ACTH Test

soxfan

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So this morning I had he ACTH Stim test. My starting cortisol was 8.0 at 8am . Range is 4-24. Then they injected the stimulation and in an hour it raised to 31.0. She said my adrenals were able to react to stress. My question is when you have a chronic illness and your body is stressed everyday how are the adrenals able to keep up?

They inject this stuff and you get a one time dose of stimulation. I even felt like the walking dead a few hours later. Was that from my adrenals being drained or just because I have CFS.

I am so upset right now because I feel that a morning level of 8 is on the low side and my former endo wanted it 15-20 in the morning and had me on 5mg Cortef in the morning.

Maybe I am just overreacting because I was certain the levels would not double ...

Anybody have this test before and what was your starting level. I am not sure if I should get another opinion or just accept it...
 
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Ema

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I think 8 is a bit low too.

The amount of ACTH they use for the test is something like 100x more than you would normally produce (don’t quote me on that number, but it is massive).

The problem is that most of our adrenals are fine, our brains are just not signaling them properly. And the high dose stim test especially is not designed to provide much information about that condition. You could always ask for a low dose stim test and see as that one will show secondary AI, but still missed many cases unfortunately. Testing is sadly so limited in so many ways.

I think you can likely rule out autoimmune Addison’s disease with that result, but you can always ask for the 21-OH antibodies just to be thorough.

If you feel better on HC though, it sounds like your doctor is good to have you stay on it regardless? Just because you don’t have Addison’s doesn’t mean that HC can’t be of use in general.

A lot of times people feel much better after a stim test because it finally provides the impetus to get some much needed cortisol. That was my experience as well. It’s possible that the low cortisol is a protective state as well. You might look up the podcast episode by Bryan Walsh titled The Truth About Adrenal Fatigue for a fascinating perspective on adrenals and immunity.

I took steroid replacement for many years myself before my cortisol starting coming back high. Go figure. But it didn’t do me any harm to replace it when it was low.
 

jpcv

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Some patients have expectations that their tests are going to be abnormal, so they feel validated in their complaints.
And when tests come normal, they feel upset because it doesn´t fit their theories about their disease.
I´ve seen it happen with my cancer patients and also it happened with me, during the course of my disease
 

soxfan

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@Ema I am not currently taking any cortisol replacement now. I have been off for like 4 years and now I am having these symptoms. I know you can’t believe everything you read about adrenal fatigue but I have many symptoms of my adrenal not working properly.
I totally agree that our brains aren’t not signaling properly and that is the problem. There is no way my endocrinologist would even consider that.

I knew I didn’t have Addison’s and I kind of knew the stim test would be normal but still feel the 8 is low for people like us who have a chronic condition. I did email her and ask for a month of hydrocortisone but I doubt she will agree based on everything being “normal”

I have read James Wilson’s book and the thread on Bryan Walsh ...that was kind of technical for me . I have read a lot from Dr. Lam as well.

I might just have to chalk all this up to good ole CFS...although while I was on Cortef I never had crashes....

I did not feel good after the ACTH injection...in fact when I got home I ate lunch and totally crashed till this morning. I could not do anything.
 

kangaSue

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Check out the symptoms of Nutcracker Syndrome (NCS) to see if any of it could fit for you. Increased left adrenal gland venous pressure from this can be a cause of adrenal insufficiency and morning cortisol can be reduced, though not always the case.
NCS can also cause autonomic dysfunction including OI or POTS and chronic fatigue symptoms which does get diagnosed as CFS in some cases before discovering the left renal vein compression.
 

soxfan

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Doctor said no to low dose Cortef...I expected it. She said she could not ethically give me it if I did not show adrenal insufficiency even though my 8am reading was on the low end...
 

Learner1

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Good grief! I think you need to find another doctor. It is unethical not to help a patient, no matter what the piece of paper in front of her says.

