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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. Dreambirdie

    Dreambirdie work in progress

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    Heapsreal--I did what I HAD TO DO. I was SEVERELY ILL from that crap. I should have never taken it in the first place. And if I had stayed on it any longer, I could have had a heart attack. NO THANK YOU. Enough damage was done, as it is.

    I think anyone who takes HC, should think twice, and consider finding another option. Taking HC is like playing with fire. That is my opinion.

    And I really am done now with this conversation.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I understand u did what u had to do, but i also think stopping suddenly wouldnt have helped. Im not blaming you but trying to understand why u had long term issues with it. I had a very similar issue with effexor and then had big problems coming off. i eventually had to cross over to another med and taper off it. But im not going tell people not to take it as it maybe something that could help someone. If i went slow with effexor instead of ramping the dose up quickly and too high like the doctor said i dont think i would have had the issues i had. So i just advise people exactly that, go low and slow and be careful coming off. I could barely function with my experience on effexor and was in a terrible state, so i understand in a way what u went through.

    This is not a personal attack, so please dont be angry.
     
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  3. Ema

    Ema Senior Member

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    So everyone with adrenal insufficiency who needs HC to stay alive should just...die?

    Because you had a bad experience and not enough guidance and have now chosen instead (as is certainly your right) to live with low cortisol symptoms and blame the drug instead? That makes zero sense to me. I'll keep on replacing my deficient cortisol and living my life, thanks.

    Not taking HC when you have tested low is playing with gasoline and a lit match.

    Ema
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There are potential side effects from hydrocortisone just like any other treatment available and maybe more so with cfs/me people. But its potential side effects which doesnt mean its going to happen and many of these side effects occurr from high doses and prolonged use. Ones doctor also needs to take an appropriate history, but that should go without saying, always wise to google drug interactions etc to be aware of ones on health and treatment issues. I work in the health field and i am suprised how many people dont even know what medication they are taking are for, its not all the patients fault but many doctors dont explain their treatments to patients. So i think its wise for everyone to look up any med or treatment a doc prescribes as its not uncommon for docs to miss something. If any side effects arise then one should see their doctor. If symptoms arise that cause any respiratory, heart/palpatation/chest pain, altered conscious levels or severe blinding headaches should immediately go the hospital emergency room as they have the potential to be life threatening. This isnt just to do with hydrocortisone but any treatment.

    If one gets severe side effects from HC, it can be dangerous to stop them cold turkey unless under the supervision of a doctor, especially if one has been on them for more then a few days. What can occurr is secondary adrenal crisis is that cortisol production is severly low or stopped. this can cause severe abdominal pains, vomiting, profound muscle weakness and fatigue, depression, extremely low blood pressure, weightloss, kidney failure, changes in mood and personality, and shock (adrenal crisis) which can be life threatening. Its basically inducing addisons disease.

    I have seen this first hand in a case i attended where an elderly man who is normally on prednisone for severe arthritis, visited his relatives out of town about 16hrs away for a few weeks and was there to house sit. He ran out of prednisone and saw a local doc who refused to write him a prescription for prednisone as he didnt think it was a very good treatment for arthritis. Im unsure of the reasons for this line of treatment he was on but he was on it. From memory the relatives rang this man to check up on things as he was house sitting. I cant recall the whole story but he either didnt answer the phone or did but sounded very confused, so relatived called for an ambulance. When we got there this poor bugger was hullicinating and hiding under a table in the corner yelling out to us to watch out for the Japs(he was a ww2 vet), the house was turned upside down and fecal matter, vomitt all over the house. My inital thoughts were he was having a psychotic episode PTSD type thing. we managed to calm him down enough to treat him, ring his relatives who then told us the story of the prednisone. the patient and the relatives werent aware of the dangers of stopping prednisone cold turkey. Later on after this man was treated in hospital, i spoke to him and he had no recollection of what went on that day. Dr's confirmed with us that he was in adrenal crisis, which the treatment is hydrocortisone, IV fluids and glucose. I have also encountered similar situations, not just with steriods but also antidepressants like effexor, thyroid meds.

