The Most Logical CFS-Explanation No One Wants to Hear?

Discussion in 'Fibromyalgia Main Forum' started by Ronaldo60, Jan 27, 2013.

  1. Ronaldo60

    Ronaldo60 Member

    Hi Friends, as I near the 20th anniversary of my own accidental "cure," I won't bore you with all the details but please consider: Endocrinologist William Jefferies' treatment and diagnosis of "unexplained chronic-fatigue" 40 years agao, how "mild cortisol deficiency" symptoms along with "non-reactive hypoglycemia" provide the cause and cure for many CFS cases. I know, this involves cracking a few medical articles and learning some endocrinology, and God knows, when I was sick, reading
    and studying weren't even possible for me, either. Basically, a hormone-system that's out-of-whack offers the only explanation for so many varied symptoms. Our two main stress-hormones, cortisol and epinephrine, play a very delicate balancing-act, as I found out firsthand, but mainstream medicine is not so interested!
  2. Thank you for sharing what helped you... I too know that our endocrine system is a very delicate system and if one of our hormones is out of whack, they ALL are out of whack because it causes a domino effect. Having had thyroid cancer years ago gave me a crash course on the endocrine system that I never asked for.

    I do think there could be many of us with CFS/ME who could be helped dramatically if our hormones were balanced... which is no easy thing... Esp if one has to rely on thyroid replacement hormones because either one's thyroid is not working properly or, as in my case, one doesn't have a thyroid anymore.

    But for most of us, we also have many active viruses that are wreaking havoc on our immune system and every other "system" in our bodies. And many of us have many, many other things going on in our bodies that complicate things even further, unfortunately. But I do think that getting all of our hormones tested and trying to keep them balanced can def help us.

    Problem is, as you stated, traditional docs don't consider this... Even when I used to go to an endocrinologist for many years, all he ever tested for was my thyroid levels... When really ALL hormone levels should be checked because they all affect one another...

    But I'm glad that for you, the hormone issue was the only cause of your CFS symptoms (although I do not think that is true CFS then... I think many are being told they have CFS when indeed they may only have some hormone issues)... And I'm glad that you are well now!

    Thanks for sharing this with us...

  3. Ronaldo60

    Ronaldo60 Member

    Not much hoopla on this, but even the NIH found low cortisol-levels among CFS patients in one study. A virus that won't quit, coupled with some other unusual stress or pre-disposition, can start the whole cascade of symptoms known as CFS. I had 12 out of 15 possible symptoms. If you have inflammatory issues such as joint-pain, IBS, etc., along with hypoglycemia-symptoms (headache, brain-fog, rapid heartbeat, etc.), a likely scenario is "mild cortisol deficiency." A shot of hydrocortisone and long-term, low-dose prednisone was my cure, mostly on my own but with Dr. Jefferies' encouragement. People can check their fasting blood-glucose level with a simple home-tester and non-reactive hypoglycemia can be treated with one of the forms of cortisol. Good luck!
  4. MicheleK

    MicheleK Member

    The studies on ME/CFS show that our Cortisol is high when it should be low and low when it should be high. This is why many of us are up at night. Our cortisol is high then when it should be lowest.

    I am right now being tried on a low dose pregnisone therapy because even a small amount seems to give me energy and clears my head. It took me over three years to get the doctor to try this on me. But after three years of getting put on pregnisone for inflammation on average every 6 weeks, the doctors finally see that my body reacts to the drug well even though my lab tests don't show the need for it.

    So far it is helping and I intend to continue for the full month trial to see if it will help me stay out of relapse. Of course I am pacing my activities also.
  5. IanH

    IanH Active Member

    You are quite right in saying that about 50% of people tested have morning hypocortisolism. However most of those have a resolution during the day. The same people have Adreno-corticotrophic hormone (ACTH) depletion throughout the day. Since ACTH (pituitary) signals the release of cortisol it is the ACTH which is a problem in most people with ME/CFS. There is a small sub-group who appear to have some adrenal insufficency but this may also be an effect or a different pathology.

    It is known that a persistent infection increases IFN-alpha which in turn increases IL-1 which inturn reduces ACTH output.

    So most of the evidence says that infective process/inflammatory signalling is the start of the hypocortisolism.

