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low dose hydrocortisone without impairing immune response

heapsreal

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This study i found shows low dose hydrocortisone reduces inflammatory cytokines TNF-α, IL-6, IL-8, and IL-1β with out impairing neutrophil function which killed Staphylococcus aureus or Escherichia coli .
http://www.ncbi.nlm.nih.gov/pubmed/21430601

Also in the book 'the safe use of cortisol' it shows that viral infection lower hpa axis function and by treating this with low dose (physiological doses)hydrocortisone improves immune function by increasing igm and igg immunoglobulins. Pharmocological doses were found to have immune supression affects but the opposite was found in humans with physiological doses. It also mentions in the book that many infections lower hpa axis function and the worse the infection the greater the function is lowered.

After reading this book it seems that balance is the key as well as using more natural hormones like hydrocortisone rather then synthetic prednisones etc. Maybe we have been brain washed into thinking cortisol therapy suppresses the immune system and cause osteoporosis, which it does in high doses but in replacement doses it improves immune function.

Dr jefferies who wrote 'the safe use of cortisol' doesnt come across as a quack. It sounds like he was there when cortisol treatments first started way back when and has over 40 years experience using this type of treatment for a variety of condition, he as also worked for a number of high profile institutions. It does seem to match up alot with cfs/me with our immune/infection as well as autoimmune tendencies and adrenal dysfunction??
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Great info. This looks like a one time treatment tho. Are there studies with appropriate labs on long term low dose
cortisol treatments ?

I'm interested in learning more because in the last 2 years, despite my up regulated immune system,
Dx via high viral titers (not active), I've gotten severe cases of h pylori and now pylenephritis (sp?).
Basically bad infection in kidneys and ureters.

I've heard that my leukocytes get incredibly high in my urine when I am actively passing kidney stones. Typically once the stone has
passed I feel better in only a few hours. So I'm assuming that my inflamation markers are down. I've never thought
about re-testing my leukocytes right after passing a stone.

So what part of my immune system is in high gear ? Why can't it control these bacteria ?

I haven't caught a virus in many years. Kow.. Tc .. X

Ps. I've seen these markers mentioned in mast cell info but I'm still learning about these.
 

heapsreal

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What's the equivalent human low dose of hydro-cortisone?

I have read around 20mg divided into 4 x 5mg, it does say when one has a sudden infection or stress that one can take 20mg 4 times a day for 2-3 days which helps fight the infection and or overcome this , this is still said to be physiological as an healthy/intact adrenal system will secrete that much cortisol during stress/infection.
Personally because i think we (cfs/me) are special, we should start with a very low dose of 2.5mg-5mg once a day to see how we go and adjust from there. I have read that initially one can have increased hyped up type symptoms as cortisol helps improve thyroid function, especially if adrenal function has been poor for awhile, this is called a thyroid dump, i think?? and this passes after a day or 2, so good reason to start slow and low.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Great info. This looks like a one time treatment tho. Are there studies with appropriate labs on long term low dose
cortisol treatments ?

I'm interested in learning more because in the last 2 years, despite my up regulated immune system,
Dx via high viral titers (not active), I've gotten severe cases of h pylori and now pylenephritis (sp?).
Basically bad infection in kidneys and ureters.

I've heard that my leukocytes get incredibly high in my urine when I am actively passing kidney stones. Typically once the stone has
passed I feel better in only a few hours. So I'm assuming that my inflamation markers are down. I've never thought
about re-testing my leukocytes right after passing a stone.

So what part of my immune system is in high gear ? Why can't it control these bacteria ?

I haven't caught a virus in many years. Kow.. Tc .. X

Ps. I've seen these markers mentioned in mast cell info but I'm still learning about these.

oh my god, you know how to pack a question into a few sentences.
a kidney stone i think is a different scenario as the infection builds due to a physical blockage and when its removed so do the bugs, most of the time.

