Cortisol

judyinthesky

Senior Member
Messages
350
Likes
430
Dear all,

I'm having a huge new symptoms mess and you could help me with providing the following information

If you measured your Cortisol, could you provide a value including the norm range and your level of ME?

If you treat your low Cortisol, could you say how and whether you are sensitive to prednisone or can tolerate it etc?

I'm having a decline in that value, a general decline, and I'm also constantly thirsty like crazy like I'm about to die, thirst torture, but unfortunately due to many illnesses there's more than one possibility for it.

We're looking into:
Maladsorption (which I have anyways due to pancreas issues, and can also come from my spinal inflammation)
Hyperthyroidism as I have no thyroid and losing weight
Spinal leak related thirst problem due to the hypothalamus effected, and pressure on such structures (would be hard to measure though)
Phantom neuro signals
And adrenals

Diabetes and Covid excluded.

Would help me to get an idea!

I'm very severe for context.
 
Messages
10,164
Likes
24,566
I've been recently trying a new probiotic, Mood Probiotic...came up in a PR thread. It is supposed to address issues with the HPA axis..and may result in some shifts in cortisol.

I have noticed something seems to be shifting for me in the sleep and awake cycle and it may be cortisol.

But I have no data..whats happening is I seem to need less sleep. I'm waking up earlier and less stupored. I'm sort of just observing this for now wondering whats going on....

I',m sorry you are having these challenges, I hope somebody can help wiht some useful suggestions.
 

Judee

Senior Member
Messages
2,995
Likes
8,400
Location
Great Lakes
The first test is an at home 4 collection saliva test from 2017 and the other was a morning blood test at the doctor's office. That one was from 2019.

I think they also use age to determine "normal reference ranges" so I would have been around 50y in the first one and 52y in the second.

Also I notice the measurements are not the same from one of those tests to the next..i.e. one measuring in ng/Ml and the other mcg/DL probably because they measured the same thing in different ways but just wanted to point that out.

Anyway, I didn't test low as you can see but thought I'd include them anyway so you could see reference levels.

My level of ME is moderate to severe. I am mostly housebound but getting more and more bedbound. I go someplace about once every 2-3 months maybe but it's really hard. Even getting the garbage to the curb on collection day is hard. I missed it today. :(

I can't do pred but I have done Cortef (hydrocortisone) in tiny doses. However, it crashes me the next day so in the past I've only used it when I needed something more for an especially stressful life event.

I haven't used it for a long time now though.

I tend to use licorice and sometimes like to add grapefruit juice as there are studies that they do extend cortisol in our bodies.

Anyway, the licorice can short us on potassium, raise blood pressure and affect heart rhythms so be careful with that but is also anti-viral and estrogenic so those might be positives.

Also there are a lot of drug interaction between grapefruit juice and Rx medications. Here is just a list of some of them: https://archive.kpcc.org/blogs/news...ruit-drug-interactions-rise-85-prescription-/

You can also check the licorice against your medications on this site's interaction checker: https://www.drugs.com/drug_interactions.html

That's if you wanted to try either of those things.

Hope this helps.
 

Attachments

Last edited:

judyinthesky

Senior Member
Messages
350
Likes
430
The first test is an at home 4 collection saliva test from 2017 and the other was a morning blood test at the doctor's office. That one was from 2019.

I think they also use age to determine "normal reference ranges" so I would have been around 50y in the first one and 52y in the second.

Also I notice the measurements are not the same from one of those tests to the next..i.e. one measuring in ng/Ml and the other mcg/DL probably because they measured the same thing in different ways but just wanted to point that out.

Anyway, I didn't test low as you can see but thought I'd include them anyway so you could see reference levels.

My level of ME is moderate to severe. I am mostly housebound but getting more and more bedbound. I go someplace about once every 2-3 months maybe but it's really hard. Even getting the garbage to the curb on collection day is hard. I missed it today. :(

I can't do pred but I have done Cortef (hydrocortisone) in tiny doses. However, it crashes me the next day so in the past I've only used it when I needed something more for an especially stressful life event.

I haven't used it for a long time now though.

I tend to use licorice and sometimes like to add grapefruit juice as there are studies that they do extend cortisol in our bodies.

Anyway, the licorice can short us on potassium, raise blood pressure and affect heart rhythms so be careful with that but is also anti-viral and estrogenic so those might be positives.

Also there are a lot of drug interaction between grapefruit juice and Rx medications. Here is just a list of some of them: https://archive.kpcc.org/blogs/news...ruit-drug-interactions-rise-85-prescription-/

You can also check the licorice against your medications on this site's interaction checker: https://www.drugs.com/drug_interactions.html

That's if you wanted to try either of those things.

Hope this helps.
Thank you for the detailed reply
Citrus stuff not possible due extreme mast cell activation.

Liquorice, interesting.

Your information about hydro vs pred is very interesting.
May I ask, do you crash often?
I tend to be in rolling...
 

Judee

Senior Member
Messages
2,995
Likes
8,400
Location
Great Lakes
May I ask, do you crash often?
I tend to be in rolling...
My life consists of bad days or really bad days so I pretty much do consider myself to be in a continuous rolling PEM crash.

Occasionally in the evenings I will feel a little better and more able to do things but most of the time when I'm doing anything, it's because I'm pushing myself to do it.
 
Last edited:

hapl808

Senior Member
Messages
886
Likes
2,305
My life consists of bad days or really bad days so I pretty much do consider myself to be in a continuous rolling PEM crash.
Very much relate to that. Hard to discuss with 'normal' friends when they ask how you're doing. Either you sound doom and gloom, or else purposefully misleading.

"Well, a bit better than yesterday!" Which often translates in reality to: awful, everything hurts, splitting headache, dizzy, blurry vision, brain fog, exhausted, nauseous. But I'm slightly less nauseous than I was yesterday, so let's call it a win! And since I don't actually feel positive like that anymore, hard to know what to say.

I do feel kinda doom and gloom lately because my mental stamina keeps getting worse.
 

Shanti1

Moderator
Messages
1,332
Likes
3,430
Hi Judy,

These are my "4-point" salivary from Dec 12, 2021 from Doctor's Data, which is considered more of a "functional medicine" lab. My levels are not low (blue zone), but are are out of the optimal range (yellow zone).
1659291399039.png

Here are my morning Blood Cortisol levels from Nov 15, 2021
1659291263210.png


Salivary cortisol testing measures "free" cortisol, or cortisol that is not bound to a carrier protein. Blood cortisol measures both free and total cortisol. You can actually measure free cortisol in blood as well, but hardly anyone does.

Many people believe that salivary is a more accurate measure because free cortisol is what is actually available for your cells to use. I will say I have had many salivary cortisol and blood tests done and my cortisol is always lower in saliva. Sometimes my AM cortisol is in the officially low zone.

I also have access to a database of many lab test results through my work. Most salivary cortisol tests come back lower than the optimal range on the AM read. Occasionally, there are some in optimal or some that are elevated. I do not know if this is because people who choose to have the test feel fatigued, so are more likely to have low readings or if there is something else going on. I did reach out to the salivary lab and they told me that they derived their reference ranges from "healthy people" and used 10th and 90th percentiles for “yellow” limits and, 2.5th percentile for “blue” limit, and the 97.5th percentile for red the red limit, so they should have an accurate reference range.

I have not taken prednisone. I have used adrenal glandulars as a source of cortisol. It helps the first day I take it, but does nothing if I continue to take it. Like Judee, I will use it if I need an extra boost. Others on this forum swear by cortisol replacement. I would consider myself mild mentally but low-moderate physically, atm.