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Old 07-16-2008, 04:33 PM   #1
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not sure what is wrong with me

I have been to a lot of doctors who cannot figure out what is wrong with me for the last two years. My cardiologist has had me on several blood pressure meds that don't seem to work. I have worn heart monitor which shows sinus tachycardia. I had spine surgery and went into some kind of crisis where my heart rate would go way up just from trying to grab a cup of ice. My oxygen level was low. I couldn't breathe, had a horrible migraine, and was vomiting profusely. They gave me clonodine and steroids which eventually got me out of the crisis. When I got home they weaned me off of clonodine and things started to slowly get bad again. Some of the blood pressure meds made me feel worse instead of better. Right now I am on Bystolic, because it is the only one that helps my diastolic pressure.

I know that I produce no ATCH or cortisol which has my doctors thinking I have secondary adrenal insufficiency, but I get high blood pressure and a fast heart rate when I stand up. The longer I stand, the worse it gets. I cannot exercise, sleep, or stand for long. If I decide to go somewhere, I must rest all day or the day before in order to do it. Then, if I overdo it, I feel sick. My symptoms are just like the ones for a pheochromocytoma, but they are doing a MIGB and can't find it. I go tomorrow for an MRI. If it is not there, could I have hyperadrenergic POTS, since some of my labs show an elevation of plasma norepinephrine?

 
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Old 08-09-2008, 02:23 PM   #2
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Re: not sure what is wrong with me

What was the spine surgery for?
You have to have cortisol to live. I don't know how they could tell you that you are not producing either ACTH or cortisol.
What other meds are you on?
What other symptoms do you have?
Are you saying that your bp goes up when you stand up? Or it goes down?
Ever heard of Conn's syndrome? It's another name for hyperaldosteronism.
Have you seen a kidney doctor?
Some of what you mention sounds similar to Conn's---but I'm at a loss that the doctors are telling you that you have no cortisol or ACTH production.
Are you on supplemental steroids?
Have they ever told you that you have Addison's?

 
Old 08-09-2008, 05:26 PM   #3
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Re: not sure what is wrong with me

I had a fusion of the c6/c7 in my lower neck.
My cortisol test was 1.4 and my ACTH was less than 5.
I take Cymbalta, Nexium, hydrocortisone, Bystolic (beta blocker for high blood pressure), and alprazolam and a muscle relaxer to help me sleep at night.
The doctors have checked me for lots of things, for example, thyroids, kidney, pheo (tumor in the adrenal gland that produces adrenaline), pituitary, etc. I have a small tumor on my left adrenal gland, but they say they will only watch it and take it out if it grows. My blood pressure and heart rate rises when I stand. The doctors tell me I have secondary adrenal insufficiency, but they can't explain the fast heart rate, palpitations, and high blood pressure, which is uncommon with secondary adrenal insufficiency. They have ruled out cancer.
They, my doctor at M.D. Anderson, say I'm a complicated case, so they asked an ovarian doctor to check me out. She said I was fine. Now, I am waiting to hear from my doctor from MD Anderson to see where we go next. I'm so confused. These are my symptoms: high blood pressure, extreme fatigue, fast heart rate when standing, can't sleep after 2 am, diarrhea, constipation, dizziness, headaches, get very weak when I climb stairs or try to exercise, foggy head, etc.

 
Old 08-09-2008, 05:43 PM   #4
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Re: not sure what is wrong with me

MD Anderson is a good place---I've known several people who've been treated there.
It sounds like you have a very, very, very complicated case! I think you get the
"stump the experts" award.
I'm dealing with Hashi's, hypopituitary (growth hormone deficeincy and secondary hypothyroidism) and am currently testing for cyclical Cushings. I also wonder if the CT scans of my adrenals told showed the real picture---I have had a "dull ache" on my right side for quite awhile---but the scan showed that things were ok.
I've heard of others whose adrenals appeared fine---but when they got in the body---things were totally messed up.
I'm sorry you are going through so much. I hope you get answers as to what is going on---or not going on. Have they done any hormone stim tests on you?
It stinks to have weird stuff going on.
So much of what you mention are things that I'm trying to figure out:
high bp at times
diarrhea or constipation
muscle weakness
dizziness---this is something new for me---others I know have claimed they have this due to low cortisol (those who've been dx'd with Cushings and have since had surgery---either pit. or BLA---or both) so now I'm trying to track my symptoms.
difficulty sleeping---I have woken up at 3:30 am 99% of the time for the last 22 years.
In the past I experienced exercise intolerance---then it got better---but it's getting worse again.
There are a couple of things that seem to help---higher doses of thyroid (sometimes) and Provigil (most of the time).
Have they ever considered a thyroixine secreting pituitary tumor?
I know pit. tumors are notoriously hard to see---they tend to be "gooey"---not hard or encapsulated---but Dr. Ian McCutcheon at MDA has graciously read imaging of people who were told that the MRI didn't show any tumor. He's good at spotting things---some of the folks found out that they did have a tumor----and have had him do the pituitary surgery for them.
Probably trying to share too much info---but, let me know what you find out.
There is a gal in Ohio who has every indication of Cushings---and has been dx'd by more than one doctor as having it---but other doctors (and due to the circumstances she finds herself in---she has to deal with them) have told her that she has hypertension due to hyperaldosteronism---even though her levels are "normal".
OK...enough rambling here...
Good luck---and keep me posted. I'm very interested in learning what you find out.

