Low Dose Cortef/Hydrocortisone for Adrenals – Jeffries Protocol

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Waynesrhythm, Mar 23, 2007.

  1. Waynesrhythm

    Waynesrhythm Member

    Hi all – This is my first time posting to this board. Have been enjoying perusing this board for a few weeks now and feel grateful to everybody who takes the time to so generously share their experiences.

    I’m starting this thread because I’ve noticed there has been no reference to the book “Safe Uses of Cortisol” by William Jeffries. I considered this book (and still do) the most authoritative literature on low-dose hydrocortisone I’ve been able to find. Dr. Jeffries devoted his entire career to researching and developing a low-dose hydrocortisone protocol for people with CFS, FM, arthritis, post-viral syndrome, mononucleosis, HPA axis dysfunction, hypoglycemia, and many other conditions including infertility. He found even marginal adrenal insufficiency can have big effects. Some highlights I’ll mention for now:

    1. The average body makes approx. 40 mg cortisol/day. If you have adrenal insufficiency, the adrenal glands are constantly trying to increase cortisol levels, and being unable to do so, virtually never fully rest. By supplementing with enough cortisol (Cortef) to bring levels back up to normal, the whole body starts to function better and the adrenal glands get a chance to start resting and hopefully start rejuvenating.

    2. The average dose necessary to bring cortisol levels to normal are 20-30 mg per day. As long as you keep the amount below 40 mg/day, your adrenal glands will not shut down, which is a problem with higher dose supplementation. He goes into detail the history of cortisone, and how the initial promise of it became obscured when early high dose supplementation created many of the problems that doctors are currently concerned with. Unfortunately, most doctors know nothing about the safety of lower doses.

    3. Cortef / hydrocortisone has the same molecular structure as our body’s natural cortisol. Prednisone and most of the other synthetic “souped-up” products that are often prescribed are on average about 4 times more potent than cortisol. Each pharamaceutical company had to come up with their own unique molecular formula so they could get a patent and get in on this market. Supplementing with these can be very problematic on a long-term basis.

    4. He has little confidence in any of the current tests to measure cortisol levels, including the Cortrosyn Stimulation Test or the Adrenal Stress Index test. He says our cortisol levels fluctuate too much to get an accurate snapshot of the true status of adrenal function. He instead relies primarily on a patient’s response to a trial supplementation. He starts out at 20 mg/day for about 1-2 weeks. If no improvement is noticed, he increases it to 30 mg/day. If there is still no improvement in symptoms, he usually determines that adrenal insufficiency is not the problem, and takes another 2-4 weeks to gradually withdraw the supplementation. In other words, if you don’t need it, your body won’t respond to it.

    I’ve been taking 20-25 mg/day of Cortef for about 8 years now and I believe it is the difference between my being about 20-25% functional as opposed to being about half that or less. All the “side effects” have been good. To name a few: better digestion, better stress response, increased ability to relax, better sleep, and more.

    I’ve experimented with two other brands of hydrocortisone. I believe one was a compounding pharmacy product and another a brand name I can’t remember. Neither of them were good for me at all (gave me a very disconcerting feeling). Only the Cortef works for me.

    My initial dose of 5 mg felt like I had drunk too much coffee and went outside and walked like I hadn’t walked in ages. Realize now that my body was so unused to having this degree of energy coursing through my system, and needed time adjusting to it. But gradually increasing the amount over a two week period brought me to appropriate and comfortable levels. I now feel very confident that this is both safe and highly beneficial for me.

    I’m a big believer in researching things before trying them out. For those of you who have been contemplating any of this, perhaps this will be an incentive to take that next step in your research.

    Wayne
    [This Message was Edited on 03/22/2008]
  2. bigmama2

    bigmama2 New Member

    and welcome! I recently purchased this book. it was expensive ($45) but worth it. you recapped the important points nicely. my brother is taking 20 mg of cortef and is doing much better - it has lifted his severe depression, and he is slowly becoming more functional.

    I take 2 different natural adrenal glandular products (Miladregen and isocort) and am doing much better too. (meaning i'm not in bed exhuasted all day) i am functioning better and getting more stuff done, but still have a long way to go to getting back to my pre-cfs self.

    my brother decided to go the prescription cortef route, and i decided to do the natural route. we both wish we knew this stuff YEARS ago.

    wayne please tell us more about your experience w cortef, drs, illness, getting better, etc. OH! i just read your bio and saw your beautiful photo. wow youreally have been thru alot. i'm glad you are improving. from your bio you have a cool attitude.

    bigmama2
    [This Message was Edited on 03/24/2007]
  3. TwinMa

    TwinMa New Member

    I was taking Cortef for about a year and felt so much better. I started on 5mg and worked my way up to 20mg/day. This was prescribed by FFC (Fibro & Fatigue Ctr) and described by them as a "band-aid" temporary fix.

