How long?

[CanuckChick82]

I recently saw an endocrinologist because my family doctor suspects Addison's.  My bloodwork has repeatedly shown cortisol levels of <28nmol/L (ref range 138-660).  I was put on cortisone (up to 200mg/day) and this has not changed this reading.  I was told that there was no point in testing for Addison's as it takes being off ALL steroids for at least 6 months to get an accurate reading.  I am wondering if this is true and if not how long it would take to get an accurate test.  I have severe symptoms and multiple other health problems.  I would like to have the testing done, but I am not sure how to go about it.  Also, my ACTH was 2 (ref range 0-20, I think).  What should I be asking for to be done in regards to testing?  Thank you.  

[rumpled]

Your doc told you to go from 200mg to zero?  Um, that can be fatal... not only just "not nice" - you need to taper steroids to wake up the adrenals or you can have an adrenal crisis.

Being on too much steroid BTW, feels a lot like too little (I have lived both, since I used to have Cushing's and then had my adrenals out to cure it) so the symptoms overlap a lot - mostly the fatigue and all.

Why were you put on 200mgs? Like Ally said, were you treating something else?

[allmymarbles]

You say you have  been on steroids for years. Why? I know from personal experience that inhaled steroids and prednisone can cause adrenal fatigue, an adrenal insufficiency which is not Addison's. I presume other steroids have the same effect, but don't actually know. Again, why were you taking steroids. Do you have asthma?

[CanuckChick82]

Thanks for your reply.  I live in a rural area, so doctors are hard to come by.  I already travel over an hour to see this one every week.  And he is by far the best I have ever seen.
I have been on steroids for years in various amounts.  I had a bunch of hormone tests done when I was on a low dose of steroids and that is one of the things they found.  All the tests are done through the provincial lab, so there is no better way to get it done in the province.
At my endo appointment I was told to stop the steroids at once, so I had to go from 200mg to none overnight, which has not been very nice.  He said that it would take at least 6 months before they would be able to do the test and get an accurate result.  I am just wondering if that is correct because I really don't want to have to feel like this for much longer.

[rumpled]

I think you need to... find another doctor!

The half life of hydro-cortisone is around 6 hours... and besides, if he was so worried about it, why did he not run the stimulation test immediately, before he put you on the medications. You can go off the medication for a couple days and be ok, a week to be conservative.

And, a normal replacement dose is between 15-30mg, not 200mg - 200mg will give you Cushing's syndrome, and heck, if you cannot register cortisol on that dose, something is wrong with the testing... not the medications. ACTH is also a very iffy test - very fussy...

So, you sound like you need testing, but you need to find a competent doctor... It can be difficult - as you have found... I would also ask for renin and aldosterone and dhea sulfate - those are also adrenal hormones.