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Hydrocortisone question

Discussion in 'General Treatment' started by Rand56, Aug 20, 2012.

  1. CBS

    CBS Senior Member

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    Hi Ema,

    I have been on low dose hydrocortisone since 1998. My experience with HC has generally been positive and I clearly do worse off of it than on it. As to Dreambirdie's experience, there is no question that HC can act as a stimulant (http://www.mayoclinic.com/health/drug-information/DR603541/DSECTION=side-effects) and the reactions can differ amongst patients. People with ME do not react to medications in uniform or predictable ways.

    As for taking HC without a Rx, I get why people do it. There is far too little care (and financial assistance) available to ME patients. Personally, I wouldn't do it without an endocrinologist's close supervision. Aside from the financial issues, Endo's willing to Rx HC are relatively uncommon. There is a reason for that. They have seen the ravages of over-treating with HC (leading to the "knee jerk" reaction you refer to). The doc that writes my HC script has me do bi-annual bone density scans. Two years ago he had a patient with bilateral hip fractures. She had very little bone left and so no way for her hips to heal. She ended up permanently in a wheelchair. We also watch immune issues closely. In 2009, shortly after taking a short course of therapeutic levels of HC (as opposed to the much lower physiologic levels), I developed septic shock as a result of a food borne infection. I was probably made more vulnerable to this infection by the immune suppressive action of a relatively high level of HC. Either way, I ended up in the Heart/Lung unit of the regional medical center for 4 days. At that same time I also developed central serous retinopathy (associated with too high a level of HC) and my vision was permanently damaged.

    Personally, I feel that for many, ME involves hypothalamus damage and dysregulation that in some results in low cortisol levels but IMO, HC is not a drug to experiment with absent a doctor's close supervision. The consequences of a mistake may not be evident until you're in the middle of a life threatening situation (MORTALITY from sepsis increases 7% every HOUR that it goes untreated). That's closing in on 100% after only 14 hours.

    I appreciate that this is relatively easy for me to say as I have a knowledgeable and supportive endocrinologist. And I know that FOR ME, HC has lead to a significant improvement in my quality of life. I think the bottom line is that this is a drug that begs for some honest discussion. It is a powerful med with system-wide effects and, as such, it can be very useful and it can also cause great damage if used inappropriately or if a patient reacts in an atypical manner (and ME patients are known to react in atypical manners - but the stimulus effect of HC is well documented - I have a small waking dose as well as a noon dose and that's it for the day).
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im going to make a few random points.

    My experience and what i have read, the worse your adrenal dysfunction the worse u can over react to adrenal treatments of all types, hormones, glandulars even vitamin b5.

    If you get over stimulated by normal recommended doses then probably have severe adrenal fatigue. its best to try very small doses of treatments eg dhea and pregnenolone at 5mg or less and slowly build them up over weeks and months. My personal experience is that i needed to get dhea up first as it seem to help control overstimulation of preg/cortisol but thats just me. Normal recommended doses of dhea and preg are normally like 50mg so doses less then 5mg a very low. there are some that cant handle these dose,maybe need to start on things like b5 and slowly increase doses. 500-1000mg of b5 are normally recommended but starting low might be 50mg??

    pregnenolone can increase all hormones and it will be different in everyone but it does lean more towards making cortisol. With me pregnenolone increased cortisol and testosterone but did little to dhea and other hormones and at first evry senstive to it.

    I have also found the pregnenolone in tablets capsules taken orally have done very little but transdermal creams i have had made at a compounding pharmacy have worked well.

    from my reading, thyroid can play a major part in adrenal fatigue, with low thyroid function, cortisol wont be used properly and vice versa. Most thyroid testing only looks at a small piece of the puzzle. i suggest going to 'stop the thyroid madness' to get more info on proper thyroid testing.

    Body temp i think can be a guide to adrenal and thyroid function eg if temp normally very low pregnenolone by increasing cortisol can help increase body temp closer to normal. this is one way to help judge your dosing, also if not getting any response from this then one might consider t3 thyroid.

    I dont have any personal experience with hydrocortisone but from what i have read doses of 25mg or less arent suppressive of the adrenal glands, the doses are divided up throughout the day eg 10mg on awakening, 5mg at midday and then if needed another 5mg late afternoon. if possibe i would be doing this through a doc.

    naturopaths and intergrative doctors are the people to see to get adrenal saliva testing done. normal docs just dont believe in this stuff.

