tired on cortef

[aaamommy27]

I have been recently dignosed with adrenal insuffiency. I already have Hashimoto's thyroid. After a salivia test, the doc decided to try me on 1/2 5 mg of cortef twice a day. It is literally exhausting me. Is this normal? Is my body getting used to it. My salivia test revealed that I would actually spike cortisol at nighttime. New to this, please help.

Salivia test results were:

7am    7.9    (8.0-15)
11am  4.3    (3.0-7.0)
2:30pm 3.3  (2.0-4.0)
8pm    2.0    (<1.5)

Thanks!!!

[rumpled]

Not sleeping at night sounds like your cortisol is high at night. You need to sleep at night to repair bone, muscle and the rest of the body.
Get more midnight testing.

[aaamommy27]

I only started the cortef last Friday. When I took it, I felt so exhausted I wanted to fall asleep driving. I am more of a wired person usually. I do not sleep at night and I wake up feeling tired, but then my head always starts spinning and I get up always early.
I am about 40 pounds overweight and everything I do, does nothing. I feel like I am going crazy. My salivia test did not seem too bad, but the cortisol went back up at night.
I am going to call my doc again today to see if I can get a new endo.

Thanks!

[rumpled]

The symptoms of too much and too little both include fatigue - so that symptom cannot be used to tell if you are high or low.

The ACTH test will tell you what is going on.

The *tired but wired* is what we usually say when we have Cushing's not AI... so I would be more inclined to think you have high, not low - but usually doctors do a lot more testing before they put you on replacements.

Mind you, you cannot just quit replacements - you have to taper off.

[aaamommy27]

So when I took the cortef and it made me tired, could that mean I have too much cortisol? Will the ACTH test help me figure the truth out? I am exhausted, but wired all the time.

[rumpled]

Yes, the ACTH stim test is done when the adrenals are high or low - so it will tell if either condition exists. ACTH is a very very tricky test.

CAH or LOCAH can be determined by a genetic test.

Having low cortisol and being overweight is not usual - the overweight is more like high cortisol. Not sleeping and anxiety = high cortisol.

I understand the doc parade - I have done the same.

[aaamommy27]

I have seen a whole lot of docs that keep giving me different answers. The first time I had an ACTH test done it said my adrenals were fine. The test was done for the first time by this lab on me and I did not trust it. They had no idea what they were doing.
My 17-progesterone test had come back elevated so my doc said I could have non classical adrenal hyperplasia. I have been having high testosterone and awful periods, so the diagnosis fit. But when I did the stim test, she said I was fine. I also have thyroid issues. I have about 40 pounds to lose and everything I do does not work.
I feel pretty awful right now on the low dose cortisol, so I am wondering if I should not take. I also do not ever sleep through the night and suffer from pretty bad anxiety. My head spins so bad they gave me adderall, but I am to afraid to take it.
What do you think could be the issue? Will  a ACTH stim test say if my adrenals are in overdrive?

Thanks for you advice!!!

[rumpled]

Your doctor put you on cortef... when you actually make too much!

An endo skilled in the adrenals would not have put you on medications without more testing - if he believed you to be low, he should have done an ACTH stim test. However, you have a high reading, which shows a loss of diurnal rhythm - hence you are showing more Cushing's than Addison's. But you really need more testing than just a set of saliva tests - you need ACTH (to see what the pituitary is telling the adrenals to do) as well as other adrenal hormones and other hormones that may be impacted by the cortisol.

2.5mg of cortef is, well, pretty useless as a replacement dose - and taking it incorrectly can also toss the body off even more.

Fatigue is a symptom of both high and low cortisol. I had Cushing's disease. To resolve it I ended up having my adrenals out - so I know both sides.

I suggest finding a doctor more skilled in testing and diagnosing.