As to why some cfsers get colds and some dont, in my case intially i didnt get colds either but i think my immune system was strong enough for a few years to keep putting up a good fight so if a cold germ got close it got caught in the cross fire of my immune system fighting the initial cfs infection. After a few years As my immune system tired and my adrenal function(adrenal hormones started dropping on tests) i then started picking up colds and gastro bugs etc and took longer to recover from them then other family members that picked these up.

I hope that helps. I suppose too that is why i think that the longer one has cfs/me the more chances they also have adrenal dysfunction/fatigue going on as well from the chronic stress of whatever is causing this illness?? Maybe also why long term cfsers may only partially recover on antivirals as their adrenals havent been affectively treated yet and why those treated earlier on in their cfs have a better chance of full recovery??
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Lol. Yeh, I woke up ready to go this morning. It's interesting to read how different we are but have the same dx.

I've never had my leukocytes re-tested after passing a stone so I don't know how quickly these return
to normal. I stop feeling sick within hours of passing the stone normally but this time I didn't.

I wonder
if this has been studied. It's one of the few times the source of high leukocytes can be accurately
measured in relation to the inflamatory source. I'll look for some studies.

I caught viruses often in the beginning but my dd was 2 and in daycare so I had direct access to all the bugs
she brought home. I stopped getting colds and viruses after she stopped bringing them to me.

I had high viral titers at that time so my immune system wasn't up regulated enough to fight these. My first
viral titer test was 1990 and my last was in 2006. Both were high.

I really don't think my adrenals got hammered until the last 8 years. Only because despite all my disabling cfs
symptoms, I kept up with raising a child physically. Mentally I was a mess. Slurred words etc. And I used a motorized cart when I went out due to ataxia.

I see what you mean about how the length of time we've been sick plays a role in our adrenal function and ability to fend
off pathogens. I tested low on dhea and pregnenolone a few years ago and took both for a couple of years. After not seeing any improvement
I stopped being consistent about taking these. I may have just needed more tho. I'll get this re-tested soon. To my knowledge that was the first time these had been measured.

Have you had your hormones tested ?

Tc .. X
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi;
This is such a difficult and controversial subject, so I'm hesitant to respond, but I'll give it a go.

The definition of 'low dose' has changed alot since Dr. Jefferies wrote the book.

Although he considered 20 mgs. daily to be a low dose, and that 40 mgs. daily was considered to be a replacement dose for people with complete failure, such as Addison's or adrenalectomized patients--now, the replacement dosage for these folks is averaging 15-30 mgs. daily. ( I've read of some people with addison's who develop cushinoid symptoms with even dosages of 30 mgs. daily.)

It appears that many folks here have a type of dysfunction where there is an inappropriate secrection. Some have low morning cortisol, and high evening cortisol, for instance. It seems to me that some dysfunctions may be better treated without the use of cortisol itself.

I understand the interest in low dose cortisol for people with ME/CFS, because many have been helped with its use, but, I also know of its power; ( have been taking it for 6 yrs. ), the side-effects of over- replacement, and prolonged stress-dosing.

So, I recommend that in the case of all hormones, especially cortisol, there truly is the need for comprehensive testing. I agree with the folks who have repeatedly cautioned us here.

I feel that the definition of low dose cortisol would be more in the range of 1-5 mgs. daily. I would still strongly encourage testing with that dosage too.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
My experience with HC was nothing short of TOTAL HELL. I had/have low cortisol according to my spit tests, so it made perfect sense that I needed to boost my levels. This is where theory and reality collide. Because in reality, HC turned out to be the WORST thing I have ever taken.

I started with just 5 mg (compounded) and raised my dose up gradually to 20mg. By the 5th week, I was having the worst anxiety of my life--worse than after being struck by lightning. And in addition to that, I began to have heart palpitations every single night. I had to take HUGE doses of magnesium and holy basil to get through it and had to lay really still in bed for almost 2 months. After being amped up with severe anxiety and agitation for what seemed like an eternity, I crashed. This was back in 2009, and I still have not recovered.

