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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Cortisol brought me back to life.

thingsvarious

Senior Member
Messages
120
I am a medical student in my last year. I have been replacing multiple of my hormones for years now.

Before I had crushing fatigue, I couldn´t function.

Out of all the hormones, the biggest difference made cortisol.

Because there is just SOOOO much misinformation about cortisol, I wrote a guide about how to check for low cortisol and replace it in a safe and effective way.

I am sure some of you have low cortisol, contributing to CSF.

I hope some of you find value in it. Enjoy.

How to replace cortisol. The Ultimate Guide.
 

Hip

Senior Member
Messages
17,824
Very interesting and detailed article on cortisol. Thanks for posting a link to it..

Would you know any prescription-free pharmacy which sells cortisone acetate? I looked at some of the prescription-free pharmacies listed in this post, but they do not stock it, so it appears to be quite a rare drug.

By the way, you might consider changing "CA" to "cortisone acetate (CA)" in your blog, in the first instance that you refer to this drug. It took me a while to figure out what CA meant.



Quoting your blog:
Also, whenever the adrenal gland secretes cortisol, it secretes about an equal amount of DHEA. DHEA, being slightly anabolic, protects your cells physiologically (somewhat) from the catabolic effects of cortisol. However, if you replace cortisol, your HPA is partially depressed, which means your DHEA secretion will be as well. Thus, it is advisable to give about equal amounts of DHEA (for example, on 25mg HC take 25–50mg DHEA once per day ).

This is interesting.

For me personally, however, I find even small amounts of DHEA make me aggressive, argumentative and irritable. I am OK with 5 or 10 mg daily, but higher than that, and I get this unpleasant anger and aggression appearing. Though with 7-keto DHEA (which unlike DHEA is not metabolized into testosterone) I can take 25 to 50 mg daily without triggering aggression.

Any thoughts? I guess if I were to try hydrocortisone 20 mg daily, it might be best to keep DHEA to no more than 5 or 10 mg.
 
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Hip

Senior Member
Messages
17,824
What do you think of the idea of taking low doses of theophylline with hydrocortisone?

Theophylline greatly potentiates the anti-inflammatory effects of corticosteroids by 100 to 1000-fold, according to this study:
Low concentrations of theophylline markedly potentiate the antiinflammatory effects of corticosteroids in vitro, with a potentiation of 100-fold to 1,000-fold, and this may underlie the benefit of low-dose theophylline added to low or high doses of inhaled corticosteroids seen in clinical studies of patients with asthma

Do you think such a potentiation of anti-inflammatory effects might be useful in ME/CFS?


In terms of dosage, this study which added theophylline to the corticosteroids taken by asthma patients used 250 mg of theophylline daily.

(Theophylline also has a vasoconstriction effect, and is thus useful for ME/CFS patients with POTS, to reduce blood pooling in the legs on standing).


Note though that this study in horses found that theophylline does not potentiate the effects of a low dose of dexamethasone.
 
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Hip

Senior Member
Messages
17,824
Steroids most likely just suppress inflammation. There is no evidence showing that low cortisol is a cause of ME.

Yes, I don't think we can ascribe low cortisol as the cause of ME/CFS. But ME/CFS patients with reduce cortisol potentially might benefit from a low-dose hydrocortisone protocol.


Low 24-hour cycle cortisol, as well as low morning awakening cortisol responses, have been found in ME/CFS studies.

And two studies found low-dose hydrocortisone helpful for ME/CFS. Ref: 1 2

Although one study concluded:
Although hydrocortisone treatment was associated with some improvement in symptoms of CFS, the degree of adrenal suppression precludes its practical use for CFS.
 
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Bergkamp

Senior Member
Messages
145
I regularly apply hydrocortisone cream for my eczema, however if I do it a couple of days in a row and applying quite much (feeling quite good/energetic during those days) I crash (adrenal crash?) about a week later. Would watch out with this stuff
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
Low cortisol and ME/CFS are often confused with each other but are not the same thing.
As i mentioned in your other thread what your taking sounds a lot like hypopituitarism and if that is the cause of your symptoms then correcting those deficiencies would help your symptoms
 
Messages
181
Low cortisol is also correlated with autoimmunity. Cortisol is only an antagonist which e.g. downregulates the immune system after an acute stress situation (HPA axis). When the body is under long term stress (psychological or because of an infection/illnes) the HPA axis is overloaded (as is said in the blog) and eventually breaks down resulting in low cortisol, an unregulated immune system, even autoimmunity.
So in my opinion it's part of the CFS-equation, but I would not yet speculate on how important it is.
 
