Low Cortisol Levels but Normal ACTH Stimulation

[chrisym]

I recently went to a highly recommended Endocrinologist due to consistent low levels of cortisol.  I am a 42 year old female and have been fighting a supposed virus for the last 2 1/2 yrs (herpes zoster & possibly another but not clear cut diagnosis). The Endocrinologist tested my blood to find again the cortisol levels low and decided an ACTH Stimulation test was needed.  To my surprise, the nurse reported to me that the ACTH Stimulation Test was normal.  My question to the nurse to take back to the doctor then is why is my cortisol levels low?  If they were just a little low I wouldn't be concerned but I have had them below 1.0 more than once at 8am ( and that was with urine test too) and the test finding from Endo I don't have but was told I had a "little" but not sufficient level by far.  I have had trouble with fatigue that is almost causing me to be bedridden along with nausea and abdominal pain.  To doc's credit the nausea and stomach pain came on after our initial meeting and I didn't get to tell her but I have since told nurse to report it.  It is important to note that I had nausea, abdominal pain and low blood pressure for 9 months (lost 20 lbs that I didn't need to lose) but  this was just a about 6 months before cortisol was EVER checked.  I have also seen 2 GI docs who have run CT scans, ultrasounds, endoscopy, the works but find nothing.  This "appears" to be Adrenal Insufficiency to me.  Can someone give me some suggestions?  Thank you!

[rumpled]

24 hour urine tests are usually done to test for elevated cortisol. You have to get a copy of the lab to know the results.  

[Sunnysugar1999]

Can anyone explain the normal cortisol levels I had a 24 -Urine Cortisol run at Lar Corp and I have no idea not understand the terms they used?  I believe my Adrenals are very low.
Thanks
Sunny1999

[galliar]

Based on your initial ACTH level, it does appear somewhat low.  The first cortisol level is definately low.  The first rise tripled, and the 60min was still in the triple range.  I would say you definately need Cortisol because it looks like you have secondary adrenal insufficieny.  Your adrenals appear to respond, but the ACTH level isn't very high at all.  Like you, I orginally took adrenal support which was adrenal extract and it helped quite a bit.  But if you are short cortisone, there is nothing that helps except steroid replacement.

Watch for low blood sugars as the can set off an adrenal crisis also.

[jjohnson5409]

My cortisol levels were 6 in the morning and the ACTH was 10.  which is kinda low.  but still in the normal range.   (i hate ranges)  I had the stimulation test,

morning cortisol at 7am    6    after medication 30 minutes - 18  1hr- 20.    the doctor said that i responded ok to the test but I have read in several places if you start out w/.  a low cortisol and if it does n't go up by at least 20 points it is your adrenals.  

my endo said that if it was only 19 then he would of started me on medication.  He is crazy.  my GP doc said forget him and is sending me to a real endo guy.

my appointment is not until the end of the month but i can't wait to see what he will do.  I have been taking adrenal support from a natural food store and a thyroid helper and I do feel so much better.  Not a 100% but at least i can get up to go to work.   so good luck to you.  

[rumpled]

Salivary cortisol tests would be highest in the morning and lowest at night. Sadly. ACTH cannot yet be tested via saliva yet.
ACTH pulses all the time - there is no time range for it.
ACTH is very subject to lab error - most techs do not handle it well. I get 800 point drops in mine. You have to watch what they do and ask them to do it correctly 98% of the time. It should be in a chill EDTA tube, spun immediately after the draw, and frozen as soon as the centrifuge stops.

Even if you "passed" the stim test, you could later have problems. You could be borderline. Did you get a copy of the tests? Always get copies.

[ttmoni9]

How is ACTH tested? is it saliva test too?

I have read that ACTH will be at its highest level in the morning and lowest at night.

