Cortisol and corticoids - a question

[xks201]

Start 5 mg every 3 to 5 hours...yall probably don't need 10 at once. If you have low cortisol on any kind of test you need cortisol most likely. Lol. And cortisol isn't something you can go without if you are lacking. It keeps blood sugar up. And it takes a week on it or so to stabalize the feelings just like a lot of things.

 

[JaimeS]

So just take half the dose that made me unable to stand upright for 24 hours, and keep taking it every few hours until my cortisol 'normalizes'!

If you have low cortisol on any kind of test you need cortisol most likely. Lol.

No. This is oversimplifying the problem. My cortisol levels are normal until I'm put under stress. Then they're low. If I were to simply take cortisol every day, that would be elevating my cortisol levels above normal the majority of the time, which comes with its own set of problems (Cushing-type symptoms). More is not necessarily better, especially where hormones are involved. Even my clueless endo suggested "just taking the cortisol when you feel especially stressed or are ill" but the idea of having those symptoms when I was already feeling awful was truly daunting.

And cortisol isn't something you can go without if you are lacking.

Again - it's not low all the time. Just when my body is under significant stress. The rest of the time, it's normal.

The body isn't like a granary with wheat and rye and barley saved for winter, and if one barrel gets low, you just go to another store to purchase some more to top them off. This mechanistic view (x is missing, add x) is not conducive to good health in more complicated issues.

Hypothesis:

1) I take hydrocortisone.
2) My cortisol levels rise far above normal.
3) This sends a message to the pituitary: 'stop producing ACTH!'
4) I make little to no ACTH in the first place (this and other pituitary hormones are what's really out of whack.)
5) The pituitary stops producing any ACTH at all. After all, there's way too much cortisol!
6) Cortisol begins to drop like a stone.
7) This is a stressor! The body waves all its red flags (very technical, I know)
8) Cortisol drops even lower because of stressor.
9) Pituitary belatedly realizes it should probably be doing something about this and kicks back on, but it doesn't produce a lot of ACTH at once.
10) Slowwww gain of endogenous cortisol again

...which is why it takes a few days to recover. Just a guess.

 

[xks201]

No offense but you have no proof of your ACTH levels or cortisol levels dipping up and down in response to stress. I see a lot of people claiming they know entirely what their hormone system is doing based on a guess. The idea of stress dosing it is probably a good idea. I don't know why cortisol would make you bed ridden. That makes no sense.

Perhaps trying a smaller dose or trying it as needed under stress is what you need if you believe in your own theory. I hate endos as much as anyone else. I didn't say your endogenous cortisol will ever normalize that your body makes. But it does make sense that perhaps trying a smaller dose is worth a shot. I have been taking cortisol and just about every other hormone for over 5 years.

Sometimes low thyroid can cause low cortisol and vice versa. Taking a free t3 and reverse t3 blood test and comparing that ratio might also be worth while if for some reason you do not respond positively to any dose or frequency of cortisol replacement. People on this forum have the tendency to give up on something after one or two doses. Hormone systems are complex because receptors upregulate and downregulate so sometimes it takes a while for homeostasis to kick in and receptors to regulate themselves properly to a NORMAL amount of hormones being restored. That's why I say start slow. I'm not telling you to take so much to make you feel like crap. Everyone is different as far as cortisol and thyroid requirements. Genetic binding globulin levels and all kinds of genes influence how much you would need so some hormone replacement therapy IS EXPERIMENTAL SCIENCE. To give up now in the face of abnormal cortisol labs without at least trying a lower dose in my mind is not productive. I have been on all of this crap for years and most of the time can't tell if something is high or low without labs at that moment.

You have the same franticness I had when I was not treated for low cortisol. Blood sugar constantly dropping. The blood sugar dropping and high adrenaline in response from low cortisol is real and anyone would feel that way with low cortisol. World ending feeling. Everyone out to get you. lol I know that all too well. Don't give up without skinning the cat a different way at least.

People with low cortisol can't handle any stress period(well depending on how low it is). You can't even handle the stress of me suggesting trying half a dose. lol Worth a shot.

