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low dose hydrocortisone without impairing immune response

Discussion in 'Other Health News and Research' started by heapsreal, Jan 16, 2013.

  1. MishMash

    MishMash *****

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    How many people have died from sub-clinical adrenal insufficiency? Why do you keep repeating this, when it is a medical impossibility. And how many people have died from stimulation tests? I know you feel sick, but I sense a little bit of hyperbole here.
    Dreambirdie likes this.
  2. Ema

    Ema Senior Member

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    There are so many things wrong with that study that I hardly know where to start...but it isn't even referencing ME/CFS. The patients have Addison's disease and have no choice whether or not to replace cortisol - whether or not it impacts their quality of life.

    It depends on self reported questionnaires which are among the least reliable research tools, it doesn't say anything about co-morbid conditions (if you have one autoimmune disease like AI, you probably have more than one because they go together), it doesn't say anything about thyroid status, DHEA levels (quality of life is often improved by replacing DHEA for Addisonian's as demonstrated in the literature) or the state of the immune system (many people with AI also have total IgG deficiencies or at the very least subclass deficiencies). It doesn't take into account whether or not people were on Florinef and getting proper mineralocorticoid replacement along with their HC.

    Twice daily dosing doesn't work very well for very many people. Three times a day puts a dose in mid-evening which doesn't follow the normal cortisol rhythm. Too bad they didn't test four times a day dosing which seems to work best for most patients with AI on a full replacement dose.

    When people need to take larger steroid doses, it is generally because there are other things going wrong (autoimmunity and/or infection). That may be what is negatively affecting their quality of life but we will never know because this study is limited in focus (like all the studies on this topic) and doesn't address the many facets of living with AI.

    Ema
    Valentijn likes this.
  3. Ema

    Ema Senior Member

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    I've never said that people die from subclinical adrenal insufficiency. I've said that people die from adrenal crisis which is a well documented medical fact. I have certainly never said people die from stim tests...I recommend them all the time!

    I actually feel pretty well these days! That's the whole point of these threads...my condition has improved dramatically and steroid replacement is a big part of that for me. Not sure how you missed that!

    Ema
    Valentijn likes this.
  4. MishMash

    MishMash *****

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    So the researchers did all that work without asking about co-morbid conditions, or current drug regimens? Actually, if they had something like CFS or FM, they would have all probably gotten a temporary lift. These were people who were judged professionally to be AI. Where did you see anything about Adddion's? It wasn't mentioned.

    Ema, you haven't divulged your dosage and the time period you have been taking this stuff. That's critical info in this debate. Coz the longer you take it, the more likely your body's going to need it more and more, as your body stops making it.

    And by the way, the MS patients who take steroids for their flare-ups do so for days, maybe a week, then they rapidly taper. They don't stay on for months, years. These drugs were not designed for that, which is why so few patients actually go on them, or are allowed by their docs to go on them.
  5. Ema

    Ema Senior Member

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    This is an excellent distinction...based on your production of cortisol (low in the AM and high at night) with a presumably normal total daily quantity just shifted completely backwards from an optimal diurnal rhythm, less than 15 mg may be plenty sufficient.

    That is why I don't believe anyone can say anything about any one person's dose without knowing their test results (preferably saliva, serum and stim). For people like EnduringAngel, a low dose works just great. For people like me with very low cortisol all day and night, a low dose would be a disaster as EnduringAngel pointed out as well.

    The body does tend to stop production of cortisol from the adrenals if a large enough dose of exogenous steroid is taken. But this isn't usually permanent and there are reports of people taking steroids for decades and then regaining full adrenal function when the steroids are properly weaned.

    While I totally agree with listening to your body, patients with low cortisol report that starting low and slow is often a nightmare. Because of the feedback mechanism, it is possible to end up with less cortisol after replacement than you may have had to begin with...this leads to the most uncomfortable symptoms like panic attacks, racing heart, palps, anxiety, and anything else you would associate with adrenaline rushes.

