low dose hydrocortisone without impairing immune response

[Wayne]

The research in this area is woeful and lacking and is not likely to change anytime soon. There will always be people who will insist that steroid use is dangerous and those people will likely never change their minds no matter how many people step forward with their experiences. The process is not straightforward but it is worthwhile in my opinion and I would encourage anyone with low cortisol to work through it. Being out of bed is worth it.

Well put Ema. I've been taking 20 mg/day for about 14 years now, and know my functionality would drop by at least half were I not taking it.

 

[Wayne]

the adrenal dysfunction i feel is secondary

Hi Heapsreal,

My acupuncturist has told me my kidney pulse (which the adrenals are part of), is stronger than most healthy people. From that we deduced my need for cortisol supplementation has little to do with my actual adrenal vitality, and more to do with my dysfunctional HPA system. -- Regarding this, I've recently been doing research on a technique called "nasal specific", which apparently is able to improve brain hydration and circulation, and improve overall pituitary function. I've done this technique in the past, but am getting the sense I need to do a series of them. I'm currently getting ready to start a thread on this topic.

 

[heapsreal]

Hi Heapsreal,

My acupuncturist has told me my kidney pulse (which the adrenals are part of), is stronger than most healthy people. From that we deduced my need for cortisol supplementation has little to do with my actual adrenal vitality, and more to do with my dysfunctional HPA system. -- Regarding this, I've recently been doing research on a technique called "nasal specific", which apparently is able toimprove brain hydration and circulation, and improve overall pituitary function. I've done this technique in the past, but am getting the sense I need to do a series of them. I'm currently getting ready to start a thread on this topic.

Im thinking also about cortisol rhthym, as many of us have sleep issues. i wonder if trying to fix low morning cortisol can help adjust this rhthym so that we can naturally fall asleep at night. Im think HC more for fixing timing issues, i suppose just like how melatonin is used to fix circadian probelms but doesnt seem as effective for many of us but HC might do a better job??

 

[Wayne]

Im thinking also about cortisol rhthym, as many of us have sleep issues. i wonder if trying to fix low morning cortisol can help adjust this rhthym so that we can naturally fall asleep at night. Im think HC more for fixing timing issues, i suppose just like how melatonin is used to fix circadian probelms but doesnt seem as effective for many of us but HC might do a better job??

My own low-dose hydrocortisone regimen almost completely cleared up my reversed circadian rhythm. Whereas before supplementation, I was often up till 1, 2, 3 am or later, I now get to sleep regularly around 11:00 - 12:00, and sleep in till 7:00-8:00. It's been enormously helpful in this regard. My own schedule for supplementation is 5 mg upon arising, another 5 mg an hour later, 5 mg at noon, and 5 mg late afternoon. I think the emphasis on early morning supplementation was the key to reorienting my circadian rhythm.

 

[Dreambirdie]

dreambirdie, thats good you found something that works for you, progesterone is something that can help boost low cortisol levels but is also calming, have u found progesterone has increased cortisol levels??

I have not retested cortisol for a few years. I actually do not need a test to tell me how low it still is, because I can feel it.

I think that the reason for my adrenals taking so long to repair is my poor sleep. I am currently working with some of the 23&Me results to improve methylation, which I hope will improve my ability to detoxify, which I hope will help improve my sleep.

 

[Crux]

Have u tried pregnenolone?

I am currently reading 'stop the thyroid madness' and it has a good section on adrenal dysfunction but it does mention going straight to 20mg a day, but im not sure of that i think i would rather slowly taper up. I had a bad experience when i first started pregnenolone transdermal at 50mg which was the recommended dose. it left me in like a roid rage, felt this inner anger and restlessness etc. This didnt kick in until about day 3 but prior to that i noticed some positive affects which is why i kept persuing it and tinkering with dosages etc. I ended up using just 5mg and slowly increasing it, as well as doing the same with oral dhea. Currently im now using 50mg of pregnenolone with no negative affects as well as 25mg of dhea. SO my previous experience, i would be tempted to slowly tapered HC.