    So i tell this story not to scare people off but to let people know the implications of stopping these steriods without tapering. The gentleman above was on full replacement dose so his adrenal glands would have been fully shut down. Those on sub replacement doses should still have some functioning adrenal glands but it does take time for them to kick into gear and tapering is still required.

    Like Ema, i also believe that if one has low adrenal function without any type of adrenal treatment, then there are health risks as well. Like any hormone its about balance, there is no good hormone or bad hormone. we need them all and cortisol is a very important hormone and we need it in the right balance. One can survive on low adrenal function but quality of life is poor and increased risk of other health issues, fatigue, depression, infections, the list goes on, are very real.
     
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  5. jimells

    jimells Senior Member

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    Here's something I don't understand: if a person has low cortisol levels but the adrenals are responding properly, as shown by ACTH stimulation test, why not take ACTH instead of cortisol? Is the ACTH only safe to use as part of the stim test?

    I have found this thread to be very interesting and useful. I don't consider it to be some kind of blanket endorsement of HC supplementation. I appreciate hearing from folks who tried it, whether for good or for ill.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Not sure, i think it may have a very short life, either way its not in line with cortisol production and i think just stimulates the release of cortisol from the adrenal glands. Also if something is broken between the brain and the adrenals then ACTH wont work, this helps them to diagnose the type of adrenal dysfunction. From my reading HC is easier to dose closer to normal cortisol production rhthym.

    Ema might know this one better then I.

    People dont have to use HC straight up, but can use pregnenolone which is an upstream hormone that all hormones are made from. Its not guaranteed to increase cortisol but it has for me as well as other hormones. A benefit of pregenolone is that its not suppose to have any negative feedback issues ie doesnt supress natural hormone production. Worth looking into? Transdermal creams are suppose to be better then preg taken orally and again start low and work up slowly. I initially started with 50mg dose which is normal recommended dose and got extremely overstimulated, agitated and angry and sleep disappeared. I stopped and started a few times until i got the dose right. 5mg was something i could tolerate and i did get inital energy from it. I have slowly worked up to doses of 50mg over several months and now tolerate it well. I did the same with dhea. Personally i would try to increase dhea first and then add pregnenolone or HC later, but thats my preference.

    cheers!!
     
  7. Ema

    Ema Senior Member

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    What good timing! I just started asking this very same question myself a couple of weeks ago.

    Here are my speculations:

    1. ACTH is VERY expensive. A vial is something like $25,000 dollars now thanks to some new FDA regulations. The synthetic alternative may be cheaper but still pricey.
    2. It is hard to dose due to the pusatile nature and would probably have to be administered by a pump to get anything like physiological dosing. It is used in MS when pharmacological doses of cortisol are desired and so the subtlety is missing.
    3. ACTH is also fragile and difficult to get out of the vial reportedly. It will degrade on temperature extremes which makes it harder to use in daily life than HC tablets.


    I still think for secondary adrenal insufficiency it might be worth pursuing because the stimulation would keep the adrenals sound and producing. There is no evidence that taking steroids permanently always shuts the adrenals down though there is certainly that risk when taking steroids for a long period of time. However, there are also reports of adrenals coming back online after 20 odd years of steroid treatment. However, why take the risk if there is a good alternative?

    Also, I think there are some studies that show that ACTH has some anti-inflammatory and cognitive benefits in its own right apart from the effects on the adrenals and cortisol.

    I think the biggest drawback would be trying to get it to stimulate cortisol in the proper rhythm though. Cortisol must fall low at night to allow for secretion of other hormones - namely growth hormone. Without that fall, many other important endocrine processes would be negatively affected.

    But I wish someone would study it!