My first number on the ACTH stim test was 12. I posted my full results here and was advised to stay on my hydrocortisone pills. My ME/CFS doc looked at my results and said they weren't normal and advised me to stay on the hydrocortisone, too.

The only one who thought my results were normal was the endocrinologist, even when I told him I was asleep for the whole thing and didn't wake up until 45 minutes after taking my hydrocortisone... I quit seeing him after that.

Have you done a 24 hour saliva cortisol test? If that shows you below the curve, you might very well benefit from replacement dose hydrocortisone, under 25mg a day, in divided doses. You may also have issues with when you're making cortisol throughout the day, which you can manipulate with dosing and supplements.

Have you had a full thyroid panel run, too? FT3, FT4, rT3, antibodies, and TSH? It may be part of the picture, too, though working on your adrenals first is a good idea.
 

soxfan

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@Learner1 ...I am actually considering going up to NH to my former doctor who had me on hydrocortisone. He did the saliva testing (I was flat till 10pm) and blood which was 10. He immediately put me on replacement saying the morning reading was too low.

I basically begged the endocrinologist and tried to explain that our bodies are dysfunctional and most likely my brain is not signaling the adrenals either from Lyme or CFS....she really didn’t care and said she was sorry I am not feeling well.

I even just asked for a two week or one month trial....

I think because my stim test tripled she thinks my adrenal function is fine...I know it’s not because of how I feel...

My Acupuncturist was shocked and in disbelief that she wouldn’t treat me. I am currently now taking herbal but my Acupuncturist feels I need a kick start (cortef) first and then the herbals can support it.

So I might have to head up to NH to my Lyme doctor. The endocrinologist does not believe in saliva testing...

As for my Thyroid I have hypothyroidism since 2006 and have been on medication for that. I was just tested for all TSH..T4...T3 and reverse . All good.
 

Learner1

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@Ema ...I think my NH doctor would send me a saliva kit...if not I will order one. Thanks!
It sounds like your NH doctor can help you... Hope you get answers soon.

BTW... I find that if I start gaining weight around my waist, it means I'm on too much HC and time to cut back. I've adjusted my dose up and down slightly over the time I've been on it, and find my labs match what my body is telling me, and that steering between being in a heap on the floor and gaining weight around the middle tends to work well. I take just enough to keep me from crashing.
 

soxfan

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@Learner1 ..Still waiting to hear back. I hope he will take me back as a patient and we can also do video calls as well instead of driving up there every few months. My fingers are crossed because I need to eliminate at least some of this tiredness...
 
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Your morning level of 8 is right on par with typical CFS/overtraining/Adrenal fatigue. Keep in mind that the term "adrenal fatigue" is a misleading name for something that is a real situation. IT's basically a fried CNS. Taking hormones to treat this (generally speaking) is like drinking coffee because you haven't slept in a week.
 

Learner1

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Your morning level of 8 is right on par with typical CFS/overtraining/Adrenal fatigue.
ME/CFS is not the same as overtraining or the controversial "adrenal fatigue." In ME/CFS, the HPA axis is known to be altered.
Taking hormones to treat this (generally speaking) is like drinking coffee because you haven't slept in a week.
Hydrocortisone in physiologic (replacement) doses can be very helpful in helping ME/CFS patients function, while they're working on treatment for other issues.

https://www.ncbi.nlm.nih.gov/m/pubmed/11502777/?i=3&from=/21946893/related

https://www.holtorfmed.com/diagnosi...journal-of-chronic-fatigue-syndrome-2008-143/
 

kelly8

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I also had the same test and was considered "normal". I was passing out during the test and the nurses and office staff kept telling me how much i must need coffee in the am because i was falling asleep. I think i crashed later that day too. I can't remember now. every time i try to tell the Drs that that happened they shrug it off saying i was expecting the results to be different. I kept asking if it was possible to have an autoimmune reaction to cortisol and the Drs keep saying no. Garbage.