 

[JaimeS]

No offense but you have no proof of your ACTH levels or cortisol levels dipping up and down in response to stress. I see a lot of people claiming they know entirely what their hormone system is doing based on a guess

Nope - based on an ITT test, done in Mayo Clinic with two techs at my side the whole time. Then an endo from Mayo helped me interpret the results. Though my cortisol starts off normal, it never rises in response to stress, decreasing the entire time. My GH gives a little sputter up, but it's very little and then it begins to sink below the initial value. That is my proof of the cortisol dipping. My ACTH has been confirmed low with repetitive blood testing.

The idea of stress dosing it is probably a good idea.

Based on....?

I don't know why cortisol would make you bed ridden. That makes no sense.

Because...?

Perhaps trying a smaller dose or trying it as needed under stress is what you need if you believe in your own theory.

...my endocrinologist's theory - and mine - based off of clinical data. Your theory is based off of your experience, which is fine for you - but it won't work for me.


-J

 

[xks201]

K so an ACTH stim test is different than a growth hormone stim test which you refer to above with the insulin stimulation test. That is for growth hormone. ACTH is not always high. It pulses just like growth hormone does. So you would have to check ACTH periodically throughout the day to get an idea of if that gets low or not because most of the time it is gonna be low to nonexistent in normal people as it pulses.

Just because your GH response was deficient is not proof of anything to do with your cortisol. I think you are mixing up the growth hormone stimulation/insulin tolerance test with the ACTH stim test. Two totally different tests that do not tell anything about the other. Your endocrinologist's theory is that you should try stress dosing according to you. Apparently you disagreed with that just like you disagreed with me telling you to try a smaller dose which is what he will tell you if you come back complaining to him that your dose did that.

I am a medical student and have gone through this for 5 years. That is 5 years more than most any endo has experienced this. But ironically I'm not in conflict with your endo's opinion right now.

I'm a very experienced person on hormones by virtue of being on all of them except insulin.

 

[bertiedog]

Nope - based on an ITT test, done in Mayo Clinic with two techs at my side the whole time. Then an endo from Mayo helped me interpret the results. Though my cortisol starts off normal, it never rises in response to stress, decreasing the entire time. My GH gives a little sputter up, but it's very little and then it begins to sink below the initial value. That is my proof of the cortisol dipping. My ACTH has been confirmed low with repetitive blood testing.

I haven't had time to read the whole of this thread but I would have thought that if the above statement is correct then I think I was similar, way back in 2002. Everything I have read and been told is that you don't have any adrenal reserves left. They are worn out and cannot respond to stress in a normal way. Therefore the only thing to do is to take it in tablet form, either h/c or Prednisolone, that is if you have been unable to support your adrenals by natural means first. Stuff like Siberian Ginseng or maybe cortex only glandulars like Thorne Cortex caps can seem to get the adrenals working for some people but unfortunately I wasn't one of them and needed the real thing.

Because of my own situation I have been on 6mg Prednisolone and often a tiny bit of h/c in the afternoon since 2002 and it has been a great success. I was on h/c at first but it gave me false highs and lows whereas Pred doesn't do this, it feels completely natural. I also found it difficult at first to find the right dose that worked for me and it was 12.5 mg h/c first thing in the morning to really notice any difference. Now I take 3.5 mg Pred early am followed by 2mg Pred lunchtime.

I am now able to do around 8500 steps on average a day (with herbal treatment for Lyme disease since last September).

Pam

 

[xks201]

The feeling like everything is sinking can indeed be hypothyrodiism which cortisol replacement can further expose. Any endo that is evaluating a patient for adrenal insufficiency and doesn't test the Thyroid before treatment isn't worth a damn in my opinion. T3 to free t3 ratio is the best indicator of thyroid status from the scientific literature I have read and from personal experience.. it's like asking someone to describe a mushroom trip that hasn't taken mushrooms. I haven't taken mushrooms but I would definitely trust someone who has taken them to give me a better depiction of the trip rather than a mushroom ecologist or something. It's one thing if we are talking about technically specific drugs but hormones are definitely not that due to extreme differences in responses, Gene variations influencing response, and existing hormone function as the original poster is now witnessing. My only message is not to entirely give up on hormones if there is a serious deficiency. Hormone therapy is more an art than anything once some principles are grasped. And this isn't all directed at her. The honeymoon with hormone therapy will show anyone in no time that the emperor aka doctor has no clothes when it comes to this because It is so individualized and half assume they know better than the patient. One endo I know for example refuses to prescribe more than 20mg hydrocortisone to anyone. People have malabsorption issues for example that require more. When sick one needs more. If you have serious cortisol deficiency and get sick and are using up cortisol fast you can die from the immune response alone. Yet that endo thinks that no one needs over 20. I know people that at minimum need 60.

