Hi Lucy,
I just went & read your previous posts on the Yahoo Group & RTH.
I found your ACTH Stim results too.
forums.realthyroidhelp.com/viewtopic.php?f=12&t=6456&st=0&sk=t&sd=a&hilit=lucyWOW is all I can say!!!! Your Adrenals sure were happy with the ACTH injection. They sure went to town with Cortisol production. At least that showed your Adrenals were intact & healthy.No atrophy or anything likely with that reaction & results.
Pity your Pituitary wont co-operate with the ACTH stimulation but it could be worse.
Your results there & your other Labs leaves me in no doubt as to your DX. I agree completely with Chris there.
Unfortunate that you didnt have a ACTH Serum done with the ACTH Stim. Or even a Serum ACTH done on a different day before starting the steroids. I see also that it was your Endo that did the ACTH Stim. He/she obviously doesnt know enough or would have tested ACTH Serum on baseline draw.
Chris was so certain of your DX because of the extreme reaction to the Stim, your symptoms & history, plus the very low baseline Cortisol of 4.1 which was actually clinically deficient. You also had another blood Cortisol done a different day at 9am which was 6 the very bottom of the range. Because of all that he didnt need to see a ACTH Serum result. It would have been good to get it though to help convince people like your Endo.
Your Aldo, Renin, Sodium, Potassium results also matched with Secondary AI DX.
I never saw any results for Sex Hormones & Androgens (including LH & FSH) apart from a DHEA which was certainly far from optimal. Its possible to be Secondary for Sex Hormones too because of Hypopit you should test & find out for sure. Plus steroids do drop DHEA & Testosterone levels.
We also usually recommend getting GH, IGF-1 (plus IGFBP-3), GH, Prolactin done for Secondaries. Have you done these at all?
I saw you posted about B12 but what about other things like VitD, Ferritin, RBC Folate wre those tested & optimised?
You are on 6mg Medrol, 1 tab Florinef, Armour 4 1/2 grains, Sea Salt 1-2 teasp is that right? Are you doing good supps & minerals too. Your Potassium was very low likely you need RX Potassium to optimise there especially with Florinef. Have you retested since starting Florinef? How the BP now? No longer high BP? Rising on standing OK?
So I understand what your Endo is saying. I dont agree that you need a ACTH Serum & repeat ACTH Stim but I understand from an Endos narrow focus & point of view that Secondary AI has not been proven.
Endos dont usually use a ACTH Stim to DX Secondary AI its a test really to DX Addisons. They use other tests like Metaprone & ITT tests. Chris has some info on these tests here
www.geocities.com/chrisgj@sbcglobal.net/My_explanations_different_stimulation_tests.htmlThese tests are much more expensive, somewhat higher risk, usually done in Hospital setting & more difficult to get a Doc/Endo to do. These tests and others can help distinguish if actually Tertiary AI (Hypothalmus proplem) or Secondary AI (Pit problem). But it doesnt really matter which as the treatment is the same.
As to what you do now the choice is stay on the Meds etc you are or wean off & retest.
I dont really see the point in weaning even if its possible (it may not be) unless its to convince your current Docs that you do have these conditions?
Why not find a better Doc & give up on Endos? Your other Doc is he still pressuring you re the meds as well? Do you have someone still willing to RX for you?
Have you asked for a Doc recommendation on RTH? If you let them know where you live & how far you will travel you might get a name or two. Or you could PM Debsu if you dont want to give out details where you live on public forum.
I'm sorry the need for testing Serum ACTH was not emphasized more to you. But you know even if you did have it done almost all Endos & many Docs would still say that it doesnt prove Secondary AI. And they probably wouldnt agree to do the other stim tests that they prefer over ACTH Stim to prove Tertiary & Secondary AI either. You would still be at the same place you are now.
These conditions are just so underdiagnosed & unrecognised except for extreme presentations. There is little training/education provided at the med schools too even in the specialities.
Cut your losses find a Doc who understands & is experienced in these areas or at least one prepared to learn.