    Treating adrenal hormone dysfunction i think is only a piece of the puzzle in cfs/me and is possibly a protective mechanism to slow us down when we have infections etc etc. Maybe sometimes this lowering of adrenal hormones can be just 'stuck' in low gear and treatment can get things running??? Personally i think to get the best benefits out of treating adrenals one has to find the cause of the stress, in us trying to find those dam infections and treating them. good adrenals though can also help improve our immune system too.

    i think people need to educate themselves as much as they can on this subject as many docs dont really understand it and treatment needs constant adjusting.

    heres some links to some good sites for info
    http://www.stopthethyroidmadness.com/
    http://www.drlam.com/index.asp
    http://www.custommedicine.com.au/health-articles/reverse-t3-dominance/
    http://www.custommedicine.com.au/adrenal/

    anyone has any other good sites with info please post.

    cheers!!!
    GracieJ likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    There was CFS study done in which they DID FIND that those who have CFS may get suppression of the adrenal grands after low dose (25mg or less) supplementation and due to this, the conclusion of this study was said that the benefit to some just wasnt worth the risk of recommending hydrocortisone to CFS patients. (this was a cortisol/CDC study.. the CDC were interested in us and cortisol there for a while http://www.newswise.com/articles/view/536946/ so I guess it must of been just after that study they did the hydrocortisone and CFS studies to which the results were also published.. maybe someone can find the link to what im refering to and post it.. Reeves also did a media interview on the low dose hydrocortisone and CFS study results).

    So anyway.. Im just wanting to point out to all that thou low dose cortisol may not cause other patient groups much issues, in us thou, it CAN cause adrenal suppression so hence may be dangerous for some.
    Tito likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    It sounds as if Gracie had actual "Addison's Disease" , Addison's disease can be life threatening and not just what some refer to Adrenal insufficiancy which we seem to often have and is more known in Naturopathic circles etc and much ignored by the general medical profession. By the time Addison's Disease appears.. its been said the adrenals are 90% non functional.

    Addisons disease is something which is supposed to be ruled out before being given a ME/CFS diagnoses.
  5. taniaaust1

    taniaaust1 Senior Member

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    Be aware that even if you know your cortisol levels are low.. it may or may not help, just cause they are low it dont mean it will help.

    My 24 hr urine levels (from the normal lab the doctors use) were at only 48 (the normal range was 50-160). They tested abnormally low on more then one occassion. I did a low dose hydrocortisone trial but in my case it seemed to do nothing at all. No better.. no worst (I got no side effects from hydrocortisone).

    I hope you manage to get some to trial from somewhere as I know what it feels like to know ones levels are low yet not managing to find a supporting doctor who will support a trial of hydrocortisone. Even after two tests, doctors didnt care that my levels didnt come back in normal range after I'd convinced them to finally allow me to have the tests.. they just said.. well its low cause you dont exercise... they had no thought of the fact I was that low even thou I was getting a lot of pain etc. which should of made it higher.
    It took ages for me to find a doctor who I could finally convince to agree to back me for a trial.. which I continued till I was absolutely sure it wasnt helping at all, not even a wee improvement. (doctor thou never retested me to see if the low dose amount I was taking was enough.. thou I'd think I would of felt even a small improvement had the hydrocortisone been going to help me). After 4 years, Im soon to see a doctor who has a special interest in hormones so I'm going to get all this relooked at.

    Even with knowing your levels are low, so knowing a trial is justified.. I personally still think it would be dangerous to do anything other then a short low dose trial (say a week or two) without a doctors backup as it CAN be dangerous.. you could end up worst with adrenal suppression as this is what has been found can happen to CFS patients trialing only low dose hydrocortisone.. so try to find a doctor to keep a eye on things.

    Best luck.
  6. xks201

    xks201 Senior Member

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    You have to look at all the hormones. If you just replace say Vasopressin without monitoring your sodium/aldosterone levels you are risking hyperkalemia. With every drug there is a risk. Drinking water can be risky. If you just replace cortisol and do not look at sex steroids like testosterone (or estrogen if a female), yeah your bones may fracture. I'm on the most potent glucocorticoid replacement dexamethasone. It is a 100 times more potent than hydrocortisone. I bench press over 400 lbs and have no bone deficiencies. Why? Because I monitor every hormone.

    Testosterone increases insulin sensitivity when administered properly, and cortisol lowers it. If you have no testosterone and take a bunch of cortef you are asking for problems. HGH is also needed for bone mineral density. I know there are tons of cases of doctors giving out one hormone to some overall unhealthy person with a genetic predisposition to whatever they have and screwing them up further, but if you wait for an endocrinologist to tell you you need hormones and you have been sick for years, maybe you should stop waiting.

    But in any event monitor all the hormones. Starting with something like sublingual pregneneolone or DHEA cream can be good. I actually do not even respond to any other form of DHEA other than cream for some reason. That alone would benefit a lot of people here. They have found MS patients are deficient in neurosteroids. MS and CFS have a lot of similarities. Why do people age prematurely? Lack of hormones. I am pan hypo pituitary so I know what death feels like when your hypothalamus and pituitary do not signal properly. Dr. Ritchie Schoemaker talks about this from toxin or viral or other bacterial exposure causing this to happen. It is very easy to disrupt the HPA axis when you have an infection on board.

