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  • Went to MD Anderson and I'm still confused

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    Old 08-19-2008, 06:07 AM   #1
    nopearce
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    Went to MD Anderson and I'm still confused

    I spent two weeks at MD Anderson running all kinds of blood work. They even had me see an OBGYN, who said I was fine. They say I have an adrenal problem, but can't explain why I have high blood pressure. I have a small tumor in my left adrenal gland, but they say it is not producing epin. and norepin. which can cause this. They say I am a complicated case and to wait patiently while he thinks. I am on 20 mg of hydrocortisone a day and I still can't live a normal life. I am also on Bystolic for high blood pressure and Cymbalta for depression, but they don't want to get me off of this either. I am seeing three different endocrine doctors right now and none of them know exactly what is going on. My morning cortisol level was 1.4 and ACTH was less than 5. No DHEA, but everything else seems okay. I have had a brain scan, and that looked good. Does anyone have any ideas? I am starting to get depressed because I had high hopes about MD Anderson finding out exactly what is wrong, but now I am not so sure they will give me any new information.

     
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    Old 08-19-2008, 09:02 AM   #2
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    Re: Went to MD Anderson and I'm still confused

    People just simple do not follow the *box* in symptoms. For instance, when I had Cushing's, my BP never got high, it stayed low and so did my cholesterol which is strange as with high cortisol, it should raise. Now with no adrenals, it all stays low still. I never had glucose issues either (unless they stress dose me to smithereens).
    Have they tested all your other hormones comprehensively? I seem to have a bit of POTS where I cannot hold my BP up when I stand and my BP drops.
    Are you consuming enough salt? Did they test your aldosterone and renin, and at different times?
    What about Plasma Free Metanephrine?
    I hope they come up with something soon - it is no fun to be a medical mystery.

     
    Old 08-19-2008, 10:15 AM   #3
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    Re: Went to MD Anderson and I'm still confused

    I don't know exactly what they tested at MD Anderson, but they said my glucose, thyroids, and pituitary hormones were okay. My norepinephrine was elevated, but he said not enough for my tumor to be a Pheo. The rest of the plasma free metanephrine was okay. No one tested me for POTS, which I think I have when I walk around too much (which is not much). When I feel "adrenal", I can't stand up, sit up, or turn my head without getting dizzy, etc. One of my doctors told me not to consume extra salt because of the high blood pressure. "Did they test your aldosterone and renin, and at different times?" What did you mean by that? The doctors said I had secondary adrenal insufficiency because of steroids from nasal spray and asthma medicine, so the outer layer of my adrenal glands work. They said I will never be like I was before this happened, but I will get better.
    I agree it is no fun to be a medical mystery, but I thought the doctors at MD Anderson could easily answer all of my questions.

     
    Old 08-20-2008, 06:49 AM   #4
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    Re: Went to MD Anderson and I'm still confused

    I meant not just once, and maybe at different times of day for renin etc.

    They should not assume anything - I know lot of people who took steroids and developed Cushing's (with a tumor), not Addison's - it can go both ways.

    I hope when you get copies of your testing, you will see maybe something for your self. Have you been to a cardiologist?

     
    Old 08-20-2008, 09:02 AM   #5
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    Re: Went to MD Anderson and I'm still confused

    Rumpled, what does a renin test tell you? The doctors never tested me for anything at different times of the day. I know when I had the steroid injections, I got Cushing's. This is what made my doctors think I must have secondary adrenal insufficiency, so they gave me steroids, which caused me to gain 20 lbs. in about a month. Then, I went see an endo who told me I had secondary adrenal insufficiency and cushing's (from too much steroids). They have been lowering my steroids for the past year now, and I am gaining weight even though I eat less than I ever did in my whole life. I can't fast, because that will put me in a crisis.

    I have been to a cardiologist and my next appointment is next month to do an ultrasound of the heart. I started seeing him after my first crisis when I had a fusion of the C6-C7 in my neck. I was doing fine after the surgery, then while I was talking to my mother, I started feeling awful. My body hurt, I had the worst headache, severe projectile vomiting, and tachycardia. They were giving me 100% oxygen, and still I only had 50% oxygen in my arteries. I don't remember much. They ran scans of my heart, chest, and head, but found nothing. Hindsight, now the doctors all think it was an adrenal crisis which became better after giving me steroids for vomiting and to help me breathe. A few months later, I was put on blood pressure medicine. I wore a heart monitor which showed sinus tachycardia.

     
    Old 08-21-2008, 08:45 AM   #6
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    Re: Went to MD Anderson and I'm still confused

    Renin controls, with adolsterone, your blood pressure in the kidneys and help regulate the potassium and sodium.
    I get mine tested all the time with my normal testing rounds. I guess different times of day would not make a difference but at least doing it more than once would be good.
    I had cyclical Cushing's and several of my buddies did and some of them would go high and then go so low that they would go into crisis (which would bite as they would then need steroids!) so it was so hard to figure out what was wrong with them. Many of the docs do not understand or believe that any disease cycles to this extent but some of us lived it (and live it now).
    I have to do all the heart stuff now and my heart goes wild during a crisis. I pretty much live with tachycardia.
    Have you had scans of your adrenals and pituitary?

     
    Old 08-21-2008, 09:52 AM   #7
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    Re: Went to MD Anderson and I'm still confused

    My left adrenal gland has a 9 mm tumor in it, but it is not producing norepin and epin. My pituitary gland is fine.
    I guess what is so frustrating is I want someone to tell me what I have and how to fix it or I will have to live with certain symptoms for the rest of my life. I am tired of being complicated.

     
    Old 08-22-2008, 08:11 AM   #8
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    Re: Went to MD Anderson and I'm still confused

    Sad to say, my adrenal scans were normal and they were huge (at least 2x normal size and one was nodular) and my pituitary MRIs for 12 years missed a second pituitary tumor that for sure was there as it was the prolactinoma and I had been lactating first to get the first MRI. So imaging is not what I rely on even though the docs always think it is reliable, I tend to know it is not anymore.
    They even say my adrenals are normal now!
    Which is a roundabout way of saying that imaging may not be accurate as it has not been for me and many people I know. I would really try to get more labwork if you can and try to get to a doctor that would test you more. I agree, being a medical mystery is not fun.

     
    Old 08-22-2008, 05:34 PM   #9
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    Re: Went to MD Anderson and I'm still confused

    I just came back from one of my doctors in La. He said the dizziness caused by moving is not normal for secondary adrenal insufficiency. He had me do about 6 squats which made me very dizzy and weak, so he ordered a table tilt test.

     
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