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Old 12-24-2012, 10:55 PM   #1
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New, Need Guidance - Low ACTH

uHi...I really need some help. I've not been myself for a long time. In 2009 I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). It explained 95% of my symptoms. They put me on 2mg of florinef. I haven't been the same since. Got really sick with infections for a couple of months. My mother had to help me work (I have a route that I drive). Then I started have changes in menstrual cycle. Really bad memory issues. Almost lost my job because of that. I couldn't remember my neighbor of 7 years name. Embarring. Depression that came out of nowhere. I was actually really happy in life especially given that I had finally figurred what was causing my symptoms. (Felt weak.).

Now four years later I can barely think I used to be able to write, like articles and whatnot. What takes a normal (healthy) person a couples of hours, takes me 2 weeks. Ugh! I can't get anything accomplished. My cycles has gone from heavy and regular to non-existant. My skin breaks out. My nail break for no reason, below the quick. Ouch! Weird rashes. Dry throat. Itchy scalp. I've lost a quarter to a third of my hair. And gained wait especially in my mid section, for no apparent reason. No dietary changes.

I couldn't get doctors to run anything but the standard CBC, CMP. So I finally got fed up and decided to take the bull by the horns and pay out of pocket to have the tests run myself.

I started with the B12 & Folate vitamins. B12 is low and I've started w/shots, but it's not doing a lot, and I'm gettign worse. Next I had B7 run. Turns out that the lab ran the wrong test. Instead of B7 they ran ACTH. It came back low. Around 1. I can't remember exactly and I don't have the labs infromt of me. I just now it was several points low.

I know the ACTH was taken at 2pm after fasting, and was put on ice. So the test should be accurate.

I don't know what to do now. I went to an Endo a few months back. He wouldn't even run tests. Since my ACTH was low I really think there is an issue.

I've been trying to read up on what it means, but am getting totally overwhelmed, and confused.

I'm not sure if low ACTH is enough to get me into a doc that's listed this networks list of doctors or not.

Is low ACTH something a doctor would take seriously and treat based on that alone? Should I mention to my pcp first and get her to run additional tests? And what tests should she run?

And what does low ACTH really mean. What I've read says is can be a tumor and cause low or high cortisol. But I'm not even sure that I'm understanding that correctly. Then I've read that you can have low ACTH by itself. Is that right?

Any help or guidance you could offer based on your experience would be greatly appreciated.

I'm in Dallas, btw.

Thank you.

 
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Old 01-05-2013, 02:14 PM   #2
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Re: New, Need Guidance - Low ACTH

Hi as far as the ACTH goes I'm goin thru the same problem along with many others that these drs can't figure out.i have gained 100pds in one yr and no one has answers for me.anyway my ACTH is so low it doesn't even come up in bloodwork.i dont want to scare u but pls have it taken care of by an endocrinologist because it is a serious issue.u may have to b puton hydrocortisone like I am to replace the hormone ur not making.then u may not feel so tired.first thing drs do is request an MRI to make sure tree is no pituitary adenoma which is a benign tumor.usually that's the reason for this.if not they run furthrt testing.i don't have a tumor but I have been a gunny pig for these drs cuz I was told my case is very rare.i hope I answered as much as I knew and hope I was helpful.good luck ...

 
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Old 01-05-2013, 06:42 PM   #3
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Re: New, Need Guidance - Low ACTH

You definitely need to see a good endocrinologist. A low ACTH can occur for 2 reasons: a problem in the pituitary gland in the brain or an overactive adrenal gland (Cushing's) causing the ACTH to be suppressed. So one very important test is a serum cortisol level, to see if it is high or low. Your PCP could order that, as well as a pituitary panel to check the rest of your pituitary hormones, as more than one abnormal is common. An MRI could be ordered by your PCP too while you are waiting to see the endo. Maybe your PCP could refer you to your University clinic, where unusual problems are investigated, and not just dismissed. You do need to pursue this as you may have adrenal insufficiency from the ACTH being so low.

 
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