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Cortisol brought me back to life.

Fogbuster

Senior Member
Messages
269
Hey guys, could someone please help me with reading my cortisol and thyroid levels from tests I had done in 2018? Something doesn't seem right...

I had a dexamathesone stimulation test and my serum cortisol level was 15 nmol and the reference range is 185-624 nmol. Doesn't that mean my cortisol is dangerously low? I spoke to my doctor about this and she said this was normal.

My thyroid peroxidase antibody level was 1IU/ml and the range is 0.0-8.0. So very low in relation to the range.

T4 level was 10.6, range was 8.0-16.0

Serum TSH level 1.55 when range is 0.38-5.33

It all just seems rather low... Does anyone know if these results are worth investigating further?

I have constant chronic fight/flight, strong stress response feeling around my body. Very hyperactive stress response, wired etc from moderate to intense exercise, eating, not eating regularly enough. It's like I've been injected with a varying dose of an adrenaline shot. It's very unpleasant.
 

Gingergrrl

Senior Member
Messages
16,171
my serum cortisol level was 15 nmol and the reference range is 185-624 nmol. Doesn't that mean my cortisol is dangerously low? I spoke to my doctor about this and she said this was normal.

If the numbers you wrote are correct (and every lab has different reference ranges), than your Cortisol is extremely low at 15 (if the range is 185 to 624)! How did your doctor explain this? My Cortisol remains very low (but within the range where I had it tested at Quest) but my ACTH remains undetectable. Do you know if your ACTH was also tested?

Serum TSH level 1.55 when range is 0.38-5.33

This is very good. My Endocrinologist always wants TSH to be under 2 and ideally to be under 1. It means that your thyroid medication is at the proper dose/range if your TSH is 1.55 (although it should also be assessed by your symptoms and not just the lab result).
 

Fogbuster

Senior Member
Messages
269
If the numbers you wrote are correct (and every lab has different reference ranges), than your Cortisol is extremely low at 15 (if the range is 185 to 624)! How did your doctor explain this? My Cortisol remains very low (but within the range where I had it tested at Quest) but my ACTH remains undetectable. Do you know if your ACTH was also tested?



This is very good. My Endocrinologist always wants TSH to be under 2 and ideally to be under 1. It means that your thyroid medication is at the proper dose/range if your TSH is 1.55 (although it should also be assessed by your symptoms and not just the lab result).

Thankyou for your response :).

I recently got a copy of my records for insurance purposes and came across these results, when I spoke to my doctor about them I mentioned that in the notes section it said that dexamethasone was apparently prescribed to me, but I never received it. She then said that that was the test... When I mentioned the extremely low score compared to the reference range, she said something along the lines of you wanting it low. Might need to get another opinion. It would explain so much if I did in fact have very low cortisol!
 

Fogbuster

Senior Member
Messages
269
If the numbers you wrote are correct (and every lab has different reference ranges), than your Cortisol is extremely low at 15 (if the range is 185 to 624)! How did your doctor explain this? My Cortisol remains very low (but within the range where I had it tested at Quest) but my ACTH remains undetectable. Do you know if your ACTH was also tested?



This is very good. My Endocrinologist always wants TSH to be under 2 and ideally to be under 1. It means that your thyroid medication is at the proper dose/range if your TSH is 1.55 (although it should also be assessed by your symptoms and not just the lab result).
And apologies for the slow reply, I didn't get a notification so didn't think anyone replied!

I'm trying to find the piece of paper with the test results on, when I find it I'll take a photo and put it on here so you can see it. Hope that's alright.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I recently got a copy of my records for insurance purposes and came across these results, when I spoke to my doctor about them I mentioned that in the notes section it said that dexamethasone was apparently prescribed to me, but I never received it.

So you never took Dexamethasone and your Cortisol was suppressed without ever taking a steroid?

She then said that that was the test... When I mentioned the extremely low score compared to the reference range, she said something along the lines of you wanting it low.