[chrisym]

Thank you for your response.  I will most definitely take your advice and move forward.  Before "firing" the present Endo, I will get the ACTH test results along with all lab results ordered.  With three test results indicating very low cortisol, my concern would be is if the pituitary gland is producing enough ACTH, however I have also read that the test interpreter can be the problem and also the lab that conducts the ACTH test can make errors most often.  So, as you said, I have to take on this bear and tackle it proactively.  Your recommendations on the readings and the other tests are what I needed to jump start where to go from here.  I know there is a problem, and believe this is what is keeping me from fighting the "virus" that has now been active in my peripheral nervous system for 3 years.  Unfortunately, I am now on disability for a year and I have had to do constant research as the doctors are not getting the job done.  If it wasn't for a blood test I requested in the first place to prove a point, there would have been no discovery on the cortisol.  In fact (2) doctors totally ignored/overlooked the cortisol low levels.  I am the one who found it and started reading and asking questions.  It's unfortunate our time and money along with Insurance Carriers host a ground for these doctors who show neglect far beyond what I could ever have time to discuss and goes much farther than my cortisol levels.

[PlateletGal]

It sounds like what I had due to Chronic Fatigue Syndrome ---- secondary adrenal insufficiency. In my case, my cortisol level was low... but my ACTH level was normal (one point lower and I would have been diagnosed with Addison's disease). My ACTH stimulation test had some abnormally low cortisol levels in there.

Can you get a copy of your lab results for me ? The reason why is Endocrinologists can often misinterpret ACTH stimulation results, especially if they don't treat CFS patients.

[Marin600]

Hi.  Guess nobody with your readings is watching the board.  Since the AM result has been low more than once, that likely eliminates a fluke test result.  Does your Endo have a rep for diagnosing the full spectrum of adrenal problems, or just Addison's and Cushing's?  Is there a clinic within a couple hours of driving that uses a holistic approach?  If you want to stick with traditional medicine, is there a clinic that sees a gob lot of adrenal patients every day?  Most Endo's see patients with all kinds of glandular problems.  Maybe one who sees nothing but adrenal problems would more be more likely to correctly diagnose and treat you.  Read Sick and Tired, by Robert O. Young, PhD, study pH, read about Olive Leaf Extract (Walker), and consider a live blood cell test (ask at the best health food store in town).  It clearly sounds as though you're going to have to wrestle this bear yourself, and actively advocate for answers.  I have no patience with drs who don't discuss test results (other than standard tests) and ramifications with me very quickly.  I'd be looking at sharing what info you now have with yet another specialist.  Good luck.  Get back to us and tell us what happens.

[dolcern]

