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    Old 12-13-2007, 07:49 AM   #1
    danp009
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    Help...Help...Please

    Hi
    I had my salivariy ASI 4 times tests and my cortisol levels were all depressed.
    I immediately contacted a endo and he did the ACTH stimulation test and said everything was OK.

    I am hypothyroid and take synthroid and have vitiligo.

    I cannot sleep more than 3 hours in a night.

    I get infections very often, cold mucus etc.

    For the heck of it, i started taking 25mgs of cortef to see what happens.
    Now I am feeling better...no cold....but sleep has not improved.

    Am I doing the wrong thing? I have low normal testosterone.

    Somebody please help me out. My SED rates are high too. Do I need antibiotics. Can I continue taking cortef? Is it dangerous without being diagnosed with Addisons?

    Dan

     
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    Old 12-13-2007, 08:48 AM   #2
    rumpled
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    Re: Help...Help...Please

    The answer to your question is YES.
    Taking cortef or any steroid will just further depress your adrenal activity. However, you cannot stop taking any steroid abruptly, it can be life-threatening. You have to wean yourself off. Most people take it in divided doses, most in the morning and less in the afternoon. Start by reducing by 5 in the morning. Do that for a week. Then reduce by 2.5 both in the morning and afternoon. Then 5 again in the morning. Then 2.5 in the afternoon. Your afternoon dose should be gone - now just work yourself down. You will have a lot of muscle pain. That is normal.

    As for the not sleeping, it could be that you have a cortisol surge at night. That is when I had a lot of cortisol. In other words, you could have CUSHINGS and not addison's and giving yourself cortisol would be adding fuel to the fire. You can by cyclical or just run super low to super high. It happens. Docs that are not used to seeing a lot of cushing's patients will not know that. Get to another doctor and do not take prescription drugs on your own. You can kill yourself.

    Get copies of all your tests from the other doctor. Inflammation is not a good thing. You need a lot of tests too - both adrenal, pituitary to find out why your testosterone is not right. A good doc will do more and some baseline plus even the female hormones. Did you know estrogen and testosterone are closely related and are also made in the adrenal glands?

     
    Old 12-13-2007, 06:24 PM   #3
    danp009
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    Re: Help...Help...Please

    Thanks for your reply. Ok...which test should I trust. Salivary or blood test for cortisol levels. My GP(who did the cortisol salivary test) says that I am low on cortisol. My endo says...everything is fine.

    The I read the Safe uses of cortisol book...and William Jeffries says that taking 20mg in divided doses does not suppress your adrenals.

    Now I am confused. I know taking cortef on my own is risk...I am going to wean it off.

    One endo says I need antidepressant....and the other says something else.

    How to find a good doc?




    Quote:
    Originally Posted by rumpled View Post
    The answer to your question is YES.
    Taking cortef or any steroid will just further depress your adrenal activity. However, you cannot stop taking any steroid abruptly, it can be life-threatening. You have to wean yourself off. Most people take it in divided doses, most in the morning and less in the afternoon. Start by reducing by 5 in the morning. Do that for a week. Then reduce by 2.5 both in the morning and afternoon. Then 5 again in the morning. Then 2.5 in the afternoon. Your afternoon dose should be gone - now just work yourself down. You will have a lot of muscle pain. That is normal.

    As for the not sleeping, it could be that you have a cortisol surge at night. That is when I had a lot of cortisol. In other words, you could have CUSHINGS and not addison's and giving yourself cortisol would be adding fuel to the fire. You can by cyclical or just run super low to super high. It happens. Docs that are not used to seeing a lot of cushing's patients will not know that. Get to another doctor and do not take prescription drugs on your own. You can kill yourself.

    Get copies of all your tests from the other doctor. Inflammation is not a good thing. You need a lot of tests too - both adrenal, pituitary to find out why your testosterone is not right. A good doc will do more and some baseline plus even the female hormones. Did you know estrogen and testosterone are closely related and are also made in the adrenal glands?

     
    Old 12-14-2007, 04:54 AM   #4
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    Re: Help...Help...Please

    Dan,

    It'll be difficult finding a good endo that believes in the saliva testing. Listmates - got anybody for Dan? 25mg/day in my opinion should be carefully reduced, with a Dr. if at all possible.

