Seeking help w "Adrenal Insufficiency" and low cortisol

[JaimeS]

Your result is 0.06 - which is 0.02 above the bottom of the normal range. Please look closely at the numbers.

If your result was 0.6 (not 0.06), then it would be high.

That's what I read! And that's why I said 'high' -- missed that zero. I would double-check @Rrrr .

In terms of the blood test for coritsol: I am pretty sure my doctor's nurse said there is no blood test for it. But maybe I misheard them? Or maybe they mean a saliva test would tell us more?

Eh. I'm gonna say 'no'. You don't get the tests I mentioned outside of a hospital, where you're monitored the entire time. She might have meant that they don't do that testing there, or she may have been unaware of such testing.

"adrenal autoantibodies". is that test the same as the Addisons test everyone is talking about, or a separate test?

Separate.

Never seen a commercial test for this, though, just in studies. I presume that @smartin knows it exists commercially if s/he's mentioned it.

-J

 

[caledonia]

Do you have diabetes insipidus type symptoms ie large urine output?

Vasopressin which is apart of adrenal function can be low or just not effective in controlling fluid and electrolyte balance. Its another hormone that may need replacing in addisons and adrenal dysfunction.

If you're asking me - no I don't seem to have that.

 

[Rrrr]

@JaimeS thanks! i did actually write it correctly. the first saliva reading is indeed 0.06

did i already write this?: my doctor said i don't have addisons because my BP is not low. it is, in fact, high, during this difficult time (it is usually/historically low -- but not now.)

 

[JaimeS]

Wow so that's low overall, basically. I know some of it is in range, but it's all either frankly low or low-normal. Straight-up adrenal exhaustion? We don't tend to see it in ME/CFS! The adrenal herbs you mention early on would be helpful, like licorice and ashwaghanda. You def still need to back off on the rhodiola though, IMO. Make sure you're drinking enough -- my heart pounds like mad if I haven't had enough fluids. Put a wee bit of salts in, too, but not enough to make it taste salty.

=my two cents @Rrrr !

 

[Rrrr]

@JaimeS thanks! yes, drinking lots of salt and water and taking licorice. and still getting the heart pounding. but my heart rate is fine. (i am on beta blockers, so that could be why my heart rate is fine.)

i thought you had suggested stopping the ashwaganda?

my doctor gave me the diagnosis of Adrenal Insufficiency. (perhaps it is the technical term for adrenal exhaustion?)

rivka

 

[JaimeS]

Be cautious with Ashwaghanda, too; I don't tend to fool w/serotinergic stuff. But because you have such frank adrenal insufficiency symptoms, it might be a good idea.

my doctor gave me the diagnosis of Adrenal Insufficiency. (perhaps it is the technical term for adrenal exhaustion?)

I don't know what people consider to be official terminology, but I have def heard these used interchangeably.

-J

 

[Rrrr]

An endocrinologist I saw a few years ago, for menopausal symptoms, is generously advising me via messages back and forth with his secretary. He read my write up (my history and symptoms), and saw my recent test results. He wants me to do these tests before we proceed:

- 8 am serum cortisol (no need to fast)
- ACTH level (His secretary will try to add on a sodium and potassium test too)
- Collect my urine to see how much I'm voiding in a 24 hr period.
- He asked if Adrenal (by Pure Encapsulation) has had the cortisone (cortisol?) removed (I don't know, so I asked the company and hope to hear back)
- When I told him that I'm reading how "adrenal insufficiency" can sometimes cause death, he said I won't die if I am drinking salt water.

I am so grateful to this endocrinologist for being willing to advise me without me going in to see him (which I can't do, as I'm too sick). When I saw him years ago, he was very respectful about ME ("CFS"). He knew it was real and he knew how devastating it could be.

I do have to get to a local hospital for this draw for some reason, due to the ACTH. And it is not close. So that will be a challenge, but I'm feeling like I could maybe pull it off. Or at least I'll try.