 

[JaimeS]

Therefore the only thing to do is to take it in tablet form, either h/c or Prednisolone, that is if you have been unable to support your adrenals by natural means first.

It seems from our limited sample that about 40% of the people here who take corticoids have trouble with them. Perhaps it's not the route for everyone.

-J

 

[JaimeS]

Not tagging so as not to poke someone already upset, but I do know the difference between an ACTH stim test and an ITT test. I've had the former twice, and the latter once. Mentioning the results of two tests in the same post doesn't mean you believe one to be the other.

-J

 

[JaimeS]

For those who are interested, the IOM report summary mentions poor reactions to corticoids as being characteristic in our patient group:

The review notes that trials of drug treatments typically are of fair or poor quality, that no drug treatments are of proven value, and that some treatments—particularly corticosteroids and galantamine—cause important adverse events.

I checked out the study to which they are referring, and it discusses how in thirty-some-odd percent of ME patients, the effect of glucocorticoids was suppressive. That just about matches our reported percentages of adverse reaction.

Perhaps these same people would have benefited from them, if the dose were right. The dose was 13 mg/m2 of body surface area every morning and 3 mg/m2 every afternoon. I have no idea what my bloody body surface area is, though.

[Edit: oops! This wasn't the IOM report, but a paper by Komaroff: "Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Real Illness".]

-J

 

[Chriswolf]

Years later my endo did the standard cortisol testing and decreed I don't have a problem. I'm not sure his interpretation was anything but the most conservative, "You ain't gonna die so go away" one, but apparently I don't have a major issue that would justify cortisol treatment.

That's more or less sums up my interaction with the endocrinologist I saw.

I would personally love to get my hands on some low dose cortef, even though I know there's always a rubber band effect with regard to suppression. I have always felt better when I was taking corticosteroids, when I've been off them for a while, I crave them when my entire body feels dehydrated and stiff, it's magic as far as short term "get stuff done" stop-gap treatment.

 

[JaimeS]

That's more or less sums up my interaction with the endocrinologist I saw.

I would personally love to get my hands on some low dose cortef, even though I know there's always a rubber band effect with regard to suppression. I have always felt better when I was taking corticosteroids, when I've been off them for a while, I crave them when my entire body feels dehydrated and stiff, it's magic as far as short term "get stuff done" stop-gap treatment.

I wish we could share! I still have that 10-mg of hydrocortisone, and I would kind of like it to be a country mile away from me...

Sadly, illegal.

-J

 

[JaimeS]

A recap because I found additional information on this, but it's been awhile.

I found some evidence that the reaction to cortisol (and serotonin) may be due in part to the response of a systemic infection (or several).

When I took oral hydrocortisone (10mg), I felt a rushing sensation that yanked downwards, like I was a bathtub and my stopper had just been pulled.

Put less colorfully, I felt a very fast-approaching episode of more severe POTS than I'd ever had before. This was followed by two days of barely being able to stay upright or complete sentences or move, much - like PEM.

Cortisol is apparently an immunosuppressant. Therefore, when you take a dose, if the primary reason for your ME is infective, that's going to be a problem. I additionally hypothesize (and it really is a hypothesis) that if the primary reason for your ME is autoimmune, it's going to feel awesome. We may even be looking at a new-ME vs old-ME kind of thing - is the immune system overhyped, so that suppressing action feels good - or exhausted, so that further suppression feels awful?

that's like my serotonin. It's naturally quite low (which is apparently just how my body likes it)! If I do anything - and I mean anything - that affects serotonin, I get hyperstimulated and then crash. It's above and beyond the wired-but-tired thing... I get seizures in my larger muscles and twice lost the feeling on one side of my face.

This sounds like a nervous system infection throwing a party to me.

Regarding serotonin, apparently a few of the more common Lyme co-infections 'like' it. I'm still searching around for my source, but I read something recently that said that one of my co-infections really likes 5-HTP.

