low dose hydrocortisone without impairing immune response

[maddietod]

I wish I had before and after information. Dr. Teitelbaum's office burned to the ground years ago, so my before and after Cortef measurements were lost. I took it for about 2 and a half years and was pretty much normal from it. I weaned off slowly, just in case, but had no problems. This was all prior to, say, 1995, so I don't remember the timing, but my slow deterioration started again at some point after I stopped Cortef, and that has continued steady-on.

Valentijn, what do endocrinologists think of saliva tests? What kind of blood workup would I expect if I went that medical route?

 

[Valentijn]

Valentijn, what do endocrinologists think of saliva tests? What kind of blood workup would I expect if I went that medical route?

To the best of my (very limited) knowledge, I think cortisol is the only substance commonly tested via saliva. When it comes to blood there is both serum levels and platelet levels. Serum gives a snapshot of what it is right now, whereas platelet levels give a long term (3 month) look at levels.

One very good use of serum levels is in checking immediate reactions to changes in position (standing versus laying down) to see what the body is doing. Another is in seeing how the body reacts to being injected with substances that stimulate the release of other substances, to make sure the body is reacting appropriately, in the case of narrowing down the cause of adrenal dysfunction and such.

I think a thorough workup would involve testing the levels of a lot of hormones (cortisol, aldosterone, vasopressin, ACTH, etc) and some neurotransmitters (epinephrine, norepinephrine, etc). Depending on results, the endocrinologist might want to test your response to positional changes or ACTH injection while drawing blood, and/or run more blood labs to get closer to underlying causes.

 

[MishMash]

Replacement therapy for hydro-cortisol should be done after testing. Not after recommendation from some self-appointed doctor or expert on the web. I don't care who started a particular thread. The negative outcomes vastly outweigh the postive ones. I don't care how many PMs were passed. In such cases, we are asked to believe hearsay as solid proof.

 

[Valentijn]

Replacement therapy for hydro-cortisol should be done after testing. Not after recommendation from some self-appointed doctor or expert on the web. I don't care who started a particular thread. The negative outcomes vastly outweigh the postive ones. I don't care how many PMs were passed. In such cases, we are asked to believe hearsay as solid proof.

Hydrocortisone is used to control inflammation in diseases like MS and rheumatoid arthritis. And at much higher doses than have been shown to benefit ME/CFS patients.

I'd hazard to say that the medical community disagrees with you, and is willing to use hydrocortisone for something other than replacing what is missing.

 

[maryb]

I had a panel of results run by Dr Bor--kin, very well respected endo - they were done on saliva and urine, pretty comprehensive, hormones, seratonin etc. He formulates treatment in topical creams but again this was something I couldn't tolerate, even a tiny amount of - story of my life, oops not a conspiracy I know....
I think ME patients need a very different approach to others.

 

[Wayne]

Looking back, I wish I had not gone on them. I felt awful on them at low doses at first, but the doc said to keep taking it and raising the dose, as the Jeffries book dictated. I'm still not sure what to do about this issue.

Hi Lizw,

Thanks for your report. I'm sorry to hear about your experience, especially the part where your doctor told you to keep up with this therapy despite feeling awful. Reminds me of two experiences I had. One was with synthroid, and the other was with Florinef. I only took a single dose, and each one wiped me out for several days.

I remember my doctor strongly encouraging me to stay with the Florinef until I had somehow worked through the side effects. But my own gut instinct told me to never touch that stuff again. I eventually came to the conclusion I almost certainly DON'T have adrenal insufficiency, which the Florinef was supposed to help. Instead, I believe my main problem was with my HPA axis, with my pituitary being the weak link. My acupuncturist feels my kidney pulse is really quite strong. Just one instance where using our own best judgment should trump what our doctor might advise us to do.

 

[maddietod]

Hi Lizw,

Thanks for your report. I'm sorry to hear about your experience, especially the part where your doctor told you to keep up with this therapy despite feeling awful. Reminds me of two experiences I had. One was with synthroid, and the other was with Florinef. I only took a single dose of each, because ach one wiped me out for several days.

