Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 2, 2012.
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But it is Mark - we know it.
I wish that we could stop using the term "adrenal fatigue" which means nothing and has a horrible reputation as being part of the worst of "alternative" medicine. Let's instead refer to the condition properly as HPA Axis Dysfunction - a signalling problem in the brain that is VERY common in ME/CFS and is usually untreated or improperly treated.
For most of us with ME/CFS, our adrenals are structurally fine. They simply do not process signals from the brain appropriately. This is in contrast with autoimmune diseases like Addison's where there is structural damage to the gland.
Unfortunately, most mainstream medicine does not recognize any other type of adrenal dysfunction other than Addison's. Thankfully many more open minded doctors are starting to recognize endocrine disruption for what it is and are treating patients with the appropriate hormones. These interventions often provide great symptomatic relief for some of the most disabling symptoms like fatigue, pain, sleep problems, and metabolic issues.
It's also important to note that many infections (Lyme in particular but viral infections as well) can also disrupt the endocrine system. Replacing those hormones helps the body fight the infections.
Interesting Ema - of course much more complex than your run of the mill ignorant Doc - do you think one day they will be able to take on real medicine - one can but hope - got a feeling we are depending you US wise.
Adrenal Fatigue: A Possible Element of ME/CFS. Spot on. Call it what you like, but that is why I have the AF (Adrenal Fatigue) in front of the CFS in my username. I got the Dx for CFS first actually by a pdoc. But he just wanted to try psych meds to "fix" it. I said no thanks and then found an Integrative Internist who specializes in such things.
The thing is, I suppose if one's symptoms are cured by treatment for Adrenal Fatigue, then technically they may never have had CFS. On the other hand, it could be that CFS is just unsatisfactorily diagnosed/treated Adrenal Fatigue.There is a lot going on to investigate.
Also of note is besides blood cortisol and DHEA-S tests, can also get a Pregnenolone tests as well as GH (Growth Hormone), IGF-1 (Insulin-like growth factor 1), and aspartate aminotransferase/alanine aminotransferase (AST/ALT) ratio.
Here is a pretty good overview of Adrenal Fatigue and Hormone Therapy. I think it is tricky business though. I also think many people have a misconception about adrenal fatigue. It seems like they assume the adrenals act in a vacuum or function in the body in a one-way closed loop.
My morning cortisol was low, DHEA-S was in normal range, Pregnenolone low, AST and ALT high, IGF-1 high.
My Internist has me on a relatively high dose of Pregnenolone (500 mg) and DHEA (100 mg) for the hormonal part as well as a relatively high dose of N-Acetyl-L-Cysteine (NAC - 2400 mg) and Boron (90 mg) for the cognitive/memory issues. My lab work did not detect any boron in my system.I also take other complimentary supplements.
On top of that I had previously been Dx'd for hypothyroidism and take 88 mcg of SYnthroid for that. The Internist put me on the iodine protocol to see if that could be rectified and I might be able to get off the Synthroid or at least lower the dose.
Also got an MRI ordered for pituitary as well as an abdominal CT scan for potential liver issues.
Would like to hear anyone one else's experience.
This is interesting. Is it anecdotal or other source(s) to back it up?
Amen to that!
There is no such thing as "adrenal fatigue" in medical science. You can test for adrenal insufficiency (primary or secondary) by performing an ACTH challenge. If, after being inundated with ACTH, your adrenals don't release any cortisol, then you have primary adrenal insufficiency. Otherwise, the problem lies elsewhere.
This is serious stuff! The abdominal CT scan is a good idea. Have you been tested for Hepatitis (A, B and C)?
No doubt - but that really does not answer the question, which was in reference to:
Could you tell me when CFS became known - when it was definitively adopted by all "medical science"? What did people call it before CFS or did they just spew out a list of symptoms? Seems there are still Controversies related to chronic fatigue syndrome, all of which have much to do about naming.
In similar parlance, Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. I don't feel the need to wait around for the CDC to name what I might be experiencing.
Yeh, it is odd because I also think it is serious stuff but the doc seems less concerned about it. He thinks it might be fatty liver from being ore-diabetic (althought A1C was fine, but had slight high glucose on last test -102, which I really do not see as a problem).
I have not drank alcohol very much in my life and seldom now, so it is hard to see as fatty liver form that. There could be tumor, or cancer, will not know until they run it. Was tested for Hepatitis (A, B and C). Never been exposed. Was also tested a slew of other viral and bacterial infections, past and present. Nothing of consequence. Think was exposed to epstein barr, but it never manifested is not currently present.
It is very complicated when you get into this stuff and I start to have a greater appreciation for docs that can figure it out and less of an appreciation for those who just play by the book. I doubt that many docs would have bothered with the AST and ALT and I had to explain to my pdoc what the IGF-1 was.
CFS is just a list of symptoms, nothing else. Same applies to ME.
