ACTH test anyone

Tyler2190

New Member
Hello I'm a 26 year old male diagnosed with CFS by Dr Montoya for 10 years. I had an ACTH injection test, to test my adrenal glands, the results were within normal range. However the next day my CFS symptoms increased X10 and have stayed that way since 3 years ago.

My muscle fatigue/ pain is much worse, my sleep is way worse I can't fall asleep and wake up even more unrefreshed. The doctors say this test is just supposed to simulate a regular stress response, but this never happened to me since having CFS so I'm thinking my stress response is being blocked on purpose to prevent my disease from worsening. I've taken prednisone(cortisol) before and nothing happened at all, yet ACTH did this to me I'm so confused, how was that possible?

Has anyone had this test or this type of reaction before to ACTH test before?
 

Remy

Administrator
Hello I'm a 26 year old male diagnosed with CFS by Dr Montoya for 10 years. I had an ACTH injection test, to test my adrenal glands, the results were within normal range. However the next day my CFS symptoms increased X10 and have stayed that way since 3 years ago.

My muscle fatigue/ pain is much worse, my sleep is way worse I can't fall asleep and wake up even more unrefreshed. The doctors say this test is just supposed to simulate a regular stress response, but this never happened to me since having CFS so I'm thinking my stress response is being blocked on purpose to prevent my disease from worsening. I've taken prednisone(cortisol) before and nothing happened at all, yet ACTH did this to me I'm so confused, how was that possible?

Has anyone had this test or this type of reaction before to ACTH test before?
Have you had your cortisol levels tested since the ACTH test three years ago? Or had your ACTH levels measured?
 

Tyler2190

New Member
Ive had my cortisol levels measured and been told there within the normal values, but I've never had acth measured, can you get that tested?
 

Remy

Administrator
Ive had my cortisol levels measured and been told there within the normal values, but I've never had acth measured, can you get that tested?
Yes, you can get a serum ACTH test.

I think if you've been feeling poorly for three years after an ACTH stim test, you need to get this tested again.

It would be great if you have actual numbers for these results too as doctors often get the cortisol testing wrong for some reason. I can't tell you how many people I've helped to get proper treatment after being told their results were "normal".

But I'd start with getting a fasting, 8AM cortisol and ACTH test and go from there.
 

oision

Member
Hello I'm a 26 year old male diagnosed with CFS by Dr Montoya for 10 years. I had an ACTH injection test, to test my adrenal glands, the results were within normal range. However the next day my CFS symptoms increased X10 and have stayed that way since 3 years ago.

My muscle fatigue/ pain is much worse, my sleep is way worse I can't fall asleep and wake up even more unrefreshed. The doctors say this test is just supposed to simulate a regular stress response, but this never happened to me since having CFS so I'm thinking my stress response is being blocked on purpose to prevent my disease from worsening. I've taken prednisone(cortisol) before and nothing happened at all, yet ACTH did this to me I'm so confused, how was that possible?

Has anyone had this test or this type of reaction before to ACTH test before?
you may find this interesting.
 

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cujet

Active Member
Hello, first post here. I'm going for an ACTH stim test next week. I certainly hope it does not worsen my fatigue issues.

To the OP, the ACTH and adrenal issues can be very difficult to troubleshoot. As the values change, and decrease, over the day. One would have to test multiple times per day, under normal conditions, while fatigue is occurring, to have any idea if there is a deficiency.

I've AM tested at OK levels and low on both ACTH and Cortisol. I have black lines in my fingernails, which can be a sign of adrenal insufficiency. I have severe fatigue/exercise intolerance and Hashimoto's.

Tried 10mg prednisone 1x/day and get near complete relief after 2+ weeks.

Tried Hydrocortisone in various doses, and get fairly good relief at 30 to 40mg, taken in 10mg pills spread out from AM to 3pm. BUT the hydrocortisone is a wild ride if I forget a pill, as symptoms come back hard.

Docs take me off the steroids, as they don't seem to believe me. Yet, that's what helps.

If, as it seems in my case, ACTH is low, cortisol will be low and fatigue will result. The ACTH stimulation test will result in a normal response. This points to secondary adrenal insufficiency.
 
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cujet

Active Member
Update:

Performed the ACTH stim testing a week ago. Upon testing, I felt fair, not terrible, not great, I was a little slow walking the 1/4 mile into the hospital but not dragging. Clearly the 7.0 base AM cortisol is bottom of the normal scale. I've seen it as low as 4.2 when I don't feel well. What's interesting is that within 15 minutes of the injection, I felt normal.