To characterize one: I keep feeling as though my oxygen is low, as though there isn't enough oxygen in the air. "Air hunger" feels accurate. I take bigger and deeper breaths (not faster - it's not hyperventilation in that sense). However, the sensation that I'm not actually processing oxygen only grows stronger. During my worst episode, I began to lose feeling in my arms and legs and could not sit up.

* I had an episode while hooked up to an oxygen monitor, once. My oxygen levels dropped to 78%. It was a mild episode.
* It's worse premenstrually and menstrually.
* It's worse on hot days.
* It's worse on wet days, and right before a storm.
* It's worse in places with poor air quality (for some reason, home improvement stores with their enormously tall ceilings are absolute death traps for me. I feel ridiculous even writing that down, but when the symptoms come on that fast, and six times in a row in the same location, ignoring it is just plain foolish.)

I had relief using roxithromycin. I stopped it for a few days and can't get back to where I was. But this is why I think mine is infection.

Apparently, this is characteristic of Chlamydia pneuomniae. And yes, it particularly likes it when it's hot and wet out. One's immune system is also suppressed premenstrually. It's that last ditch babymaking effort that goes something like, "hey, maybe the body's just been killing off all that sperm? Let's give it one last go, shall we?"

Re: why the breathing episode is coming on, none of what we're talking about is mutually exclusive. If it's respiratory acidosis (or lactic acidosis or metabolic acidosis), then that could be because of an infection. See the poll here, and subsequent posts. Some infectious organisms produce lactic and other acids as byproduct as they live their little lives (or die off).

Being worse during a certain season doesn't support the absence of an infectious organism, either. There are infectious organisms that tend to reproduce / become worse at the time of year of the initial insult, e.g. malaria.

CP likes the summer. It's always when I feel worst.

I'd love some feedback on the theory, if anyone is still looking at this thread! When you tried cortisol, did you feel you were in the early (hyperexcitatory) or late (suppressive) stage? Have you been diagnosed with Lyme, CP, or Bartonella? And please do say what your reaction to corticoids was if you reply.

Curious!

-J

 

[slysaint]

Corticosteroids are not the same as cortisol which is naturally produced by the body. They suppress your immune system, cause hpa axis suppression, can cause cataracts , kidney damage and many other health problems. They are a quick temporary fix for some symptoms but in the long run can make them worse.
There are support forums just like this one for people suffering the after effects of oral corticosteroids, particularly prednisolone, and ITSAN is trying to raise awareness of the dangers of topical steroid addiction and the long and painful road of withdrawal.
Cortisol tests have to be done over a 24 hour period for accurate results as the body produces it at different rates at different times of the day. If diagnosed with Addison's this would be done on a regular basis and low doseage hydrocortisone is the only treatment.
They are powerful drugs, not just hormones and only mask the problem, not cure it.

 

[JaimeS]

Corticosteroids are not the same as cortisol which is naturally produced by the body.

When I got the ACTH stimulation test, a spike in my body's own, natural cortisol provoked the same reaction. I ended up in the ER, PEM'd and dizzy. Oxygen levels dropped too, though I'm not sure that's actually directly related.

When you say that hydrocortisone is not the same as cortisol, what do you mean? Chemically, they are the same molecule. If you mean that hydrocortisone is administered all at once and that processing it rapidly is a stressor on the body, I can agree. However, my body responds similarly to exogenous cortisol as it does to my ACTH provoking me to produce more, endogenously.

Regarding natural, endogenous cortisol's effect on the immune system:

One of the chief hormones released under stressful conditions is cortisol. Released by the kidneys, it helps mobilize the body into a “fight-or-flight” mode by causing increased blood pressure, heart rate, and sugar breakdown. Think of the last time you were in a stressful or nervous situation; can you remember your heart racing? Another interesting property of cortisol is that it acts as an anti-inflammatory signal, meaning that it acts as an “off switch” for your immune system, helping prevent the inflammatory response described earlier.

From STRESS, CORTISOL, AND THE IMMUNE SYSTEM: WHAT MAKES US GET SICK?