That is very strange to me. You would definitely want your Cortisol level to be inside of the reference range. Do you know what your ACTH level was?

I'm trying to find the piece of paper with the test results on, when I find it I'll take a photo and put it on here so you can see it. Hope that's alright.

It is alright with me! I would just make sure that you cover up your name and personal info to keep it confidential.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Fogbuster It would be wise to use current lab results for any kind of medical decision making. Your body may be doing something different than if did 2 years ago.

Tests that might be helpful are a 24 hour saliva or urine cortisol test, ACTH, an ACTH stim test. The 24 hour cortisol test eoujd tell you if you are making enough cortisol at 4 or 5 points during the day. A normal test eoujd look like this, with all points within range (the green area).

Screenshot_20210303-221213.png

Many of us have abnormal curves. Though some people have high cortisol, many of us find that ours is low at one or more points throughout the day.

Low cortisol can be dangerous and be part of a condition where the adrenal glands are not making adequate cortisol so the body cannot respond to stress, or even the demands of normal activity. At it's worst, it can provoke adrenal crisis, which can be life threatening, but many suffer from adrenal insuffiency, which can be a spectrum. Many doctors will only recognize full blown Addison's disease or adrenal crisis. This describes adrenal insufficiency and tests used to diagnose it.

https://www.niddk.nih.gov/health-in...enal-insufficiency-addisons-disease/diagnosis

In ME/CFS, it can be milder but still cause problems. The attached describes one doctor's thoughts on it, along with thee suggestion of replacing the inadequate cortisol production up to 15mg a day of hydrocortisone.

Dexamethasone us 20 times as strong as hydrocortisone. It is a powerful drug. It might be wise to familiarize yourself with the various steroids, their strengths and their purpose, how long they last, and the possible risks, benefits and side effects. If your body has the right amount, whether you're making it or taking it, you'll feel normal. Too little can cause negative symptoms, just as too much can.

My cortisol was very low 4 years ago. My doctor suggested hydrocortisone, and I was resistant, having heard negative things about steroids. But, my doctor convinced me to try it, and I went from being a sleepy heap in the floor to functioning. We found the right dose for me at the time was 25mg a day, taken in 3 doses - 10mg at 730am, 10 more at 11am and 5mg at 3pm. I had also failed an ACTH stim test, described in the link above, my level did not rise as much as a normal patient's.

Over time, as I solved other problems, I found I started to gain weight around my middle, and retested and found my cortisol was high midday. I was able to cut back on the dose, and take only 2.5-5mg once a day.

I did have an episode where I was given an IV drug which put an extraordinary load in my system, which threw me into adrenal crisis, with severe fatigue and excruciating pain above my kidneys. The doctor hadn't realized my adrenal function isn't normal still, but recognized my symptoms, and suggested I take dexamethasone, which resolved the pain from my adrenal glands within 20 minutes and I was able to take enough steroid to get me over the crisis then taper down to my normal dose of hydrocortisone.

Attention to this important area and appropriate testing and prescribing can really make a huge difference in symptoms and function.

One confusing area is the topic of "adrenal fatigue." When I was first sick, I read all I could in the internet and a couple of books on adrenal fatigue. I found it confusing as my cortisol hadn't been high - it was low - the "stages" of it didn't make sense, and I was doing all of the things recommended to "resolve" it but I was getting worse. The medical establishment isnt too helpful, saying there's no such thing, and only seeming to recognize full blown Addison's or adrenal crisis.

The reality is that many of the features of ME/CFS, whether infections, autoimmunity, toxicity if some sort, etc. all put stress on our bodies that our adrenals need to deal with. Holtorf's case, that many of us need to replace what we aren't making enough of makes sense. Too much can suppress out immune function, harm our bones, and cause unwanted weight gain. But, appropriately prescribed hydrocortisone or fludricortisone (fur those with low BP POTS) can be beneficial without the downsides.
 