    It is my personal belief that many of the genetic mutations in CFS lie in the adrenergic receptors which are malfunctioning. I believe that they regulate the HPA axis. This could be due to neurotransmitter deficiencies. For example a dopamine deficiency can lead to low pituitary hormone output. So basically in my case I find the body cannot process thyroid hormones without a hyperactive response to small doses, even when lab ranges are not elevated on the replacement dose. Therefore my sympathetic nervous system goes nuts, producing more negative HPA axis feedback and making me feel worse. I do not know the solution other than to use a strong beta blocker since I have always had a tendency to angina and heart issues even long before I touched any hormone. I think it is directly related to probably genetic mutations in the adrenergic receptors/sympathetic nervous system function.

    Again I am not claiming this mechanism is happening in everyone nor that I know everything, just listing my observations.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania from memory can u remember how long the people were on hydrocortisol for?? Short courses maybe enough to 'rest' the hormone function. long courses i suppose have greater chances of causing adrenal sepression.

    it would be interesting to hear from more people who have used it for short periods and after stopping have maintain the improvement they have made while on hydrocortisone.

    cheers!!!
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    xks have u read anything on pregnenolone helping increase neurotransmitters??
    Another forum im on has mentioned this but i cant find much evidence of this, but it wouldnt suprise me if it does help. I have read that pregnenolone has antagonistic properties for gaba receptors but not much on other neurotransmitters.

    cheers!!!
  9. xks201

    xks201 Senior Member

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    Pregnenolone is a neurosteroid like DHEA so it does. I take it sublingually like 50-100mg at night and notice a big difference. I also take pramipexole at night which makes me sleep great.

    Increasing the neurosteroids and hormones and correcting the adrenergic dysfunction is paramount in my case to feeling good. There is a product called Dermacrine which has dhea and pregnenolone in it in a nice dose. I need like 30-50mg of dhea cream per day for energy.

    The crazy part was I was still tired and it was because my body would just go nuts whenever I took T4. I almost view T4 as a neurosteroid even though they say it is "inactive". It is definitely active because when you deprive an animal of T4 and just give it T3 to the point of suppressing T4 its brain shrinks. And if we are hypothyroid all night while our neurotransmitters are rebuilding (the process of sleep), where thyroxine too is essential to this process, we are going to wake up with low neurotransmitters and fatigue. Testing reverse T3 is important too. Some doctor found that fibromyalgia patients' brains do not produce enough dopamine. He gives pramipexole at night for that. I think if the thyroid deficiencies or inability to respond properly to the drug can be corrected that the neurotransmitter abnormalities may normalize because I tried going directly after neurotransmitters with adderall, antidepressants, ETC, and they do not hold a candle to getting your body to properly metabolize T4 and stress via proper adrenergic function. I see a lot of people on here say they take a hormone and their heart goes nuts and they feel over stimulated. That is the case because the adrenergic system is somehow imbalanced, possibly genetically. I was always hyperactive since I was a kid.
  10. xks201

    xks201 Senior Member

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    Also there are people that can harbor serious infections that do not get sick. That is why I first exhaust all of these other possibilities so strengthen the body before I go germ hunting. Unless you have some weird parasite or something, the odds of you getting your strength back by killing one germ in your body is not very high in my opinion.

    On another note there was a study showing people with POTS were benefiting from a beta blocker with fludrocortisone. These people probably would otherwise have a heart attack on that fludrocortisone dose alone due to their adrenergic imbalances. Apparently the combination treatment was quite successful. I get the same way with florinef if I do not take a beta blocker. The beta blocker does not make me tired as long as I keep my t4 and dhea up.

    This adrenergic imbalance can also explain immune suppression because high levels of adrenaline will suppress the immune system.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    do u think the body is pumping out too much adrenaline to compensate for low cortisol?
    there seems to be a few people doing well on t3 for a few months to help clear reverse t3 then they stop or go on natural thyroid with both t3/4.
    definately something in adrenal hormones and thyroid for people to look into it further.
    i use 25mg dhea tab and use pregnenolone cream 50mg but looking at increasing it further in small amounts. this seems to have helped increase my body temp too as well as energy and generally other symptoms.

    cheers!!!
  12. Rand56

    Rand56 Senior Member

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    hi Heaps

    Do you think my inability to handle DHEA, which I have tried several times before, is atleast partly due to my cortisol levels sub par? If I do well on physiological dosages of HC, should I give a go with DHEA again starting at a lower dose? The best time to take the DHEA would be at night? Anytime I have ever tried DHEA in the past it just made me feel too weird and spacey. I also had constant low grade anxiety while on it. Also, anytime I have tried it, it made me itch like crazy. Wasn't an allergic reaction to any filler, since I tried other brands with different fillers and since I've taken a boatload of supps in the past, I have not gotten that type of crazy itchiness with any supp other than when I take DHEA.
  13. Ema

    Ema Senior Member

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    I think this is the article you are referring to but I don't see where it talks about the benefit of supplementing HC not being worth the risk?

    http://jcem.endojournals.org/content/93/3/703.full

    But it is still early for me...

