Can't get out of this rut.. Please Help!!

[IvoryMoon]

Hi,

I have been unofficially diagnosed by an allergist with adrenal insufficiency due to failing the acth stim test almost two weeks ago.  I have been dealing with this disease for ten years but finally got the right help.  Now I am waiting for my endo appointment that is 10 days from now.  This appointment cannot come soon enough.  My allergist gave me enough prednisone to last a few days but told me he wanted me clear of steroids so I can be ready for any testing from the endo.  My body cannot take it anymore so I am using an old script of prednisone until I get to the endo appointment.  But I am having trouble regulating this and the doctors don't know what to do with me.  

So if someone could please compare symptoms so I know what is causing what.  

Without prednisone I crash.  It feels like my body is shutting down.  I cannot move because it takes too much effort to do so.  If i fall asleep when I wake up my heart is pounding in my chest and I feel horrible, lethargic, and weak.

Right now, with the prednisone I feel constantly nauseous most of the time and like I have a constant hangover and fatigued.  Why am I still feeling sick with a steroid?

I am taking 5 mg in the morning 6-8 am and then 2.5 from 3-5 pm

I have never had a problem with loosing salt.  And its weird because I have had low potassium at times.  I just don't know how to make it from her until the 3rd.  I think if I know what hormone is causing what then maybe I can get myself back to feeling better.   I know I get some good days that I feel positively fantastic, like I was normal; but they are slim.   Is this what the rest of my life is going to be like with this disease?

[rumpled]

So, if you failed the stim test, why did they not put you on replacements?

Do you feel better if you take more sodium - what are your sodium levels? I ask as general Na and K move in tandem - either opposites or together. What about florinef - fludrocortisone?

As for the hangover, I am very familiar. If I do to much - I call it play you pay - and I get very sick.

Have they tested any other pituitary hormones? When they do ACTH is it in a  chilled tube and spun immediately? It can be low just from lab handling. It it sits in a bin, it drops from sitting.

I have to travel to my docs too.

[IvoryMoon]

Thank ypu for your reply.  This is the second time I had a acth stim test.  Once 4 years ago at 9 am.  I barely passed it by .8 points.  Then I found out they were not suppose to let me walk around and talk to other people out in the waiting area.  Second one they started a little later at 9:30.  This one they gave me a room to quietly sit but I also my friend and I got to watch lets make a deal on tv.  Then came the blood draw problem.  They couldnt get my to come out the iv with the syringe.  They kept pulling and pulling but nothing.  It was disgusting.  So i ended up with two more needle pricks on the other are for the 30 min and 60 min draws.  But with all of that I still failed it.  Morning draw was 3.4 it went up to 9 and then 17.  Acth was 13 on the very low end of normal.    I am wondering if I am hypopituitary or a combination of the two.  May sound odd but anything is possible.  The highest I have ever seen my cortisol is a 13 in the past 5 years on an 8 am draw.  An endo once told me they like to see it above 9 at that time.  Is that true?  I have not had the rest tested.  I know my blood pressure always runs low and drops randomly.  Then I will also get so fatigued that moving is too much effort I must lay there and let it pass.  on top of that I get a hangover that last from a day to 3 days.  I will feel extremely nauseous, dehydrated, fatigued, and confused.  Does this sound familiar?  When I end up in the er they will give me fluids but they only see my potasium levels drop.  I am afraid that I will not get treatment because this does not seem like a classic textbook case or am I wrong.  The more info I get the quicker I can get to the right diagnosis.  I live in a rural area where I have to drive 3 hours to get to a big city.  I hate to say it the dr here and the endos on my side dont really know anything about it. This one I will be seeing does not know too much either but at least he is open minded and willing to investigate and refer.  Thank you any help is appreciated.

[rumpled]

AI is a salt wasting disease. In most, sodium drops and potassium spikes. I buck the trend in that my potassium drops too when my sodium drops.

I know a couple of my Cushing's (elevated cortisol) buddies who drop potassium like crazy. They both were cyclical Cushing's type, so cortisol would go up and drop, so tests could show high, low or normal.

Have you had your renin and aldosterone tested? Have you had an ACTH stim test? How much testing have you had - and was it done at the right time of day?