Attachments

  • Holtorf HPA axis dysfunction - Diagnosis Treatment CFS FM.pdf
    244.4 KB · Views: 26

Fogbuster

Senior Member
Messages
269
@Fogbuster It would be wise to use current lab results for any kind of medical decision making. Your body may be doing something different than if did 2 years ago.

Tests that might be helpful are a 24 hour saliva or urine cortisol test, ACTH, an ACTH stim test. The 24 hour cortisol test eoujd tell you if you are making enough cortisol at 4 or 5 points during the day. A normal test eoujd look like this, with all points within range (the green area).

View attachment 41877
Many of us have abnormal curves. Though some people have high cortisol, many of us find that ours is low at one or more points throughout the day.

Low cortisol can be dangerous and be part of a condition where the adrenal glands are not making adequate cortisol so the body cannot respond to stress, or even the demands of normal activity. At it's worst, it can provoke adrenal crisis, which can be life threatening, but many suffer from adrenal insuffiency, which can be a spectrum. Many doctors will only recognize full blown Addison's disease or adrenal crisis. This describes adrenal insufficiency and tests used to diagnose it.

https://www.niddk.nih.gov/health-in...enal-insufficiency-addisons-disease/diagnosis

In ME/CFS, it can be milder but still cause problems. The attached describes one doctor's thoughts on it, along with thee suggestion of replacing the inadequate cortisol production up to 15mg a day of hydrocortisone.

Dexamethasone us 20 times as strong as hydrocortisone. It is a powerful drug. It might be wise to familiarize yourself with the various steroids, their strengths and their purpose, how long they last, and the possible risks, benefits and side effects. If your body has the right amount, whether you're making it or taking it, you'll feel normal. Too little can cause negative symptoms, just as too much can.

My cortisol was very low 4 years ago. My doctor suggested hydrocortisone, and I was resistant, having heard negative things about steroids. But, my doctor convinced me to try it, and I went from being a sleepy heap in the floor to functioning. We found the right dose for me at the time was 25mg a day, taken in 3 doses - 10mg at 730am, 10 more at 11am and 5mg at 3pm. I had also failed an ACTH stim test, described in the link above, my level did not rise as much as a normal patient's.

Over time, as I solved other problems, I found I started to gain weight around my middle, and retested and found my cortisol was high midday. I was able to cut back on the dose, and take only 2.5-5mg once a day.

I did have an episode where I was given an IV drug which put an extraordinary load in my system, which threw me into adrenal crisis, with severe fatigue and excruciating pain above my kidneys. The doctor hadn't realized my adrenal function isn't normal still, but recognized my symptoms, and suggested I take dexamethasone, which resolved the pain from my adrenal glands within 20 minutes and I was able to take enough steroid to get me over the crisis then taper down to my normal dose of hydrocortisone.

Attention to this important area and appropriate testing and prescribing can really make a huge difference in symptoms and function.

One confusing area is the topic of "adrenal fatigue." When I was first sick, I read all I could in the internet and a couple of books on adrenal fatigue. I found it confusing as my cortisol hadn't been high - it was low - the "stages" of it didn't make sense, and I was doing all of the things recommended to "resolve" it but I was getting worse. The medical establishment isnt too helpful, saying there's no such thing, and only seeming to recognize full blown Addison's or adrenal crisis.

The reality is that many of the features of ME/CFS, whether infections, autoimmunity, toxicity if some sort, etc. all put stress on our bodies that our adrenals need to deal with. Holtorf's case, that many of us need to replace what we aren't making enough of makes sense. Too much can suppress out immune function, harm our bones, and cause unwanted weight gain. But, appropriately prescribed hydrocortisone or fludricortisone (fur those with low BP POTS) can be beneficial without the downsides.