    Ema
     
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  8. Ema

    Ema Senior Member

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    An ACTH stim test while you are on steroids won't be accurate (neither is an AM cortisol unfortunately). Once you are on steroids, your testing options are basically naught. That's why it is so important to get the testing done correctly up front.

    You can use temperature as a rough guide to the adequacy of your steroid dose. When adrenals are fully supported, the daily average temperature will not vary by more than .2F. The daily average temperature is calculated by taking the temperature 3 times a day starting 3 hours after waking and then averaging to the nearest tenth of a degree and then comparing across days. When adrenals are weak, there is often great variation that subsides when on an appropriate steroid dose.

    Also, taking more than 10 mg of HC at a time is not a good idea. The body can't use that much at a time and it will contribute to negative side effects (such as high blood sugar and weight gain).

    Ema
     
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  9. Ema

    Ema Senior Member

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    So many people come onto my Addison's group dosing two or three times a day...and 99% of them leave dosing 4x/day. It's the only way to come even close to achieving the natural physiological rhythm.

    For example, I would dose 30 mg:

    10 on waking (or 1 hour before I want to get up)
    10 at 12PM
    5 at 4PM
    5 at Bedtime as the lights go out

    The bedtime dose helps thyroid to work properly overnight and promotes proper cellular repair and other processes. It also keeps blood sugar steady and helps to prevent awakenings due to adrenaline surges (what the body does when not enough cortisol is available). People think it will keep them up but it generally improves sleep for the vast majority.

    Ema
     
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  10. jimells

    jimells Senior Member

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    Thanks Ema and Heaps. I was curious about the ACTH because I had the ACTH stim test a while back. It was within range. The test was ordered by an endocrinologist, but I never understood why, since AM cortisol was also within range, as I recall. And the endo wrote in his report that I was "seeking attention" and needed to take antidepressants. Could it be tthat Attention Seeking Behavior (whatever that is) can be caused by low cortisol? (sorry, I have a very low tolerance to doctor B.S., which must also be a sign of mental illness o_O)

    I would like to try to get the cortisol saliva test. It would be interesting to see if the 24 hour cycle is near normal.
     
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  11. Ema

    Ema Senior Member

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    The range for "normal" AM cortisol is insane. It goes all the way down to 4 usually when below 6 is diagnostic of adrenal insufficiency all by itself (ie without a stim). A healthy normal person will have a cortisol around 20 at 8AM. Below 12-14 warrants a stim in my opinion. I can't tell you how many endos don't know this stuff. It's right there in the textbooks so there is no excuse.

    All that was simply to say that your "normal" results could have been anything but and hopefully you will have a chance to do a saliva test if you feel like this may be an issue for you.

    You can order a saliva test without a doctor's order in most states through ZRT/Canary Club for about $125.

    I must have the same mental illness as you...what is up with all these doctors wanting to diagnose mental illness? They are so quick to head in that direction rather than actually do their jobs in their own specialty! Nuts.

    Ema
     
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  12. Dreambirdie

    Dreambirdie work in progress

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    Do you REALLY believe that is what I said and meant? Really???... you actually believe that I want people with adrenal insufficiency who need HC to "just....die?" I have to laugh at how incredibly absurdly ridiculous this statement is. And certainly not in the least way related to what I said or meant, in any way shape or form.



    "Zero sense" back atcha. You really missed my point again, as usual. My HC experience was not just "bad," it was the ABSOLUTE WORST experience I have ever had with any substance I have ever ingested in my life. I thought I made that point quite clearly, but you do not want to hear it.

    Why would anyone in their right mind want to take a drug that made them as sick as HC made me? That would be the most idiotically masochistic thing one could possibly do.


    This is another illogical conclusion, based on a dangerous assumption. There are many reasons for low HC. According to Rich Van Konynenburg, the problem is often due to an imbalance in the HPA axis, resulting from partial blocks in one or more of the methylation pathways.

    If you don't have the full picture, but just the lopsided pro-HC slant, then your experiment with HC will blow up in your face. That is what happened to me.
     
