Wednesday, December 29, 2010

Lacking Clarity

Okay, my brain is working at the moment. Although we are not going to dwell on how long it took me to remember what month it was just a few minutes ago. Yikes. Old age and steroids are not a good combination.

I was able to verify the test results with the endo today.

Baseline Cortisol: 13

30 Min Cortisol: Drawn too late to matter so it's not relevant.

60 Min Cortisol: 20.6

Now, there are about a million ways to interpret these results.

The endo I am seeing is being very conservative, almost rigidly so with this idea that I'm fine.

Some medical literature, well respected and well researched literature, would classify me as borderline and recommend further testing.

Other medical literature says I failed the test and need more testing to determine if I'm primary or secondary.

And even other medical literature would ask why the hell we are testing anything since the test results are invalid so long as I'm on any amount of steroid.

Adrenal Insufficiency (AI) patients (the real experts!) fall into three camps: I flat out failed the test OR the test is null because the timing was off and the test was so stressful OR it was not relevant unless I used another steroid for a few weeks before the test, one that doesn't affect the test like Hydrocortisone or Prednisone.

Endo #2, by the way, felt testing was pointless while on steroids.

Endo #3 feels that anything with a final value over 18 or 20 is fine, even though it was supposed to double to 26 and did not. The baseline of 13 is either low per medical literature or suspect, it is not actually as good as I had initially thought.

So pick your perspective. There's a study/data to support nothing being wrong, a borderline case of adrenal insufficiency (AI) or full blown AI.

What do I think?

Well, I am pleasantly surprised by the 13 baseline. Remember, I've had baselines of 1.9 and 5 so this is not without hope for me. So even though 13 is not great by medical standards, I'm actually pleased. Like I said in the previous post, I am hoping hoping hoping that I'm coming back from the abyss.

The thing is I don't know anything for sure and it is awfully hard to suffer through this muscle pain and not know if it's doing me any good.

Ergo, I would like another Cosyntropin Challenge when I get to a sub-physiologic steroid dose just to be sure. Because we really haven't established if adrenal function is recoverable or not and the fact that I had weaned and then couldn't live without steroids all of a sudden is kind of disturbing.

Although apparently I am the only one who is disturbed.

Endo #3 flatly refused to order another challenge test today. Instead what is happening is all my symptoms are being farmed out to other specialties as if nothing is related or derivative. As if my body is spontaneously having disparate unrelated problems.

I'm now scheduled for a tilt table test because that is apparently the key to understanding my bizarro blood pressure. Only I don't expect much because my blood pressure isn't wonky on a consistent basis, not enough so to perform properly for a medical test. I fully anticipate that test to show nothing.

Also the test appears to be used with fibromyalgia and chronic fatigue patients; throwaway diagnoses that garner even less respect and care than adrenal issues. NOT the direction I want to go! I am not running for the worst diagnosis to get medical care for prize.

As for the rheumatologist (sp?), I am holding off on that as I think the muscle pain will fade soon. It was triggered by the challenge test and I exacerbated it by splitting the steroid dose and also decreasing it by 5mg. Why I wondered why I hurt so bad, I don't understand. You would think I've never done this before.

I mean I knew it was steroid induced but it didn't occur to me until just now to wait it out and just reiterate with the endo that it's from the steroids. If it goes away, it's not a problem, right?

My hope is by the time I get down to 20mg of Hydrocortisone (which is sub-physiologic) that I can call the endo and basically throw myself at their feet and beg like a puppy for another challenge test. Given that the science is so wishy-washy on my results, it seems only logical to gather more data to see if a definitive conclusion can be reached.

I have been told not to stress dose. That if I have low bp, bilateral back pain, nausea etc... that it's not adrenal (that is kind of a dangerous statement, but ooooookay). That I am on enough steroids that I can't have a crisis (that is patently not true).

So as professional as endo 3 has been, I really haven't achieved much. I continue to feel like I'm the only one who ever has a clue and wonder why it is that patients are the only ones who seem to ever read the medical literature.

7 comments:

  1. Interesting.

    We were told that 15mg of hydrocortisone was the physiologic dose.

    My husband had a baseline (a.m.) cortisol of 8 when they began the steroid taper. The endo considered that number to indicate some recovery, and ok to start tapering. It did seem to work in his case. I think it's expected to feel not so good during a taper. It took my husband quite a while to feel ok.

    Was your 13 before you'd taken any hydrocortisone during the day? If so, I can see why he think it's ok. As for the response being not completely normal, I'd think that would be expected while on steroids, that the adrenal response would be a bit suppressed. I don't think you can interpret the test results vs. someone who isn't on steroids.