    While on the Cortef, I felt like a normal person again. I stopped going to FFC for too many reasons to go into, but found that my regular PCP would not prescribe Cortef. She said it would cause osteoporosis. I argued that I would rather feel good now, than be concerned about a possible broken hip when I'm 70. What about quality of life NOW? She wasn't comfortable about it, so she sent me to an Endocrinologist.

    I next went to the Endocrinologist. She also said to get off Cortef due to the nasty side effect of osteoporosis. She said it wasn't just a broken hip issue but that hydrocortisone could cause bone density problems all over the body. You could just break a finger or toe with no particular extra stress.

    She gave me a Cort-Stim test and found that my adrenals were surpressed.

    I have been off Cortef for about 3 months now. I would really like to go back to it, but my docs are deadset against it. It helped my headaches, my arthritis, my energy level and general sense of well-being. I don't feel as bad as before I started the Cortef, but would like to feel better. My headaches are much worse now.

    Does Jeffries talk at all about the osteoporosis side effect?
  4. Daisys

    Daisys Member

    I haven't got a copy of the book, but have read many discussions based on quotes from it (from another forum--some hormone literate laypersons).

    I'm on 15mg. of cortef. The trick is to get the support without suppressing your own adrenals to the point that they atrophy. I had thought 20mg was the top long term dose recommended for support without suppression, but of course could be wrong.

    Also, the thyroid and adrenal glands pick up the slack for each other (or try to) so if one system is exhausted, the other needs support to. I'm also on armour.

    One week, I forgot to put the half pill of cortef in my organizer, and so was only getting 10mg. I was very shaky and weak, until I figured the problem out. So, I know it's been a big help for me.

    I've had a bone density test, and I'm normal for my age. An integrative physician would be familiar with this treatment.

    Good thread, Wayne
  5. bettydroop

    bettydroop New Member

    Thanks for your info-
    I am taking 15 mgs a day and can say that its been the most helpful for me, so far and I had NO idea until I went to FFC that there even was such a thing and I read ALOT! Im searching up stuff all the time and I didnt know anything about it. The Doc told me to stay under 20 mgs as well -seems like that has been the norm BUT HEY>> if I could take more I would. So you say upper dose can be 40 mgs???? Thats good news, but of course I know... I wouldnt do anything until I talked to my doc about it.

    As far as the osteo, I think she said that in the future I should go do a bone dens test, but shes not that worried about it with this kind of dose. I dont care if I got osteo, eee gads I dont have a lot to work with here- in terms of anything helping right now -so I will take what I can get !! HA!!

    To the gal that posted about Dr not Rxing the Cortef now like the other Dr did... I hope you can go to someone who will, cause I think if it helped you once - you really needed it. If thats what you want to do then I HOPE that works out for you! Good luck!

    WAyne- Glad the cortef works for you! It helps to hear positive about it and that you have been taking it for so long etc. I would be happy to raise my dose too.

    I tell ya when I first started taking it- it was like night and day - I made me able to move again. yee haw.

    Bdroop
  6. Clay2

    Clay2 New Member

    I just had a saliva test that showed cortisol problems followed by my doc's blood tests 10 days later that show I'm perfectly normal. My doc thinks I should get off the internet and not order my own tests. I think I will make an appointment Monday with the local FFC.

    I'm convinced this is going to give me a boost.
  7. Waynesrhythm

    Waynesrhythm Member

    Twinma – I don’t currently have my copy of Jeffries’ book, so can’t look up any statements he’s made re: osteoporosis. However, Teitelbaum, who sometimes quotes Jeffries and for the most part appears to follow his protocol, seems to downplay this concern. As a precaution, I think he advises supplementation with calcium.

    From my thinking, if cortisol levels are brought up to normal, and helps the body function in all ways, couldn’t a hypothesis be made that this could have an opposite beneficial effect, and actually have the capacity to strengthen bones?

    Betty, re: the highest amount recommended, I’m remembering that 40 mg/day is reserved only for those with advanced adrenal atrophy (Addison’s Disease), where the glands have lost at least 90% of their original functionality. This is actually a very rare situation. Sadly, this is often the only adrenal condition that is treated by conventional endocrinologists.

