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Addison's Disease Message Board


Addison's Disease Board Index


What time were the tests taken? That is significant.

The body's normal rhythm should be at its highest at around 8am. It should fall to roughly half that amount by 4pm (the lab ranges usually show time periods from 8-10 and 2-4). Ranges are wide and doctors that are not experienced can just look at what is *normal* and not see what is really wrong so at least your doctor is seeing that you possibly have an issue with your diurnal rhythm. Another good test is at midnight, where cortisol should be at its lowest and some with Cushing's will be high.

A variety of tests should be performed and you should keep in mind that they differ is both how and what. Blood tests are testing serum cortisol and are point in time tests so you may or may not be high at the time of the test. Saliva tests are point in time, but test free cortisol. Urinary Free Cortisol tests are done over a long period - usually 24 hours or 10 hours and will tell you if your cortisol was raised in that average. The pitfalls for that, for me, for instance, is that I was so high and then so low, that the lows cancelled out my high and I was largely average or just barely high. Another pitfall of free cortisol is that some people "bind" free cortisol through no fault of their own (and some drugs and even estrogen does this) so that no matter how high they really are, free cortisol will not spill so a test call cortisol binding globulin is useful but only a few specialty labs carry it and good doctors know about it.

One test should not rule you in or out. Dexamethasone suppression tests should not rule you in or out. I suppressed on every test and had confirmed Cushing's disease. Get many tests to know the source of your disease. It is not straightforward.

I had both pituitary and adrenal surgery. I have Hashimoto's too.
Hi everyone. Finally, the results are in: severe adrenal fatigue [I]and[/I] low DHEA, low estradiol, low progesterone, low testosterone, and a very low ratio of estradiol to progesterone. I knew things were wrong, but I am amazed at what a mess I am!

I have a lot to learn. Does anyone else have low hormone levels?

I have a very complicated protocol to follow. I will do whatever it takes.

To those who are looking for an answer, never, ever give up. You know you better than anyone. If you cannot get help when you know something is wrong, see another doctor, and another until you find one. I know it is frustrating and you should not have to go through so much to get the help you need, but it is worth it to get one who can help you.
Dear Bugsmom,
Is your doctor an endocrinologist? 80 mg of hydrocortisone is a LOT. A normal dosage of hydrocortisone (Cortef) is 20 mg. Please go to [url]www.nadf.us[/url] and look for the normal cortisol levels daily. the numbers you quoted look too low. A morning cortisol should be somewhere around 15-25 (don't quote me on this - I haven't checked in a while) I have had addison's disease (secondary) for 3 years. When I had a .04 cortisol in the afternoon I was put in the hospital for addisonian crisis. The NADF has a lot of information and a lot of smart people you can email to get help. Doctor's do not know about addisons. There are two types: Primary and Secondary. With Secondary it has been caused by giving too much steroid (that is one way). The pituitary can't make enough ACTH to tell the adrenals to make cortisol. That is what I have. I take 5 mg of prednisone ( I didn't do well on cortef it caused me to hold fluid). Good luck.
Pam50,
Thank you so much for replying. No he is just a General Practioner, I have an appt. with an endo on the 31st. The 80mg were making me sick, my legs were cramping really bad and I was swelling up a lot. The 60 did the same. I finally on my own started with just the 20mg and have stopped per my dr. now. I went to see him yesterday and he took more blood to check my vitamens and nutrients and stuff like that. I asked him about Addisons and he said he didn't think it was that.
My cortisol in the AM is at 1.0, I know it is exceptionally low and he said that is why he put me on such a high amount of steroids..The afternoon is good but my night is also low. I am SOOOO tired all the time, I could sleep for so long and I work 50 hours a week and have a 14 year old that is on a dance competition team, so I am always running with her, I can not be this tired it's causing problems so I really need to find out what is going on.
With the Addison's were you very tired?
I go on the 31st to the Endo.,so hopefully I will find out more.
thank you again.





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