THANKS EVERYONE FOR YOUR HELP. (@JaimeS!! and everyone!)

 

[JaimeS]

You are very welcome @Rrrr !

Make sure they put the ACTH on ice. Otherwise, the readings are useless. I've had so many measures of ACTH, because it's overtly 'off' in me, every time. I watched a lab tech (who, I guess, hadn't taken blood for ACTH before) just set the blood aside. When I informed him it needed to be kept on ice, he transferred every blood sample to the freezer, even the stuff that wasn't for ACTH! Note here it says to freeze it immediately. Also, ACTH should only ever be taken in the AM. If someone tries to take afternoon, tell them you will come back in the morning to do it.

Good luck! <3

 

[CFS_for_19_years]

I do have to get to a local hospital for this draw for some reason, due to the ACTH. And it is not close. So that will be a challenge, but I'm feeling like I could maybe pull it off. Or at least I'll try.

It's good to hear that your endocrinologist is taking charge of things. The ACTH test requires special handling because ACTH is very unstable and would not survive handling and transport from a satellite lab where the testing isn't done on site. Here is a summary of the special handling:
https://www.pathology.med.umich.edu/handbook/details.php?testID=67

Special Handling:
Collect in prechilled tube and place on ice immediately. Must arrive in lab or aliquot and freeze within 30 minutes.
Offsite Collection:
Collect specimen in a chilled lavender top tube. Deliver to laboratory on ice within 30 minutes or centrifuge immediately, aliquot plasma into plastic vial, freeze, and transport frozen on dry ice.
Onsite Collection:
Draw time must be recorded on laboratory slip. Specimen must be drawn in chilled lavender top tube and placed into a container of ice immediately. Deliver specimen to Specimen Processing or aliquot and freeze within 30 minutes of collection.

ETA: @JaimeS, you beat me to it regarding specimen handling. I was fiddling around with the algorithm while you posted.

Because of the special handling required to measure ACTH, sometimes the ACTH stimulation test is ordered first. It's good that this doctor went ahead and skipped the ACTH stimulation test for you. Even though you have to drive to a local hospital for this, it spares you having to do the ACTH stimulation test, which also probably would have to be performed at the hospital. (Laboratory personnel cannot give you an injection of ACTH for an ACTH stimulation test. It has to be done by a nurse while you are remain observed in an exam room.)

Going back to the algorithm, you're at the yellow part now, where it says "AI confirmed, measure ACTH." You skipped the blue part where it says "30 min cortisol during cosyntropin stimulation test." (Cosyntropin = ACTH.)

 

[Rrrr]

i'm sooooo appreciative of all this help. i am going to try to go to the hospital today (right now! it's a long drive!) for the 8 am cortisol and ACTH. but i've been up since 4 am, tossing and turning. will that screw up the test results? it is unclear to me if the timing is about capturing the blood soon after rising, or if it is about something else. i stayed in bed, but fretted and tossed and turned for hours, then hit the road at 6:45 for the 8 am test.

@CFS_for_19_years @JaimeS

 

[Helen]

Hi @Rrrr

I had adrenal insufficiency (the medical term; adrenal exhaustion is a layman term) many years ago and recognize well your situation. This condition is not something that you should handle yourself with supplements, in my opinion.

I hope you´ll see a good endocrinologist. That´s what you´ll need. Good luck at the hospital. Just tell them about your symptoms. They should do the rest. This is just to complicated and severe.

 

[CFS_for_19_years]

i'm sooooo appreciative of all this help. i am going to try to go to the hospital today (right now! it's a long drive!) for the 8 am cortisol and ACTH. but i've been up since 4 am, tossing and turning. will that screw up the test results? it is unclear to me if the timing is about capturing the blood soon after rising, or if it is about something else. i stayed in bed, but fretted and tossed and turned for hours, then hit the road at 6:45 for the 8 am test.