Thats interesting to note that people have been having issues with over replacement with 25mg a day.

I think with cfs/me the cause of our adrenal fatigue is probably infection/immune related and is hard enough to treat as it is, the adrenal dysfunction i feel is secondary and probably only noticeable benefits from it once we have infections treated and immune system up and running. We should probably still try to improve our adrenal function as it can improve immune function but i just dont think it will be as noticeable an improvement until cfs/me stuff is mostly sorted???

Hi Heapsreal;

The people whom I've been in contact with are averaging between 20-25 mgs. daily. This is the dosage most endos are recommending, as per " The Endocrine Society." It's the people ( with diagnosed addison's), taking 30 mgs. or more daily who were having side-effects. They've written things like, " I'm looking cushy", cushingoid symptoms include swollen face, weight gain in the abdomen, skin thinning, stretch marks, increased blood sugar, etc.

Thanks, I tried pregnenolone ~6 yrs. ago and felt panicky-hyper, but, as you have written, the correct dosage is critical. For me, it could also be a conversion problem. I eat plenty of cholesterol, wish it would convert.

I agree that inflammation from infections can just trash the HPA. I had tooth infections for a long, long time. Many people with pituitary or adrenal insufficiency had some type of infection prior to the failure. It's estimated that most of the cases, 70%, are autoimmune, but I've read quite a few of people's accounts that included infections occurring that brought them to adrenal crisis/failure.

I think people with ME/CFS are very susceptible to endocrine dysfunction, and even failure. There are many folks here with low thyroid, low pituitary, and low adrenal function. Rich wrote about this too.

It's true that finding some way to rid infections, and lessen inflammation does decrease the need for cortisol. About 4 yrs. ago, I was unable to reduce HC below 30 mgs. daily. I was having some symptoms of over-replacement, and I was frightened. The endo was OK with that amount, but I was determined to taper.

I must credit the B12, etc. for helping to lower my HC dosage. It's hard for me to believe it, but I think some folks here would understand. ( Even my grouchy endo is impressed.) Most of my recent blood tests look the best ever.

It looks like you are considering taking HC for a time. ( am I clueless, or have you started it?) There are folks here who have taken it for a period, and then tapered. I see that you are being very careful and methodical with all that you are doing to heal. ( I should be so wise)

 

[Valentijn]

Hydrocortisone has been tested in ME/CFS patients at 5 and 10mg doses, and found to have a good effect. Wessely participated in this study: Cleare A, Heap E, Malhi G, Wessely S, O’Keane, V, Miell J. Low dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999;353:455-458

I also found this one easily enough: Cleare AJ OKV, Miell JP. Levels of DHEA and DHEAS and responses to CRH stimulation and hydrocortisone treatment in chronic fatigue syndrome. Psychoneuroendocrinology 2004;29:724-32

This might also be relevant if findable, though I haven't looked for it: Cleare AJ, O. K. V., Miell J. (2001). Plasma leptin in chronic fatigue syndrome and a placebo-controlled study of the effects of low-dose hydrocortisone on leptin secretion. Clin Endocrinol 55: 113-119.

 

[August59]

Although it has probably been noted in this forum. You have keep track of thyroid function because they can run hand in hand. These two have to be balanced

 

[Dfox]

Hi Y'all;
I am also a member of an Addison's forum, and the average dosage people are taking is 25mgs. daily. People who have been taking more have been having problems associated with over-replacement. The people there are still having health problems associated with infections. Cortisol has saved our lives, surely, but it doesn't take care of everything.

Heapsreal, I've only read about and seen a video about people who have been treated for some months with cortisol, and then tapered... I wish I could help with that, but if there's anyone with an experience to tell about, my guess is they would be here.

I thought I would be someone who would be able to taper after a time, but I haven't. I wasn't diagnosed in the conventional way, because I started myself on progesterone first. ( I was able to make cortisol from it though, but I was taking as much as 100 mgs. daily of progesterone cream transdermally to have normal levels with a saliva test.)
This pharmalogical dose of progesterone put me at triple the normal for a woman my age, so I decreased the dosage. ( I then began to have low cortisol symptoms, but was confused about what was happening.)