  13. Dreambirdie

    Dreambirdie work in progress

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    Just to be really clear, my intention for posting about my negative experiences with HC on this thread, (or anywhere else on this forum), has been to give any person who is reading this material, and considering taking HC the "other side" of the story than the one being promoted by the HC fan club that has gathered here in force.

    I wish that I had had someone like me warn me about the potential risks and dangers of taking HC, before I took that step back in February of 2009. Not every person is going to do well on HC, and get better from taking it. Some, like me, are going to experience serious negative side effects, and be harmed by taking HC.

    I want anyone considering taking HC, to think very carefully about this, to weigh ALL possible options, to consider ALL other possibilities, before they jump into taking such a potent, (and in my personal experience a hideously nasty) drug. That is the point I have been trying to make, a point which some people really do NOT want to hear. So be it. Ultimately, I am not writing about my HC experiences for "them" anyway. I am writing for the ones, like me, who need to hear the warning that I never got to hear.

    I know two other people from this forum who have had bad HC experiences. Each of them had low cortisol, and each had bad responses to taking HC. And both are much better now, WITHOUT having gone the HC route. In fact, one is attending the university and studying to become a medical doctor. So I know for a fact that HC is not always necessary to recover your adrenals. THERE ARE OTHER OPTIONS.

    Keep this in mind, person like me, for whom HC could be a disaster. I am talking to you.
     
  14. madietodd

    madietodd Senior Member

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    Dreambirdie; I'd like to have the whole picture.

    What form of HC did you take? How much, on what schedule (times of day), for how long?

    Thanks!

    Madie
     
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  15. Dreambirdie

    Dreambirdie work in progress

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    madietodd I have written about my HC experience on a number of occasions, on number of different threads on this forum. Some of the info you want may be on earlier pages of this thread. I think if you do a search, you will find my posts about it. At this point I am a bit burnt on this topic. Take care, DB
     
  16. Ema

    Ema Senior Member

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    I'm glad you feel that way. Because that is what you said. I'm glad to hear that you didn't actually mean it.

    From your offensive statements about "rape" and harassment on the political threads against those that didn't support your political beliefs, there is a track record of a glaring lack of awareness when people disagree with you. I didn't even disagree with you about Obama and still got an earful when I asked you to consider how your language affects others.


    I heard it and suggested several reasons why that might have happened to you...none of which have to do with HC inherently being bad. Starting cortisol treatment *is* like starting to eat for an anorexic. It's obvious that you've never had any experiences around eating disorders or you would know what I say is the absolute truth.

    I've never belittled your experiences or suggested that HC wasn't awful for you. I think just about everything to do with low cortisol is awful and it can have terrible effects on the brain and mood.

    I've never suggested you take HC if you don't want to replace your low cortisol.

    Obviously, considering that an adrenal crisis can be fatal, that isn't my choice and I wouldn't suggest it for anyone else who has had proper testing. But it is certainly your choice to make.


    I don't have a pro-HC slant. I am pro-staying alive! It doesn't really matter WHY cortisol is low. If you fail a stim test and can't mount an appropriate cortisol response to stress, you may go into crisis and die. Period. That isn't an acceptable option for me.

    Rich VanK did not disapprove of using cortisol or other hormones to treat adrenal insufficiency. His hypothesis was that lifting a partial methylation block might increase glutathione in the pituitary/hypothalamus and allow for HPA dysfunction to correct. This may very well be true but never did Rich VanK suggest that those with diagnosed adrenal insufficiency stop taking their life-saving hormone replacement while waiting for a methylation block to lift. That would have been very foolish and totally against his character.

    Ema
     
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  17. madietodd

    madietodd Senior Member

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    I did a search, and was unable to find any information about your specific dose, schedule, etc. I'd like to learn from your experience, and I also think there's benefit to the community in knowing exactly what did/didn't work for a member.
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Here is a pipedream: Some brilliant medical statistician would take all our lab tests, symptoms and med responses/reactions and see if there is a pattern. Some of us react badly to meds that should help us according to diagnostic tests, and some do well.

