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Finding the "sweet spot" with hydrocortosine??

Discussion in 'General Treatment' started by cb2, Oct 16, 2012.

  1. cb2

    cb2 Senior Member

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    I started cortef in may at a very low dose.. like 2.5 mg.. 2 x a day ..at first i had great bursts of energy and was able to do alot.. then it wore off. i have slowly been increasing.. it seems to help to tolerate the thryoid meds a great deal actually. End of august i went up to 20mg despite the dr telling me i didnt have "addisons" so i didnt need that much. I am wondering how do i tell the right amount for me?

    I also notice when i take the morning dose on an empty tummy it kinda really hurts.. so i have been trying to take it with food .but that means a tad bit later rather than right away and or with thyroids.

    open for ideas and suggestions.. I certainly do not want to do more damage to my body than she already has- but at the same time i need to be able to function.. in alot of ways the HC has helped with some obcessive tendenacy's and my mood seems more stable too.. is that odd?
    thanks
    cb
     
  2. August59

    August59 Daughters High School Graduation

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    I would not go above 15 mg per day personally unless you absolutely have to have it. There are doctors that say there is no negative feedback loop on doses of 30mg and lower, but I sure would not push it because you have to remember that your body is still making some. If you are taking 20mg and your body is making 20mg you are probably already sending a message to pituitary or hippothalmus to cut back it's signal to the adrenals in making cortisol.

    Have you had your cortisol levels tested? I took it for about 6 months and my highest dosage at a very stressful time was 10mg at 8am, 5mg at 12 noon and 2.5mg at 5pm = 17.5mg and I only took this a few times. Normal was 10mg am and 5 mg at around 3 or 4 pm. When I quit slowly tapered down over 6 weeks and I came out fine. One month after stopping my cortisol was within range, but the curve was all screwed up. This when my sleep got all messed up, but it did not have anything to do with the cortisol I took before.

    Get a 24 hour saliva cortisol test done if you can.
     
  3. cb2

    cb2 Senior Member

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    thank you for the feedback.. I did have a saliva test done before i started on the HC.. it was low in the afternoon ,evening and nite.. glad to hear you came out fine. in what ways was it helpful? and in ways did you find it unhelpful and decided to taper off?

    i think i have to be off the HC before i can get another acurate saliva test is that correct?
    thanks
     
  4. justy

    justy Senior Member

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    Hi cb2, i understand your desire to have better functioning, and as your results were off, you may well need some replacement, but i just want to tell you my experience with (a much lower dose of) steroids.

    I was on a high dose of inhaled steroids for my lung fibrosis - this shouldnt affect your body too much, but my lung was so damaged i was using more and more just to be able to breathe. This went on, taking the highest possible dose fr a few years. Then i had pneumonia and pleurisy and had two courses of prednisone - about 2 months apart. Then i had another couple months with even more inhaled steroids. Then my immune system and hormonal system just collapsed - i was catching every little bug and cold and flu that went round - i spent over a year in bed permanently ill with viruses and infections - i was too afraid to leave the house or have people come round incase they infected me with something else. Then i had terrible night sweats and severe menopausal type symptoms.

    When i went back to the lung doctor he was shocked at how much i had been taking, as they had forgotten to lower my dose. Eventually i did my own homework and saw that i was suffering side effects of the medication they had given me, and rather than controlling my sysmptoms it was causing them.

    I slowly, over a year tapered off my inhlaed steroids until i am now at the lowest dose possible to keep my lungs ok. I recently caught Pneumonia again, but refused the oral steroids. When i dropped down the dose of inhaled steroid my night sweats went immediately and my immune system is working considerable better (2 years on)

    This might not happen to everyone, but please be careful - they are a powerful immune supressant - i now also have adrenal issues to deal with - dont know if this is a result of the steroid overuse - but i suspect it is.

    Take care,
    Justy.
     
  5. Rand56

    Rand56 Senior Member

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    heapsreal likes this.
  6. Rand56

    Rand56 Senior Member

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    cb2 you said...