    Saying that ME/CFS is caused by reduced cortisol output is like saying ME/CFS is caused by reduced ATP synthesis or reduced glutathione output. NO! These are all measurable effects but in themselves do produce some syptoms which we see in ME/CFS.

    If you take prednisone it will increase your cortisol output.

    I would not recommend taking prednisone or any glucocorticoid in ME/CFS. You simply cannot keep that up because it will cause various organ damage. A temporary treatment with glucocorticoids may reduce SOME symptoms but cannot cure ME/CFS.

  6. Ronaldo60

    Ronaldo60 Member

    ....a simple shot of hydrocortisone. I was given this along with prednisone, originally for acute asthma (doc didn't know of my long-term CFS) and my "head was cleared" in exactly 2 days, then by day-3 slept soundly (first time in about 6 years), and awoke to every symptom gone completely. When symptoms began to slowly return 2 weeks later, I realized I hadn't just knocked-out inflammation with a "steroid," but had actually treated a deficiency. Ciao!
  7. elliespad

    elliespad Member

    I've been sick with CFS/Fibro for 25-30 years. Disabled since 1989, following the birth of my second baby. I was HYPERthyroid, following the birth of my first baby, later to become HYPOthyroid, with autonomous multinodular goiter. Later DX. with Hashimotos. I had 2 thyroid surgeries and am now completely THYROIDLESS. I started on Hydrocortisone, 5 mg. 4 times a day, shortly after my second thyroid surgery.

    It has helped me to tolerate a replacement dose of Thyroid hormone, as I have Adrenal Insufficiency. I've played with the dosing and timing of dosing and find I sleep better if I take a dose at bedtime. If I miss a dose of Thyroid or Hydrocortisone, I don't notice much of anything. Most people on the Thyroidless board, notice right away. I think I just operate at such a low level that, what's the difference?

    I had an ACTH Stim test once, and following the test, I remembering reporting to my doctor that I felt wonderful for a few hours. Don't remember if I felt wonderful mentally or physically, too many years ago.

    So, Ronaldo60, I'm curious, what dose are you taking? Any observations on my situation.
  8. Juloo

    Juloo Member

    Yes, I agree that a hormone system out of whack plays a part in CFS.

    But the next question is...WHY is it out of whack?

    I have treated the situations you describe, but I am not completely well. I would guess these were approximate 10-20% of the problem. And that's being generous.
  9. Ronaldo60

    Ronaldo60 Member

    And I would say that a person with severe diabetes may get back to almost-normal health by taking his insulin, although technically, that's not a "cure." After taking insulin, that person may someday, through good diet and exercise, be able to wean himself from using the drug. That's one analogy to this cortisol scenario. Dr. Jefferies would have disagreed with you, as he would routinely prescribe 20mg hydrocortisone/daily for many cases of "unexplained chronic fatigue," this being the exact equivalent to the 5mg. prednisone I "discovered" as my regimen for about seven years. Jefferies himself used the daily dose of Cortef for many years, and he was very active (including skiing) into his eighties! His is a fascinating story, a WWII flight-surgeon who came back from the war to do the first clinical studies using the hormone.
    By the way, my non-reactive hypoglycemia never resolved during the day, except when taking the small dose of prednisone, which normalized my levels.
  10. Ronaldo60

    Ronaldo60 Member

    Interesting the dose of hydro. you're taking is exactly what the esteemed endocrinologist Jefferies used to recommend for what they called "unexplained chronic-fatigue" back in the day. Also interesting that it's the exact equivalent to the 5mg. prednisone I took daily for about 7 years, slowly weaning-off finally to nothing since 2001.
    I recommend to you Jefferies' book, "Safe Uses of Cortisol" where he describes treating many patients such as yourself. His personal story is very interesting, also. This book became my Bible after my accidental "cure" from hydro-injection and prednisone given for asthma in '94. I corresponded with Jefferies, and he was very generous with his time and was my mentor in understanding this whole amazing stress-hormone scenario.
    Wonder if you've ever had a hydro. injection? That's what jump-started things for me, I'm sure. I had a monster case of CFS following a very stubborn respiratory-bug during a time of crazy prolonged stress. It got steadily worse for four years, then the last three were just twilight-zone time, so bad!
    Good luck!
  11. Ronaldo60

