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Adrenal Insufficiency Testing?

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Ema, just read your point about the doubling issue. So if I understand no matter what the baseline value it should double if nothing is wrong. I need to re-read your comment

So lets say my Cortisol is 10 (at 1215PM) and then doubles to 20 at 120PM, would this be a pass or fail? I requested they mail me a copy of all labs taken. That is why I wanted to write here what happened so I can have a record to refer back to if I have to.

Also company made it clear to me yesterday afternoon that if they did not agree with my Dr's request for a 3-6 month extension (she thinks I need another year) I will be fired as of next Wed Sept 3rd. 20 yr career in the tank. I have actualy been considering how I can possibly go back with accomidations but I dont know what those would be, have a bed next to my desk so when I become overwhemingly fatigued I can lay down (the nurses station is quite a walk from my desk). I want to have a chance to be successful but without sustained energy I dont see how I can do it. Going to rest tonight then ask a few more questions tomorrow. I have two days to figure out what to do. I cant believe I am considering letting my career and retirement go but I dont see how I can manage. I just want to know what is broken, fix it if it can be fixed and get my life back.

Could not read this Endo but not sure if she believed me but she could not deny the Cortisol tests from the past two weeks.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I was told minimum two days and maybe longer because she is testing for prolactin (not sure why, I'm in menopause).

I was told in 2007 I had apnea when put thru a sleep test. I am suspect because I believe my sleep was disturbed because Cymbalta was poisoning me. I had so many serious symps at that time, bad sleep was just one. After 3 months off Cymbalta my sleep improved, it took a year for my memory to get better. So 2008 was a decent year if I recall. Ive had a couple decent years, I think 2011 was th best then I started gong down hill again I have not recovered.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Each blood draw was a new stick (three times in left arm). I asked why they dont just leave the attachment in my arm so they dont have to keep sticking me - no answer. Right arm was where the STIM was pushed. I was hoping I would feel more energy after the STIM but the Dr said that would not happen. It didn't.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I asked the nurse if this doctor understood, treated patients with AI and she said yes.
They always do. Their actions are vastly more important than their words.

The baseline counts and it needs to be 20 ideally and double to 40 at a minimum for a pass. So a 10 doubling to 20 would be a fail. Anything that starts much less than 20 and fails to double is a fail. So if you had an 18 baseline and then after an hour were at 45, I would probably consider that a pass (but obviously history and other things go into the diagnosis which is why we don't practice medicine on forums). If you had a baseline of 20 and only got to 30 after an hour, that would also be a fail because you met the first criteria (baseline around 20) but failed to meet the second criteria of doubling. Does that help?

It's interesting to me that you didn't feel anything after the ACTH. Many people with secondary do feel better because their adrenals respond to the proper ACTH signal for the first time in a while. That indicates to me that your adrenals perhaps didn't respond to the ACTH at all. Hopefully the results will come quickly!

Testing for prolactin is probably to rule out a prolactinoma which is a benign tumor of the pituitary gland.

Ema
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I have exhausted FMLA, I am on unpaid leave. I would have to return to work to be considered for FMLA again but then I lose the LTD claim I am waiting on a decision. I am basically between a rock and a hard place. I am going to call tomorrow and get a couple more questions answered.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
They always do. Their actions are vastly more important than their words.

The baseline counts and it needs to be 20 ideally and double to 40 at a minimum for a pass. So a 10 doubling to 20 would be a fail. Anything that starts much less than 20 and fails to double is a fail. So if you had an 18 baseline and then after an hour were at 45, I would probably consider that a pass (but obviously history and other things go into the diagnosis which is why we don't practice medicine on forums). If you had a baseline of 20 and only got to 30 after an hour, that would also be a fail because you met the first criteria (baseline around 20) but failed to meet the second criteria of doubling. Does that help?

It's interesting to me that you didn't feel anything after the ACTH. Many people with secondary do feel better because their adrenals respond to the proper ACTH signal for the first time in a while. That indicates to me that your adrenals perhaps didn't respond to the ACTH at all. Hopefully the results will come quickly!

Testing for prolactin is probably to rule out a prolactinoma which is a benign tumor of the pituitary gland.

Ema
yes on cking for tumore, I forgot she mentioned that until you mentioned.