I was working with an inexperienced naturopath, but he did have me get a serum cortisol test, with DHEA. They were both low normal at that time, even though I was taking DHEA, and still taking progesterone.

I decided to start cortisol at that time, because the symptoms I'd had were consistent with addison's : daily intractable vomiting, diarrhea, weakness,very low BP,etc. ( I also had the tanning for years before I started the progesterone. The progesterone worked there too.) I went to another ND who claimed to know all about adrenal insufficiency, but, well, he didn't.

I ended up with an endocrinologist, but he suspects that I suppressed function by taking cortisol before having the proper tests. So I live with it. So, I live.

I have had one crisis, and several near crises since I began cortisol, and they were exactly like the crises I had before cortisol replacement, so I feel I did the right thing to save my life. I just didn't do it the 'proper way'.

Even though I did it backwards, and probably because I did it that way, I would still encourage testing, because this has been held against me. ( the endo is an 'old scold')

I'm no longer making cortisol, and ACTH is very low. So I'm a lifer. Of course I'd rather it be different, meh.

I also was told I would be on cortisol for only a few months, and I know Jeffries talks in his book about a maximum of two years. I have also been told by several doctors that comprehensive testing needs to be done bf starting. I had NO testing of any kind, makes me mad! I also was taking fairly large amounts of progesterone, plus all the other hormones. When I tried to wean off of hc my whole body crashed and that has been since 07. My doctor should have picked up on my lower sodium levels within weeks of starting the hc. I COMPLETELY AGREE WITH DR BORKIN IN THIS ASPECT, THAT YOU FIRST FIX THE ADRENALS AND THEN THE OTHER HORMONES.

So are there any endos or other docs anyone knows who are expert, and is Dr. Wilson's form of testing STIM test etc, accurate? Any suggestions would be appreciated.

Also, if anyone has ideas on how the hormones alter the thickening of the blood, I would be interesting in hearing.

WHICH CAME FIRST THE LOW CORTRISOL OR THE INFECTIONS?

 

[Dfox]

Have u tried pregnenolone?

I am currently reading 'stop the thyroid madness' and it has a good section on adrenal dysfunction but it does mention going straight to 20mg a day, but im not sure of that i think i would rather slowly taper up. I had a bad experience when i first started pregnenolone transdermal at 50mg which was the recommended dose. it left me in like a roid rage, felt this inner anger and restlessness etc. This didnt kick in until about day 3 but prior to that i noticed some positive affects which is why i kept persuing it and tinkering with dosages etc. I ended up using just 5mg and slowly increasing it, as well as doing the same with oral dhea. Currently im now using 50mg of pregnenolone with no negative affects as well as 25mg of dhea. SO my previous experience, i would be tempted to slowly tapered HC.

Thats interesting to note that people have been having issues with over replacement with 25mg a day.

I think with cfs/me the cause of our adrenal fatigue is probably infection/immune related and is hard enough to treat as it is, the adrenal dysfunction i feel is secondary and probably only noticeable benefits from it once we have infections treated and immune system up and running. We should probably still try to improve our adrenal function as it can improve immune function but i just dont think it will be as noticeable an improvement until cfs/me stuff is mostly sorted???

Hi, I think over-replacement was an issue with me. However, I was also on other hormones as well. I believe that the hc suppressed my adrenals as my sodium levels fell, and I was a little hyper. After a little over a year on the hc, I started to slowly wean, and I guess my adrenals did not come back and I have been struggling since?

I have been part of the stop the thyroid madness group for a long time, and have watched so many people suffer, some ending up hospitalized. I'm sure MANY people get well, but it's risky. I was never remotely stable when on hc, but perhaps it was bc I was taking a benzo also. Well, I am where I am but would certainly like to be OUT!!!