    In the meantime, here's something to try for the infections, cold, mucus. Take 1-2 hot baths a day. Draw your water at 104-105 degrees F (no hotter!), then stay in the tub for 15-20 minutes. That will raise your body temp to a fever level... 101-102F for about a half-hour, which will reduce or kill the bugs and (I believe) prevent stuff from taking hold if you continue. The first few times you do this, measure the water temp and your temp with a regular oral thermometer, to make sure you're not going too high with it! That's from no Dr., but my personal experience. Your mileage will vary, based on the size of your tub and the size of you... as the bath water warms you, you chill the bath water, and after 20+ minutes, your temps meet in the middle.

    Ralph

     
    Old 12-14-2007, 07:28 AM   #5
    orion
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    Re: Help...Help...Please

    Quote:
    Originally Posted by danp009 View Post
    I immediately contacted a endo and he did the ACTH stimulation test and said everything was OK.
    Dan
    Low thyroid, low cortisol, and low testosterone point to a pituitary problem which can not be diagnosed by the ACTH stimulation test. That test only shows that your adrenal glands work, but without stimulation from your pituitary they have nothing to work with.

    You need a pituitary stimulation test.

    Meantime I would get some blood tests for prolactin and IGF-1. Both are indirect tests of the pituitary. Elevated prolactin or depressed IGF-1 indicates a pituitary problem as well but are not diagnostic for that problem.

    Taking the cortef is definitely not a good idea without a doctors help. The fact it works for you, assuming you are taking less than 25mg/day, is another sign you have a pituitary problem.

     
    Old 12-14-2007, 11:51 AM   #6
    danp009
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    Re: Help...Help...Please

    Thanks....
    OK...i will start reducing my cortef to 15mgs a day.
    Pitutary stimulation test? what is it? Can a regular MD order the test or an endo?

    According to some books...taking 5mgs 4 times a day(cortef) will not suppress the adrenals...rather it will support...especially if you have infection or going thru some emotional stress....any idea on this.

    Thanks




    Quote:
    Originally Posted by orion View Post
    Low thyroid, low cortisol, and low testosterone point to a pituitary problem which can not be diagnosed by the ACTH stimulation test. That test only shows that your adrenal glands work, but without stimulation from your pituitary they have nothing to work with.

    You need a pituitary stimulation test.

    Meantime I would get some blood tests for prolactin and IGF-1. Both are indirect tests of the pituitary. Elevated prolactin or depressed IGF-1 indicates a pituitary problem as well but are not diagnostic for that problem.

    Taking the cortef is definitely not a good idea without a doctors help. The fact it works for you, assuming you are taking less than 25mg/day, is another sign you have a pituitary problem.

     
    Old 12-14-2007, 01:31 PM   #7
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    Re: Help...Help...Please

    Finding a good doctor is very difficult, granted. It took me more than 10 endos and I had to travel 3000 miles to get my pituitary tumors taken care of even though I knew what was going on. And now even with my conditions known, endos still don't know what to do with me.

    An endo is the best doctor to do the stimulation test.

    Hydrocortisone will support the adrenals in time of stress. This is given to people who have addison's disease but not normal people who's adrenals react and give the cortisol they need for the stress. However, you have not demonstrated that your adrenals are not working and cannot give the extra cortef you need. And you cannot test while you are on the cortef. If you take cortef and you do not need it, you risk damaging your bones and muscles as too much steroid is just as damaging as too little (cushing's disease). Symptoms for too much and too little are pretty similar as I have experienced - fatigue, appetite changes, skin changes.

    I have no adrenals (removed due to cusing's disease) and take 15, 5, 2.5mg and live on that. You are taking cortef on top of what your adrenals are making. Normal replacements dosages for addison's patients can vary from about 15-30mg with somewhere around 20 being normal for someone with no function and more for someone with need for more steroids like asthma.

     
    Old 12-15-2007, 09:41 PM   #8
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    Re: Help...Help...Please

    Quote:
    Originally Posted by danp009 View Post
    Pitutary stimulation test? what is it? Can a regular MD order the test or an endo?

    According to some books...taking 5mgs 4 times a day(cortef) will not suppress the adrenals...rather it will support...especially if you have infection or going thru some emotional stress....any idea on this.

    Thanks
    You need an endo for pituitary stimulation tests that usually require injections and monitoring after.

    As I understand it, even taking 5mg/day for a month of cortef creates a loss of cortisol from your adrenal glands that can be detected for months after stopping. Hence the need to taper very slowly down 5mg or even 2.5mg/day step wise for a few weeks at each step.

     
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