Sick for months with low cortisol

Hi, I had a bad infection and was in the ER and keep getting sick every week.  I have a 4.0 AM cortisol level but my doctor refuses to prescribe me anything.  I am trying to self treat with adrenal glandulars and HC 2.5% cream.  I usually crash a few hours after waking up and fall asleep.  The doctor said since I have gained 30 pounds it's due to high blood sugar/insulin.  Any thoughts would be great!

[rumpled]

An ER doctor is not a treating doctor - you have to see an endo and the endo has to do a stim test.
But the supplements you are on and the creams will interfere with the test.

The weight gain and high blood sugar with a low morning cortisol can actually be high cortisol, not low - high cortisol can be a loss of diurnal rhythm where you are high when you should not be and low when you should not be and you should be high in the morning. Only proper testing can show that and one test does not.

Both high and low cortisol have immune issues and fatigue.

[ill13632]

thanks very much for the reply!
well the AM cortisol level was 4 (blood sugar was normal) the endo still refused to give me meds even though my other cortisol test was like 7 also- endo says it is due to high insulin and sugar intake?
I don't know why I am getting these serious infections even though I keep going to these doctors who tell me nothing is wrong

[ill13632]

the level of 7 was a afternoon cortisol test

[ill13632]

ok my 1pm cortisol test is actually 2.4 0.4-60.  isn't that low enough to be Addison's disease?

[rumpled]

1pm is not a time to test cortisol - there is no range for that time of day - it is not a diagnostic test.
Your doctor is not doing a correct protocol. Cortisol normally goes up and down. It can be low and be something completely different, for instance, if you are high all night. You need to be tested correctly to be treated correctly.

Your blood sugar can be normal. I had high cortisols and normal glucose, cholestrol, low BP etc.

Your endo has NO idea how to test for low or high cortisol. Please find another. If he suspects high he needs to run 24 hour urine tests, saliva cortisols (at proper times) and other labs, if low, he needs to run an ACTH stimulation test after blood and saliva tests at the correct times - that is more normal. Have you had an ACTH as well?

[ill13632]

yes I had an ACTH but they didn't give me the results when I asked for them.  I did one AM test and that was the 4.0 low result but he just dismissed it as being due to glandular suppressing my adrenals.  The endo wants me to wait 6-8 weeks to retest but I already had 2 tests and the one 2.4 level so I don't know why he doesn't treat me asap.

[rumpled]

Were you taking the glandulars before the testing?
The glandulars will suppress the adrenals - so you cannot take them and test. Cortef like adrenal medication OTC or script will effect it.

He cannot treat you if he cannot get valid testing. Plus he has to do a stimulation test.

[ill13632]

he gave me a script for ACTH/Cortisol morning but they didn't run stimulation
the 2.4 1pm level was before I started the thyroid glandular with adrenal tissue

[rumpled]

They have to run the tests first then determine you are low several times, then run a stim test. It is a process.

[Ozzieandharriett]

Maybe you should get another endo opinion? Try to go to a large teaching hospital even if you have to travel a bit. It can't hurt.
Good luck
MaryAnne

[ill13632]

I gave the lab the script for cortisol and ACTH test, was I supposed to get a stim test?

[ill13632]

they only drew blood but I didn't get an ACTH level back

[rumpled]

They have to do separate tubes for cortisol and ACTH. ACTH and cortisol need different testing protocols and different tube tops and handling.

A stim test has to be done in an office, usually. They draw baseline tests, give you the stim agent and wait certain intervals usually 30 and or 60 minutes and draw on those intervals.

A stim test is usually among the last tests done.

[ill13632]

can I treat with up to 75mg/day of HC?  

[rumpled]

You mean without a doctor's script? 75mg is a huge amount of HC. 20mg is suppressive of the adrenals and is around the normal dose for most people.
75mg would probably give you steroid induced Cushing's syndrome IMHO.

If you don't need the steroids, you risk damaging your adrenals and large doses can damage your body.

Corticosteroids are best done under a doctor's supervision.

[ill13632]

I have these 25mg HC suppositories from the GI doctor and I read you can take up to 75mg or 3 a day?  My cortisol at 1pm was 2.4mg isn't that close to Addison's disease?
I took 2 or 50mg and I finally feel normal, can sleep and breathe

[ill13632]

I don't know why my endos don't treat me when I clearly have low cortisol disorder

[ill13632]

is that with the HC suppositories you don't absorb the full 25mg?

[rumpled]

You can take up to three a day - but you are treating an inflammatory disorder, not AI. And you should still taper down from such a dose (if you read the insert, that should be in there as well).
HC is well absorbed through the skin and tissues. For instance I know those that try to get high testing for Cushing's if they have any HC cream around them, the 1% can cause a urine test to hit the 1000's - so the docs can easily tell.

One test at one time may or may not diagnose you. It is low, but a competent doctor would test you more before putting you on a lifetime regime of medication. There are side effects to the medications and consequences. The test was not done at a proper, diagnostic time and cortisol lowers in the afternoon anyway - so the doctor needs to test in the morning and do a stim test. ACTH and an antibody test would also be prudent.

[ill13632]

thanks so much for the info!  do I have some inflammatory disorder then? if I do have AI then I have to take meds forever?  isn't there anything I can take or do?  

[rumpled]

I have no idea if you have an inflammatory disorder. That is up to a doctor (I am not a doctor) who can see you, take a history, run tests etc.
If you do have AI, yes, you do have to take meds forever as you are replacing the function of a gland and without it you would die.
That is why you need to be diagnosed properly.