    For those seriously considering this protocol, I would advise reading Jeffries’ book if possible. He comes across as somewhat of an old time doctor and an excellent clinician. He didn’t overly rely on diagnostic tests and he listened to his patients. His thinking and reasoning reflect a common sense approach to his work. All in all, a sound and reassuring treatise.

    When well meaning doctors exhort us with alarming warnings, I think one or more of the following questions might be in order?

    1. Are you familiar with Jeffries’ work on low-dose cortisol supplementation?
    2. Do you know how much cortisol the average body makes on a daily basis?
    3. Are you certain there would be adverse effects if I supplemented well below an average daily production?
    4. Have you worked with patients or read any medical literature on anybody who has exhibited adverse reactions to low-dose hydrocortisone?

    I’m guessing that most of the answers to these questions will be no. Which highlights an interesting phenomenon I’ve noticed. Very often people who have the least amount of knowledge on a given subject end up having the strongest opinions. Isn’t this often true of some of our friends and co-workers who don’t understand our illness, yet have very strong reactions to it? Just an observation.

    Wayne

    P.S. I just remembered another significant improvement I experienced with cortef. I was finally able to bring my blood pressure up to normal, and enjoy the benefits of that. I continually monitor my blood pressure, and I feel as long as it stays in the normal range, I am not taking too much cortef.

    [This Message was Edited on 03/24/2007]
  8. victoria

    victoria New Member

    I took it a about 5 years ago for about 8 months, then went off... helped eliminate afternoon naps.

    I'd bought the book back then, didn't know Dr. Jeffries was retired so got what I thought was his office ph # from directory assistance since I thought I'd try to see him directly...

    instead, I got him on the phone at home! I think he was about 85 at the time, he was super nice, talked about 1/2 hour to me... also told me that he himself had been taking physiologic dose since he was about 50 along with thyroid med after recognizing the same symptoms in himself as he saw in his pts.

    all the best,
    Victoria



  9. romalaw

    romalaw Member

    I'm on 5 mg of prednisilone, have been for 4 years. It has made the difference between me lying on the couch most of the day and being able to function. I think of it as my miracle pill. In addition to energy, it has controlled my hypoglycemic attacks (it raises blood sugar). It is prescribed for me by my holistic MD. My other docs always have a fit when they find out I'm taking it, start preaching about the side effects. It's a tradeoff, I know, but one I'm willing to pay to have some semblance of a life.


  10. victoria

    victoria New Member

    if it's a physiologic dose, there shouldn't be any trade-off...

    imho, no different than thyroid. If one doesn't have enough, one gets osteoporosis and/or other problems, just as if one gets too much. Balance is everything.

    all the best,
    Victoria

  11. deb_46

    deb_46 New Member

    After being left hypo for 3 long years before getting on meds by ignorant doctors my adrenals got exhausted in the process as they were trying to help me keep going when the thyroid no longer was producing.

    Finally found a place to treat adrenals and after about 15 months of marginal improvement found a site and learned about Jeffries and realized I was not on enough cortef. They would only let me take 10mg and that helped some but still could not exercise or was put down for days. I've had to resort to self-medicating and have been doing so for a couple of months now and am up to the 20mg and I feel almost back to normal. I know I have a ways to go because my body has alot of healing to do and I'm taking it slowly still pretty much abstaining from much exercise as don't want to cause any setbacks.

    I now know why I've still had horrible hypo symptoms while on meds and my labs at the high end. Without enough cortisol to help push the thyroid hormone into cells and tissues it just pools in the blood and labs will look OK but you will still have hypo stuff going on.

    Please don't anyone stone me for saying this but sometimes when doctors are leaving you sick you have to take matters in your own hands. I've given docs 3 years of my life and the loss of a job I loved because they couldn't figure out what was wrong or didn't want to take the time because it wasn't an easy call. I get my cortef online from England with no problems and its inexpensive which is great to boot.

    I'm really concerned that there are alot of people on this board that are suffering from hypo and or adrenal problems that are not getting properly diagnosed and treated. I kept getting the CFS logo stamped on my forehead and I kept telling them there is something within my body that is not functioning properly anymore. After 45 years of having tons of energy and hardly a sick day in my life going to not being able to get out of bed for 3 years then something is not working right. It's been a long hard road but for the first time in over 3 years I think I see the light.

    Thanks Wayne for starting this thread, I think it has the potential to help alot of people. Good luck as well with your recovery and healing and I really think as your body heals you will function at a normal level again.

