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EXTREME ACTH LEVELS
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EXTREME ACTH LEVELS

I have an continously increasing levels of ACTH from 400 in 2006 to now 1250 in 2008.  I am a primary Addisonian for 25 years.  I have had severe anxiety, fatigue, muscle pain, and depression for more than 3 years. I went to the doctors to begin with because of the above symptoms.The gave me and an MRI  to look for a Pituitary Tumor, they say it is negative.   My doctors don't know what to do.  I have no life.  I can barley get out of bed.

Can you please help?
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393685_tn?1325870933
You were confirmed as having Addision's right?

What treatment have you been given?

Also was there any other homones tests done?
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657231_tn?1390151580
Mine have risen to 2330 so I can understand. I do have the pituitary tumor however. But it cannot be seen.

Do you ever do UFCs - urinary free cortisol tests on medicine? Serum cortisol tests off medicine in the morning (before you take your morning meds) to see where your levels are?

Do you take HC or another steroid?

Now, what I find in you that I find in me is that I also have the extreme fatigue, muscle pain and now weakness. I had my adrenal glands removed so I cannot have Cushing's anymore and so far my testing just shows are really high ACTH (that the docs refuse to say is Nelson's) and high renin with other random weirdness like I cannot get my vitamin D up.

I used acupuncture to get out of bed. It was impossible for me for quite a while as well and that was when my ACTH was lower.
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Yes, I am a primary Addisonian since I was 13.  I am 40 now.  I have been on 25 -40 mg of Cotef.  They recently changed me to prednesone.  Nothing changed.  They put me into cushings to try to bring down my ACTH.  That didn't work.  

I have very low Vitamin D as well.  All my other tests are in the normal range.  I am miserbale.  
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How do you no you have the Pit tumor if it can not be seen?  Are you a primary Addisonian?  If so are you Cortisol levels normal?

What are your doctor's doing about your high levels?  Are they attributing them to your feeling poorly?  
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657231_tn?1390151580
I know it is there as I had an IPSS - inferior petrosal sinus sampling test and it confirmed it was back. I had Cushing's and had already had a pituitary surgery. I had my adrenals removed.

I had some docs give me a bit higher doses to try to keep the ACTH down - but nothing higher than 25mg - er, you do NOT want to have Cushing's! There was a reason I had my adrenals removed. It wrecks the body.

Pred is long acting. Most of my friends that are on it... do badly. More damage. More side effects.

On meds, my cortisol levels are normal. Myself and my tumor twin seem to have a weird neuro-muscular issue. My doctors are not really doing anything about my high levels which is a bit frustrating (the tan is okay - the spots are not so great). They do not attribute it to my feeling poorly but er, hello?

I take a lot of D3 to help.
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