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.