    Deb

  12. lea

    lea Member

    Is cortef a brand or generic; does it have to be compounded for you?
    thank you
    best,
    ane
  13. grace4u

    grace4u New Member

    Does any one else have this problem?? The allergy spec says Advair (a steroid)My CFS spec keeps insidting cortef. I have tried every which way to take it. I am not trying to be noncompliant, I just can't see how being so depressed, hatefull, and runnihng off what few people that I still have in my life could improve my health any. I have never had any luck taking an antidepressant. Their answer to that is to take both. I would like to hang on to what little independence I still have which lately means simply getting myself to a doctor's appointment,which isn,t even happening lately. I have been on Cipro, and Valtrex for about two months. After about 18 months of care at CFS center I was feeling better, Lately I am all but couchbound again. ANY CLUES?? tHE ANTIBIOTICS?? tHE 2 INCHES OF POLLAND ON MY CAR?? aM i IN DENIAL?? iS THIS HOW fm/cfs WILL ALWAYS BE?? i AM SO DEPRESSED AND SCARED. gRACE. wOULD CHAT HERE MORE OFTEN but just too tired and this chair and any chair just kills my back.
  14. Forebearance

    Forebearance Member

    Hi, Wayne!

    Welcome to the board!

    Sure, I have this book and I took low dose Cortef for years. I think it was about 6 or 7 years.

    I have some comments to add:

    If you need it, then it really helps you.
    If you are not overdosing, my understanding is that it shouldn't cause osteoporosis.
    It's important to make any changes in hormone levels very gradually so you don't stress your body.
    Individuals vary widely in their sensitivity to hormone supplements. It's impossible to state a dosage that is right for everybody. A person has to experiment to find the dose that is right for him/her.
    For example, the right dose for me was less than 1/100 mg.
    I have heard many people with CFS who take between 1 and 5 mg of Cortef. Perhaps we are more sensitive on average than the rest of the population.

    If you go on Cortef, you need to be aware of the symptoms of overdose. The early signs of overdose include:
    increased acne and oily skin
    increased facial hair
    mood disturbances, like feeling aggressive or depressed

    It's important to keep an eye out for these things, because if you take too much hydrocortisone, and keep on taking too much in spite of the early overdose symptoms, you can develop permanent overdose effects, like
    deepening of voice
    eyebrow ridges

    I'm not trying to scare anyone off taking it, but I just want everyone to be aware that hormones are powerful and need to be treated with respect.

    After taking it a long time, and being helped greatly by it, I finally got to the point where I couldn't take any without causing myself acne and feeling grouchy. So I figured that I must not need it any more. So perhaps my endocrine system is getting better.

    I wonder, grace4u, if you might be on the more sensitive end of the spectrum of reactions to hormone supplements.

    Have you ever tried taking a very, very tiny amount? It's possible that there might be a dose that is enough to help you without causing you the bad side effects.

    People who are sensitive to hormone supplements have to use a lot of finesse to find the right dose.

    Or maybe it just doesn't agree with you.

    I do still take DHEA, which is a precursor to many hormones. My understanding is that it is milder and less likely to cause a bad reaction than the Cortef (hydrocortisone).

    Love,
    Forebearance
  15. Waynesrhythm

    Waynesrhythm Member

    Hi romalaw,

    I agree with Victoria that taking Cortef needn’t be viewed as a tradeoff. If one were to review some of the Jeffries’ literature, the safety and efficacy become pretty apparent. And a decision to supplement could probably be looked at as being pretty similar to supplementing for low thyroid function. I think the way we approach this kind of therapy is important. It sure feels better to me to take something I feel is very safe and highly beneficial as opposed to having lingering concerns about it.

    I think Deb’s post illustrates pretty clearly the significant consequences of not supplementing adequately. Adrenal insufficiency appears to lead to a lot of the symptoms of CFS/FM. I also feel that a person with CFS/FM who didn’t have adrenal insufficiency to begin with can become vulnerable to it because of the tremendous stress this illness puts on our bodies.

    Hi lea,

    Cortef is a brand name. I think it’s made by Upjohn. As I mentioned earlier, the compounding and generics didn’t work for me.

    Hi Deb,

    Thanks for your helpful post and your well wishes. I agree with you that there are probably a lot of people on this board who have adrenal insufficiency and are not being properly diagnosed and treated. Would you be willing to let us know the name of the online pharmacy where you get Cortef at a good price?

    Perhaps at some point, I’ll share my story of what it took to secure a Cortef prescription for myself. It wasn’t easy, but sometimes the harder a person has to fight for what they believe in, the more grateful they are when they finally get it.

    Hi Forbearance,

    Thanks for your welcome and your contribution. Very helpful. Your experience reminds me of my own with Clonazepam. I found it to be very helpful with sleep for several years before realizing I needed to get off of it. Created an extreme hypersensitivity to external stimuli. This is all a good reminder that what may be good for one person may not be good for another. And what may be good for us today may not be good for us tomorrow.

