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    Old 02-22-2007, 11:42 PM   #1
    bigcaat
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    I don't understand.

    My world has been turned upside down. I was dx'd with adrenal insufficiency in July. Today I went for a second opinion to an endo who thinks I might not have had it at all.

    His reasoning was that my post ACTH stim test was 39.6. Baseline was 19.5. When I was dx'd, my doc subtracted the 19.5 from the 39.6 to arrive at a number of 10.1.

    Based on this I have been on low-dose replacement steroids for 8 months. Now, I don't know what to think. This new endo says that a lot of people will feel better on steroids, but it doesn't necessarily mean that's what I have. Maybe my symptoms are from something else and the steroids are just masking them making it harder to find the truth.

    Tomorrow, I will take my morning dose of steroids, then not take any for the rest of the day, and then go for bloodwork Saturday morning to get an ACTH -- (he didn't mention the shot, he just said the minute my blood is drawn take my meds -- can you have an ACTH without having the stim test?) -- a serum cortisol and a serum free cortisol. He also ordered a pituitary MRI.

    I just don't understand and I'm really upset. I feel like I'm living in the Twilight Zone. I don't understand all of these numbers, I don't understand why she subtracted the morning cortisol level, and I don't know what to think or who to trust.

    I'm really depressed.
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    Old 02-22-2007, 11:48 PM   #2
    bigcaat
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    Re: I don't understand.

    Oh, yeah. ATCH, plasma on that first test, in July, was 9. I don't know what that means, but maybe that's what he's looking for instead of the cortisol level after the stim test.

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    Old 02-23-2007, 09:59 AM   #3
    Hormoneman
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    Re: I don't understand.

    You can't take steroids for as long as you have, stop cold turkey and the next day and get an acth test that would represent what it was before you were on steroids. Your doc is silly for wanting to do that and should know it will take weeks or months of slowly weaning you down before any tests can be done. This is why it's important to get all testing done first so you don't have to do that. If I had to not take my steroid for 24 hours I bet I couldn't get out of bed much less drive myself to the doc.

    Your stim and very low acth in my opinion show you are secondary AI. Doubling on the stim is what secondaries do if their cortisol production hasn't atrophied which can happen after a time of low acth.

    If you are a woman, 25 would be a good healthy cortisol value. Men should start at upper 20's at least.

    That is great that you had the plasma acth to back up your stim.

    If your doc is an endo, he likely will say you are fine because all he is looking at is you doubled.

    See this thread I posted a few days ago.
    [url]http://www.healthboards.com/boards/showthread.php?t=472296[/url]

    I recommend you find an osteopath if you aren't satisfied with your doc.

     
    Old 02-23-2007, 11:47 AM   #4
    bigcaat
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    Re: I don't understand.

    Quote:
    Originally Posted by Hormoneman View Post
    If your doc is an endo, he likely will say you are fine because all he is looking at is you doubled.
    Both docs are endos. The one who diagnosed me, not board certified, but has a special interest in Addison's. I still don't understand why she would have subtracted the baseline from the post cortisol level, and why it would be a bad thing, having read your other post, if the doc looked at the 19.5, doubled to 39.6.

    If it doubled, is that not an indication that maybe I don't have AI? Why would she do that subtraction?

    Also, I don't think he's trying to see what my levels would be pre-steroids altogether, but I think he wants to see a level without the steroids to see if my adrenals are working at all, or something. I don't know. I'm suppose to get the bloodwork done tomorrow and he's suppose to call soon to tell me if I should not be taking my estrogen. I'm really nervous about being off my meds for that long. My husband will take me to the doc, and I can take my meds the minute I get my blood drawn, but still....

    I don't think he's as wholistically minded as my other endo, but he is of the mind, "if you don't need to be on something, you shouldn't be on it." That part is not a bad thing, but I just want to know what's going on. And if I *don't* have AI, what the heck could possibly be making me feel like such crap all the time? I just want answers and I want to be able to trust those answers.

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    Old 02-25-2007, 10:47 AM   #5
    Hormoneman
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    Re: I don't understand.

    I recommend you go back to my other post and read and study it carefully. I've had people tell me they read it several times before they really understood everything I said, though I tried to write it in simple terms.

    Primaries don't double, secondaries usually double (if cortisol production hasn't atrophied). You started low in my opinion (at least 25 is what I look for if healthy) and doubled which shows your adrenals can work if they were getting enough of the ACTH signal. I like to see serum acth in the 40's at least. By the way, I edited my other post to explain that the stim examples I gave are extremes, most secondaries start at least 10.

    If you take away steroids cold turkey (no tapering) and test the next day, your cortisol value should show very low. I'd expect it to be under 3.

    A patient with low acth as the cause of their AI, the steroid therapy, suppresses the ACTH just like it does with primaries, but when steroid therapy is tapered, the secondaries ACTH likely won't come up to where it was before steroid, if it comes up at all. In other words, steroid therapy in secondaries it usually isn't possible to wean off the steroids after being on them for a period of time.

    I've seen many secondaries, including me, who started as low as you did and doubled with a very low acth. When those secondaries are put on steroid therapy, they feel much better. Remember that the labs get their ranges from the sick people who take the test. Labs don't go out and test thousands of healthy people to see what healthy cortisol (or any other hormone) levels are.

    Endos go strictly by ranges. They look for Addison's or healthy. They don't recognize an in between and they are very terrible at spotting secondaries. Because of all that, I don't recommend endos unless you have an adrenal or pituitary tumor. Osteopaths know the ranges are flawed, they look at symptoms along with tests which endos tend to ignore symptoms.

    I agree with your endo you should be on it if you don't need it. Virtually all endos are going to say you don't need steroid because you doubled. They don't care if you started at 5 and doubled to 10 as long as you doubled that is all they care about.

    An osteopath is likely your best chance of having success. Probably 1 in 3 osteopaths are good with AI, so try another DO if the first one doesn't work out.

    Last edited by Hormoneman; 02-25-2007 at 11:38 AM.

     
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