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  • cortisol levels < 1! Dx'd /w Isolated Pituitary ACTH deficiency

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    Old 09-21-2010, 12:41 PM   #1
    acthell's Avatar
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    cortisol levels < 1! Dx'd /w Isolated Pituitary ACTH deficiency

    I have been diagnosed with an Isolated Pituitary ACTH deficiency/failure.

    I guess I just want to know if anyone else has ever had this. All of my internet research turns up very little other than it is exceedingly rare.

    I am really struggling to come to terms with my illness. My most recent cortisol level was yesterday and it was .2! This is an almost impreceptible level for the lab machines to even pick up! Good grief.

    Endocrinologist has me taking Prednisone 5mg in am, 1 mg at noon and 1 mg at night... I am still not feeling well...but the doc wanted to keep me at the lowest dose possible due to the incredible weight gain I have experienced...almost 40 pounds in less than 4 months. I think I am going to have to up on the dosage as I just really don't feel well at all.

    I am also hypothyroid, have celiac disease and degenerative disc disease (for which I have undergone two major back surgeries in the last year for).

    Has anyone out there ever had any experience with Isolated pituitary ACTH dificiency/failure?


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    Old 10-03-2010, 09:36 AM   #2
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    Re: cortisol levels < 1! Dx'd /w Isolated Pituitary ACTH deficiency

    My endo thought I had it, but the test results didn't prove his theory. As I understand it, the posterior pituitary gland can stop making hormone while the anterior works just fine.

    Try Medline for research. You have to register to get the articles, but it's free.

    Old 11-30-2010, 11:33 AM   #3
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    Re: cortisol levels < 1! Dx'd /w Isolated Pituitary ACTH deficiency

    You may want to do a search on secondary adrenal insufficiency and also Addison's Disease.


    Old 02-08-2011, 07:08 AM   #4
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    Re: cortisol levels < 1! Dx'd /w Isolated Pituitary ACTH deficiency

    Yes, this sounds very familiar. My saga began in 1999 and gradually became worse. Doctors just wouldn't test for adrenal insufficiency for a long time. I also do not make ACTH or barely enough to tip the scale. My cortisol levels are also >1. I found that if I took ACTH injections every other day, i could get my ACTH levels up to almost normal and I tried for years to find a doctor willing to prescribe ACTH but doctors just don't want to do that, they say it is to much trouble to monitor patient and that prescribing cortef is easier. Yeah, right...exactly who is supposed to be receiving the benefit here? The cortef is problematic at best but for now I've got no other options. I do hope that you are finding better medical care than I have received. Hang in there. I hear you about the stuggle, some days it's all about the surviving.

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    acth, celiac disease, cortisol, prednisone, thyroid

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