I remember my doctor strongly encouraging me to stay with the Florinef until I had somehow worked through the side effects. But my own gut instinct told me to never touch that stuff again. I eventually came to the conclusion I almost certainly DON'T have adrenal insufficiency, which the Florinef was supposed to help. Instead, I believe my main problem was with my HPA axis, with my pituitary being the weak link. My acupuncturist feels my kidney pulse is really quite strong. Just one instance where using our own best judgment should trump what our doctor might advise us to do.

I've done the same thing. I lasted one day on synthroid, klonopin, and ambien, and 3 days on lipitor. I didn't ask my doctor in any of these cases - I called and said I'd stopped and let them offer opinions.

 

[Wayne]

... doesn't the fact that when you (and others) have tried to cut back on the dosage only to regress, contradict Jeffrie's theory/hypothesis that one only needs to take it for 2-3 years to allow the adrenals to 'rest', then taper down and be okay without the HC? ......... I also thought I read somewhere that Jeffries himself stayed on the Cortef for the rest of his life.

Hi Dan,

Good to hear from you. It's been many years since I read and re-read Jeffries' book several times. But I'm pretty certain he said that some people are able to taper off HC after their adrenal glands have rested, while others will need to stay on it indefinitely. So his patients' experience went both ways.

In my own case, I think my adrenal glands are most likely healthy, but my low cortisol levels are resulting from a dysfunctional HPA axis. If so, it makes sense that I continue to need the HC unless or until I'm able to somehow correct my HPA dysfunction. In this regard, I'm making trying to balance out my thyroid function a priority for this coming year (I wonder how many other people have made this their new year's resolution).

Regarding Jeffries being on it for many years, I believe you're correct on this. My own understanding is that virtually all of our hormones decrease over time. I've heard we no longer produce HGH after age 21, but the success of the product Laminine appears to show that raising these levels can help numerous health conditions. I believe DHEA levels start decreasing during our 20's, but that keeping them at certain levels can also help many health conditions. My understanding is Jeffries started supplementing with HC when he was in his mid-50's, and continued taking it because it helped his low cortisol symptoms, and he had no adverse effects from taking it.

I guess this could take us into the whole topic of HGH, testosterone, DHEA, and other hormone supplementing therapies that are being advocated by a number of "life extension" specialists. They are often roundly criticized for doing these therapies without clinical evidence to support their safety and efficacy. But the people who are doing them seem to feel the sometimes dramatic benefits they receive from taking them are worth it. I guess in the end, like all other aspects of our lives, including our spiritual orientation, we need to weigh the pros and cons, consider the risk/reward ratio, and proceed accordingly.

Best Regards, Wayne

 

[Wayne]

To address somewhat the immune response part of title of this thread: I believe Jeffries used low-dose HC for about a dozen or so conditions, including (as I remember) post-viral syndrome, infertility, influenza, and more. He apparently discovered the duration of a flu episode could be shortened by the low-dose HC improving the immune response.

My sister at one point was having a very hard time overcoming a very severe allergy episode, with the symptoms becoming life threatening. When I saw her, her whole system looked "devastated", and her sometimes inability to breathe would land her in the emergency room.

Since I had long suspected she had low cortisol levels, I suggested she try some small amounts of my HC to see if it would help her overcome her crisis. Feeling somewhat desperate, she reluctantly agreed. Much to her surprise, she was markedly better the very next day, and this crisis was soon behind her. -- Very much anecdotal, but I think a relevant story to this thread.

Wayne

 

[Wayne]

I think it's important to mention that Jeffries devoted his entire career to researching the benefits of low-dose HC supplementation, something nobody else was willing to do at the time because of the prevailing attitudes (many of which still exist today). Interestingly, most of these attitudes resulted from not taking the time to distinguish the difference between low-dose supplementation (below replacement), and high-dose supplementation (much more than replacement).

