newly diagnosed with low cortisol

[Angels2002]

Hello,  I had 4 surgical procedures, cystocele, rectocele, bladder repair & hysterectomy 11/03/2008 and my labs came back in the hospital with a cortisol level of -1.  It was difficult to get my blood pressure up, keep my pain at bay and I now 3 months later I have a host of symptoms that I cannot control or explain.  I have since had 2 more cortisol labs and they both came back -1.  I have an appt. with  my PCP to discuss the results next week. From what I am reading on low cortisol.... this could be very serious.  Am I jumping the gun?  I really am feeling weaker by the day, losing hair, very dry eyes & thirsty, extreme fatigue, iritability, can't focus, neck & shoulder blade pain, etc.  My job in healthcare admin is very stressful and I feel I'm losing it.  Suggestions?  Many thanks!

[rumpled]

Aldosterone and renin control how you regulate salt and potassium - vital for living.

It is rather silly (and can be life threatening) that no one can treat you in all this time.

Can you get a referral, if you need it, or find a neuro-endocrinologist at a university? You need someone who has treated adrenals as they are a bit tricky. I used to have too much cortisol and then had my adrenals removed. Now I take replacements.

If you are craving salt, have it. It helps. Your heart is beating faster usually because your blood pressure is low and your body is trying to keep up with it. Salt will help lower the beats.I get a raised heart rate, especially if it is hot or I sweat. Stay hydrated too.

Did they do a renin or ACTH test? Were they in lavender tubed? Spun immediately after the draw? If not, then they are not accurate. Both of them degrade soon after the draw in room temperature. They need to be drawn, spun and frozen. Mine vary a lot depending of the tech. I am also tan and spotty from my high ACTH.

If you start to feel nausea, you may need critical care. Be sure to look up the symptoms of an adrenal crisis. If you get a fever, you can go downhill pretty fast.

[Angels2002]

Good Morning and thanks for the input.  Last night was an all time low for me.  I left work after 9 hours - no break and just fell into bed.  I could not eat, my neck and upper back, kidneys just ached too much.  The more stressful my day is, the worse my evening is re: not feeling well and being so weak.  So, I agree with you that I must start on some meds prior to see the Endo guy.   That is my project today to get this started if I have to get nasty to get it, so be it.  I'm also incredibley thirsty and have dry eyes for some reason?  I've never been this thirsty before.  I did have an ACTH and it came back within range so my PCP said this could not be Addisons.  I suppose I'll leave that diagnosis to the Endo doc when I see him.  Thanks much for the info on my tacky HR.  Today is a new day.......lets see how it goes :-)

[enzymelover]

  ACTH is a pituitary hormone, and results can vary on different days. You might have an adrenal lesion. Hopefully you will have an adrenal scan too?

[Angels2002]

I go tomorrow for a CT with contrast of my Ab, pelivs & adrenals.  Not sure what this all means or where it will end up, but I'll hang in there until we can find a name for this...BTW just rec'd my new set of labs I did a couple of days ago...this makes 5 labs in 3 months, 4 with very low Cortisol and elevated DHEA and Aldosteron on the low side...I'm shocked to see my Cortisol at 15!!  What can this mean?  Was the test done right, was it handeled properly or are the previous ones wrong...symtoms are the same?  Does anyone know if taking Zithromyicine (Z-pak) and Amoxicillian can effect cortisol levels?  I am currently in the middle of the Amox. and took the Z-pak prior for a bout of Strep Throat.  I had to go to a 2nd antibiotic since the Z-pak did not do the trick.  The time span is 2 weeks being on one right after the other.  I was not on an antibiotic with the previous labs.  

[rumpled]

What time was the cortisol taken? Cortisol normal varies a lot in the body. It rises and falls so time of testing is very important. Elevated DHEA is showing something is going on.
Is your weight changing - going up or down?
I have to tell you that I had an adrenal (abdominal) MRI - it was normal, CT, adrenals normal and the day before my surgery to remove my adrenals, the report said my adrenals were normal.
Then... my adrenal pathology showed they were 2x norrnal size and one was nodular.  The funny thing is that I had a CT a month after the surgery and that one came back... normal. So, there you go. BTW, this has happened to several of my buddies, not just me. And if you look around, you can see that imaging is not exactly er, definitive. The surgeon knew it but the inexperienced surgical resident was treating me like a second class imposter who was out to remove body parts and treated me like garbage until the big adrenals popped out. Then he was sweet. Huh.

I do know medications interfere but really - illness raises cortisol - your body needs it to heal so in a way it is good that your body is responding a bit to heal. It may be that. I have to stress dose (add steroids) if I get sick.

[Angels2002]

Hi,  just had my CT today.  I had my 1st cortisol taken 24 hours post surgery - in the hospital....very much on morphine.  they ran the test due to plumeting BP and they could not get it normal for those 24 hours...so they ran a cortisol and it came back at less than 1..then had another one done 1 month later in AM and again 2 weeks later with the supression med...still below 1.  Then ran the test again last week in AM and it came back at 15....needless to say, my PCP wants to run it again in the AM while I'm waiting to see the Endo doc.    Yes, my weight is changing.  Thankfully, I've lost 12 lbs.  Started at 152 and now 140...I'm 5'5" and 49 years of age and no real reason for wt loss...other than stress I suppose?  Maybe my low cortisol was just due to surgery?  I'm still unsure and still don't feel any better even if it is 15 now.  Sorry you had to go through that with your doc and eventual surgery...I know it can be very frustrating getting your voice heard by some professionals in healthcare and the squeaky wheel does usually get the grease!   Good luck to you.  Thanks for the comments :-)