It is now 4.5 hrs after the stim test, I am tired but maybe not as fatigued. I really dont know how to describe it anymore, I just dont feel like I can clean my house or all the tasks I'm way behind on. I did not feel energy increase. Kinda like people reporting after getting B12 they always feel better, brainb clearer, I never felt/feel anything.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I have exhausted FMLA, I am on unpaid leave. I would have to return to work to be considered for FMLA again but then I lose the LTD claim I am waiting on a decision. I am basically between a rock and a hard place. I am going to call tomorrow and get a couple more questions answered.
I know I am repeating myself but PLEASE call another lawyer. Something is not right here. You should not be able to be fired between FMLA and LTD.

Have you tried Allsup? I'm not sure if they do ERISA or just SSDI. I think it's worth a call.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
The benefits states I can have up to nine months unpaid leave before termination. It is separate from LTD, the LTD claim is still in process and unrelated from my employment status (I verified) , it seems silly but that is what it is. I think it is bacuase they are having trouble deciding on my LTD case and it is taking longer than time I had for leave. I told my lawyer that I risk being fired prior to the LTD decision, he made it clear that he would only get involved if company denied my LTD claim. He did not seem to care whether I got fired which is distressing. My SSDI will only deal with SSDI. I dont know what to do or believe. I'm feeling pressure to go back even though I know I am impaired. I just so tired of the games. Sadly I wil not get rsults back from this stim test before technically fired unless my GP's letter this week convinces them they should grace me with an extension. I am so deconditioned it will be hard going back.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Allsup?? Is that a lawyer?

I'm not entirely sure! I just know I've heard it mentioned on disability forums from time to time as a resource.

I would call. Just because one lawyer said that doesn't mean another one will. It sounds like you need someone with knowledge looking out for your interests.

Ema
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I not sure if its wishful thinking or just the sometimes 'normal' better energy at night but I feel better, I'm almost afraid to say it after feeling like crap for so long. I guess I should say I feel better cause I'm still tired but for so long it has felt like my cells were dying, tonight I dont feel the overwhelming fatigue. The tiredness might just be out of condition for being fatigued so long. I know one evening is not a trend. I also do not entirely understand this STIMulant that was used but my understanding it was a 'high' dose so I wonder why (if it is related) I would feel a little better so much later so that is why I am not entirely sure so I will see how I feel tomorrow and how I sleep. I am a slow metabolizer genetically on some things, I dont know how this STIMulant would fit the genetic factor if at all. I am desparate to feel better more than a couple of hours.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
For the results later

Baseline taken about 11:45 (there was no fasting cause I did not know we would be doing this at my first visit)
First Cortisol taken at 12:15P
Second Cortisol and other tests taken about 1:20P
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi roxie, sorry to hear about how your work situation is going.

Im glad to hear you are getting to sort out your cortisol issues, Ive had out of range cortisol test results and it appears mine doesnt raise to pain or stress but due to the low abnormal results was told I had "adrenal dysfunction" but no doctor would give me those other tests to find out how bad exactly my cortisol issue is. A bad dream last night left me feeling sick from what I believe is my low cortisol (Ive also had abnormally low sodium come up on one test). I do take Florinef now with lots of salt.

I'd like to say something about your lithium result
Lithium <0.2 range 0.6-1.2
.........

I had a hair test done which came out saying I was showing no lithium in my body at all so started taking lithium orotate supplements. I recently read on this forum that in studies its been shown that the prescription kind of lithium raises white blood cells (neuropils? I think it was) which was very interesting to me as Ive been almost out of range with my blood test counts of those (low). Since thou Ive been taking the lithium supplement over a year (not the kind in that study), my almost abnormal blood count there (low for at least 7 years of this illness) has doubled so Im no longer borderline. You may want to consider doing the same esp if your white blood cells are in the lower normal range.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Im sorry Tia you are not able to get doctor care you deserve. Interesting about lithium. I only found info on it this past week. I was interested in it because we have treated me for two years now on B12 and the numbers are higher but dont 'feel' th improvement expected. I was wondering if the B12 transporter lithium might have a role
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
http://www.stopthethyroidmadness.com/hypopituitary-faq/

14) My doctor says my cortisol doubled during the ACTH stimulation test, so I am ok-is he right? Most people with pituitary caused adrenal insufficiency, aka secondary adrenal insufficiency, do double on that test, but from a low base cortisol value. If your STIM started below mid 20′s for women and below upper 20s for men, but doubled or more, then that suggests possible secondary adrenal insufficiency. A serum ACTH must be tested just before the STIM is started. From what I’ve seen, serum ACTH can be as high as lower 40′s for secondary AI, but most are below 30. Keep in mind the ranges today are even more flawed than they were 2+ years ago when 99% of labs used a range of 10-60. In my opinion a good range for ACTH would be 40-55. See here for a greatly detailed explanation of how to interpret your ACTH STIM test.