Could I use hydrocortisone test the importance of cortisol in my symptoms?

[23 years still fighting]

I'm trying to work out if cortisol production is a core part of my health issues. I'm especially wondering if the logic works to use hydrocortisone temporarily to see how much of my symptoms are resolved when cortisol is increased? I'm not keen on using it longer term and potentially causing further issues, but was wondering if I can simply take it and feel improvements on the day to make a clear connection? Context below:

I had a few cortisol tests last year. Blood levels came up low sometimes and normal at others. Saliva showed it as low until the evening when it's normal (and when I often feel better). I know levels range a lot so testing is problematic. A few things are making me think this could be a key for me:

1. I had a synacthen (synthetic ACTH) test, and felt wonderful after the injection - calm and content, and physically strong. This tells me my adrenals work fine (so any issues are further upstream), but also that the increase in cortisol really helped me.
2. Ever since I had a covid jab four years ago, I often get very dizzy and have cognitive issues. But it doesn't happen every day, and follows a specific pattern. I'm OK when I wake, and then it kicks in a few hours later. I've recently noticed that when I'm in a CFS crash, I don't get the neuroinflammation issues. When I'm in a crash, I tend to wake early with a banging heart. So I'm wondering if I have increased cortisol levels then and it's fixing the day's potential neuroinflammation?
3. My sleep was messed up last year and I was able to fix it using adrenal cortex, Biocare's adreno complex and phosphatidylserine at night, so it's clearly at least part of the picture, but I seem to have maxed out the benefits I can get from that route.

I'm especially thinking of gathering information at the moment (although it would be great to have a medication that could make me feel better on important days), i.e. what can all this tell me about why I'm so ill and how I might fix it?

Any thoughts welcome, thanks

 

[kushami]

Not quite answering your question, but those sound like orthostatic intolerance/autonomic symptoms, which can be treated with less-problematic interventions or medications than steroids (although no guarantees of treatment being effective for everyone).

 

[Wonkmonk]

I once had similar thoughts as you had and took hydrocortisone for about two weeks to see what happens. For me, it was basically nothing, no change at all. I started with lower doses (I think 10mg or so) just in the morning, because I was told morning doses reduce the risk of adrenal suppression which can lead to irreversible adrenal atrophy. When these low doses once a day did nothing, I took more and also I think two or three times a day, but just for a few days. I do not remember exactly anymore and have no records of it, but I think I also tried 30 mg (which is a relatively high dose and is normally for people with Addison's Syndrome) split in two or three doses for two or three days. In my recollection, none of it never had any discernible effect, so I stopped it and never tried it again because it just didn't change anything.

From what you've said, you are already well aware of the risk of adrenal suppression, which is probably the main concern, and it's a very serious one. Regarding the tests (saliva and blood), you also mentioned that they aren't always reliable. To that, I would add that it's also important to look at how the cortisol curve usually looks like, which is it shoots up in the morning, has a very short peak/plateau and then rapidly declines very quickly and goes down until the next rise the next morning.

https://www.researchgate.net/figure...e-from-Lovallo-and-Thomas-2000_fig1_278686451

This means that basically every test you do in the morning is always lower than the peak. It's very unlikely that you take your sample right when your levels are peaking. It's impossible to know by how much the results are below peak level, but it's worth considering when interpreting the results that your measurement is always "too low" (if your cortisol curve looks normally). If it's below the norm, just a few minutes later, you might have gotten a much higher reading. That's why these blood tests must be interpreted cautiously.

But on the other hand, the fact that your ACTH stimulation test made you feel better points to some involvement of the cortisol axis and that's possibly worth exploring further though it should also be considered that this might have been a placebo effect and not a causal one that can be replicated with hydrocortisone supplementation.

 

[23 years still fighting]

Not quite answering your question, but those sound like orthostatic intolerance/autonomic symptoms, which can be treated with less-problematic interventions or medications than steroids (although no guarantees of treatment being effective for everyone).

Thanks, I have explored that route but the symptoms look much closer to neuroinflammation, which is a common symptom in post covid vaccine syndrome. I'm not so much looking to steroids as a treatment but as an investigation, based on the insight that when my cortisol production is up I seem to be much better. That would help me know where to target my energy.

 

[23 years still fighting]

I once had similar thoughts as you had and took hydrocortisone for about two weeks to see what happens. For me, it was basically nothing, no change at all. I started with lower doses (I think 10mg or so) just in the morning, because I was told morning doses reduce the risk of adrenal suppression which can lead to irreversible adrenal atrophy. When these low doses once a day did nothing, I took more and also I think two or three times a day, but just for a few days. I do not remember exactly anymore and have no records of it, but I think I also tried 30 mg (which is a relatively high dose and is normally for people with Addison's Syndrome) split in two or three doses for two or three days. In my recollection, none of it never had any discernible effect, so I stopped it and never tried it again because it just didn't change anything.

From what you've said, you are already well aware of the risk of adrenal suppression, which is probably the main concern, and it's a very serious one. Regarding the tests (saliva and blood), you also mentioned that they aren't always reliable. To that, I would add that it's also important to look at how the cortisol curve usually looks like, which is it shoots up in the morning, has a very short peak/plateau and then rapidly declines very quickly and goes down until the next rise the next morning.