    Regards to all, Wayne

    [This Message was Edited on 03/26/2007]
  16. deb_46

    deb_46 New Member

    Hi Wayne,

    The place I am getting my cortef from is www.mastersmarketing.com. to find it look under hydrocortisone, I order the 10mg and 20mg. I get my orders in about 10 days with no problems.

    Another great place I have found in case you have not is www.stopthethyroidmadness.com. They have great forums on adrenal and thyroid issues with great mods that have been through everything we are going through and answer any questions you have. This place is where I learned that I was not on enough cortef and was not going to get well unless I increased.

    When I had been on the 10mg for so long with no much help it was compounded and I think that was part of the problem according to the STTM site compounded does not work as well as you found out.

    While I'm giving sites have you ever found www.drrind.com he has a great site with a metabolic chart with symptoms of adrenal and hypo and helps you determine whether or not you have one or the other or both going on. I've found it very helpful as well.

    Hope this helps you and any others needing it.

    Deb
  17. deb_46

    deb_46 New Member

    bumping for Wayne
  18. Forebearance

    Forebearance Member

    I forgot to mention one more thing. If you search through the past messages, you will find many discussions about Cortef and other kinds of adrenal support.

    It's one piece of the puzzle to healing from CFS. There are additional pieces like: other hormones, dietary things, liver support, mitochondria support, heart support, immune system support, vitamins and minerals, etc.

    Then there's the whole killing yeast, killing bacteria, killing viruses stuff.

    And the latest thing that a few of us are trying: fixing the methylation cycle.

    Whew! It's a complex process to get well from this.

    Love,
    Forebearance
  19. getwellgirl

    getwellgirl New Member

    Just wanted to add that taking low dose Prednisolone gave me back some quality of life that I cannot get in any other way and I was on 2.5mg daily for 4 years (5mg in the first year).

    I have been able to come off it for a couple of months recently after adding Rich's basic protocol to get methylation going but gradually during the 2 months things began to slide back quite badly. I lost my sense of wellbeing completely and just felt almost permanently ill.

    After getting severe panic attacks probably because of blood sugar issues I realised that my adrenals had taken a nose dive again and restarted just over a week ago. I tried h/c first but it has never really suited me, its far too short acting so I get highs and definite lows. This never happens with the Prednisolone.

    However it hasn't been a smooth ride this time, I cannot tolerate 2.5mg now so literally have to cut the enteric coated 2.5mg Pred in half with some scissors. I noticed the panic feelings have completely disappeared within a day or so and so has the excessive adrenaline I kept getting which was really horrible and which I am sure does an aweful lot of damage to our bodies.

    It rather looks like the 1.2mg I am taking is about right. I also need between 1 and 1 1/2 grains Armour and 25 thyroxine which again is a lower dose than prior to taking the methylation supplements which I am continuing with because I seem to be detoxing heavy metals on a daily basis. This is according to 2 toxic urine tests I have done with Genovations.

    The symptoms of overdose of the steroid for me were severe sweating attacks and usually this meant my blood pressure had gone too high (142/92). I would feel quite ill and there would be a pressure around my eyes and my head felt horrible. I would then need a betablocker to bring it back down. Sometimes I would get insomnia too when taking too high a dose.

    I am beginning to get some stability back because that had completely gone away too. Also my exercise tolerance is increasing again and I am beginning to actually feel quite well as long as I don't overdo physical things.

    For me treating my adrenals and thyroid has been the most important treatment of all that I have tried and I have tried most things. With CFS it is highly likely that the problems lie with the HPA axis so the messages don't actually get through. Its not the adrenals themselves that are the problem. Therefore we cannot hurt ourselves because all we are doing is to bring levels back to normal. I think it is really important to monitor blood pressure and blood sugar whilst taking the steroid.

    I do feel I am proof that the adrenal situation can improve and just because one needs adrenal meds for quite a number of years it doesn't mean you need them for the rest of your life.

    Pam
  20. romalaw

    romalaw Member

    Wayne This is a very interesting thread. I wish more folks would view it to hear how it has helped others. As I said, prednisilone gave me back some quality of life-an experience many of you have expressed.

    I am taking a physiologic dose and read Jeffries book early in my illness. It was five years before I found a doc to prescribe for me. One unpleasant side effect for me has been puffiness around my collar bone. Doc said it's from the steroids. Small price to pay, I guess.

    I was also interested to hear from Pam that she seems to be able to daper off. Everytime I try to cut back, my energy tanks.