 
Old 08-09-2008, 07:08 PM   #5
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Re: not sure what is wrong with me

Wow, thank you for that response. You gave me a lot to think about. I am not sure what they tested me for at MD Anderson. All I know is that they took lots of blood. I know they are still waiting for a growth hormone test that has to do with the pituitary gland. They are supposed to send the results of the test to my husband, so maybe then, I'll know more. They didn't do an MRI on my pituitary, they just looked at the report that we gave them from doctors down here in Louisiana. He said I was a walking pharmacy and that I will be sick for a while while they wake up my pituitary to release ATCH to my adrenal glands (hydrocortisone) and get me off of all my meds., especially Cymbalta.

 
Old 08-09-2008, 07:39 PM   #6
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Re: not sure what is wrong with me

Hmmmm...
Sounds like you're on the right track.
Have you been exposed to lots of steroids for pain or something?
Chronic pain or disease?
I was constantly being told that I was depressed---yeah, I am depressed 'cause I feel and look horrible!!!
Finally, someone would figure out one little piece of the puzzle, then I'd have to go back to the 'puter and do more research.
Actually, I got a big clue as to what was wrong with me when I watched a show on tv about medical mysteries and how patients finally figured out the proper dx.
I know a lot of people think I'm a nut---but you know what---unless you've been so sick for so long---and you do everything they tell you to do---and nothing improves---then they don't know what we've been through.
In addition to figuring out what have been my medical problems---I was lucky enough to find out that my husband and kids all have mild symptoms of Aspergers.
No wonder 25 + years of marriage counseling didn't do any good!!! Hubby and I processed "our realities" in a totally different way!!!
Now that we know---we've grown to understand each other better---and to get along better---and to understand what causes the anxiety---much better. Knowing that little bit of information has changed our whole family's outlook. Thank goodness!!!
I'm kind of tired of doing all this detective work---I'm ready to do something else for a change---like enjoy life for a change.
I did the Gh/Arginine stim test about 18 months ago---and have been on gh for just over a year now. It's helped---but hormones are always doing stuff---so it's important to tests regularly.
I always like it when they take lots of blood---to me it means that they are looking at a lot of things. I hope they are looking at the right things for you---and you get your answers asap!
I am a member of another board---and there are a couple of folks from Louisiana---who've gone to MDA. In addition to folks who've gone there for their pit. surgeries. I also know some folks who went there with a sister/sis-in-law, who was terminally ill with cancer. They were super impressed---and although the sister/in-law passed away recently---they were thankful for the great treatment she received there---it helped her gain about 18 more months of good life. It was super special for her to have that additional time---she had two teenaged daughters---and the 18 extra months meant a great deal to the daughters.
Gosh, I'm rambling...
Hey, I hope you get some answers soon---and the doctors are able to figure out some good things for you---so you can get back on the road to good health.
Keep me posted!!!

 
Old 08-09-2008, 08:23 PM   #7
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Re: not sure what is wrong with me

They think my secondary adrenal insufficiency was caused from Flonase and Advair and from 2 steroid injections before my back surgery. After surgery, I had an adrenal crisis, which no one knew I was having at the time. My oxygen saturation level was 50 on oxygen. I was tachycardia, vomiting profusely, extreme headache and body aches.

I went on cymbalta for depression last summer because I was in pain and couldn't do all the things I was used to doing. Extreme fatigue. I would see my doctor and cry, so he gave me cymbalta which helped.

I agree with what you say. Doctors know how to cure cases that are textbook cases, but when a case doesn't follow the text, they guess.

Oh, I feel lucky in comparison to all of your problems. Keep me informed how things are going for you. Do you work? I can't. I was so active and now I do hardly anything.

I'll let you know what the docs say. bye

 
Old 08-09-2008, 08:25 PM   #8
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Re: not sure what is wrong with me

Have you been tested for vitamin deficiencies? Magnesium, B12, D and others? Also, Lyme disease presents in many ways. You should talk to some patients on the lyme boards to see what they think ...it is a very hard disease to diagnose becaue blood testing is not diagnostic.

 
Old 08-09-2008, 08:32 PM   #9
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nopearce HB User
Re: not sure what is wrong with me

They have tested me for lyme last year with a blood test and said I was fine. Vitamins are fine. DHEA was very low.

If blood tests don't confirm it, then why didn't they do more? This is too confusing.

 
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