At my endo consultation today, I asked a question that had been bugging me.
We all know that natural cortisol production is suppressed while we are taking prednisolone. But what do cortisol tests show when we are taking steroids? Is it the total levels of all steroids in our blood, including the artificial ones? Or is it so specific to naturally produced cortisol, we could still use those tests to find out whether our adrenals are still producing some cortisol, albeit at a low level?
My endo's answer was the latter. i.e. that the numbers given by my home saliva cortisol test show that even though I am taking 8mg methyl pred daily, and have adrenal insufficiency, my adrenals are still producing cortisol. If this is true, isn't that a very useful thing to know? It would certainly reassure me that they haven't completely conked out.
I'd be grateful if anyone could confirm this claim, which I remain sceptical about....x
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whisperit
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No, he didn't. We had other stuff to talk about, and I didn't ask for more details but it does seem a bit fishy to me. I may ask the company who did my saliva tests for their view x
It is said there is no point doing a synacthen test to see if your adrenals respond to stimulus before you are down to at least 5mg and preferably well below. Just measuring cortisol alone isn't very informative at any dose and just because your adrenals are producing some cortisol doesn't mean they can produce enough in a stress situation.
Oh, I know that PMRpro. I've been diagnosed with the synacthen test and all, but one thing I have been wondering about is whether - for example - my natural cortisol secretion is still following the normal circadian cycle, whether I am getting atypical peaks or slumps and so on. It's actually quite helpful eg in thinking about why I get certain symptoms that clinicians have been unable to explain but unwilling to investigate further. x
yes, that's right. You can get a series of six tests in a day with some of these home kits though, so there's that. And it does seem that once a SST has been done, many endos simply refuse to test further and just give generic advice like taking hydrocortisone on waking but without info on what the natural production is doing then or later in the day. "Trial and error" dosing is all very well, but having that extra bit of info has got to be better.
They are sending me to endo next week for "unexplained sxs" and chronic flares any time I try to decrease my pred dose. So I appreciate this conversation.
I've never heard that. But my endo just gave me a synacthen test and I'm on 7mg daily. He says it will be imprecise, and may not be enough for a formal diagnosis, but they might be able to see whether my adrenals are responsive at all (and if they are, it'll be safe to wean off the pred further). I just had to not take pred for 24 hours.
I had this done yesterday - exhausting but I did notice myself getting a bit of a buzz from the synacthen, which seems hopeful. While a year ago they definitely weren't working, I've found the weaning I've done so far has been much easier this time around. Fingers crossed.
yes, that must be right. the short synacthen test is just a single test at one particular time of day, with an unnatural stimulus. Good to hear you hae been finding things easier with the current taper. I'm on 7 now too - twinsies! x
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