    If testing shows one needs a full replacement dose, most people do FAR better by starting right away on a full replacement dose than by trying to work up. In fact, most people with Addison's have such a deficit of cortisol when they finally manage to get properly diagnosed, that they may need a larger dose at first than they will eventually end up on. That also happened to me and I was able to drop my dose down quite a bit after I had been steady for some time. But it takes time to build cortisol reserves and it is easy to deplete them again with the slightest amount of stress.

    Of course this doesn't apply if a full replacement dose isn't indicated.


    I actually really like licorice and find it very useful for me. It helps to keep cortisol in the active form around longer and also has mineralocorticoid effects that were very good for keeping my blood pressure up and my OI symptoms at bay.


    You're right that steroids should never be abruptly stopped and should be weaned. But it is possible to take a large dose as a one time deal and not have to wean down if it is less than three days in duration. This is called "stress dosing" and those of us with Addison's have to learn how and when to increase our typical steroid dose for illness and other extreme stresses. Certainly talk to your doctor about it but you shouldn't have any problem dropping the large dose down to 2 mg like the other doses if you only do it once a week.

    Some people do develop more side effects from prednisolone because it is a medium acting steroid and doesn't allow for the diurnal rhythm like hydrocortisone does. It stays too high at night and keeps other hormones from working properly (like growth hormone). However, some people feel so much better on it than HC that it is worth it. It's all about trial and error and finding what works best for an individual. I have a hard time with the ups and downs of HC and do much better on the long acting steroid dexamethasone, for example. But this would not be typical and can only be determined by working with an informed and knowledgeable doctor.


    This is so true...but so hard! Some doctors suggest wearing goggles to block the light but I've never been able to get into this.

    What sorts of other things have you done to re-set your body clock other than the melatonin supplementation?

    Did you have a sleep study to diagnose the delayed phase sleep? I'm curious how that works because the sleep clinics around here seem to want to kick people out at 5AM which seems like it would miss most of the delayed phase!

    Yes! A friend of mine just went to a new doctor who said that it should be malpractice to prescribe thyroid meds without also checking adrenal function...wish all doctors felt that way. It will be a slow change but hopefully it is happening.

    Yes! Me too! Now that I am on full replacement, my MCS has gotten SO much better. I can even paint now! Though I do wear a mask for the most part just in case. And I got my perfume collection out again last year which makes me ever so happy.

    If 10 mg in the AM is working for you, I see no reason to change. 10 mg seems to work fine at one time for most people. But most people can't use up more than that at once so the body ends up sensing it as "high cortisol" and we all know about the negative side effects associated with that state. Almost everyone I know takes 10 mg as a first morning dose with no problems.

    If you feel a lull in the afternoon though, that would be a reason to consider changing up your dosing.

    I do know some people with similar saliva tests to you that have tried a full replacement dose as a way to try to "hard" reset the HPA axis. I think they have had varying levels of success though. That pattern can be very hard to break. Have you considered phosphatidyl serine? That is meant to resensitize the neurons in the hypothalamus and may be useful at night for lowering cortisol.

    HC seems to peak at about 1.5 hours and most people feel like it has worn off at 3-4 hours especially in the morning hours. Some people are fast metabolizers and burn through HC (like me) and other people seem to find it lasts longer. I've seen reports of a half life of 8-12 hours but I don't know anyone with low cortisol that can go that long comfortably between doses. Of course, I don't know everyone.

    http://www.ncbi.nlm.nih.gov/pubmed/18611115

    I'm glad you have had success with LDN! Some people certainly do...I think about trying it again from time to time myself.

    Very true...

    Ema
  6. Ema

    Ema Senior Member

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    Um, primary AI is Addison's.

    Well, my body had all but stopped making cortisol. That was why I failed the testing and got diagnosed with AI.

    I'm happy to talk about my dosing. I take a combination of dexamethasone which is a long acting steroid and hydrocortisone. I started at my diagnosis in 2010 with 25 mg of HC. Since then I have also trialed prednisone and prednisolone with not much success. Since last Jan, I have taken anywhere from 0.25 dex to 0.5 dex with combinations of 5-20 HC over the past year. I'm currently on 0.5 dex and 5 HC. The dex provides a base of steroid that keeps me steady throughout the day and I use the HC to more closely approximate a morning peak.

