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Adrenal Insufficiency Testing?

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Just got call from doctor's nurse. So here are all the test results from past 2 weeks. Nurse said doctor will discuss with me at appmt next week. I expressed my concern both with these values and imminent risk to my job if dont have a diagnosis and plan for treatment. I appologized to the nurse but told I am desperate. She understood. Said there was a new Enod in town that maybe I could get in sooner, she acknowledged how hard it is to get into Endo in timely manner.

Code:
8/14/13
Renin Activity (Upright)  18.9  range 0.8-5.8
Aldosterone              10.5  range 4.5-35.4
Cortisol AM serum          2.1  range 6-23
ACTH                      7.0  range 9-52
Electrolites
Anion                    14.0  range 10-20
CO2                      28.0  range 21-32
Chloride                104    range 98-107
Sodium                  142    range 135-145
Potassium                4.0  range 3.4-5.1 
 
8/10/13
RT3                      11.2  range 9.0-27.0
DHEA                    114.2  range 8.0-391
Cortisol AM serum          3.7  range 6-23
TSH                      4.76  range 0.3-5.0
Lithium                  <0.2  range 0.6-1.2
FT4                        0.9  range 0.8-1.5
FT3                        2.9  range 2.2-4.0
Manganese                  0.7  range <1.2
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
What does your current doctor say about an AM cortisol of 2.1???

Have the nurse call the endo with an emergency referral if necessary. Her understanding is great but it is her action that you need.

Honestly, roxie60, you need to stop worrying about your job and start worrying about your life. I'm sorry if that sounds harsh.

Please call your doctor back and ask them to arrange a stim test for you.

Ema
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I get the urgency Ema, just dont know what to do. doctor is not in until tomorrow. I'm going to the doctors office this afternoon to drop off the AI dx chart in the article I posted just above . I will ask the nurse for an ACTH stim test again but that is the test over a week ago I asked for and they cold not find a code for.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Just called the nurse and left msg requesting ACTH stim test and expressing concern for my health.
Good for you! Just worry about getting the ACTH stim test done now. A CRH test is hardly ever done anymore.

An ACTH test needs to be done in a facility - it can't be done by your average LabCorp. I had mine done in a hospital.

I do think that mineralocorticoid deficiencies can precipitate adrenal crises often due to the salt loss and low blood pressure from missing aldosterone but I disagree with their statement that secondaries do not often have crises. There are still some out there that think that secondaries don't need Florinef at all which is why they are writing that. But that is patently untrue - some secondaries DO need Florinef.

Keep at it and you will get what you need! Good idea to go over there. So much easier to do things in person...

Ema
 

rlc

Senior Member
Messages
822
Hi Roxie, re

Just got call from doctor's nurse. So here are all the test results from past 2 weeks.

Cortisol AM serum 2.1 range 6-23

ACTH 7.0 range 9-52

Low ACTH and low Cortisol makes secondary or tertiary Adrenal Insufficiency very likely. Normal Aldosterone fits with Secondary AI. Keep pushing for Endo appointment and ACTH stim tests.

Is it possible for the nurse to contact the doctor and make them aware of the results, and the urgency of the situation so that they will see you earlier?

Make sure that those close to you know about these results and what they could mean, so they can get you to hospital quickly and tell hospital staff about the test results, in case your health worsens quickly, and keep a copy of these results with you if you go out.

Take care Roxie, hope you get to see endo soon, I know two people with AI, both suffered for a long time and nearly died before they got diagnosed, but they both have very good health now they have received the diagnosis and treatment.