    "I also notice when i take the morning dose on an empty tummy it kinda really hurts.. so i have been trying to take it with food .but that means a tad bit later rather than right away and or with thyroids"

    To avoid this, you can take your HC sublingually. Thats how I take mine. Tastes a bit bitter but tolerable and the tabs dissolve pretty quickly.

    Rand
     
  7. cb2

    cb2 Senior Member

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    Thanks Justy and Rand
    I will go back to tracking temps.. i am horrible with consistancy.. thanks for the heads up Justy i can relate to the illness.. i was like that before thryoid and HC i was getting alot of lung infections.. I stopped the dairy and that has helped with the lung infections.. i was in Interferon therapy 15 years ago for a year and i believe that really messed up my endocrine systme.. i think it spent my adrenals actually.
    thanks for the support.
    c
     
  8. Tammy

    Tammy Senior Member

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    My body did not tolerate HC at any dose. when I first started taking it .......even 1 pill at the lowest dose made me feel dizzy and off balance. I wonder if my body just needed to get used to it? I did not continue to find out.
     
  9. ViaSwiss

    ViaSwiss

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    I take 20mg right now. I have been up to about 30-35. I do not have addisons disease either but HC helps with my brain fog and energy substantially.
     
  10. xks201

    xks201 Senior Member

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    Yeah uhh get an ACTH stim test please where they shoot you with ACTH and then test your cortisol levels 3 or 4 times in a 2 hour period. That is one of the necessary tests to tell if you have primary adrenal insufficiency or not. You could still have secondary adrenal insufficiency in which case sampling your cortisol levels 4 times throughout the day would help.

    Hydrocortisone to the CFS patient can be disastrous because everyone feels better on hydrocortisone...and unless you know for sure if you need it or not, don't take it is my opinion. I'm less worried about you suppressing your own adrenals with such low doses than I am you basically thinking (like I did) that your entire CFS is just a result of low cortisol and you need more of it. I have gone up to something like 60 mg of HC plus 1.5mg a day of dexamethasone before. I know people doing like 60mg of prednisone per day. And that did not even provide total relief. I felt a little better. But then I get a caffeine pill or anything stimulating probably would have done something similar. I have adrenal insufficiency, but you need to watch the dose because you go insulin resistant pretty fast when you start upping the dose. In fact cortisol increases the resistance of many hormone receptors. I'd try some desmopressin like .2mg at night if you have the whole OI thing too before I touched HC. (of course under doctors orders and supervision)

    Even one of my old doctors got carried away with HC and prednisone and gave himself type 2 diabetes (which went away when he lowered the dose after some time), developed physical weakness, and gained like 30 lbs of water. My blood sugar was very ugly when I upped my doses. I think most of my issue is hypovolemia from probably insufficient ADH output. Cortisol can make you hold water though so that can explain some symptomatic relief by it.

    Monitor your hormones...don't try and guess if you need something or not..and if you get on hormones monitor them at least every 3 months because it is impossible to guess where they are and that is coming from someone who has been on them for several years.
     
  11. cb2

    cb2 Senior Member

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    eah uhh get an ACTH stim test please where they shoot you with ACTH and then test your cortisol levels 3 or 4 times in a 2 hour period. That is one of the necessary tests to tell if you have primary adrenal insufficiency or not. You could still have secondary adrenal insufficiency in which case sampling your cortisol levels 4 times throughout the day would help
    good input..thank you.
    I had an ACTH stim test back in Feb after my body temps had ping ponged a few months.. then were dropping down to 95.5 and and i was freezing..for a few days. the lab didn't do the test right..they only checked cortisol levels at 11am and the 1x after the injecdtion.(which felt like a shot of cocaine and i felt horrible afterword) also had a saliva test a few of them over the years..the most recent showed am cortiol normal.. afternoon lowering.. early after and evening were tanked.
    thanks..! c
     
  12. xks201

    xks201 Senior Member

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    Well get the test redone then. If you don't you will never know what is up. Unless they tested you several times after that test then it was completely useless. My point is that just testing even saliva cortisol levels 4 times throughout the day won't tell you if you are primary or secondary in adrenal insufficiency. And that is very important to know especially with symptoms like CFS because if you are secondary then chances are your pituitary is deficient in production of other hormones too and your whole body is affected. Pays to find it now rather than spend another 5 years trying to figure it out because you didn't get the right labs to begin with. TAKE IT FROM ME. Then you end up hooked on HC when you might not need it and get all the nasty sides from that too.