Thankyou so much for taking the time to write such a thorough and helpful post, I'll respond to it when I'm a bit less foggy. :)
 

Fogbuster

Senior Member
Messages
269
@Gingergrrl @Learner1

Hey guys, this is a photo of my serum cortisol results. Please do let me know what you think and if this is worth investigating further... Many thanks
 

Attachments

  • 16148670652961531857321551845954.jpg
    16148670652961531857321551845954.jpg
    2.1 MB · Views: 40

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Gingergrrl @Learner1

Hey guys, this is a photo of my serum cortisol results. Please do let me know what you think and if this is worth investigating further... Many thanks
It looks like this test is almost 3 years old. But, if I'm reading the range correctly vs. your results, your cortisol was well below range. A lot can happen in 3 years, so a current investigation would be appropriate, with a trial of hydrocortisone if you were still low.

Best wishes....
 

Gingergrrl

Senior Member
Messages
16,171
Hey guys, this is a photo of my serum cortisol results. Please do let me know what you think and if this is worth investigating further... Many thanks

@Fogbuster Do you know if you were also tested for ACTH? (just a regular blood test for ACTH level and not the ACTH Stim Test).

@Learner... I am going to be asking you some questions in the future re: ACTH, Cortisol, Cortef, etc... but not here and I don't want to take Fogbuster's thread off track!

Edit: I just printed out the long reply with the graph that you posted above so I can re-read it before I ask you any questions (later not now :hug:)
 

Davsey27

Senior Member
Messages
517
Maybe feedback loops at play.Perhaps increased oxidative stress,infections,chemical /environmental ssensitivities,nutritional deficiencies may be contributing to elevated or low cortisol and perhaps low cortisol is a symptom of the problem and maybe not the root

@Fogbuster I would be careful with intense exercise
 

thingsvarious

Senior Member
Messages
120
Maybe feedback loops at play.Perhaps increased oxidative stress,infections,chemical /environmental ssensitivities,nutritional deficiencies may be contributing to elevated or low cortisol and perhaps low cortisol is a symptom of the problem and maybe not the root

@Fogbuster I would be careful with intense exercise
Multiple ways lead to Rome. In my opinion, in some people it is a symptoms (but driver nonetheless) and in some others rather the root of the problem itself. however, whatever the case, in both cases it adds fuel to the fire
 

thingsvarious

Senior Member
Messages
120
Is HC or CA better??
In my opinion CA is much safer and healthier because the cortisol peak is much prolonged. Furthermore, steroid glucocorticoid exposure is less even on HC-equivalent doses. I think it's much safer and more physiological
 
Last edited by a moderator:
Messages
35
In my opinion CA is much safer and healthier because the cortisol peak is much prolonged. Furthermore, steroid glucocorticoid exposure is less even on HC-equivalent doses. I think it's much safer and more physiological
Thanks, appreciate it. i read your article regarding cortisol (+fludro) safety, but I am still on the fence on the decision of taking it. Do you think the risks are worth it for someone with CFS??
 

thingsvarious

Senior Member
Messages
120
Thanks, appreciate it. i read your article regarding cortisol (+fludro) safety, but I am still on the fence on the decision of taking it. Do you think the risks are worth it for someone with CFS??
I cannot give out medical adivce. My personal reasoning was this: What did I have to lose? I did tons of research and to me it seemed that the risk of not trying it was higher than the risk of trying given the risks and side effects from a low dose (0.05-0.1mg) are pretty low according to research
 

Avena

Senior Member
Messages
138
In my opinion CA is much safer and healthier because the cortisol peak is much prolonged. Furthermore, steroid glucocorticoid exposure is less even on HC-equivalent doses. I think it's much safer and more physiological
Do CA always have to be compounded? Or are there any branded and ready products on the market?

(Compounding is not really a thing in my area unless a larger group request it.)
 

thingsvarious

Senior Member
Messages
120
Do CA always have to be compounded? Or are there any branded and ready products on the market?

(Compounding is not really a thing in my area unless a larger group request it.)
Hello,
no, in some European countries cortisone acetate is standard of care instead of HC and they are supplied by large drug manufacturers the same way HC is. Much safer in my opinion