My ME, Part IV - Visit to Mayo Continued

I knew I was kind of phasing out there, towards the end, guys! I left out something pretty important in my last post, and that was the reaction of my endocrinologist to the ITT test results and the ensuing autonomic tests.

Thinking about illness differently:

One of the frame-shifts I learned at my alternative medicine school was about the wisdom of the body - that symptoms are there as messengers, and you the practitioner have to listen to them. My sciencey self rolled her eyes at this flowery nonsense at the time, but like a lot of things, time showed me the error in my thinking.

When the body is in a state of illness, I think we tend to want to fix it, like a mechanic at a workbench. I've tried to 'fix' my serotonin mechanistically, and my body punishes me immediately.

My serotonin is low because raising it raises cortisol, and I have very bad reactions to increased cortisol. My body is compensating for the larger problem, and I tried to thwart those efforts by acting before thinking.

This is NOT to say that we need to accept our illness and resign ourselves to our fate. Rather, we have to consider WHY something is out of balance rather than simply attempting to patch a bandage over what may be a far broader problem.

So, the results of the ITT test were:

For those of you who haven't done research on this (could that be ANY of us? Everyone here is so awesomely research-y and knowledgeable):

CRH (corticotropin-releasing hormone) in hypothalamus --> ACTH in pituitary --> cortisol in adrenal glands

But somehow, my cortisol is perfectly normal - not too high, not too low, at a happy, middling place - and I have low, sometimes undetectable levels of ACTH. Let me reiterate that, since ACTH leads to cortisol production, this should not be possible.

Somehow, my body is producing cortisol independent of ACTH. I found this article that discusses how that might be possible in hypoxic situations. But more on that later - this post really isn't for research. It's for how my endo responded to this paradoxical data, which was with confusion.

She gave me cortisol to try, despite the fact that my cortisol is - let's all say it together - normal. It's my cortisol response to stress that doesn't exist - that is, I don't make more cortisol as part of a stress response.

I took the cortisol the next morning and wowww holy crap was that awful. As previously described, I have what might be an actual allergic reaction to cortisol in some way. I've had it twice before when I was injected with ACTH, but I thought maybe it was the ACTH I had a reaction to. Nope: it's the cortisol itself, even (apparently) the cortisol I make myself.

When I returned the next day, assuming the endo would provide me with some other hormone replacement - growth hormone, maybe? Mine is also quite low, and my GH stress response is quite low - she said,

"Cortisol is the only FDA-approved treatment for any kind of adrenal dysfunction. It's the only thing I can give you that your insurance would pay for. If this doesn't help you, then there's nothing we can do."

She then evinced disbelief I'd had the allergic reaction, although I later found evidence of cortisol allergy responses in a number of articles. When I showed her the raised bumps on my arms, she said it had been too long since I'd taken the medication, which implied they were in response to something else (it had been 48 hours - again, that kind of delayed response is in the literature). She asked if I'd be willing to take it again, in front of her, so she could monitor the effects, but by then I'd pretty much had it. I'd taken the pill first thing Saturday morning with breakfast, and spent all of Saturday and Sunday recovering. I saw the endo first thing Monday. It felt like a PEM crash, and I wasn't eager to start it all over again. I was very disappointed, because so far this doc had been supportive and kind to me, and she was the first person to uncover concrete proof that there was something very 'off' endocrinologically.

And the tilt table test results:

Directly after that, I went for the autonomic panel at Mayo. They sent little electrical impulses down my leg (showing I had some compromised nerve function), did a Valsalva thingie (failed that too!), and, of course, the tilt table.

Ah, the tilt table. My old nemesis.

Now, they'd had me lying flat while they did all of the other tests, so that there would be a strong impact when they tilted me up. I was strapped in, but that doesn't take away the fear of passing out, which is very primal. I immediately started doing lamaze-style breathing to try and avoid passing out. I was trying to focus on the light switch across the room, but the assistant kept standing in front of it. I heard my endo's voice from earlier in the day, saying that there was nothing that could be done for me. I thought, this is the way it's going to be, forever.

And I started to cry.

For those of you who have been through something similar, I'm sure you know that I immediately tried to stop. There is nothing that medical professionals find less impressive than someone panicking over the symptoms of their illness, or reacting emotionally to illness in any way; and your likelihood of being handed a Prozac and sent packing increases exponentially for every moment you can't keep it together. Even though later on I would know that no one else gets to decide what the 'proper' reaction is to being told you have a lifelong, unchangeable illness with untenable symptoms, at the time I felt foolish and awful.

Obviously I had a positive TTT - I could barely stay conscious. But the results were - again! - weird. They found no drop in BP or HR before the archetypal rise. The autonomic panel who looked at the data first seemed to attribute this to my panic. The neuro I saw at Mayo was one of the good ones. He pointed out that there had been a similar rise in heart rate when I went from sitting to standing in his office, and unless I found that action distressing, the other guy was wrong. He then wrote up a ridiculously long and detailed series of observations that suggested I had POTS and mailed them to me, but the autonomic specialists were more cautious about fingering POTS as the culprit, and he included their notes too.

At first, I was so irritated at the autonomic panel's initial reports that I paid more attention to their lovingly detailed description of my upset than their conclusions. But when the skilled neuro re-wrote the reports to include more details, I began to see it from their point of view. Sure, I had just been given terrible news, but why pick then to show that upset? Why not when I was with the endo, when she gave me that awful news?

Maybe it had just sunk in; maybe it was a culmination of all the crap I'd been through the past week and a half. Maybe it was that being strapped in place while barely being able to think and stay conscious while doctors/nurses/techs seemed to be actively preventing me from doing what I needed to do was a little too symbolic for my frazzled brain to handle. Or maybe the autonomic specialist was focused on my upset because to him, it indicated something pathological and particular.

There is a type of orthostasis that occurs without a preceding drop in blood pressure or heart rate, and it's caused by a norepinepherine processing disorder. In looking over the autonomic panel's notes, they suggested the TTT be repeated, measuring norepi and dihydrophenylglycol, which would test for the condition in question. Unfortunately, I'd left Mayo by then... Luckily you can test for this genetically as well, and it's one of the better-understood disorders. When my SNPs come back from 23andme, I hope it's included.

<--------First in the series


You might find this information re nitric oxide cycle useful. Martin Pall calls this the Tenth Paradigm of illness, which includes ME and heart disease. And his vid:

Also, relation of mast cells to ME; mast cells include allergic responses.

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