Cortisol Basal 7.0 ug/dL ug/dL
Cortisol Reference Ranges: 7-10 AM = 6.2-19.4 ug/dL, 4-8 PM = 2.3-11.9 ug/dL
Cortisol 30 min 17.8 ug/dL ug/dL
Cortisol 60 min 21.2 ug/dL ug/dL
Interpretation (ACTHST) A peak value of at least 18 ug/dL is a normal response to cortrosyn stimulation.

By the evening, I had crashed hard, and I mean hard. I took prednisone immediately and felt better. I've been on 10mg/pred 1x/d since. Tired of this (insert 4 letter word here)
 

Pgrovetom

Member
Update:

Performed the ACTH stim testing a week ago. Upon testing, I felt fair, not terrible, not great, I was a little slow walking the 1/4 mile into the hospital but not dragging. Clearly the 7.0 base AM cortisol is bottom of the normal scale. I've seen it as low as 4.2 when I don't feel well. What's interesting is that within 15 minutes of the injection, I felt normal.

Cortisol Basal 7.0 ug/dL ug/dL
Cortisol Reference Ranges: 7-10 AM = 6.2-19.4 ug/dL, 4-8 PM = 2.3-11.9 ug/dL
Cortisol 30 min 17.8 ug/dL ug/dL
Cortisol 60 min 21.2 ug/dL ug/dL
Interpretation (ACTHST) A peak value of at least 18 ug/dL is a normal response to cortrosyn stimulation.

By the evening, I had crashed hard, and I mean hard. I took prednisone immediately and felt better. I've been on 10mg/pred 1x/d since. Tired of this (insert 4 letter word here)
It would appear your adrenals are responding normally. Why wouldn't you just try 5-10mg of Prednisone daily tapered ( 1/2 dose upon awakening, 1/4 dose at noon and 1/4 dose at dinner) for a couple of months to see if you get symptom relief over a reasonable length of time.

The standard tests you have had are good to verify there is nothing gross wrong with your HPA axis but won't tell you if you have an intermittent problem or have a problem with the daily circadian rhythm levels. The 2 remaining tests that you have not done to evaluate these two aspects would be:

Check your cortisol and ACTH at 8AM every morning for 4-7 days. That would probably catch an intermittent problem.

The other test would be the 24 hour saliva testing. It typically has you take a saliva sample 5 times during the day to measure your Cortisol circadian rhythm curve. Your Hypothalamus is primarily responsible for driving your pituitary such that your Cortisol is maximum about 6AM and then declines throughout the day until its quit low at 3AM. Then that cycle repeats. The 24 hour test can be done using a variety of labs including:

1) https://www.zrtlab.com/test-specialties/stress-hormones/

2) https://www.gdx.net/product/adrenocortex-stress-hormone-test-saliva

ZRT can be ordered via Amazon or at

and GDX


But just having your doctor put you on 5-10mg for a few months and then taper off slowly is the acid test.

But doctors don't like to put you on prednisone for more than a few weeks because it can have long term affects on your HPA axis that would prefer to avoid. Its a catch 22.
 

cujet

Active Member
Thanks for the detailed reply.

I posted about Prednisone REALLY helping me feel better in another thread. https://www.healthrising.org/forums/threads/prednisone-helps-my-fatigue.6235/

The symptoms have been extreme fatigue, severe exercise intolerance, 11 hours coma-like sleep and 6 unwanted naps per day. 10mg pred fixes that 70-80% within 2 weeks. 4 months of pred then stopping Pred results in remission for 3+ months.

An unfortunate turn of events, but my doctor friend who prescribed prednisone for my skin issues, died in a horrific airshow plane crash in Stuart, FL this past Friday. http://www.kathrynsreport.com/2019/11/grumman-ov-1d-mohawk-n10vd-fatal.html (I was having horrible psoriasis on hands and elbows)

That's how I discovered that Prednisone really helped.

I've been back on Pred for 11 days now and feeling much better. Not falling asleep today at all.
 
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Not dead yet!

Well-Known Member
I just wanted to chime in and say that adrenal issues are part of my problem too. I haven't had an ACTH stim test. But it's pretty obvious by other symptoms.

Prednisone also helps me. I've been holding out and holding out, everytime I think, "OK now it's time to start taking it daily, so go make an appointment and ask." I always talk myself out of it on the assumption that ME/CFS is some sort of immune issue so why tone down the immune system? I take it on and off though and it always lasts with good effect for months after.

Another explanation, in my case might be, because my Celiac is autoimmune, so prednisone gives me a break from it.
 

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