Do you have your pregnenolone compounded, and did the dhea make your hair fall out. Also, the ladies on the STM say never take dhea if you have low cortisol, as this will cause a further drop.

Thanks,
Dfox

 

[Crux]

Dfox;
Hi Dfox, I'm not sure I understand the questions, so I'll try to help as best I can.
So, Are you still taking hydrocortisone, HC? If so, you can still get an ACTH stimulation test, but you will have to switch to another corticosteroid for a time for the test to be accurate. ( dexamethasone) The ACTH stim. test is given to determine whether the adrenals respond to the pituitary hormone, ACTH, and then produces cortisol.

Other hormones should be stopped for a time too. Cortisol is made from progesterone, and estrogens slow the metabolism of cortisol, keeping it in the body longer.

If you still have low sodium when taking HC, ( HC has some mineralocorticoid properties), then aldosterone and renin activity should be measured. Sodium levels can be increased with the addition of fludrocortisone, a drug that replaces another adrenal hormone.

In Dr. Jefferies book,"Safe Uses OF Cortisol", he tended to have the opinion that patients should remain on it indefinitely, but many patients would taper off anyway, or move on.

In Dr. James L. Wilson's book, "Adrenal Fatigue....", his focus was to use lifestyle, dietary, and supplements to overcome this condition. He seemed to only recommend cortisol as a last resort, and only for 2 yrs. at the longest.

I haven't read of Dr. Borkin, but I agree that ACTH, and cortisol should be measured before Thyroid is treated. I don't think this is commonly done, but it should be. I agree that cortisol should also be measured along with DHEA, because starting DHEA in higher dosages can cause negative side-effects if cortisol is low.

I don't know about hormones and blood thickening.

People with low, and people with high cortisol can be prone to infections. In a healthy person, cortisol rises with infections, but only to the necessary degree.

I'm unable to recommend an Endocrinologist or practitioner, but maybe someone here could if you state your general location. You could also check online for good docs in your area, and read people's reviews/opinions of them.

 

[Ema]

Also, the ladies on the STM say never take dhea if you have low cortisol, as this will cause a further drop.

Thanks,
Dfox

I've never seen any studies that show this and it is not my experience or the experience of the many people I know with AI that take DHEA. Instead, replacing DHEA to appropriate levels has been shown to increase feelings of well being in studies of those with Addison's disease. If there is anyone low in cortisol, it would be that population and DHEA doesn't make them worse.

The adrenals make hundreds of hormones about which we know nothing. Replacing DHEA at least gives the body a chance to use that material to convert what might be missing. I think anyone on cortisol should be replacing DHEA as well to age and sex appropriate levels.

Ema

 

[MishMash]

There is probably a logical reason the adrenals of any ME patient are under-producing. We like to the think the human makes mistakes, but it usually is trying to protect itself from further damage. I'm not certain taking any form of cortisol is a good idea. The glands are weak anyway, and when the supplmental cortisol is removed you will be left with an even weaker adrenal system. Especially with patients like us, who are extremely sensitive, and way out of homeostasis.
I believe the horror stories more than promises of relief.

 

[Ema]

There is probably a logical reason the adrenals of any ME patient are under-producing. We like to the think the human makes mistakes, but it usually is trying to protect itself from further damage. I'm not certain taking any form of cortisol is a good idea. The glands are weak anyway, and when the supplmental cortisol is removed you will be left with an even weaker adrenal system. Especially with patients like us, who are extremely sensitive, and way out of homeostasis.
I believe the horror stories more than promises of relief.

Unless it is the pathogen(s) that have caused the endocrine dysregulation to promote their own survival over ours.

Without sufficient cortisol, no matter what the reason or cause, we are vulnerable with a weakened immune system and at risk of death. That is a real and documented risk that personally scares me much more than taking a physiological dose of a hormone I should be producing anyway.

And there is no evidence that the adrenals are irreversably harmed after taking steroids even for long periods of time. There are reports in the literature of adrenals coming back on line after twenty years of treatment.