I've noticed that when people study something intently, they can either become "obsessed" and begin to lose all objectivity, or they can became an expert in their field, and gain deep insights that escape others who have only a peripheral interest. Jeffries struck me as the latter, who stayed very balanced with his research approach, and constantly advocated more research be done in this area. As much as he knew, he realized there was much more to learn. I'm sure he would have taken very seriously the very unfortunate results some on this board have reported. But ME/CFS just wasn't on the health radar screen at the time he was doing his own research.

 

[Wayne]

I just ran across this reference by a woman who was given cortisone shots for some Lyme pain. Her experience might explain why some pwCFS have such poor experiences from doing even low-dose hydrocortisone.

My LLMD believes that I have had Lyme Disease for years, "percolating" for years, coming out one symptom at a time, the migraines, the veritgo, the body aches then finally, the trigger that caused the explosion. The cortisone shots disseminated both viral and bacterial diseases body-wide.

 

[heapsreal]

I just ran across this reference by a woman who was given cortisone shots for some Lyme pain. Her experience might explain why some pwCFS have such poor experiences from doing even low-dose hydrocortisone.

My LLMD believes that I have had Lyme Disease for years, "percolating" for years, coming out one symptom at a time, the migraines, the veritgo, the body aches then finally, the trigger that caused the explosion. The cortisone shots disseminated both viral and bacterial diseases body-wide.

were these cortisone shots high doses, maybe enough to cause immune supression?
I know in dr jefferies book on cortisol, he mentions how doses within physiological range improve immune function??
there is so much information that contradicts itself, it would be good if they did some current research on these things instead of wive's tails on the use of cortisol. good to have proper facts on this subject?

 

[Waverunner]

were these cortisone shots high doses, maybe enough to cause immune supression?
I know in dr jefferies book on cortisol, he mentions how doses within physiological range improve immune function??
there is so much information that contradicts itself, it would be good if they did some current research on these things instead of wive's tails on the use of cortisol. good to have proper facts on this subject?

I agree, it would be nice to see some research on it. I know a patient who has to substitute hydrocortisone because parts of his pituitary glands had to be removed and therefore his body doesn't produce corticosteroids. He takes 7.5 mg (Cortef) in the morning, 5 mg for lunch and 2.5 mg in the evening but has to take more when ill or under high stress. So if someone here takes over 20 mg a day, I would consider this to be a lot.

An important question is, if we suffer from an autoimmune disease or infection. In the first case, some immune suppression would be OK, in the second case we would want anything but immune suppression. I guess 1.25 mg to 2.5 mg could be considered as physiological and immune stimulating.

 

[Wayne]

were these cortisone shots high doses, maybe enough to cause immune supression?

The author didn't give a lot of specifics on how many or what dosages were involved with these cortisone injections, although I assumed they were much higher than normal low-dose hydrocritsone dosages. My mother used to occasionally get prednisone injections that were about 100 mg, equivalent to about 400 mg of of cortisol.

My own take was that the injections did not precipitate a lowered immune functioning, since the effects of "dissemination" seemed to show up almost immediately. But I can't say for sure. Here's a link to the full story in case you would want to try to discern some of these questions for yourself:

Better Health Quest: Blazing A Trail For a Family With Lyme Disease

Wayne

 

[Dreambirdie]

I think it's important to mention that Jeffries devoted his entire career to researching the benefits of low-dose HC supplementation, something nobody else was willing to do at the time because of the prevailing attitudes (many of which still exist today). Interestingly, most of these attitudes resulted from not taking the time to distinguish the difference between low-dose supplementation (below replacement), and high-dose supplementation (much more than replacement).

I've noticed that when people study something intently, they can either become "obsessed" and begin to lose all objectivity, or they can became an expert in their field, and gain deep insights that escape others who have only a peripheral interest. Jeffries stuck me as the latter, who stayed very balanced with his research approach, and constantly advocated more research be done in this area. As much as he knew, he realized there was much more to learn. I'm sure he would have taken very seriously the very unfortunate results some on this board have reported. But ME/CFS just wasn't on the health radar screen at the time he was doing his own research.