    Ronaldo60 Member

    Well, it's been documented that many viruses, including influenza, lead to cortisol deficiency. Prolonged stress of any kind, initially causing raised cortisol, can lead to low levels, also. When cortisol gets too low, epinephrine (fight-or-flight hormone) kicks in. Cortisol is necessary for maintaining normal blood-sugar levels, and remember that glucose is the brain's only fuel. This explains the brain-fog symptom that's so common with CFS and also hypoglycemia. The cortisol-deficiency scenario for CFS is the only one that offers the explanation and treatment-option.
    My mentor was Dr. William Jefferies way back in '
    [This Message was Edited on 01/31/2013]
  12. Juloo

    Juloo Member

    I don't need it any more. But it was helpful at the time. I keep licorice root capsules in the house just in case.
  13. ljimbo42

    ljimbo42 Active Member

    I just want to say thank you for giving me another direction to look!

    I knew there was something I was missing and this just might be it. Thank you for sharing your experience, it is greatly appreciated!! All the best-jim
  14. Ronaldo60

    Ronaldo60 Member

    Don't know your situation, but the whole stress-hormone issue with CFS is like the "elephant in the room," you know what I mean? And, it falls between the cracks of traditional medicine and alternative, neither side wanting to deal with it, either because of plain ignorance, prejudice, or lack of profit-motive. Why do so many more women have CFS? Why does it often follow a virus, illness, accident, or other severe stress? Why does it seem to hit people more prone to allergies or other sensitivites? Why are so many of the symptoms both inflammatory and hypoglycemic? Cortisol is the only hormone essential for life, as Dr. Jefferies used to say, but the synthetic forms have been so misunderstood, and with such an unfairly-tarnished reputation. Jefferies used to recount how cortisol (hydrocortisone) first became synthesized, and it's a fascinating story: Some women with arthritis noticed their symptoms improving during pregnancy, and it was determined this was due to raised levels of cortisol, along with other hormones!
  15. ljimbo42

    ljimbo42 Active Member

    I'll give you some back ground on me. I've been disabled with cfs and fm for over 20 years. I have treated every problem I have, aggressively without success. What I have treated includes leaky gut, candida, bacterial overgrowth, and the methylation cycle as well as profoundly boosting my immune system to deal with possible viruses with very,very little lasting success.

    I can't stress enough how aggressively I've treated these things to no avail! I am very knowledgeable in the field of alternative medicine that's why I knew I had to be missing something. I saw your post and a light bulb went off in my head. Since I saw your post on Jan. 31 I have done about 20-25 hours of researching adrenal fatigue.

    What I have found so far makes a lot of sense and It confirms what you have been saying here. I am not surprised at your recovery, it is rate in line with the reading I have been doing! I wish I had a doctor to give me cortisone or prednisone, but I don't rate now.

    I am trying the alternative root and if that don't work I will find a doctor some how. I am using or have ordered, b-5, pantethine, licorice root, isocort(source of cortisol), DHEA, and prenenolone for my adrenals. I was amazed that the pantethine(a b-5 co-enzyme) wiped out my severe allergies (primarily runny nose-24/7) within 2 days! Do you have any pointers for me?
    [This Message was Edited on 02/04/2013]
    [This Message was Edited on 02/04/2013]
  16. Ronaldo60

    Ronaldo60 Member

    Glad you still had a light-bulb to go off; I was saved only by accident.
    I'd be interested to know if a specific illness started your overall decline in health, and if poor sleep has been a long-term issue. Without knowing you personally or many of your specifics, offhand my impression is that you've been probably going around in circles a while and probably wasting lots of time and $$ on alternative-health stuff.
    One valuable test you can do yourself is with a simple home blood-glucose meter, so you can see if you have non-reactive hypoglycemia which would likely be resulting from low cortisol levels. Just check yourself in the morning on an empty stomach, quite different from the typical hypoglycemia test where a doctor has you drink lots of glucose to see your insulin reaction.
    Dr. Jefferies would have probably given you a two-week trial with HC which I believe is easier with the equivalent 5mg/daily prednisone for 2weeks. It would be the best, of course, if you had your own endocrinologist with an open mind!