    I wonder if there is some pattern of people with certain abnormal lab test responding well or badly to different groups of meds?

    I have mildly low morning cortisol and tried a very low dose of Isocort but didn't feel good on it (though as soon as I stopped it, I was "back to normal.") I wonder if there is a pattern amongst us as far as responding or having reactions to certain classes of meds? I also did badly with Florinef and a bunch of other drugs that help other patients.

    But at this point, this is a pipedream--extremely complex, so many variables.

    Sushi
     
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  19. EnduringAngel

    EnduringAngel

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    Now the last thing I want to do is get into a heated argument. However heapsreal I am more than happy to share my experience and point of view with you and others, apologies if I waffle on a bit.

    From what I have read on the subject I personally wouldn't want to ever go over 15mg of HC.
    I believe that 20-25 over can stop the bodies own production. And so for low dose for ME 15mg would be the max I would want to take. Obviously for those with addisons it's different.

    Many people with ME like me will have hormones problems due to the HPA problems.
    And often people are diagnosed as I was with delayed sleep phase syndrome, ie body clock is shifted.

    As with any medication you should always "start low, go slow, and listen to your body".

    I have saliva tests done that show I produce hardly any cortisol in the morning and far far too much at night. No wonder I cant sleep!

    I started with licorice for a few months it did nothing.
    I tried rubbing in hydrocortisone cream it did nothing.
    So I went to dr peatfield who recommended I take 20-25mg a day! Well bloody good thing I have a brain and did some research. Dr myhill and dr teilibalm who I both greatly respect say no more than 10-15mg max. Dr myhill says 10mg.
    So I bought some cortef, started slowly, and eventually found 5mg in morning and 5mg in afternoon to be amazing.It made so much difference.
    However the cortef cost heaps, so changed to prednisolone. But after I few month it really didnt suit me and after reading more of dr teilbalms book, I realised that hydro is more natural, ie more like what the body produces than pred. so I decided I needed to change back. But I had to get it on the NHS, as I couldnt afford anymore private meds.
    Luckily an NHS immunologist with an interest in ME asked my GP to prescribe it. And she did at 2mg prednisonlone a day which is about 10mg of hydro.

    This NHS consultant knew I had immune problems so suggested I take 2mg a day of pred but one day a week I should take 50mg a day! his view is it would stimulate the b cells. Well after just two doses I felt like hell, so listened to my body, told my GP I wanted to come off the high dose, but no one should ever just stop like that, so I lowered to 12.5 just once a week. And then 7 once a week, still taking the 2 a day.
    In that time I put on staggering amounts of weight and developed the typical steroid cushing appearance which I still have now.
    I told the consultant I wasnt happy with this treatment, could he please tell my NHS GP to give me hydro instead, and she did.
    I now take 10mg in the morning.I also take melatonin at night.
    One to wake me up the other to put me to sleep.

    I hope that long story made sence, and do feel free to ask any questions.

    My view is-
    No more than 10mg of hydro
    Hydro is better than pred
    Start low, and given people with ME are so so sensitive to meds, we should start even lower than most, give our bodies time to adjust.
    Also I know I am a bit of a hypocrite saying this as I should be in bed now, but we need to realise
    not to surf these night energy highs. IE by staying up late on the pc or with lights on.
    Lights stop melatonin prduction, and train the body to start alert at night, so no wonder by morning its tired and wont produce enough cortisol.
    As Dr myhill said to me once if I came into your house at 8pm everynight and cut the electric it would sort your body clock in no time.
    I know its hard to be disciplined though when we have no energy all day and finally get some at night. But we have to try, our bodies need and want routine, esp with hormones. So taking hydro in small doses in the morning, mid afternoon makes sense.