    I seem to do better on a long acting steroid without the peaks and troughs many people experience with HC use. This seems to be due to my Primary Immunodeficiency Disease and I am hopeful that my treatment with Hizentra may correct this and allow me to take a lower overall steroid dose in the future. Or really think big and hope that it will correct my autoimmune disorder (as IgG therapy has been shown to do in some studies) and I will be able to correct my AI for good. But either way, I am making progress.

    Well, I disagree with part of that...most MS patients find high dose steroids a pretty continuous part of their treatment regimen unfortunately. But you are right that there are many side effects associated with that approach and it is hard on the body. But I'm not sure what that has to do with the discussion of low-dose physiological replacement.

    Ema
  7. Valentijn

    Valentijn Activity Level: 3

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    Correlation is NOT causation. Just because people who have worse quality of life are on higher doses of hydrocortisone does not mean that hydrocortisone causes worse quality of life. In fact, the more likely explanation is that they have higher hydrocortisone usage and worse quality of life because of a single causative factor - they're sicker.

    It would be like blaming being housebound for causing more severe ME symptoms. Yes, people with more severe symptoms are more often housebound, but they're housebound because they have more severe symptoms. Being housebound is not causing more severe symptoms, but that is the type of conclusion the researchers are drawing.
    Ema, Wayne and Kati like this.
  8. Wayne

    Wayne Senior Member

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    Hmmm, interesting characterization, one I don't recall making. I believe I said it was an easy call for me to be on low-dose HC, because it improved my functionality significantly, and the only "side effects" were good. It's really quite an innocuous part of my life, and I probably don't give it more thought than people who are "stuck" with putting their eyeglasses on each morning.
    heapsreal and Valentijn like this.
  9. Waverunner

    Waverunner Senior Member

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    I wanna throw in a short comment. There are many people who suffer from skin or other autoimmune diseases. In nearly every magazine you can read about the effects of stress and how it increases cortisol (hydrocortisone). I spoke to a dermatologist yesterday and asked him about this paradox. People with skin diseases get treated with hydrocortisone BUT stress also leads to more cortisol output. Why do skin symptoms of patients get worse when they have stress? Actually they should get better because the body puts out more hydrocortisone. He told me, that there are many other effects which they don't understand. It seems that the increased cortisol output through stress exposure does not offset other detrimental effects of stress, which lead to a worsening of skin symptoms.
  10. Wayne

    Wayne Senior Member

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    Hi Waverunner, I've also read how stress increases cortisol output, leading to a variety of problems. I think one stress that is particularly significant for pwME/CFS is a chronic, untreated infection. I've read (and this makes sense to me), that people in the early stages of a chronic infection tend to have higher cortisol levels. But this stress response eventually wears down the adrenals to the point where excessive cortisol production reverses and cortisol insufficiency develops. --- All theoretical of course.
    heapsreal likes this.
  11. Waverunner

    Waverunner Senior Member

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    Hi Wayne,

    good point. Chronic infection can result in adrenal fatigue. In my eyes, it would be so important to have a new, highly sensitive and specific test for infections. As long as we don't know, if we suffer from infections, we cannot be sure, what treatment approach actually works in the long run.
  12. Ema

    Ema Senior Member

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    The skin symptoms may be related to CRH release from the hypothalamus as opposed to simply cortisol. CRH then stimulates ACTH to release cortisol. The CRH also stimulates mast cells to release histamine and other inflammatory cytokines which can aggravate skin conditions. There have been studies that show psoriasis plaques, for example, have CRH receptors.

    Also the other detoxifying organs may not be functioning optimally under times of high stress which can place a further burden on the skin as a means of detox.