Cortisol’s weakening effects on the immune response have also been well documented. T-lymphocyte cells are an essential component of cell-mediated immunity. T-cells respond to cytokine molecules called interleukins via a signaling pathway. Cortisol blocks T-cells from proliferating by preventing some T-cells from recognizing interleukin signals. It also stifles inflammation due to inhibition of histamine secretion (13). Cortisol’s ability to prevent the promulgation of the immune response can render individuals suffering from chronic stress highly vulnerable to infection.

From The Physiology of Stress: Cortisol and the Hypothalamic-Pituitary-Adrenal Axis

I guess in the end, it doesn't matter why I react to cortisol and serotonin so much as I understand that I do. Still, I'm curious as to why. It is in my nature.

-J

 

[slysaint]

Synthetic corticosteroids are not used the same way by the body, this might be of interest:
was.adrenalfatiguerecovery.com/cortisol-supplement.html

 

[JaimeS]

@slysaint -

I agree that overdosing can cause negative feedback as this article suggests, but that's a matter of dosage. When they say that "bioidentical" hormones are better, I'm stuck staring at the two identical chemical structures of cortisol and hydrocortisone and wondering where this information that one is 'better' than the other is coming from. I'd need to hear a little bit more information before I'd agree.

It makes me wary, too, that the site to which you linked me takes money from advertisers for products related to adrenal fatigue:

Please note that while I do receive commissions from some of the things promoted on this site, I recommend them wholeheartedly because I feel they would be of benefit to you.

Synthetic hormones are not utilized by your body in exactly the same way as bio identical hormones are

Nothing to back it up, just stated like it should be obvious. When hydrocortisone and cortisol are chemically identical, I need more proof before agreeing such a statement makes sense!

There are some hormones for which the synthetics are not the same exact molecule as the bioidentical hormones. That includes progesterone and estrogen HRT, and the effects are very different because the bioidentical chemical and the pill's chemical differ significantly in their chemical structures.

Finally, prednisolone is not actually identical to cortisol/hydrocortisone: it has a double-bond in its first carbon ring that they do not. So I'd buy that it doesn't act in precisely the same manner. I would also agree that injecting hydrocortisone or swallowing a pill does not produce the same effect that generating one's own cortisol would, in a steadier and more gradual manner. However, accepting that two chemicals with identical structures that we have chosen to give one name endogenously and another name exogenously act in a different way on the body? I'd need to see evidence that digestion changes hydrocortisone's chemical structure, maybe.

Again, kind of immaterial if I'm not going to be taking any anytime soon, but...

-J

 

[JaimeS]

More info, I think we've finally got this one.

At the IACFS/ME Conference awhile back, some researchers were discussing cortisol as a neurotoxin -- just in GWI patients. They said they were working on determining if the same were true in ME/CFS.

But we can make it more general. In the periphery, glucocorticoids are anti-inflammatory.

In the CNS, they're inflammatory:

https://www.ncbi.nlm.nih.gov/pubmed/12562515/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691990/

Please read these for yourselves; this is not a 'fringe' theory, though it is relatively new (I see a burst of research on this around 2003, but recent articles are still saying it.) I chose the two articles that I thought made the point most clearly; there are many more.

Lots of my speculation in this thread, which I will leave intact so that others can see how winding a road it is, sometimes. But CNS inflammation as a theory makes a great deal of sense.

 

[*GG*]

My Dr recently put me back on Fluodrocortisone at 1/2 of a 0.1 mg pill. Wonder how this works into it all?

Need to remember to mention this at my next Dr appt, so they can evaluate if my blood pressure meds need to be adjusted?

GG

 

[JaimeS]

My Dr recently put me back on Fluodrocortisone at 1/2 of a 0.1 mg pill. Wonder how this works into it all?

Need to remember to mention this at my next Dr appt, so they can evaluate if my blood pressure meds need to be adjusted?

GG

Our survey here is small, but it does say that 14 people benefited at least to some degree, while 11 people saw crappy side-effects. Perhaps it's the case that it's more 50-50 if we saw more data; perhaps it's skewed quite a bit more in one direction or the other. I'm hoping by adding to this thread, we'll get more responses...

[Edit: I'm not sure what happened re: the numbers... I've fixed them, they were quite considerably off, before...]

If I had to guess, we have some here with HPA axis connectivity issues but not neuroinflammation per se; and a subset that does have frank neuroinflammation.

I would like my own research team and $5 million to figure it out, please.

-J