I read that Jeffries book. It was the first step that led to my HC disaster.

The hard lesson learned was that just because something makes perfect sense from a theoretical point of view, does not mean that it will work out well in reality. Theory and reality--two very different things. In my case, I proved Jeffries wrong and paid the price with my four year crash.

 

[Ema]

The reality is that we all need some *ideal* level of cortisol in the body for optimal health and wellness. Too much or too little and there are detrimental consequences. It takes trial and error to find that level along with competent guidance (which seems to be in very short supply!).

I feel very sad for those who continue to experience declining health because of the circumstances around their steroid trials. I know if I had quit my steroid trials at month 3 or 6 or 9, I would also be much worse off now as well. Instead, I was lucky enough to have a great doctor that changed my dose and type of steroid over and over until we found the combination that got me out of bed and a bit back into life. Of course, we had no choice but to persevere because my tests showed adrenal insufficiency which is life-threatening if not corrected. There is still a ways to go because of infections due to low cortisol and primary immunodeficiency issues but hopefully the recent addition of Hizentra will help correct the rest.

Ema

 

[heapsreal]

My experience at raising cortisol levels with pregnenolone cream starting low and slowly increasing along with dhea tabs has been positive for me. It has definately helped with energy and mental clarity. Its up there with with some of my useful treatments for me. We all react diffferently to different treatments.

cheers!!

 

[Wayne]

I read that Jeffries book. It was the first step that led to my HC disaster. ......... The hard lesson learned was that just because something makes perfect sense from a theoretical point of view, does not mean that it will work out well in reality. Theory and reality--two very different things. In my case, I proved Jeffries wrong and paid the price with my four year crash.

I can’t agree with you that you “proved Jeffries’ wrong”. I think what your experience shows is that what may work for most people not dealing with ME/CFS may not necessarily work for pwME/CFS. — Certain things may make total sense using just about every objective criteria. But when it comes to any given individual with ME/CFS, it may not make ANY sense at all. That's why the responsibility falls to each of us to use our very best discrimination and proceed cautiously with anything we undertake, whether HC, or methylation, or anything else.

 

[Dreambirdie]

I can’t agree with you that you “proved Jeffries’ wrong”. I think what your experience shows is that what may work for most people not dealing with ME/CFS may not necessarily work for pwME/CFS. — Certain things may make total sense using just about every objective criteria. But when it comes to any given individual with ME/CFS, it may not make ANY sense at all. That's why the responsibility falls to each of us to use our very best discrimination and proceed cautiously with anything we undertake, whether HC, or methylation, or anything else.

I did prove Jeffries wrong for myself. Very very wrong.
I was convinced he was right and that his protocol would help me. WRONG!

And yes, I absolutely did proceed with caution. That made no difference. Doing the wrong thing with caution is still the wrong thing in the end. Here's how the math worked out for me:

WRONG THING + discrimination + caution + research + saliva tests = WRONG THING

 

[heapsreal]

I did prove Jeffries wrong for myself. Very very wrong.
I was convinced he was right and that his protocol would help me. WRONG!

And yes, I absolutely did proceed with caution. That made no difference. Doing the wrong thing with caution is still the wrong thing in the end. Here's how the math worked out for me:

WRONG THING + discrimination + caution + research + saliva tests = WRONG THING

stopping cold turkey wouldnt have helped your situation though and maybe your doc had your dose too high too fast. Maybe it wasnt the right treatment for you but it seems others have got a benefit from it. SO one cant say a blanket response that its bad for everyone and or everyone is going to have the same reaction either. cfs/me is one of those illnesses where we can respond unusual to any types of treatments, but i think u did damage stopping cold turkey as u would have stopped your own cortisol production and didnt taper to allow your adrenals to recover, your doc should have been monitoring you alot closer and helped u to taper off properly.