I AGREE WITH WRESTLING THE BEAR- MORE LIKELY THE BEAR KNOWS MORE THAN THE DOC!!! I HAVE WRITTEN A LOT AND AM VERY EDUCATED (SELF) AS ALL OF US ARE. I FINALLY FOUND THE 15TH DOC WHO IS 4 HOURS AWAY. HE SAYS, HE'S USUALLY THE 15TH DOC. HE'S GREAT, MY CORTISOL IS .03 AM AND ABOUT SAME PM. I HAD TO ORDER ONLINE SALIVARY CORTISOL. LOCAL DOCS AND HOSPITAL SOO BAD. RURAL AREA. I AM WALKING DEAD. HAD 2/3 THYROID REMOVED-SCHEDULED FOR ENTIRE REMOVAL. PIECE LEFT IN HAD NODULE, NEITHER BIOPSIED BY SURGEON. LOCAL PATHOLOGIST- PAPILLARY CANCER AND FOLLICULAR CANCER EXCISED. SENT TO UPMC FOR SECOND OPINION NADA- FOUND NOTHING, STATED NOT ENOUGH SPECIMEN. bs. I HAD IT SENT TO ROSWELL AS FORMER RN- AND GOOD INSURANCE THEY AGREED. THEY VALIDATED BOTH CANCERS. I HAD TO TAKE APART THE REPORT TEST BY TEST WORD BY WORD SO DOCS COULD UNDERSTAND. SWITCHED DOCS AFTER 4MOS NO REPLACEMENT- STILL MYXEDEMA DUE TO LATENESS OF REPLACEMENT. (ORIGINALLY A HYPERFUNCTIONING ADENOMA. DESPITE LYMPHADENOPATHY, ROSWELL CANCELLING MY APPT (PCP NEVER READ REPORT SO A YEAR BEHIND), IN FINDING OUT. AT WHICH TIME PCP STARTING MANIPULATING MY THYROID MEDS ETC TO GET RID OF ME SO I WOULDNT SUE HIM. ROSWELL SAID GET UP THERE RIGHT AWAY. MADE APPT. THAT WEEK. GOT CANCELED DUE TO INSURANCE CHANGE...... MEANWHILE, NEED A PET SCAN BUT DONT CARE ABOUT THAT RIGHT NOW. jUST WANT CORTISONE REPLACEMENT. I ORDERED OTHER ONLINE TESTS, THAT MY PCP WOULDNT ORDER. SHE THINKS I SHOULD BE HYPOTHYROID DUE TO TSH OF 0. WHO CARES ITS JUST SITTING THERE NOT CIRCULATING. AT A TIME WHEN YOU FEEL YOUR WORST- MY ADVICE START OVER, YOUR ENDO NOT PUTTING 1 AND 1 TOGETHER. ENDOS HAVE ABOUT MONTH RESIDENCY AND MOST OF THAT TIME ABOUT DIABETES. THYROIDS ARE MATHMETICAL, COMPLICATED, AND UNLESS YOU HAVE A MOTIVATED VERY INTELLIGENT, ONE, :FORGET ABOUT YOUR HEALTH". FINALLY, CONVINCED THE 15TH ENDO WHO IS GOOD BUT FOUR HOURS AWAY TO COME UP HERE AND I WOULD SELF PAY  A LOT! PLUS NEEDS GIVE SEMINAR TO THE IDIOTS UP HERE. (BY THE WAY THREE TRIPS TO HOPKINS WHEN I LIVED THERE---NADA-EXCEPT A BIOPSY THAT HIT APEX LEFT LUNG- CONTAMINATED WITH BLOOD. POSSIBLE SEEDING OF CANCER TO THAT LUNG BREACH. I USE STOP THYROID MADNESS WEBSITE BUT NOW I JUST NEED ACTION. ONCE I'M WELL-STILL NEED A 24 HOUR URING DUE TO SALT CRAVING FREQUENT VOIDING AND NEW DX.  OF DIABETES- BS. CAUSED BY HYPOTHYROID AND NO CORTISOL STATE. GOOD LUCK, FIND A GOOD DOC- YOURS IS NOT!! SAD WHEN GOOD IS CONSIDERED THEY DON;T THINK ITS ALL IN YOUR HEAD!!!! NATIONAL PROBLEM AND NOT A PROBLEM OVERSEAS. INFORM YOURSELF AND HAVE TO SELF PAY FOR ONLINE TESTING I LIKE ZRT. YOU PICK WHAT YOU KNOW YOU NEED BY THE TIME YOU'VE SELF EDUCATED YOURSELF. JUST HAD PITUITARY MRI- RADIOLOGIST CALLED ME, HE CANT SEE ANY ADENOMAS ETC., REFUSES TO SEND TO NEURORADIOLOGIST. I HAVE COPY SO I'M SENDING TO ONE. GOOD WISHES TO ALL.

[dolcern]

