayette, right now, who is interested in what's going on with me, and always says he is looking at my chart in his "off" time so he can possibly see a connection somewhere. As I have a nursing background(but no career), I am able to really discuss with him what might be happening with me, then he might explain why that can't be or yes, it might be a possibility. He is actually going to a conference in the Northwest US, where he is bringing my chart information, and is going to consult with some doctors he said specialize in adrenal issues. I AM THRILLED! He will be back Sunday and told me if I didn't hear from him next week, to call him to see what he found out. He really seems like he wants to understand all this.

     
    Old 07-09-2008, 08:29 AM   #7
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    Re: I need help

    I forgot to mention about the adenoma. Mine is 7 mm, which is considered too small to worry about. However, I have read many places that IF it is a pheochromocytoma, a small adenoma can wreak havoc. I just feel like whatever I have happens when I get stressed, so it's hard to catch. For them to even consider removing it, they have to have labs to back up what it is, or it has to be above a certain size, like 3 cm(?), or something like that.

     
    Old 07-09-2008, 11:57 AM   #8
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    Re: I need help

    I live in Washington. Not far at all. I also see a doctor in Lafayette. My doctor is Dr. Rizk. He says I am fine and healthy with no problems. He is out of town right now, which I know, because they had to reschedule my appointment from Friday to later in the month.

    I have heard that even a small adenoma can cause a lot of problems or none. Something needs to be done or figured out so you can lead a normal life. I hope he has good news for you when you get back. When do you see him again?

     
    Old 07-09-2008, 12:05 PM   #9
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    Re: I need help

    Hey, I'm a thyroid patient of Dr. Rizk also. However, the doctor in Lafayette that is really working on my problem is someone else. Dr. Rizk has been my thyroid doctor for about 8 years, and just kind of watches it. I went to see a thyroid surgeon this past winter, as I was beginning to have episodes where I would wake up unable to take a breath if I was on my back, and the surgeon said a Hashimoto's gland can grow and shrink over time. This caused it to kind of shrink-wrap around my trachea. I had it removed and I don't have the breathing issue anymore. I kind of had to be pro-active to have this done, as I knew my thyroid was compressing.

    My other doctor will be back in LA Sunday, but is supposed to call next week. Believe me, if he doesn't call by Tuesday afternoon, I'll call. So this doctor you see in La Place is an adrenal specialist? I would like to hear what he believes your adrenal is doing to cause your symptoms. What is he checking for in your 24-hour urine? Cortisol, metanephrines?

     
    Old 07-09-2008, 12:30 PM   #10
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    Re: I need help

    The doctor I see in La Place is Dr. Pedroza. He says my blood pressure and heart rate goes up drastically when I stand up, which are causing my "surges" which are not what someone with adrenal insufficiency is suppose to have upon standing (it should go down). So he thinks I have pheochromocytoma. He ordered the 24 hr. urine test to measure for epinephrine and norepinephrine (the word you said). He ordered a BMP and also drew a lot of blood to check it in there also. Then, we will look for a tumor.

    I had spine and rotator cuff surgery last fall and went into an adrenal crisis. He and Rizk thought my adrenal insufficiency was caused from using Flonase and Advair. (I don't think I have asthma though. I think my breathing problems come about only when I get these "surges".)

     
    Old 07-09-2008, 12:37 PM   #11
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    Re: I need help

    I kind of get a "tight" chest when I have my surges, also. I tried an inhaler a couple of years ago, but it made me extremely racy, like a panicky feeling. I hope we can find out what our problems are.

     
    Old 07-09-2008, 12:47 PM   #12
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    Re: I need help

    I feel the same and I also wheeze sometimes. Tried the breathing treatments, you name it and all I got was shaky.

     
    Old 07-09-2008, 03:29 PM   #13
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    Re: I need help

    Do you have any stomach issues? I have horrible upper abdominal bloating, but not sure if it's connected to all this, or just a separate issue. It is almost as bad as the standing up issue. How long will it take for you to find out what these results are gonna be?

     
    Old 07-10-2008, 06:43 AM   #14
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    Re: I need help

    I am used to having no fat on my stomach, but since starting hydrocortisone, my stomach is not so small anymore. Some days it is bigger than normal, and some days I have diarrhea, constipation, or it is normal.

    Today, I turn in my urine sample. I guess it will take about a week to get the results back. Monday, my husband set up a test in which they give me some kind of radioactive chemical that should cause the adenoma to "glow" when they look for it, if it is actually there.

     
    Old 07-10-2008, 07:19 AM   #15
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    Re: I need help

    I hope your test shows something. The most I've had done is a CT with contrast. Are you talking about a MIBG(?) test, specifically to light up a pheo? You lucky dog! I hope it works to show exactly what you are dealing with. I know it's like always--you hope they don't find anything, but at the same time, you want to find out something so you know what you're dealing with! Please keep me posted on your progress and findings.

     
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