I would never ever ever take that crap again.
 

maddietod

Senior Member
Messages
2,859
My experience with HC was nothing short of TOTAL HELL. I had/have low cortisol according to my spit tests, so it made perfect sense that I needed to boost my levels. This is where theory and reality collide. Because in reality, HC turned out to be the WORST thing I have ever taken.

I started with just 5 mg (compounded) and raised my dose up gradually to 20mg. By the 5th week, I was having the worst anxiety of my life--worse than after being struck by lightning. And in addition to that, I began to have heart palpitations every single night. I had to take HUGE doses of magnesium and holy basil to get through it and had to lay really still in bed for almost 2 months. After being amped up with severe anxiety and agitation for what seemed like an eternity, I crashed. This was back in 2009, and I still have not recovered.

I would never ever ever take that crap again.

That sounds like a very high dose. Dr. Teitelbaum put me on 5mg am and 2.5mg at noon, and that amount worked well for me. I stopped because I was worried about long-term corticosteroid use, not because of side effects.
 

heapsreal

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Hi;
This is such a difficult and controversial subject, so I'm hesitant to respond, but I'll give it a go.

The definition of 'low dose' has changed alot since Dr. Jefferies wrote the book.

Although he considered 20 mgs. daily to be a low dose, and that 40 mgs. daily was considered to be a replacement dose for people with complete failure, such as Addison's or adrenalectomized patients--now, the replacement dosage for these folks is averaging 15-30 mgs. daily. ( I've read of some people with addison's who develop cushinoid symptoms with even dosages of 30 mgs. daily.)

It appears that many folks here have a type of dysfunction where there is an inappropriate secrection. Some have low morning cortisol, and high evening cortisol, for instance. It seems to me that some dysfunctions may be better treated without the use of cortisol itself.

I understand the interest in low dose cortisol for people with ME/CFS, because many have been helped with its use, but, I also know of its power; ( have been taking it for 6 yrs. ), the side-effects of over- replacement, and prolonged stress-dosing.

So, I recommend that in the case of all hormones, especially cortisol, there truly is the need for comprehensive testing. I agree with the folks who have repeatedly cautioned us here.

I feel that the definition of low dose cortisol would be more in the range of 1-5 mgs. daily. I would still strongly encourage testing with that dosage too.

Your right, i think one needs to be tested and showing adrenal dysfunction. Maybe one needs to consider other ways to treat adrenal dysfunction before they try hydrocorte like different herbs like ginseng, licorice etc then step up to pregnenolone and dhea etc Inappropriate cortisol response in us is on the money. MAybe many of us need to only supplement where we are low after a 4 times day saliva test. Maybe some only need midday hydrocort or morning hydrocort which would keep the dose down to 5-10mg a day. I have read other docs and there was one study showing doses much lower in the 5-10mg range helping without adrenal supression, so maybe alot safer sticking to those doses. The last few months i have found phosphatidyleserine very helpful for night time high cortisol levels, my sleep has improved alot even though i still need sleep meds. My experience shows me that cortisol levels and more so cortisol rhthym is important and also sets us up better for proper sleep that many of us cant seem to get.

Hydrocortisone and even pregnenolone seem to be one of those treatments that either one gets alot out of or it makes them feel like crap. Its trial and error again???

I would still like to know something but cant find much info on, is that its mentioned alot how the hydrocort treatment for adrenal fatigue is used for a few months to 'rest' the adrenals etc i know thats controversial and has more to do with hypothalamus, but i have read about it being recommended only using it for several months and it helping or restoring adrenal function after tapering off hydrocort, i havent come across alot of peoples actual experience with this course restoring adrenal function, seem to find more about people being on hydrocort all the time though??
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
My experience with HC was nothing short of TOTAL HELL. I had/have low cortisol according to my spit tests, so it made perfect sense that I needed to boost my levels. This is where theory and reality collide. Because in reality, HC turned out to be the WORST thing I have ever taken.