    Tilt test - we've been there, done that too. They use it for all sorts of things, I wouldn't worry about the diagnosis.

    You could check yourself for postural hypotension. Basically, take your blood pressure sitting. Leave the cuff on your arm, deflated and ready. Stand up and place your arm on someone's shoulder to keep it level (or something that height so you're not holding the arm up, but resting it). Wait 60 seconds, take your blood pressure again. See if it drops.

    I'd go see the rheumatologist - they often are the mystery solvers. Our rheum is perhaps the best doc we have. Every one I've met has been extremely nice too.

    Tracy2

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  2. "As if my body is spontaneously having disparate unrelated problems." I just posted about my own sense of this on my blog. It's so frustrating that no one seems capable of or even interested in looking at the body and its workings as a system instead of as a collection of isolated bits. :(

    When I had my tilt table test this past summer, I asked a lot of questions. One was why it was any different from just doing postural blood pressure. The response I got was that it had to do with passive standing. If you use your own muscles to gain an upright posture, you've given your blood a boost in the process. The passive raising of your body to the upright posture apparently gets around that confound. It puts the burden of regulating your blood pressure on your cardiovascular system without any help from the muscle contractions that would otherwise get you standing.

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  3. Tracy: Everything I've read and what the docs all say is that 5mg prednisone (20mg Hydrocortisone equivalent) is physiologic and less than 5 is sub-physiologic. So yeah, I probably need to be less than 20mg. Why the endo thinks 20 is sub-p I don't know. I've given up on trying to understand these people.

    13 was before steroids, so like I said, kind of hopeful! But because it's all so borderline, I really just want one more challenge to be sure.

    Keep in mind the endo does not subscribe to the idea that the steroids skew the test at all. My test is normal in their world view. It's not suppressed at all. I disagree and am not the only one who would take issue with it.

    That's a good point on the rheum. We'll see.

    Badturns: Thanks for the info. I will try to do the BP thing at home just to see. But really I only have ever tanked in conjunction with adrenal stuff.

    M

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  4. Huh, I think you're right - the physiologic dose is 20mg. The guy that told us 15 was obviously wrong (wasn't the Mayo guy). Sigh, sometimes I hate doctors.

    While not perfect, still, that's a reasonable cortisol level and response. I'd think one would expect a little suppression, after being on steroids for a while.

    Since the adrenals response (fairly) normally to ACTH, then could the problem be the pituitary? Is it putting out sufficient ACTH, especially under stress?

    Also, I wonder if any of this could have to do with blood sugar, instead of just adrenals.

    My husband just had an odd 6 hour glucose tolerance test - interestingly, the rheum was the one interested enough to run it. Now, the doctors are all looking at each other, trying to figure out how to interpret it. Sigh.

    Tracy2

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  5. Tracy: I do think now that 20mg of HC is sub-physiologic as it works out to 4mg of prednisone which is sub-phys. So maybe my math was off.

    Although I have heard two different equivalencies on HC to predinsone now from the doc, so who knows?

    I think you and your hubby should start a blog! I bet your story is very interesting.

    Yeah, there is no data on if I'm putting out enough ACTH. That's why some of the medical literature recommends further testing to find out. The challenge I had really only rules out primary adrenal insufficiency, from what I understand, it doesn't really show much for secondary.

    If I can get one more challenge it will give me a data point to compare things to and I'll have an idea of what is really happening and what my next step will be.

    M

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  6. By the way the endo pusing 15mg?

    Wasn't from H0p K!ns??? (If you can read past my attempt to hide the name from google.)

    I have heard terrible, awful things about the endos there in relation to adrenal stuff. The stuff of nightmares.

    M

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  7. Nope, it wasn't them. It was, however, the head of endocrinology at a major medical center. The same one who misdiagnosed a pheo. We are no longer friends, and he probably has a blond voodoo doll (that's me). That's ok, I was right and he got to look like an idiot to Mayo (who told him so), so I am content. To arrogent doctors - if you're going to be arrogent, you'd better be right. He wasn't. Oh yes, we have stories.

    Actually, the calculater I found for steroid equivalency made 5mg pred = 20mg hydrocortisone. Either it varies by person, or everyone has their separate opinion I guess.

    In any case, I think physiologic only counts if you aren't under stress. If you're - oh for example sick - your body should be making extra. Guess we'll see.

    I hope you feel better, and no big asthma troubles (read your more recent post).

    Tracy2

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Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/