View attachment 55413
https://www.researchgate.net/figure...e-from-Lovallo-and-Thomas-2000_fig1_278686451

This means that basically every test you do in the morning is always lower than the peak. It's very unlikely that you take your sample right when your levels are peaking. It's impossible to know by how much the results are below peak level, but it's worth considering when interpreting the results that your measurement is always "too low" (if your cortisol curve looks normally). If it's below the norm, just a few minutes later, you might have gotten a much higher reading. That's why these blood tests must be interpreted cautiously.

But on the other hand, the fact that your ACTH stimulation test made you feel better points to some involvement of the cortisol axis and that's possibly worth exploring further though it should also be considered that this might have been a placebo effect and not a causal one that can be replicated with hydrocortisone supplementation.

Thanks for sharing your experience, that's really helpful. I'd basically like to replicate your test - if it doesn't make a difference then this isn't the route to focus on but if it does then I've learned something important. I was expecting to feel really bad after the ACTH test and had booked the day off work, so I don't think that one was placebo.

I agree on the blood tests. The saliva test did show an overall pattern of cortisol production having roughly the right pattern but overall levels being too low until the evening, which correlates with how I tend to feel.

 

[Wonkmonk]

Thanks for sharing your experience, that's really helpful. I'd basically like to replicate your test

I wish you the best with that trial. I am sorry I cannot provide any more insight because I stopped taking it so quickly, so all I know and experienced has been stated above. The only thing I would want to stress - and I think you are already well aware of this - is the risk of adrenal suppression and atrophy, which one has to be really careful to avoid.

I hope it helps you and you can find a way to use it safely that it is helpful to you.

 

[Wayne]

I'm especially thinking of gathering information at the moment (although it would be great to have a medication that could make me feel better on important days), i.e. what can all this tell me about why I'm so ill and how I might fix it? -- Any thoughts welcome, thanks

Hi @23 years still fighting -- I did extensive research on adrenal insufficiency over 20 years ago now, relying primarily on a book written by William Jeffries, M.D. He made a career out of researching low-dose hydrocortisone supplementation, and was able to show how it improved a wide variety of health issues.

I did a blurb on my understanding of this topic a few years ago on another forum, and am posting it below. It touches on some of the things you're asking about, and expounds a bit on other areas. Let me know if you have any questions. I still take 20-25 mg/day of Cortef after all these years, and am not aware of any adverse effects.

Here's a quick review of some of my baseline understanding:

The body normally makes approximately 40 mg of cortisol/day. Most steroid medications such as Prednisone are altered and revved up versions of the body's own cortisol molecular structure. Every mg. of those medications is roughly equivalent to about 4x the body's natural cortisol. So if you're given a dose of lets say 50 mg. prednisone, that would be equivalent to 200 mg. of natural cortisol. That's a lot, roughly 5x more than your body produces in a day.​

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If you continue taking that for too long, the body's adrenal glands will quit producing cortisol altogether. However, if you take less than 40 mg., (called low-dose hydrocortisone therapy), the adrenal glands will not shut down, but will reduce cortisol output depending on the needs of the body. I myself have been doing low-dose hydrocortisone (10-20 mg/day) for many years, with no problems.​

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The body normally responds to any kind of injury by increasing its normal levels of cortisol to facilitate the healing process. My best guess is it's rarely the equivalent of 200 mg, but I could be wrong. The point I'm getting to however, is that I believe it's safer to do relatively low-dose bioidentical cortisol than to do the artificially created revved up versions. BTW, each of those steroidal medications has a different molecular structure, not because they're superior, but because it allows pharma companies to have their own particular patent.​

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How much bioidentical cortisol to take? Based on my experiences, if I feel my body needs some extra oomph, I will increase my normal low-dose hydrocortisone. I've experimented a lot, and can easily take a total of 30-40 mg with good results. On a few occasions, I've taken 70-80 mg. for 3-5 days, again with good results (and no ill effects). It's a fair amount, but it appears to be less than normal prednisone prescriptions, and almost assuredly much safer. It also feels like it's in line with what the body might do naturally to help a healing process.​

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I have my own prescription of hydrocortisone (called Cortef). However, it's a relatively benign "drug" that can be purchased from online pharmacies without a prescription (at least it used to be available). If I was in a position where I was seriously contemplating temporarily increasing my cortisol levels, I would opt for the bioidentical cortisol over the souped up pharmaceutical versions. It would give me a lot more control, and the risks of side effects would be much less.​

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One indication that I've reached my limit on how much to take is when my face starts to look flushed. Once I've reached that point, I always stop taking any more for the day. I rarely do more than 25 mg in a single day, and it is extremely rare that I take over 50 mg. But I know that if I absolutely positively have to get through a day of intense activity, I can do it. Taking this much for a few days is not going to be problematic. Only if it starts running into weeks and more does it cause significant imbalances.​

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You might find the following post interesting. In the lengthy post, Dr. Thomas Levy describes how he discovered while recovering from COVID that he had adrenal insufficiency, and how supplementation did wonders for his health. To the point where he felt healthier after COVID than he had for many years prior to getting COVID.

Dr. Thomas Levy -- How COVID Helped Me Regain Good Health​