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testing cortisol while on HC different docs interpretaions

Before i saw my last doctor, my blood serum cortisol levels were coming back high, but a 25 hour urine test came back a little low.  when he physically esamined me, he took my blood pressure sitting and then standing--and it dropped quite a bit.  Orthostatic hypotension is a symptom of low cortisol.  He also did some ankle relex--wish I could remember what it was called--and it was a slowed reaction.  He felt that my physical symnptoms, when he actually saw me and examined me, pointed to low cortisol.  He put me on 20 mgs of cortef--he preferred to start people on it in case they had any problems with fillers in HC.

Because cortef was so much more expensive to me, I called him after a few months and told him I had taken HC for a couple of years with no problem--so he let me switch.

He slowly raised my NP Thyroid, and told me to watch for symptoms of low cortisol as we were raising the thyroid.  I found that I would get very agitated and ittitable in the early afternoons---right about the time my kids were coming home.  So he raised me to 30 mgs--and I have stayed with that.

My first endocrinologist had put me on 30 mgs right from the start.

After 3 months, my doc did blood tests again.  He felt my FT3 was a little high, so he had me drop my meds a little.  He told me that my ACTH was a little low, but in the normal range, and he told me that my cortisol levels were very low, which he said was more consistent with his clinical findings when he examined me.

Wouldn't my cortisol be low with a blood test just because I am taking HC?  What about the ACTH levels, how would they be affected by taking HC?

I have gone from very low ACTH and cortisol levels, which prompted my endo to do a stim test, which I failed.  My second endo completely ignored the stim test because i had been given a cortisol in each heel 19 ndays before the stim test--but AFTER my cortisol and ACTH levels had already come back very low.

I have had several doctors, tell me that the shots would not have shut my adrenals down completely.  The second endo pulled me off everything--and did very little testing--my DHEA almost bottomed out, my testosterone dropped, he only did a blood serum cortisol, and did not tell me to not take my HC--it was only 2.5, though.  My level came back 16 and they said it was fine---two days later, without me fasting, and around 11:30, they did their version of a stim test---they used the non-fasting 16 from 2 days before as their baseline, gave me a stim injection, and drew my blood in 30 minutes and sent me on my way.---I have no idea how that test came out.

I talked to an online endocrinologist who told me that my first endocrinologist was right and that I needed to be treated.

I know I have felt so lousy for so long, and I know i can't maintain certain hormone levels without supplementing them---I just don't know what to make of the various testing I have done that has come up with so many different things---i also don't know how many of the people that tested me tested me right.

What do you make of it all?
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Avatar universal
the first time my doc tested my cortisol he tested the cortisol binding globulin and it was in the normal range.

That was when the blood cortisol was coming back high and before he had put me on HC.

He did not test the cortisol binding globulin the last time he did blood work, just total cortisol and free cortisol---and they were both pretty low.
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Avatar universal
Is your cortisol binding globulin ever tested? That may be the key. I know my one doc used that in conjunction with my other tests to see my *real* cortisol levels.

I always thought it effected the free test, but I remembered wrong - it impacts how the serum test turns out. I still find it confusing though. Today is rainy and I cannot work it out... :(
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