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27 July 2012 @ 05:35 pm
cortisol resistance?  
It's a possibility anyway.  So the main mystery now is why, if my endogenous cortisol levels haven't really gone up, amd I doing better?  And why have I had low-cortisol effects on 40mg of exogenous cortisol, then later high-cortisol effects on 17.5mp of exogenous cortisol? 

Before I thought the question was, why am I not doing better than I am.  But if, as now seems very likely, my overall cortisol levels have just been dropping as I've tapered, why am I doing better than I was?

And there's the third mystery, which is that the tapering has had to go so slowly. 

elsmi sez: reading says: one problem when treating inflammatory diseases (so mostly rheumatoid arthritis I guess) is that when you give people steroids for long periods, their efficacy drops off and you have to keep increasing the dose.

so it is well established that the body can have "resistance" to corticosteroids

So, if my body *did* develop corticosteroid resistance, and has been re-adjusting to lower cortisol levels as I taper, then the changes are mostly tissue-level not endocrine-system level so far.  So possibly these three mysteries are explained.  Not sure the mystery of "why did I show low-cortisol symptoms while on a high dose of fluticasone" is answered, but it seems less mysterious in this framework?

Not clear how this could have happened to me on not-that-high doses of corticosteroids, but I am certainly within dosage range of other people who have developed these problems on fluticasone.  (& apparently risk of adrenal crisis in fluticasone users, according to the 2000 data, is somewhere in the 1/12,000 to 1/15,000 range; not high, but high enough to measure. Likely the numbers are higher now, since fluticasone was still pretty new in 2000 so there was limited long-term data.  Anyway.  This isn't just me.  Which means it should be possible to find a doctor with a clue; and academic privilege def. comes into play with the researching here, as well as with communicating the problem to the doctors.  Which, well, I'll take what i can get right now.)

Unfortunately the doctor I saw last time is a registrar, and will have circulated elsewhere by the time I go back in, and I won't see him again.  Whee @ having to explain the whole damn problem every time I talk to another doctor, in limited-time appointments; it's been recommended that we get a private consultation just in order to a) get a doctor with more experience and b) have enough time to explain the whole mess to them.  And, presumably, c) be able to arrange followups with the same doctor maybe?  NHS is great and all but not exactly ideally set up for a complicated and rare problem to get shunted to the right doctor.  Meh.
(ETA: plan is not at all to LEAVE NHS; all else aside we can't afford to.  Plan is to get one or two private consultations & some tests privately, parallel to the NHS but much faster, because waiting another 3 months for anything is not so great & anyway we're not sure when we'll manage to get through to an actual consultant through NHS.)

Thanks much for positive & supportive comments to the last post.  It means a lot to me, I just, I'm tired.  And responding is hard.  And.  Sorry. *flails*
Going to be tapering again, and I'm actually coming up on getting to/below the physiologic dose now, so it might be extra specially exciting this time or next.
Current Mood: tiredtired
Stephanie Burgis: Gilmore hugstephanieburgis on July 27th, 2012 05:02 pm (UTC)
I'm so sorry you're going through this. :(

In terms of practicalities on the NHS stuff...honestly, I'm very hesitant to say anything, because I don't want to come off as pushy. So please feel free to stop reading this comment now - I won't be offended! But just because it took me a while to work out the NHS system when I first came over here, I will say that in every NHS surgery I've ever been with, in various parts of England and Wales, the patient is ALWAYS allowed to ask to see the same doctor every time. You probably won't be able to get an appointment the same day if you ask for a specific doctor, but you should get the appointment within a week unless they're just unbelievably popular. (By the time I got near the end of my CFS diagnosis saga, I knew exactly which doctor to ask for, and I asked for ONLY her, every time. And even now, with normal ailments, Patrick and I have a list of the doctors we like and respect and are willing to see - or for MrD to see - at our local surgery. We will ONLY make appointments with them, not with registrars and not with the other doctors at the surgery. That's never caused a problem so far, and it's saved us a lot of frustration.)