 

[heapsreal]

There is probably a logical reason the adrenals of any ME patient are under-producing. We like to the think the human makes mistakes, but it usually is trying to protect itself from further damage. I'm not certain taking any form of cortisol is a good idea. The glands are weak anyway, and when the supplmental cortisol is removed you will be left with an even weaker adrenal system. Especially with patients like us, who are extremely sensitive, and way out of homeostasis.
I believe the horror stories more than promises of relief.

your not a 1/2 glass empty kinda guy but a 3/4 empty kinda guy.

 

[lansbergen]

In the animals I noticed cortico makes it worse.

Now I found:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094732/

α7nAchRs are likely to affect HPA response due to their location in CNS circuits that are important for cortisol release. α7nAchRs are highly expressed in the hippocampal subiculum and the suprachiasmatic nucleus (SCN) (Breese et al., 1997). Both of these regions send projections to the periventricular nucleus (PVN), the site of corticotrophin-releasing hormone (CRH) secretion. Activation of α7nAchRs modulates pathways within SCN and subiculum that inhibit their normal negative regulatory output to the PVN, permitting release of CRH [9, 25–29]. Thus in individuals with fewer α7nAchRs, inhibitory output to the PVN would increase, limiting the release of CRH and of cortisol. High corticosteroid levels decrease the number of functional α7nAchRs in the hippocampus and hypothalamus [30], suggesting that a feedback mechanism for this system exists.

 

[heapsreal]

In the animals I noticed cortico makes it worse.

Now I found:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094732/

α7nAchRs are likely to affect HPA response due to their location in CNS circuits that are important for cortisol release. α7nAchRs are highly expressed in the hippocampal subiculum and the suprachiasmatic nucleus (SCN) (Breese et al., 1997). Both of these regions send projections to the periventricular nucleus (PVN), the site of corticotrophin-releasing hormone (CRH) secretion. Activation of α7nAchRs modulates pathways within SCN and subiculum that inhibit their normal negative regulatory output to the PVN, permitting release of CRH [9, 25–29]. Thus in individuals with fewer α7nAchRs, inhibitory output to the PVN would increase, limiting the release of CRH and of cortisol. High corticosteroid levels decrease the number of functional α7nAchRs in the hippocampus and hypothalamus [30], suggesting that a feedback mechanism for this system exists.

Its saying high doses of cortisol suggests a feed back mechanisms involved. SO it comes back to what is a high dose?
Also HC is given to people already low in cortisol and enough is given to keep them within the high healthy range with physiological doses. So i read it as saying if low doses are used, then this feedback mechanism wont shot down adrenal function.

We hear alot of people concerned about using cortisol but with no personal experience, this could be from the campaign that all steriods are bad and really dont tell us alot.

We also hear a few how say that low dose HC has been of great help, not many from those who have had issues using HC, i hope this group arent scared to post because i would like to see some more negative experiences to see exactly what they were doing etc so we can learn from them and to balance out the positive experiences.

It would be good just have a poll of who has had good experience with HC and who has had bad experiences with HC.
Another is, of those responders who used hc for a short time to recover adrenal function and were able to taper off and maintain most of this improvement and then those who crash if they stop HC so stay on HC for the long hall?

I think we need more numbers to ease people minds and used in cfs/me as we know many of us have strange reaction to meds anyway.

Without joking here, i think lance armstrongs treatments could really improve many aspects of cfs/me??

 

[lansbergen]

Its saying high doses of cortisol suggests a feed back mechanisms involved. SO it comes back to what is a high dose?

What if the a7AchRs malfuncion from the infection?

 

[maryb]

Heaps I was prescribed HC by a thyroid specialist here in the UK, I didn't take it because I was so frightened of the possible effects, was I right? who knows. I'm certainly no better, in fact worse, I too would be interested to hear of other's experiences with HC.

 

[MishMash]

your not a 1/2 glass empty kinda guy but a 3/4 empty kinda guy.

Taking HC for sub-clinical illnesses is a dead end idea. So yes, on that case, i'm definitely a 90% empty guy. But feel free to take all the chemicals you wish.