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thingsvarious

Senior Member
Messages
120
Low cortisol and ME/CFS are often confused with each other but are not the same thing.
As i mentioned in your other thread what your taking sounds a lot like hypopituitarism and if that is the cause of your symptoms then correcting those deficiencies would help your symptoms
I am NOT saying that all forms of CFS are due to hormone deficiencies, but many certainly are. And in many cases hormones are at least contributing to the fatigue (or could be used as a therapy).
 

thingsvarious

Senior Member
Messages
120
I am a med student in my last year. For years I have been replacing multiple of my hormones.

Thyroid was the first hormone I started to replace.

Because there is just so much misinformation around, I wrote guides about what I have learned along the way. Had I known what I know now, it would have saved me lots of time, effort, money.

Here is a guide how I´d go about replacing thyroid. Most importantly, how to do it safely. What and how to check for low cortisol, what products to choose. And important things to keep in mind.

https://thingsvarious.medium.com/thyroid-2033188cade9

Enjoy. I hope some of you find value in it .
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I have slightly elevated Tsh, but don't have the typical symptoms of hypothyroidism. I've tried T4 and NDT, and didn't notice any effects until I raised the dosage enough to feel a bit jittery. Evan that excess level didn't make me feel more energetic or anything else. I believe that my Tsh is elevated due to ME producing more picolinic acid. I don't take replacement hormones since they don't provide any noticeable benefits.

T2 (3-5 diiodothyronine) did make a significant difference. It gave me temporary remission the first few doses, and then blocked or treated an increase in ME symptoms I would otherwise have experienced. Wonderful stuff, at least for me. The effects of one dose lasted a consistent 21 days, after which my symptoms abruptly increased if I missed the next dose. Iodine worked just as well, so I assume that enough of it was being converted to T2 to do the job.
 

thingsvarious

Senior Member
Messages
120
I have slightly elevated Tsh, but don't have the typical symptoms of hypothyroidism. I've tried T4 and NDT, and didn't notice any effects until I raised the dosage enough to feel a bit jittery. Evan that excess level didn't make me feel more energetic or anything else. I believe that my Tsh is elevated due to ME producing more picolinic acid. I don't take replacement hormones since they don't provide any noticeable benefits.

T2 (3-5 diiodothyronine) did make a significant difference. It gave me temporary remission the first few doses, and then blocked or treated an increase in ME symptoms I would otherwise have experienced. Wonderful stuff, at least for me. The effects of one dose lasted a consistent 21 days, after which my symptoms abruptly increased if I missed the next dose. Iodine worked just as well, so I assume that enough of it was being converted to T2 to do the job.

Symptoms of hypothyroidism that don´t respond to thyroid treatment are often due to low cortisol
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Symptoms of hypothyroidism that don´t respond to thyroid treatment are often due to low cortisol

I don't have the typical symptoms of hypothyroidism, aside from the ones that are typical with ME. My preferred room temperature is 14C. I assume that standard medical tests include cortisol, and no one told me that mine was low. Prednisone gave me temporary remission the first two times, but then stopped having any effect, so I take that to mean that I don't have any symptoms due to low cortisol.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I am NOT saying that all forms of CFS are due to hormone deficiencies, but many certainly are. And in many cases hormones are at least contributing to the fatigue (or could be used as a therapy).

The hit and run theory lends itself to some type of hpa axis dysfunction. A number of people and myself with cfs seem to have hormones within range but always in the low end of the range. Where if most of these hormones were atleast midrange i think some could feel better for sure.

Have you done much research on using pregnenolone to increase low cortisol? Its something ive found helpful.

Cheers
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
I am NOT saying that all forms of CFS are due to hormone deficiencies, but many certainly are. And in many cases hormones are at least contributing to the fatigue (or could be used as a therapy).
If someone's "CFS" is due to low hormone levels then they were misdiagnosed with CFS and actually are suffering from their actual hormonal deficiency.
Not uncommon but that means they have a treatable condition and suffered for god knows how long with the wrong diagnosis.
As a medical student i assume you are familiar with the possibility of misdiagnosis.