    Ema
  14. Ema

    Ema Senior Member

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    If one has Addison's disease, it is generally autoimmune in nature and is lifelong so one would not be able to discontinue steroids due to the destruction of the gland.

    Most people with ME/CFS seem to have HPA axis dysregulation instead which causes the adrenals to function poorly due to signals from the brain. The symptoms can often be treated with HC but it is not nearly as straightforward as treating Addison's - probably because most of us have co-infections which require dosing adjustments.
    taniaaust1 likes this.
  15. Ema

    Ema Senior Member

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    Yes, this was definitely true in my case. Starting HC actually reduced my anxiety and made me feel more tired in some ways because I was used to the insane stimulation from adrenaline as opposed to cortisol. I never got any stimulatory effects from HC until much further along in my treatment.
    heapsreal likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Rand,

    i think your idea sounds good. if functioning ok on HC then yes add small amounts of dhea, maybe get the 10mg capsules, empty them out and divide the powder into 1/4 and recap them, so now u have 2.5mg doses of dhea. Then u can start on them and maybe stay at that dose until u feel comfortable for a couple of weeks then increase again by 2.5mg increments etc etc. when u get to ten mg then retest your dhea levels. you want to atleast aim for dhea levels in the middle of the range,

    I think you have to juggle things around alot and use things in different orders until u find the right fit, this is sort of what i did. Maybe once u have a good dhea level you then maybe taper off HC and slowly add the pregnenolone again. but this is just an idea.

    The rash and itchiness just might be because your cortisol is low??? U might find once u have improved adrenal function to a certain degree u can then handle other things u havent been able to handle in the past. eg sudfed PE generally has very weak stimulant qualities but when i used it for sinus problems it would destroy my sleep, but now that i have got my dhea sorted for some reason i now dont have this problem, it seems to help me handle being overstimulated and this happened with pregenolone where i am now using much larger doses which had i used in the past would have blown my head off. i know your situation is different but maybe HC might do the same for you. its really trial and error.

    the link i sent you on HC helpful for you??

    cheers!!!
  17. xks201

    xks201 Senior Member

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    Cortisol lowers adrenaline so increasing cortisol may help. I go to the extreme of using a beta blocker ... bisprolol 2.5mg a day otherwise my adrenaline is pumping fast all day.
  18. GracieJ

    GracieJ Senior Member

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    Thanks to all of you on this thread! I have learned a lot, hearing about your experiences.

    One other caveat to follow: DHEA supplementation can be hazardous for women, better results for men. Women are better off using pregnenalone, a DHEA forerunner, and letting the body produce its own DHEA.
  19. GracieJ

    GracieJ Senior Member

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    Thanks for beating me to the explanation. :) Addison's disease was never the official diagnosis. I would have been given a much higher dose of cortisol if it had been Addison's, for one. I was given a much lower dose with instructions to bump it up in times of stress. I was diagnosed with severe adrenal exhaustion. I suspect I was suffering from HPA axis dysregulation, considering all the other pieces involved. An approach that addressed the entire endocrine system was much wiser. Also, had it been true Addison's, I would not have been able to go completely off cortisol, as I have done, and go to an herbal protocol that is strengthening and feeding the endocrine system much better than the cortisol did alone.

    My doctor did say I was lucky to be alive, and that my levels gave new meaning to the phrase walking dead.

    I fit the ME/CFS descriptions eerily well, to my chagrin and relief both. But at least I know, after years of falling through the cracks medically.
    taniaaust1 likes this.
  20. GracieJ

    GracieJ Senior Member

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    Is this another example of a study set up to skew results?

    25mg of cortisol is actually a rather high dose unless you DO have Addison's or something close to it. Of course those studies showed suppression! Natural production is around 30mg daily, give or take.

    An Addison's dosage would be around 30-40 mg daily, split out, and completely suppressing any remaining production. 25mg daily with a still-functioning adrenal gland is very dangerous and could suppress it with bad results. In most cases that I have heard of, 5-10mg per day is the best, just enough to stimulate the glands and support them while healing, but not enough to suppress them. Some days, a dosage of 15-20mg would be indicated with high-stress situations, all depending on the doctor's instructions and close monitoring.

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