The text I'm about to paste below doesn't come from me. It's written by a man I've known for over years. He used to work as a researcher in endocrinology. He's not my treating physician in any way, but knows more about me than any medical doctor I've seen over the last few years. He's a very busy man, but has been kind enough to take of his time to help me out. I thought I'd post this here in order to help others. There's a first second and third part.
This letter below that you wrote points out the problems for me in trying to communicate these complicated issues with you in the Internet. You did not understand my point and it would be very difficult to try to explain the issues.
One reccuring issue for you is this term 'adrenal fatigue' - actually most of the problem is semantic - this term is used in many ways to mean very different things - with this being further complicated by the fact that there is no consensus on any of the basic terms and references.
I use Jefferie's basic definition which was a simple reference to an inadequate Adrenal response - which most often refers to Cortisol insuffenciency but of course can also refer to excesses (excess catecholomines).
But simply stating that the Adrenal glands are not functioning optimally does not solve the problem becuase we need to know what in the HPA axis has malfunctioned first (which came first the chicken or the egg). Knowing a simple fact like the Cortisol level is low or fluctuates (which it would be logical to call Adrenal fatigue) - does not answer anything.
To state my model in a simplistic manner is that what is frequently called Adrenal fatigue is in fact a shut down of cortisol functions (notice I did not say exhaustion or depletion of Cortisol) - this shutdown is directly caused by the Pituitary as it recieves information to do this through the Amygdala and Hippocampus - which is recieving the 'flight or fright' signals from the over stimulated Sympathetic system. This is a circular self perpetuating mechanism which can be seen as a partial solution to long term overwhelming stress.
So in my model so called Adrenal fatigue is in reality a natural protective mechanism that attempts to protect us from excessive circulating catecholomines and the potential eventual total collapse of the stress mechanisms.
In most cases this is not an adrenal disease at all. It is a natural reponse of the secondary stress pathways that have kicked in because the primary pathways are no longer controling the stress.
In your case you have fluctuations in adrenal function - it is not consistant - having infinite cortisol tests will not solve the problems because the common theraputic approach to so called adrenal fatigue does not even begin to address the real problems - such as Pituitary and Amygdala malfunction resulting in imbalances in the HPA axis and Sympathetic dominance.
As I said - in your case - I believe that your issues do not start in the Adrenals and that you do not have actual Aderenal insuffeciency - rather your Cortisol functions become depressed becuase the Pituitary is instructing the Adrenals not to produce Cortisol - that is the explanation for many of your Adrenal anomalies - remember your tests have shown many different adrenal abnormalities over time - including radically fluctuating Testosterone and DHEA.
The mechanism I am refering to is similar to what happens when the Insulin receptor sites shut down in the presence of excess Insulin and sugar - this is called Insulin Resistance - a simliar thing happens in a radically inactive individual who has normal Thyroid function but the receptor sites shut down becuase there is no need for energy production - I call this Thyroid Resistance - this happens in all cases of under utilized musculature and muscle wasting. These are secondary functions that kick in as we lose our primary balancing functions - they are not diseases they are adaptive mechanisms.
To explain these issues is much to complicated.
Let me give a quick overview of my analysis of your case - because of certain genetic and inherited factors you have a tendency toward exagerated and inadequate stress responses = and as you have faced ongoing stress challenges (most of which are self generated) you have overstimulated your Amygdala and SNS leaving your Parasympathetic system depressed and unable to regain balance and homeostasis throughout the HPA axis - leaving you in a constant over reved state - you have lost the ability to calm yourself and this even further perpetuates the problem - so you become like a dog chasing it's tail - going around in a non productive, exhaustive circle - it is like being on a thrill ride that you can not get off of.
The big problem is that this process keeps on perpetuating itself and the Amygdala keeps on sending alarm signals.
A short hand way of saying this is that this is not an adrenal problem - it is a brain problem with the biggest factor being the Amygdala - it is stuck on overdrive because of the excess catecholomines - which are being released because the Amygdala itself is captured by the excess circulating catecholomines and sends signals for a stress response - and so it goes round and round.
Selye and many others have been pointing out for many years how the stress response when over activated can cause a breakdown in the stress system and create chronic exhaustion of the entire organism.
This is one of the most common disease patterns seen in modern times and manifests in many ways - but there are common factors in all the cases which boil down to the fact that some people are overwhelmed by stress and have great difficiculty recovering from major stresses or from a series of small stresses.