I started with just 5 mg (compounded) and raised my dose up gradually to 20mg. By the 5th week, I was having the worst anxiety of my life--worse than after being struck by lightning. And in addition to that, I began to have heart palpitations every single night. I had to take HUGE doses of magnesium and holy basil to get through it and had to lay really still in bed for almost 2 months. After being amped up with severe anxiety and agitation for what seemed like an eternity, I crashed. This was back in 2009, and I still have not recovered.

I would never ever ever take that crap again.

Did the total hell start when u were at the higher doses? I wonder if u stayed at say 5mg twice a day if u would have avoided all the side effects. I dont really understand the 4 times a day dosing when hydrocortisones half life is like 8-12hrs. I think many would be fine with just a morning dose or maybe another dose 4 hours later?? Have u tried other cortisol type treatments like pregnenolone??
Its interesting to hear experiences like yours, it gives us another perspective, thanks alot.

cheers!!!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi;

Although he considered 20 mgs. daily to be a low dose, and that 40 mgs. daily was considered to be a replacement dose for people with complete failure, such as Addison's or adrenalectomized patients--now, the replacement dosage for these folks is averaging 15-30 mgs. daily. ( I've read of some people with addison's who develop cushinoid symptoms with even dosages of 30 mgs. daily.)

It appears that many folks here have a type of dysfunction where there is an inappropriate secrection. Some have low morning cortisol, and high evening cortisol, for instance. It seems to me that some dysfunctions may be better treated without the use of cortisol itself.

I understand the interest in low dose cortisol for people with ME/CFS, because many have been helped with its use, but, I also know of its power; ( have been taking it for 6 yrs. ), the side-effects of over- replacement, and prolonged stress-dosing.

So, I recommend that in the case of all hormones, especially cortisol, there truly is the need for comprehensive testing. I agree with the folks who have repeatedly cautioned us here.

I feel that the definition of low dose cortisol would be more in the range of 1-5 mgs. daily. I would still strongly encourage testing with that dosage too.

I absolutely agree with the need for comprehensive testing before starting HC or any other steroid regimen but am saddened by the widespread fear and mis-information that surrounds low-dose steroid use. The warnings found are referring to pharmacological doses - well above what people with HPA axis dysfunction would ever use much less on a daily basis. Think about it - if cortisol was the root of all evil, all people with a "normal" cortisol level should be falling over with infections and impaired immune systems all over the place and they are not. The fact of the matter is that it is a Goldilocks problem. The cortisol level has to be just right. Too high and there are problems and too low and you die.

I have to strongly disagree though with any sort of "general" recommendation to stay in the 1-5, 10, 20 mg range. The fact is that we are all different and have different steroid needs and dosages. There really is a lot of trial and error to this process and unfortunately too many doctors are not well versed or are mis-informed about how to go about it properly.

It took me almost a year of feeling not that great before I got on a steroid combination and dose that works for me. There were many times I thought about giving up but I am glad that I stuck it out because I am functioning better now than I have in years and I directly attribute at least half of that to addressing my dysfunctional endocrine system (the other half to addressing infections with antibiotics/antivirals).

Many people who are low in cortisol as shown by appropriate testing who then try to take 5 or 10 mg of HC will find themselves in hell and much worse with adrenaline surges and the like. There is a complicated feedback mechanism in play and sometimes low doses will affect the feedback mechanism and leave you with less cortisol after supplementing than you started with before supplementing. The answer to this is to raise the dose...sometimes well past 20 mg or try a longer lasting steroid.

Some people with only moderate deficiencies on the other hand may do just fine with a very low dose and find that it solves many of their issues. One size does not fit all.

What hardly ever works are expensive herbal formulas with all ingredients plus the kitchen sink...maybe if you are generally healthy and a little stressed but not if you are flatlining a saliva test. I wasted about a year with these types of formulas and wish that I could do that one over for sure. I think they can be an adjunct to appropriate steroid treatment for sure but not the sole solution.