All the best
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I hearing that most Endos are familiar with diabetes/metabolic and thyroid but not so familiar with adrenal, should I offend one right off the bat and ask if they have experience with successfully treating adrenal probs?
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Drs office was closed when I got there. So slipped paper with chart about AI under door. I could hear voices in the office talking. Then as leaving I pass my neuropsych Dr (dont have much confidenc in him) and stood for a bit trying to decide if worth giving him a copy, then decided I'm just trying to get any Dr at this point to listen and hear me and left a copy for him also eve tho not is specialty. Then rested in lobby before having to walk to my next apmt (counselor). While resting my doctors nurse walked by and saw me, she said hello I said I put copy of chart under door, she said she did not see it(someone else must have picked it up cause she would have to walk out the door I put it under), she then reminded me the office was closed today and I said yes I knew, I then said I believe this AI could be dangerous and I could see in her face she did not comprehend then said she had to run, the local covenient care needed her help. I thought to myself hope I dont see you there later.... as a critical patient. Then went to counselor and she decided to send an email to my doctor I did not ask her to do this but really just to weak to fight/argue.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
rlc for some reason I dont receive alerts when you post to this thread. I do appreciate your input and Ema's and others. This has been such a soul crushing experience trying to figure out what is wrong with oneself. It is so helpful to find suggestions here at PR and encouragement. Get more support here than from family and friends so much appreciated. IT has kept me from throwing in the towel.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Just reading about something called Hypothyroidism Type 2, anyone hear of this, is it legit dx? Trying to figure out the difference between Type 2 and regular Hypothyroid
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Just reading about something called Hypothyroidism Type 2, anyone hear of this, is it legit dx? Trying to figure out the difference between Type 2 and regular Hypothyroid
I think it is what most doctors would call subclinical hypothyroidism and no, it is not well accepted by most traditional doctors.

I certainly believe it exists though because the normal ranges are far too wide.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Still have not heard from my Dr. Is there anything I can take OTC to help myself until I get some action from the Drs?
Not really because what you desperately need is cortisol and that would interfere with your stim test (and it is prescription).

Remember the squeaky wheel gets the grease! Be polite of course but relentless in calling your doctor.

Ema
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I could not believe I found a lab range for Cortisol (I think it wsa Quest) that said 4-22 was normal range, a 4. Why are ranges considered normal when with such a large range common sense would seen to suggest that there is an optimal place with in that range and any value within the range but outside optimal could indicate a problem.

And yet so many Drs look at the results and if the lab doesnt flag them as outside range then they dont give it any additional thought. I am so frustrated with our medical paradigm, what a figgen joke.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
Yeah, just got off phone with Drs nurse. They have scheduled me with new Endo next Wed. Nurse said she agreed the test results indicated something going on but an area she is not familiar with...so I got a refferal .... progress. I just sent a note to my company letting them know a statsu letter with new test results would be coming from my doctor...hoping this will start the brakes being put on the lets fire her .... I'm grateful for all the support and suggestions here at PR, I know God is in control Im just weary of how long everything takes.
 

rlc

Senior Member
Messages
822
Hi Roxie, RE

Yeah, just got off phone with Drs nurse. They have scheduled me with new Endo next Wed. Nurse said she agreed the test results indicated something going on but an area she is not familiar with...so I got a refferal .... progress. I just sent a note to my company letting them know a statsu letter with new test results would be coming from my doctor...hoping this will start the brakes being put on the lets fire her .... I'm grateful for all the support and suggestions here at PR, I know God is in control Im just weary of how long everything takes.

Excellent news Roxie, take it easy till next wed and hopefully the endo will sort it all out for you quickly.

All the best
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I'm starting to wig out again, I have been disappointed by so many doctors for so long I just dont trust any of them and their typical lack of urgency. I'm going to be very angry if I go in and this doctor has not even looked at my test results. I just started progesterone three days ago so I hope I'm not heading into rage and anger like I did the last time we tired that. Anyway I have been invisioning a negative experience based on past experiences. I want to be optimistic but it is hard after trying to be optimistic for so many years and getting mostly disappointed with no real improvements. I have read the link below an specifically the How to diagnose AI and I got frustrated again because I thought the low AM cortisol and low ACTH (non-stim) were enough to be diagnosed with AI, no room for doubt. But I read this link and they dont mention Cortisol or stand alone ACTH. They say ACTH Stim is the official diagostic tool and then they can chose and low dose or high dose injection and depending on how advanced the AI one could come out looking normal again (if high dose used). I cant handle another meaningless test. I hope she choses the low dose. Can anyone who has AI tell me when you had the stim test did they inject the high dose or low dose. Thx

http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx#symptoms