It's called primary adrenal insufficiency by medical science. And it's testable by medical science.
Interesting enough Acromegaly (essentially anterior pituitary gland defect/benign tumor) can cascade down to cause just about every adrenal related symptom as well as CFS symptoms. But not likely the cause of CFS as it is about 3-4 cases per million population per year. The mean age at diagnosis is 40-45 years. That is what the MRI is for (because of elevated IGF-1). I think what I was trying to get across (above^) is that with CFS, the etiology, and causative element(s) are uncertain. So while trying to get better, why not investigate other avenues - be they medically accepted or not - that actually do have a cure. I figure that if I stumble across one and then lose the CFS diagnosis, I will be OK with that
I do appreciate this info - out of all test, ACTH challenge was never mentioned. Will have to ask the doc about it when I see him in a week or so. Just bookmarked it to the Doc Discussion folder
I think adrenal dysfunction is a good term as it doesnt refer to the adrenals as being fatigue as generally its a problem with signalling from the hypothalamus that signal to the adrenal glands to produce cortisol and dhea. Generally western docs say it cant be diagnoseed accurately and its just a group of symptoms but i say it can be diagnosed by testing cortisol and dhea together with symptoms.
The problem with western medicine is that anything they dont recognise as being diagnosed through a test is classed or diagnosed as depression, its their go to diagnosis when they dont know what to call something and of cause they know how to treat it, there heaps of things to use starting with prozac etc serotonin fixes anything, just a pity they cant test ones levels of serotonin like cortisol and dhea.
Ema, one problem with calling it HPA axis dysfunction is that the psychobabblers are already onto that term and is their reason to use antidepressants as they say serotonin can fix it. I have never heard of a psychobabbler or doctor measure one hpa axis function or measure ones serotonin and or noradrenaline. I think theres more hochus pokus going on treating depression etc then there is with adrenal fatigue. If cortisol function is measured then it only recognises obvious defiencies, so those who have some type of dysfunction but arent in the obvious dysfunction/defiency, theyare left floating around feeling like crap with a script for the latest antidepressant.
I think treating hormonal dysfunctions can help improve how one feels, if one could get their serotonin levels measured and if low treated then i think this could help but i think blindly increasing serotonin without testing it is why so many people react poorly to this type of treatment.
Also a big problem is that we technically don't have experts solely on fatigue itself-- there are so many causes, yet experts on what create it are pretty nonexistent; I mean, many know the basic ones- cardiac, pulmonary, anemia, ect. But one can't help but wonder how many in the CFS boat are really victims of lesser known disorders like disbiosis or some form of parasite. So many have gotten lost through the cracks, and therein lies another aspect of the tragedy-- simple solutions that some never are lucky enough to find, and continue to suffer. The truth is, a free forum like this is many's only hope to finding better care. There is no one waiting in the wings for many in the area they live.
We do tend to bag doctors alot but they are only human and cant expect to know everything. we need more docs who specialise in this stuff, i suppose the specialists for this are intergrative docs??
Yes, I do think that there will be a sea change before too long. The current medical paradigm is unsustainable in my opinion and will collapse under the epidemic of chronic illnesses that we are setting ourselves up for with our use of pharmaceuticals and our destruction of our food and water supply. In the wake of that destruction, there will be room for new ideas to emerge and a more holistic outlook of how our body systems all work together will again be common sense.
Sorry, heapsreal, you and I agree on a lot, but I have a bone to pick with you here.
Doctors are highly educated and specialized in the area that they practice. If I pay them hundreds of dollars an hour, I expect them to know (if not everything) a lot more than they do usually!
If buildings I designed fell down, no one would call me human. They would sue me for gross negligence. And they would be right! Doctors are charged with protecting our most precious asset. If they do not have the temperament and intellectual curiosity to do their jobs with the necessary degree of rigor, they need to find alternative careers. Too many doctors actively hurt people with their ignorance and egotism. These doctors need to find themselves unprotected by medical associations living in the distant past and funded by pharmaceutical giants and start to remember their responsibilities to the populations that they are meant to serve.
I am lucky that I have some financial resources in order to search out good doctors but it is hard! But what about the people who don't have those options? They shouldn't be saddled with second rate, only "human" doctors. It's time for doctors to start being part of the solutions instead of the problems.
The question is, does the treatment work?
Hydrocortisone was one of the first treatments studied for ME/CFS in a double-blind fashion. As far as I am aware, the results were: low dose replacement was ineffective, high-dose replacement was effective (from a statistical standpoint) but it caused adrenal suppression.
The researchers concluded the risks outweighed the modest clinical benefits. To my knowledge, all the top ME/CFS docs, such as Dr. Peterson, agree with this conclusion and never use oral corticosteroids for this disease.
To my knowledge, DHEA has little to no evidence to support its use here.
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