I have adrenal insufficiency and also belong to an Addison's forum. The number of people doing well on 20-25 mg is the exception and not the rule. Most people with jobs, families, LIVES in other words, are taking more in the 30-40 mg range. I think this is much more realistic in terms of the stresses most of us live with on a daily basis.

There may also be some degree of cortisol resistance involved in the hypothalamic dysfunction that is common in ME/CFS. This must also be considered when dosing and may precipitate a need for higher than "typical" dosing.

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.

Ema
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Did the total hell start when u were at the higher doses? I wonder if u stayed at say 5mg twice a day if u would have avoided all the side effects. I dont really understand the 4 times a day dosing when hydrocortisones half life is like 8-12hrs. I think many would be fine with just a morning dose or maybe another dose 4 hours later?? Have u tried other cortisol type treatments like pregnenolone??
Its interesting to hear experiences like yours, it gives us another perspective.

Actually I felt bad from the very first dose of HC, but I was encouraged to "keep pushing through." And like a desperate sick person, that's what I did. Wish I could go back in time and quit after that initial 2.5 mg. It would have spared me several years of hell.

Pregnenolone also made me feel horrible, but fortunately I listened to my instincts and quit that after 48 hours.

The only hormones I do well with are bio-identical progesterone and estradiol creams, and 7Keto DHEA. Have had no problems with low daily doses of any of those. I also take schizandra, ashwagandha and siberian ginseng to help my adrenals. Those have been my saving grace to help me recover from the HC debacle.
 

heapsreal

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Actually I felt bad from the very first dose of HC, but I was encouraged to "keep pushing through." And like a desperate sick person, that's what I did. Wish I could go back in time and quit after that initial 2.5 mg. It would have spared me several years of hell.

Pregnenolone also made me feel horrible, but fortunately I listened to my instincts and quit that after 48 hours.

The only hormones I do well with are bio-identical progesterone and estradiol creams, and 7Keto DHEA. Have had no problems with low daily doses of any of those. I also take schizandra, ashwagandha and siberian ginseng to help my adrenals. Those have been my saving grace to help me recover from the HC debacle.

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??
 
Messages
57
I absolutely agree with the need for comprehensive testing before starting HC or any other steroid regimen but am saddened by the widespread fear and mis-information that surrounds low-dose steroid use. The warnings found are referring to pharmacological doses - well above what people with HPA axis dysfunction would ever use much less on a daily basis. Think about it - if cortisol was the root of all evil, all people with a "normal" cortisol level should be falling over with infections and impaired immune systems all over the place and they are not. The fact of the matter is that it is a Goldilocks problem. The cortisol level has to be just right. Too high and there are problems and too low and you die.

I have to strongly disagree though with any sort of "general" recommendation to stay in the 1-5, 10, 20 mg range. The fact is that we are all different and have different steroid needs and dosages. There really is a lot of trial and error to this process and unfortunately too many doctors are not well versed or are mis-informed about how to go about it properly.

It took me almost a year of feeling not that great before I got on a steroid combination and dose that works for me. There were many times I thought about giving up but I am glad that I stuck it out because I am functioning better now than I have in years and I directly attribute at least half of that to addressing my dysfunctional endocrine system (the other half to addressing infections with antibiotics/antivirals).

Many people who are low in cortisol as shown by appropriate testing who then try to take 5 or 10 mg of HC will find themselves in hell and much worse with adrenaline surges and the like. There is a complicated feedback mechanism in play and sometimes low doses will affect the feedback mechanism and leave you with less cortisol after supplementing than you started with before supplementing. The answer to this is to raise the dose...sometimes well past 20 mg or try a longer lasting steroid.

Some people with only moderate deficiencies on the other hand may do just fine with a very low dose and find that it solves many of their issues. One size does not fit all.

What hardly ever works are expensive herbal formulas with all ingredients plus the kitchen sink...maybe if you are generally healthy and a little stressed but not if you are flatlining a saliva test. I wasted about a year with these types of formulas and wish that I could do that one over for sure. I think they can be an adjunct to appropriate steroid treatment for sure but not the sole solution.