I wish they would just open their eyes for a minute and see that the reaction was a problem.
 

anni66

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The hydrocortisone helps me a lot. Hope you get some relief soon.
My daughter has been prescribed hydrocortisone as base hormone level was on low side. Also booked for MRI to check hypothalamus/ pituitary.
Perhaps the difference between paediatric and adult services here.
My concern is that she feels an energy boost that she dosn' t really have. Pacing is better than last year but not wonderful ....
 
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ME/CFS is not the same as overtraining or the controversial "adrenal fatigue." In ME/CFS, the HPA axis is known to be altered.

Hydrocortisone in physiologic (replacement) doses can be very helpful in helping ME/CFS patients function, while they're working on treatment for other issues.

https://www.ncbi.nlm.nih.gov/m/pubmed/11502777/?i=3&from=/21946893/related

https://www.holtorfmed.com/diagnosi...journal-of-chronic-fatigue-syndrome-2008-143/
I didn't say it was the same, you are implying that I did. Drinking coffee can also be very helpful if you haven't slept, Doesn't mean its the best idea to treat the symptom without looking a the cause.

Also your own link from hortof medical group disagrees with with what you have written. According to the webpage you've posted a link to, they believe that "the adrenal fatigue" situation is an HPA axis disfunction as well.

It's been well established that after a long period of elevated cortisol there is a period of low cortisol. This appears to happen in CFS, Overtraining, and whatever is the situation called "adrenal fatigue".
 
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@Learner1 The open medicine foundation recently posted an article stating the belief that although people present differently, the underlying condition is the same in all CFS patients. This is all old news. Many people including myself, find that only when the body reaches a level of recovery do supplements and hormones really seem to change things. And just like coffee, if your not well versed in knowing your limits, you can easily burn the candle at both ends. Thinking a doctor that we have access to is an expert in hormone replacement therapy is not a well placed assumption.
 

Learner1

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I didn't say it was the same, you are implying that I did.
Er, you said "typical CFS/overtraining/Adrenal fatigue." Seems that you said that CFS, overtraining, and adrenal fatigue typically come together, but perhaps that's not what you meant to say.
Drinking coffee can also be very helpful if you haven't slept, Doesn't mean its the best idea to treat the symptom without looking a the cause.
Then, you said "Taking hormones to treat this (generally speaking) is like drinking coffee because you haven't slept in a week."

My experience of taking hormones (and I take a few) is that their effects in the body are quite different than drinking coffee. They are going down different biochemical pathways and do different things. I've also found that caffeine in coffee can perk one up temporarily, though, when I was at my worst, it actually put me to sleep.
Also your own link from hortof medical group disagrees with with what you have written. According to the webpage you've posted a link to, they believe that "the adrenal fatigue" situation is an HPA axis disfunction as well.

It's been well established that after a long period of elevated cortisol there is a period of low cortisol.
After reading every website and book I could find on adrenal fatigue, I was puzzled as I didn't fit the categories, I didn't have the elevated cortisol preceding my crash.

It was very confusing, especially since I was already doing all of the things the resources advised me to do, with no results to show.

2 years later, in looking back, it seems that the impact of cancer surgery and abrupt surgically induced menopause, chemotherapy, and a significant car accident affected my pituitary and adrenal output. My immune system took a hit, too, and I had 7 infections rise up as well, feeding the dysfunction.

As the resources I provided indicate, people with ME/CFS have HPA axis problems, and many do have reduced glandular output, for whatever reason. They both agree that replacement hydrocortisone can be helpful in improving function, which my doctor proved to me.
This appears to happen in CFS, Overtraining, and whatever is the situation called "adrenal fatigue".
I don't find that what caused my HPA dysfunction to be at all the same as overtraining in elite athletes, which I'm familiar with, or people who eat and sleep poorly and live stressful lives. If they follow the advice in the copious adrenal fatigue literature, they will likely improve in time.

Curing ME/CFS seems to be a different situation altogether as the standard adrenal fatigue advice doesn't work. There's a lot more to it.