    Even some of the most obscure labs I had done a while back, some of which I ordered myself have helped me tremendously in my journey. More labs are always better. Your endo is a quack if he only drew your blood once after an ACTH stim test. My endo is a quack and even he got 3 or 4 samples for the stim test lol.

    Curious what your other symptoms were...orthostatic intolerance? Heavy legs? Sugar cravings? Unable to handle stress? Peeing a lot?
     
  13. cb2

    cb2 Senior Member

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    it wasn't an endo that ordered the test at the time it was a new primary i was trying ... i have asked two endo's about an ITT test.. one used to do it in their office..they no longer do it and doesn't know anyplace.. the other said i didn't need the test or the hormones.. i need to keep pushing on them to give me the tests.. the first endo said i didnt have secondary becasue my acth on the am blood draw (this was after the stim test) was "normal" I will keep pushing on her... she said i would have to come off the HC so i guess that could take a few months. other symptoms... exericse intolerance, frequent infections that lasted a long long time.. like lung infections.. easily stressed out.. .horrible pms like 2 weeks out of the month..cold intolerance. the HC has helped me to be able to tolerate thyroid meds.. but heck maybe i dont need any of it.. just some good coffee! but that made me sick too.
     
  14. xks201

    xks201 Senior Member

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    Don't get me wrong I'm not anti-HC. I just am stressing how important it is to know whether or not you have primary or secondary adrenal insufficiency because if this is a problem with your pituitary and not your adrenals then the odds of you having multiple partial hormone deficiencies are a lot higher and then you can know where else to look. That's all. A little bit of HC won't hurt you. Just don't go on full replacement without knowing exactly what is up. Doctors are a pain. Even endos don't always listen to me and half the time I know more than them regarding the specific issue. Do you get orthostatic intolerance?
     
  15. cb2

    cb2 Senior Member

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    i am not exactly sure what Orthostatic intolerance means? i used to get dizzy sometimes standing up. My health took a big dive 15 years ago after a year of interferon therapy. a few years back when the fatigue and exerice intolerance started ..before the big immune crash my T levels and dhea were low.. and horrible pms.. I went on some testo and felt alot better.but that is another story- other side effects.. last saliva test recently showed low dhea-s
    yes dr's are a pain.. i am agree i need to get tested for primary and secondary but a place that knows what they are doing!.. i need to work on being more assertive--and getting those tested is in my goal for next visit with the endo..
    i am only taking 20mg of hc now.. i think that is pretty low.. ? and temps seem more stable.. thanks for the help!
     
  16. xks201

    xks201 Senior Member

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    take some dhea then...replace the hormones lost in menopause. you need those.
     
  17. cb2

    cb2 Senior Member

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    I do take dhea.. and i am have not yet gone through menopause..
     
  18. Crux

    Crux Senior Member

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    Hi cb2;

    Some of the symptoms you have listed: fatigue, dizziness, and even pms, may be better helped with the methylation protocol, rather than HC. I don't know if you've tried it before, but in time, it could at least improve them.
     
  19. cb2

    cb2 Senior Member

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    i tried it for a short time a while back.. couldn't hurt to try it again.. everything gets so expensive..and i am not sure the methylation protocol would help my body temps to not dive down to the 95.5s ?? at any point i can't just stop the HC-
     
  20. Crux

    Crux Senior Member

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    Hi cb2;

    I can attest that the B12/ folate in particular, increased my body temperature, even more than the thyroid meds. that I no longer take.

    I too take HC, ( can't survive without it ), but it didn't resolve my other symptoms.

    I understand the expense part, but a good sublingual B12, a good B-complex, and some extra methyl-folate isn't terribly expensive. Some people need more supplements too, but these may be the the most crucial.
     

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