I have adrenal insufficiency and also belong to an Addison's forum. The number of people doing well on 20-25 mg is the exception and not the rule. Most people with jobs, families, LIVES in other words, are taking more in the 30-40 mg range. I think this is much more realistic in terms of the stresses most of us live with on a daily basis.

There may also be some degree of cortisol resistance involved in the hypothalamic dysfunction that is common in ME/CFS. This must also be considered when dosing and may precipitate a need for higher than "typical" dosing.

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.

Ema

Hi Ema, I don't know if you are the right person, but Sushi said contact Ema in regards to Lymes. I think the above post is interesting in that I have been on and off of hc. I always took the compounded slow release one, so don't have any experience with dosing like the Adrenal group says. I still belong to a adrenal group, but got discouraged with seeing some people continuing to go thru "hell" between hc and thyroid. I think for me, mine is very disregulated, and I could never seem to get it down right. It also significantly impacted my blood sugar. I have since found out I have low antibodies to GAD65, hence diabetes type 1.5 I also think because I am on psyche meds that effects the feedback loop.

Would you be kind enough to PM about the Lymes etc, as if I don't make some decisions on treatments soon I will probably wind up who knows where?

Thanks,
Dfox
 
Messages
57
I absolutely agree with the need for comprehensive testing before starting HC or any other steroid regimen but am saddened by the widespread fear and mis-information that surrounds low-dose steroid use. The warnings found are referring to pharmacological doses - well above what people with HPA axis dysfunction would ever use much less on a daily basis. Think about it - if cortisol was the root of all evil, all people with a "normal" cortisol level should be falling over with infections and impaired immune systems all over the place and they are not. The fact of the matter is that it is a Goldilocks problem. The cortisol level has to be just right. Too high and there are problems and too low and you die.

I have to strongly disagree though with any sort of "general" recommendation to stay in the 1-5, 10, 20 mg range. The fact is that we are all different and have different steroid needs and dosages. There really is a lot of trial and error to this process and unfortunately too many doctors are not well versed or are mis-informed about how to go about it properly.

It took me almost a year of feeling not that great before I got on a steroid combination and dose that works for me. There were many times I thought about giving up but I am glad that I stuck it out because I am functioning better now than I have in years and I directly attribute at least half of that to addressing my dysfunctional endocrine system (the other half to addressing infections with antibiotics/antivirals).

Many people who are low in cortisol as shown by appropriate testing who then try to take 5 or 10 mg of HC will find themselves in hell and much worse with adrenaline surges and the like. There is a complicated feedback mechanism in play and sometimes low doses will affect the feedback mechanism and leave you with less cortisol after supplementing than you started with before supplementing. The answer to this is to raise the dose...sometimes well past 20 mg or try a longer lasting steroid.

Some people with only moderate deficiencies on the other hand may do just fine with a very low dose and find that it solves many of their issues. One size does not fit all.

What hardly ever works are expensive herbal formulas with all ingredients plus the kitchen sink...maybe if you are generally healthy and a little stressed but not if you are flatlining a saliva test. I wasted about a year with these types of formulas and wish that I could do that one over for sure. I think they can be an adjunct to appropriate steroid treatment for sure but not the sole solution.

I have adrenal insufficiency and also belong to an Addison's forum. The number of people doing well on 20-25 mg is the exception and not the rule. Most people with jobs, families, LIVES in other words, are taking more in the 30-40 mg range. I think this is much more realistic in terms of the stresses most of us live with on a daily basis.

There may also be some degree of cortisol resistance involved in the hypothalamic dysfunction that is common in ME/CFS. This must also be considered when dosing and may precipitate a need for higher than "typical" dosing.

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.

Ema

BTW, I don't know for sure of any comprehensive testing besides saliva, and different labs have different values. Anyone else know any other way?

Thanks, Dfox
 

Crux

Senior Member
Messages
1,441
Location
USA
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.
 

heapsreal

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10,089
Location
australia (brisbane)
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.

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???