    I'm sure it is all more complicated than this in reality...
    Waverunner and Valentijn like this.
  13. Waverunner

    Waverunner Senior Member

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    It would be interesting to see what happens in people under stress, if we lower CRH and increase cortisol at the same time.
  14. Rlman

    Rlman

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    Hi Dreambirdie sounds like you were having constant adrenaline rush due to LOW cortisol. You probably needed 25-30mg or more. The people at Stop the Thyroid Madnes.com and NTH adrenals yahoo group explain that taking HC shuts off feedback loop, so you need to dose enough HC to be full replacement dose, otherwise you are short on cortisol and adrenaline is pumping to help out. Maybe there was another reason for your symptoms, but these are my two cents.
  15. Dreambirdie

    Dreambirdie work in progress

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    This is a very inaccurate assessment. I've written extensively on my disastrous experience with HC, so I don't want to go into it anymore. HC is not for me. Enough said.

    As for the people at the sites you mentioned, they are quite fanatic about taking high doses of HC and thyroid, and pushing their trip about that on everyone who joins their groups. One of the people in the HC group, a woman named Valerie, who is in fact a dog groomer, didn't take kindly to anyone who had a hard time with with high dose HC.

    I lurked on her Yahoo forum a lot back in 2009, looking for info on adrenal fatigue, and I was often shocked by what I saw. One time she actually insisted that because HC was "made by your own body," that meant it couldn't do you any harm. She told someone that even a 100 mg dose would not hurt them! Appalling.

    I documented a couple pages worth of posts about Valerie's and Dianne's prescribing and dosing, (telling people how much to take and when to take each dose, and even supplying a source list of where to buy the HC w/o a prescription from overseas), along with their insistence that HC could "do no harm," which I forwarded to many doctors and health professionals, to warn them about that yahoo forum. I tossed this out a while ago, but I did find one page in a pile of papers, with one of Valeries's typical responses:

    POST FROM YAHOO FORUM MEMBER: "I am also questioning if high doses of HC are best for EVERYONE. We are all different in our biochemistry. Maybe some of us are just too sensitive to HC to be able to handle a larger dose."

    VALERIE'S RESPONSE: (with all her typos included) "OK I have to step in here. FIRST, 40 mg a day is NOT a high dose of HC. In a stressful situatioin your body can make 200-3000 mg of cortisol in a HEARTBEAT. SO whether NORMAL reaplacement doses are for everyoine.. WHY WOULDN'T they be? We are only taking about replacing a BIOIDENTICAL hormon that you are low in. Intolerance of ti is ALWAYS from improper dosing in my experience. Or something ELSE goig on perhaps some supplement or food you couls be reacting to. HC ios NOT a drug that some people migh tbe sensitive to, though some MAY be sensitive to the fikllers in the tablet."

    IMO, this is very extreme, inaccurate and dangerous advice, and there was A LOT of it on that Yahoo adrenal forum. I wouldn't recommend anyone taking advice from people like this.
    Last edited: Jan 6, 2014
  16. Rlman

    Rlman

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    Hi Dreambirdie,
    first off, I totally support being cautious with HC and am not sure at all you could have been helped at all with HC. Just sharing what I read. I've been on the STTM Faccebook group, and some people are doing well on 25-35 HC per day. I myself have tested low morning cortisol on saliva tes, was told to take HC, but have yet to do so out of fear of it worsening my situation rather than helping. I don't think Valerie's comment is ridiculous at all if she's taking about full replacement dosing or stress. dosing. Also it is very important to test electrolyte, aldosterone and androgens when taking HC. Inadequate levels of those can also affect one's tolerance of HC. It's great to hear you have gotten better since that awful experience with HC!
  17. Ema

    Ema Senior Member

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    You always have to take the good with the bad in terms of what you find on the Internet. There's no question that they are wrong about a lot of things but I've also found a lot of useful information on that forum. Especially at a time when there wasn't a lot out there on these topics outside of herbs and meditation (which can also be helpful but may not solve a medical problem).

    However, I no longer participate there because of intolerance to any deviation from their canon which unfortunately is also typical of internet forums.

    100 mg of HC is a large dose for sure but much larger doses of steroid are routinely given out for inflammatory conditions like RA etc. All she is saying there is that it isn't going to hurt you i.e. KILL you because it is nearly impossible to overdose on HC and it certainly wouldn't happen at that level.