Once the breakdown occurs even ordinary day to day stressors can further deplete the individual. So the tendancy toward inadequate stress response is there and is easily further challenged by the most ordinary events.
As you can see this is much too complicated an issue to be discussed in this limited forum. I will get someone to help me search for a description of this process in more depth than I can give it - and send it along to you.
There are no easy answers to the questions about what to do about your health problems - as far as the basic question of - are there any workable methods to lessen or cure symptoms like yours - the short answer is yes - but with a BIG caveat - that caveat being cure is possible but not very common - only a small percentage of individuals actually recover - a larger percentage get reduction of symptoms to greater or lesser extents - a certain percentage spontaneously remit - the problem is that even in those who do recover a large percentage often have a set back the first time one faces a major stress challange.
There are many techniques that have been devised in the past and in the present for resolving the Amygdala overfunctioning - all of those methods are complicated and take a lot of focus and committment.
All of the methods that I know of can not be done by people with severe cases becuase these methods take energy, committment, and focus - all of these are qualaties that most people with stress disorder do not have.
I can not go into the multi-demensional aspects of this problem and it's solutions because of time problems - below is a link to a web site of a Dr. Gupta who has devised a sysem for retraining the Amygdala - he describes the mechinism of the malfunctioning of the HPA axis and the over stimulation of the Anygdala.
He is refering to CFS but the mechanism is the same in all stress induced diseases.
There is a very direct link between your diseases and CFS - the possible difference is the state of the disease and the reasonns for why one may have contracted stress inadequacy - it is generally belived (which by the way I do not agree with these ideas) that CFS is triggered by a Viral infection - but viral infections are only one component in the potential breakdown of the stress mechanisms - in your case it is not clear if a viral infection triggered or contributed to your disease pathology - you did mention that you have EBV antibodies didn't you?
There are many infectious states that can set one up for a breakdown of the stress responses - but whether this is a factor in your case is not clear but neither is it essential to know this to understand what has happened to you.
The triggers can be many but the results are similar in all cases and all have the characteristic of the stress response being over expressed - with the result being that the Amygdala is stuck at the on postion and keeps sending signals of alarm which keeps on releasing catecholomines and we never calm or relax suffeciently to heal - rest, calm and composure are the natural ways in which the stress system recovers. But when the Amygdala is steuck on alarm mode there is no recovery.
Read Dr Guptas essay repalcing the term CFS with stress disorder and tthen the mechanism of how this theory applys to you will be clear.
Try to understand the charts he has made as those charts are a short hand manner for understanding the pathways of the stress response.
I know this article is long and has a lot of new ideas for you to digest but if you can understand what he is saying you will understand your own case.
I doubt that dr Guptas retraing program would be helpful for you - it is very rigirous and few can do it - but the important thing is not that but that he has eazily and simply explained the basic problems in the breakdown of the stress response system.
Try to understand these articles along with Dr Gupta's essay and you will have a clearer picture of your problems - what has gone wrong.
The adrenal issue you often refer to is not a cause (although it causes symptoms) it is itself an effect of the underlying brain and nervous system malfunctions.
These types of malfunctions of the stress response are related to the adrenals and interact with the adrenals but the underlying pathology is not caused by and can not be corrected by trying to correct adrenal anomalies (especially by HRT) - but the adrenal issue like the brain issue can be indirectly approached through the conscious mind - and it's choices - the hypothalamus. amygdala, adrenal glands, etc. function outside of consciouness BUT they are effected by consciouness - in fact as Dr Gupta says this syndrome is a complicated conditioning process that reflects a continual dance between the unconscious processes and the conscious mind.
What should be a beautiful, graceful, elegant, dance has become a kind of wild floundering around that is not only causing symptoms, it is effecting the quality of life which keeps us from achieving our goals.
If you will remember these are all the same issues I have been discussing with you since the earliest days of our correspondence - I have sent you this article on the HPA axis several times before.
In the past I always emphasized the ANS and the overexpression of the ANS and the suppression of the PNS - perhaps by emphasizing the brain structures responsible for these malfunctions of the ANS you can come closer to understanding your condition.
SNS dominance and PNS suppression is a complicated conditioned response which has been created by several closely related brain structures that are responsible for activating and controlling the stress response.
Much of this is simply an unconscious habit that keeps perpetuating itself and will continue to do so until the brain learns a new more effective and effecient way of dealing with stress.