    Adrenals and thyroid go hand in hand so it does make sence to get your thyroid checked too.

    To wayne, it was sooo interesting what you said about HC and allergy.
    When Im tired most ie in the morning my MCSS is so much worse, I cant cope with any smells, but in the evening when my cortisol is higher I can tolerate smells more.

    Apparently during stress or infection our cortisol production can be reduced so it makes sense to slightly increase doses during this time. I believe in ME our bodies are stuck in stress mode, so no wonder our hormones are all over the place.
    Starting low dose HC does not mean we have to take them for life. We do need to take a balanced view. And never stop cold turkey!!

    Also dreambirdie you said
    "I started with just 5 mg (compounded) and raised my dose up gradually to 20mg. By the 5th week, I was having the worst anxiety of my life--worse than after being struck by lightning."
    With the greatest respect I'm not surprised. the 20mg was too high and upping this quickly its no wonder you felt ill.

    Also Ema you said
    "Also, taking more than 10 mg of HC at a time is not a good idea. The body can't use that much at a time and it will contribute to negative side effects (such as high blood sugar and weight gain"
    this is so interesting, and im wondering if I should take 5mg hc in morning and 5mg in afternoon like I used to rather than 10mg in morning.
    How long does it stay in system for?
    Now that I'm on LDN my adrenals seem to be better.
    And if I could just get my sleep improved and find something to put me into deep sleep, I'm sure my body would be more happier to stay awake in day.

    Remember that you need to sort your sleep, thryoid, diet and anything else going on in the body too. Just fixating on one piece of the puzzle wont work.

    Sorry this is so long.

    PS my friend also went to dr peatfield she took his advice and took 25mg a day of HC, a year later she is now in addisons crisis. 25mg was far too much. Am glad I never went back to dr peatfield and stuck with dr myhills advice.
     
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  20. MishMash

    MishMash *****

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    Let me just start by saying: if you think "drinking a quart of bleach every day really helped me!" I won't argue with your statement. That was your choice. But if you say "drinking bleach is a viable treatment for CFS" then I will have to argue with you. This seems to be the way this HC argument is going.

    So far Wayne has admitted that HC is the lesser of two evils, and he is probably forever stuck taking it. Is that a good thing? Maybe yes, maybe no. What if a new treatment comes out for CFS, and you have a non-functioning adrenal siutation.

    EnduringAngel, you are now at 10 mg hydro every day. How long has that been? Given that you had Cushings symptoms from stopping another HC, do you think you might be doing further damage to your adrenals? You cannot take this stuff for years and not have permanent, lasting damage somewhere. Everybody has a honeymoon period with this. Without exception. It's just a matter of how long it will last.

    When you are jiggering the dose between 5 mg (which is "just perfect") and 20 mg (which is "much too high") then you are dealing with the most minutest difference. On any given day your cortisol changes constantly, and you could be taking way too much or way to little. The saliva tests are just obtuse indicators. They probably have huge margins of errors. We have no way of knowing what a correct HC dosage should be for a sub-clinical patient. The most likely outcome is that your own adrenals will start to fade as you take more artificial HC.

    BTW, here's a study on adrenal supplementation, and how it does not work. And these are women with proven "adrenal insufficiency". Higher anxiety scores were a common outcome. If you have any quarrels about HC replacement, take it up with these researchers.


    Clin Endocrinol (Oxf). 2010 Mar;72(3):297-304. doi: 10.1111/j.1365-2265.2009.03596.x.
    Influence of hydrocortisone dosage scheme on health-related quality of life in patients with adrenal insufficiency.

    Bleicken B, Hahner S, Loeffler M, Ventz M, Decker O, Allolio B, Quinkler M.
    Source

    Clinical Endocrinology, Charité Campus Mitte, Charité University Medicine Berlin, Berlin, Germany.
    Abstract



    PMID:
    19508599
    [PubMed - indexed for MEDLINE]
     
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