Thursday, December 29, 2011

For Brittany

Brittany left a comment and my answers are below. I'm pretty sick so I think my response reflects a distinct lack of higher brain function, apologies in advance.

"Hi, I posted here before, and you were great with your responses. I finally tapered off steroids after tapering for 4 years. I had my first normal low dose ACTH test (morning cortisol of 10, 15 at 30 min, 18 at 60 min)- just met the labs criteria of normal.

So, I'm not supposed to take hydrocortisone again, even when sick. And, I'm not supposed to use the injection if injured. But, I think my cortisol function probably fluctuates. But, the endo thinks I am fine and congratulated me on my normal adrenal function.

I woke up sick in the night the other night and passed out. I ended up taking a small dose of the hydrocortisone I still have and was able to go back to bed. I never vomited or really got sick - just felt extremely nauseated and then just lousy for several days.

This kind of thing happened prior to going on HC, but hadn't happened in several years.

Is there any test that would show inconsistent cortisol function?"

Hi Brittany! Congrats on getting off steroids, however now you are in the Medical Mojave with me. A place where you still need medical care, but there's none to be found. We're all just one co-pay away from anti-depressants and a psych diagnosis. Yipee!

Your ACTH challenge was normal per most medical textbooks. These textbooks use a lot of column inches to explain the test and then throw in just one sentence that says something like 'but don't forget to pay attention to the patient's symptoms.' There is not a doctor on this earth that remembers that one-off sentence.

A minority of studies/textbooks would suggest you need to reach 20 or 21 before you can be declared cured. Those references are mostly found in the UK, so no one in the US pays any attention to them.

From real life experience, I would say that your ACTH challenge was just barely normal. Normal is nowhere near the same as optimal. If your endo kept track of you, they would see that your am cortisol would continue to rise with further recovery meaning, by logical extension, that your ACTH challenge would increase as well, meaning the test you just had? Is not normal for you. A smart person would be able to see that normal is a clinical definition that has little bearing on reality.

What's important is YOUR normal, not the textbook normal. A good endo would listen to you since the consequences of no steroids are things like hospitalization, death, loss of job etc... A good endo should never hesitate to equip patients for stress dosing. How doctors deny steroids and get any sleep at night, I have no idea.

You are still recovering and, as you suspect, probably need to stress dose. So refill whatever refills you have left on the steroids and start reading up on stress dosing. It's going to be up to you to figure out how to dose--even a great endo could only give you guidelines, you have to determine what your body needs yourself.

I would also strongly suggest trying another endo. I somehow was fortunate enough to find someone who agrees to let me stress dose. Lightning can strike twice, right?

As for passing out and small doses of HC... by the time you are passing out, I would expect small doses to be insufficient. Maybe it was an orthostatic hypotension thing--do you check your BP at home? I don't know. Just keep an eye on it as it may not be strictly adrenal.

An ITT or OMT might be of use to show HPA axis function or lack thereof, but the ITT is a bit dangerous so doctors don't like to use it and the OMT requires certain lab capabilities that are hard to find (from what I've read). Don't count on testing for help. The testing they have is either insensitive, too risky or technically difficult.

You and I are probably in the same boat: Our systems are compromised and we can see it, but medicine is blind.

The real failure is that medicine has no capability to catch HPA axis problems early, they can only test it when it's already gone. So patients suffer until their bodies can pass the tests.

1 comment:

  1. Thanks - I really appreciate your response and advice. I am trying to find a doctor, currently. I don't think the fainting is orthostatic hypotension...not that I've tested when passing out. I did have a tilt table test in high school when I was passing out more frequently. It may just be a vaso-vagel response, but something causes extreme nausea that leads to it. I'm nauseated on a regular basis, but the nausea that leads to passing out is on a different level where I don't feel in control of myself at all.

    I started on steroids when a doctor diagnosed with with adrenal insufficiency - but, apparently I didn't have it at the time, but then the long-term steriod use led to it. I don't tolerate steriods well at all - the side effects were awful - at least at the higher doses. So, I wanted to get off, but now this is a scary place to be in, where the doctor thinks I'm fixed and I don't feel okay. The endo thinks it took four years to get off because I'm really sensitive to steriods. I agree that I'm sensitive to them, but there has to be another reason why it would take so long to get off.

    I hope you start feeling better soon. Thanks again.


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