Having two or more comorbid conditions is not uncommon, myself being an example, but if you have low hormone level that is not CFS. Taking the hormones i am deficient in has helped resolve those deficiencies but has not fixed the CFS.
 
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gm286

Senior Member
Messages
148
Location
Atlanta, GA
If someone's "CFS" is due to low hormone levels then they were misdiagnosed with CFS and actually are suffering from their actual hormonal deficiency.
Not uncommon but that means they have a treatable condition and suffered for god knows how long with the wrong diagnosis.
As a medical student i assume you are familiar with the possibility of misdiagnosis.

Having two or more comorbid conditions is not uncommon, myself being an example, but if you have low hormone level that is not CFS. Taking the hormones i am deficient in has helped resolve those deficiencies but has not fixed the CFS.

I take issue with this because hormone deficiencies are not necessarily "treatable." Cortisol replacement works for a while. The doctors will not have you stay on cortisol, at least not my own. Cortisol at low physiologic dose did nothing for me (4-5 mg). At 40-60mg, it brought me back to life as if I were entirely healthy again. It came with major side effects.

Hormone deficiency (if it is really my problem, and not ME/CFS), is not treatable. If the one or two rounds of cortisol were supposed to be a cure, then I suppose I did not have a hormone deficiency and did have ME/CFS.

Instead, I went right back to crash mode and the usual PEM/fatigue when I weaned off cortisol (even when I weaned off as correctly and carefully as possible).

If low cortisol is a recurrent and chronic problem in my case, then it is not treatable with low, physiologic and ongoing doses of cortisol replacement. Cortisol replacement comes with major long term side effects.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
I take issue with this because hormone deficiencies are not necessarily "treatable." Cortisol replacement works for a while. The doctors will not have you stay on cortisol, at least not my own. Cortisol at low physiologic dose did nothing for me (4-5 mg). At 40-60mg, it brought me back to life as if I were entirely healthy again. It came with major side effects.

Hormone deficiency (if it is really my problem, and not ME/CFS), is not treatable. If the one or two rounds of cortisol were supposed to be a cure, then I suppose I did not have a hormone deficiency and did have ME/CFS.

Instead, I went right back to crash mode and the usual PEM/fatigue when I weaned off cortisol (even when I weaned off as correctly and carefully as possible).

If low cortisol is a recurrent and chronic problem in my case, then it is not treatable with low, physiologic and ongoing doses of cortisol replacement. Cortisol replacement comes with major long term side effects.
If the cortisol was acting as a stimulant instead of treating low endogenous cortisol then tolerance could make sense.
People with Narcolepsy are sometimes treated with Dexedrine. It is a symptomatic treatment, not a cure, as it does nothing for the underlying Orexin deficiency. Over time increasing doses can be required because tolerance develops.
 

gm286

Senior Member
Messages
148
Location
Atlanta, GA
If the cortisol was acting as a stimulant instead of treating low endogenous cortisol then tolerance could make sense.
People with Narcolepsy are sometimes treated with Dexedrine. It is a symptomatic treatment, not a cure, as it does nothing for the underlying Orexin deficiency. Over time increasing doses can be required because tolerance develops.

Yes — a stimulant. What exactly treats low endogenous cortisol...? What treats the core problem and not the symptom?

If cortisol doesn’t, or can’t, apparently treat the problem of chronically low endogenous cortisol, what will?
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Yes, I don't think we can ascribe low cortisol as the cause of ME/CFS. But ME/CFS patients with reduce cortisol potentially might benefit from a low-dose hydrocortisone protocol.


Low 24-hour cycle cortisol, as well as low morning awakening cortisol responses, have been found in ME/CFS studies.

And two studies found low-dose hydrocortisone helpful for ME/CFS. Ref: 1 2

Although one study concluded:

Yes, from my understanding of the literature and testimonials is that low-dose cortisol replacement for ME is just a temporary bandaid that works for a while but then eventually stops working, causes a number of long-term side effects, and turns into this monster your have to wean off of.