I AGREE WITH WRESTLING THE BEAR- MORE LIKELY THE BEAR KNOWS MORE THAN THE DOC!!! I HAVE WRITTEN A LOT AND AM VERY EDUCATED (SELF) AS ALL OF US ARE. I FINALLY FOUND THE 15TH DOC WHO IS 4 HOURS AWAY. HE SAYS, HE'S USUALLY THE 15TH DOC. HE'S GREAT, MY CORTISOL IS .03 AM AND ABOUT SAME PM. I HAD TO ORDER ONLINE SALIVARY CORTISOL. LOCAL DOCS AND HOSPITAL SOO BAD. RURAL AREA. I AM WALKING DEAD. HAD 2/3 THYROID REMOVED-SCHEDULED FOR ENTIRE REMOVAL. PIECE LEFT IN HAD NODULE, NEITHER BIOPSIED BY SURGEON. LOCAL PATHOLOGIST- PAPILLARY CANCER AND FOLLICULAR CANCER EXCISED. SENT TO UPMC FOR SECOND OPINION NADA- FOUND NOTHING, STATED NOT ENOUGH SPECIMEN. bs. I HAD IT SENT TO ROSWELL AS FORMER RN- AND GOOD INSURANCE THEY AGREED. THEY VALIDATED BOTH CANCERS. I HAD TO TAKE APART THE REPORT TEST BY TEST WORD BY WORD SO DOCS COULD UNDERSTAND. SWITCHED DOCS AFTER 4MOS NO REPLACEMENT- STILL MYXEDEMA DUE TO LATENESS OF REPLACEMENT. (ORIGINALLY A HYPERFUNCTIONING ADENOMA. DESPITE LYMPHADENOPATHY, ROSWELL CANCELLING MY APPT (PCP NEVER READ REPORT SO A YEAR BEHIND), IN FINDING OUT. AT WHICH TIME PCP STARTING MANIPULATING MY THYROID MEDS ETC TO GET RID OF ME SO I WOULDNT SUE HIM. ROSWELL SAID GET UP THERE RIGHT AWAY. MADE APPT. THAT WEEK. GOT CANCELED DUE TO INSURANCE CHANGE...... MEANWHILE, NEED A PET SCAN BUT DONT CARE ABOUT THAT RIGHT NOW. jUST WANT CORTISONE REPLACEMENT. I ORDERED OTHER ONLINE TESTS, THAT MY PCP WOULDNT ORDER. SHE THINKS I SHOULD BE HYPOTHYROID DUE TO TSH OF 0. WHO CARES ITS JUST SITTING THERE NOT CIRCULATING. AT A TIME WHEN YOU FEEL YOUR WORST- MY ADVICE START OVER, YOUR ENDO NOT PUTTING 1 AND 1 TOGETHER. ENDOS HAVE ABOUT MONTH RESIDENCY AND MOST OF THAT TIME ABOUT DIABETES. THYROIDS ARE MATHMETICAL, COMPLICATED, AND UNLESS YOU HAVE A MOTIVATED VERY INTELLIGENT, ONE, :FORGET ABOUT YOUR HEALTH". FINALLY, CONVINCED THE 15TH ENDO WHO IS GOOD BUT FOUR HOURS AWAY TO COME UP HERE AND I WOULD SELF PAY  A LOT! PLUS NEEDS GIVE SEMINAR TO THE IDIOTS UP HERE. (BY THE WAY THREE TRIPS TO HOPKINS WHEN I LIVED THERE---NADA-EXCEPT A BIOPSY THAT HIT APEX LEFT LUNG- CONTAMINATED WITH BLOOD. POSSIBLE SEEDING OF CANCER TO THAT LUNG BREACH. I USE STOP THYROID MADNESS WEBSITE BUT NOW I JUST NEED ACTION. ONCE I'M WELL-STILL NEED A 24 HOUR URING DUE TO SALT CRAVING FREQUENT VOIDING AND NEW DX.  OF DIABETES- BS. CAUSED BY HYPOTHYROID AND NO CORTISOL STATE. GOOD LUCK, FIND A GOOD DOC- YOURS IS NOT!! SAD WHEN GOOD IS CONSIDERED THEY DON;T THINK ITS ALL IN YOUR HEAD!!!! NATIONAL PROBLEM AND NOT A PROBLEM OVERSEAS. INFORM YOURSELF AND HAVE TO SELF PAY FOR ONLINE TESTING I LIKE ZRT. YOU PICK WHAT YOU KNOW YOU NEED BY THE TIME YOU'VE SELF EDUCATED YOURSELF. JUST HAD PITUITARY MRI- RADIOLOGIST CALLED ME, HE CANT SEE ANY ADENOMAS ETC., REFUSES TO SEND TO NEURORADIOLOGIST. I HAVE COPY SO I'M SENDING TO ONE. GOOD WISHES TO ALL.