    People get into trouble with steroid replacement all the time because they don't understand that it is almost impossible to add to your own cortisol production by taking anything less than a full replacement dose of HC (the amount of which varies considerably between people) due to the feedback mechanism. There are a few specific situations where 5-10 mg may be helpful but typically it suppresses more cortisol than it replaces and leads to even more exacerbation of symptoms. She may not be the most eloquent in her presentation but the theory is correct in this case in my opinion. If people have infections especially 20-25 mg of HC is not likely to be a full replacement dose considering that dose was determined by studying inactive people in a hospital setting.

    Many doctors are now finally understanding the importance of replacing hormones in those of us with chronic illnesses. It's no longer (thank goodness!) limited to internet forums. I just enjoyed reading a very interesting chapter on hormone replacement in the new Dr Horowitz book where he discusses how cortisol replacement in his patients that have tested low has been found to be very beneficial. It's well known that infections cause increased cortisol requirements. I personally can't imagine trying to treat chronic infections without also addressing hormonal deficiencies.
  18. Dreambirdie

    Dreambirdie work in progress

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    I have to disagree with you completely on this point, Ema. I got SEVERE heart arrhythmias from taking 20 mg of HC, which I had built up to slowly, as per the Jeffries book and info I gleaned from the internet. I do think that it could have killed me if I hadn't stopped it when I did.

    I also had the worst anxiety of my life. Horrendous, awful, constant, 6 weeks worth of persistent 24-7 anxiety, during which I had to lay still in bed doing deep breathing exercises and pumping down as much magnesium and holy basil as I could stomach, to remedy its effects. Just to give you some perspective on this, I had been struck by lightning back in 1979, and the effect of HC was worse, long term, than the effects of the lightning. I cannot stress enough how absolutely dreadfully horrible and destructive HC was for me.

    Prior to the HC, I was semi-functional. I could run my own errands, clean my house by myself. I could walk up to 2 miles/day, and I could even go kayaking on really good days. After the HC, I was bedridden for 2 years, and after FIVE YEARS I am still not even half way back to where I was before I took it. It ruined my health more than any other substance I have ingested, except maybe pesticide.

    I know three other people, personally, for whom HC was disastrous as well. I know HC did wonders for you, but there are some of us who absolutely CANNOT take it. I regret that I ever tried it, as I am still not completely recovered from that big stupid mistake.


    And PS... this topic still upsets me, so I don't want to talk about it anymore.
    Last edited: Jan 6, 2014
  19. Ema

    Ema Senior Member

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    I believe that there are a significant number of people that have gotten thrown into this ME/CFS bucket who actually have full blown AI that has been consistently misdiagnosed by doctors (particularly endos) that seemed to have been fully absent the day they discussed adrenals in med school.

    This adrenal insufficiency may be caused by infections which may make the condition look different than the typical as well because it is caused by a brain dysfunction rather than a structural problem with the adrenals. Most doctors know nothing about how the adrenals and the brain and immune systems interact.

    I don't want people who could very literally die from an adrenal crisis to be frightened of full replacement when in fact it may be what saves their life. That's the reason I post on this topic. It's certainly not to upset you @Dreambirdie. I believe you when you say you had a terrible experience.
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  20. Wayne

    Wayne Senior Member

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    Hi RIman,

    Just a quick mention: My understanding is the adrenal glands have the highest concentration of Vitamin C of all the organs/glands of the the body. When we have some kind of infection going on, oxidation occurs, which can quickly deplete our anti-oxidant Vit. C levels; which I can only assume would negatively affect adrenal function.

    This is one of the reasons I'm currently researching liposomal Vitamin C as a supplement, with an eye toward increasing my anti-oxidants and fortifying my adrenal glands in the process. Lipo C is far more readily absorbed into our cells and bloodstream than regular Vit. C, apparently being as good or better than IV Vitamin C. If you're nervous about taking HC, you might want to consider some relatively high doses of liposomal C. --- Good luck in dealing with your low cortisol situation.

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