Also, although registrars are almost always awful in my experience, because they're rushed and don't care - the worst experience I ever had was once when I was trying to get my CFS diagnosed and I got stuck with a registrar who just decided I must be pregnant, problem solved, since I was, y'know, female (grrr) - any GOOD doctor shouldn't be making you feel rushed by appointment times if you have a serious issue, which you do. If you try the real doctors at the surgery, at least some of them, if not all of them, should be willing to listen for as long as it takes. And if what you need isn't covered by the skill base at your NHS surgery, they should be willing to refer you to a specialist on request, still for free and staying within the NHS.

However, none of this is meant to persuade you to stay on the NHS if that isn't what you want to do. You should do whatever feels right for you, because that WILL be best, whatever it is. I just wanted to pass on what I'd figured out from living here, because I remember how confused I felt by the system when I first moved to the UK, and how long it took me to work out some really key moves for operating within it.

Most importantly, just: *HUGS*.
shweta_narayanshweta_narayan on July 27th, 2012 05:11 pm (UTC)
<3 thankyou! Not pushy at all, and def. helpful

I'm not leaving the NHS. Plan is to get one, poss. two, private consultations, and maybe some tests that the NHS doctors aren't doing yet. And to try and get that information back into the NHS system. And *meanwhile* poke and try to be seen by an actual consultant rather than a registrar within NHS, so that I can at least try to see the same one twice.
(Family friends who are doctors and have been in NHS for decades are dubious about whether I can actually get to see the same doctor twice, anyway; but they may be underestimating spoonie persistence on these matters.)

But, yeah, I can't even theoretically see the same doctor twice if the doctor I see is a registrar, because they've gone and circulated elsewhere by the time I get to see them again. The one I saw was actually pretty good, and I was hoping to see him again; but I asked during phone consultation (in which he told me test results), and he said he wouldn't be there.

So right now, plan is to do a private consultation, and simultaneously stick to NHS-doctor's plan which is to taper and re-do the stim test in 8 weeks; and then to pester the hell out of them to let me see the consultant & not the registrar. So, basically, let the NHS wheels grind slowly & meanwhile try and get more data & questions answered much faster, privately.
Stephanie Burgis: Gilmore hugstephanieburgis on July 27th, 2012 05:35 pm (UTC)
Oh, that sounds like such a smart way to balance your different resources!

I think you're absolutely right about the value of spoonie persistence...and maybe even the value of having an outsider's attitude, too? There may have been times when secretaries at a doctor's surgery sounded startled or doubtful when I asked for a particular doctor, which may have signaled, looking back on it, that the more expected or polite thing may have brrn just to ask for an appointment without being fussy about who it was with...but since I wasn't raised British, I have an easier time persisting even when I'm faced with polite startlement from the person I'm talking to. (And that's part of why I'm the one, rather than Patrick, who handles all of our business that has to be done on the phone - being American actually gives a slight advantage there!)

And like I said, no one has EVER said no, even if they sounded surprised or doubtful about the request...so it can't actually be against the rules, even if it might not be traditional.

Good luck!!! *hugs*
Nathanielelsmi on July 27th, 2012 06:59 pm (UTC)
Yes, I have been practicing my polite-insistence-on-getting-what-we-want... I think the receptionist at the hospital metabolic lab recognizes my phone voice now...

For clarification: the talk of registrars and consultations here is all in the context of endocrine specialists. So far as I know there's no problem with seeing the same GP repeatedly. The problem is that now that things are mostly diagnosed and all it looks like... the underlying problem is does not quite fall into any of the categories described in the textbooks, so... it is tricky to find someone with the right combination of detailed specialist knowledge, willingness/ability to work things out from first principles, and actual clinical skills.
Stephanie Burgis: Nika hilltopstephanieburgis on July 27th, 2012 07:16 pm (UTC)
Oh, that is hard. Good luck with it!