@CFS_for_19_years @JaimeS

https://www.pathology.med.umich.edu/handbook/details.php?testID=67 (describes ACTH test)

Test Limitations:
The ACTH level may be elevated by stress, and is subject to diurnal variation. In normal individuals with a daytime pattern of activities, ACTH levels reach a peak between 6:00AM - 8:00AM.

It's possible that lack of sleep could lower your cortisol level slightly, but it will probably be overcome by two much stronger effects:
1. In healthy people here is a cortisol peak between 7 and 9 a.m.
2. There is also something known as a cortisol awakening response (CAR), which is an increase of about 50% in cortisol levels occurring 20–30 minutes after awakening in the morning. This is super-imposed on peak #1.

If you are fasting, this will also make your cortisol level higher.

 

[smartin]

Adrenal autoantibodies are (very simply) immune cells produced by your own body which start to attack a part of your own body - in this case your adrenal gland. Autoantibodies are VERY commonly tested for! and the only way to tell if your problem is autoimmune in origin.

This is how people get diagnosed with autoimmune diseases such as Hashimoto's (thyroid autoimmune disease), diabetes type 1 (autoantibodies against the parts of the pancreas gland that produces insulin), Primary Biliary Cirrhosis (autoimmune liver disease), RA (autoantibodies against certain types of connective tissue) and so on.

When the autoantibodies have destroyed about 90% of the adrenal gland then you'll develop symptoms of adrenal insufficiency and, ultimately, complete failure.

Demand the test for autoantibodies!! The test is for the 21-Hydroxylase antibodies. A result of 1 U/mL or higher indicates the presence of adrenal autoantibodies, which is consistent with Addison disease.
see this page for more info if you haven't looked at it yet http://emedicine.medscape.com/article/2117914-overview

That your doctor has declared that you do not have Addison's disease based on the fact that you do not have low blood pressure is ludicrous!!!!! You take beta blockers for high blood pressure!! Of course, your blood pressure is not going to be low!!! It is entirely possible that you have Addison's and high blood pressure at the same time and the low blood pressure of Addison's is the only thing that is keeping your blood pressure from being off the charts high! (and having to take higher doses of medication and additional medicines for the hypertension).

Also, you may be subconsciously working with your body's attempts at homoestasis by taking in extra salt in order to feel better (people with adrenal insufficiency very often consciously crave salt). This may explain why your blood pressure has been higher of late.

Anybody in your family (including siblings and cousins, living or departed) ever suffer from hypertension? Anybody on your mother's side of the family diagnosed with autoimmune diseases of any kind?

The chart that CFS_for_19_years has posted previously is the process used to determine if your adrenal insufficiency is primary or secondary. Addison's disease is one of the primary forms of adrenal insufficiency / deficiency. The ACTH test I was referring to is actually the cosyntropin stimulation test (short synacthen test) that is done as an inpatient in a clinical investigation unit.

I hope that everything went OK today and you get the results soon. And if you think you are suffering another adrenal crisis - especially if you are suffering from a bacterial (as opposed to a viral) infection before the process of diagnosis is complete, please get yourself to a hospital. Tell them about the investigation for Addison's Disease that is ongoing. Salt water is NOT going to do it!!

 

[Rrrr]

@smartin i will ask for that test (autoantibodies/21-Hydroxylase antibodies). Wish the endocrinologist had added it in to today's test, darn it!

Everyone,

As mentioned, I woke up at 4 am and tossed and turned a while. When we drove 45 minutest to the hospital and for the 8 am cortisol and ACTH tests. They knew all about putting the ACTH in the freezer (and using a chilled tube).

I was not fasting, as the endocrinologist said I did not have to. I also took an Ativan (I took 1/2 of a 0.05 pill) because I was so stressed out. The endocrinologist said that would be fine.

Amazingly, I then made it to my local doctor's office (close to the hospital) and got a HALF of a saline IV (only half, since we did not know how I'd react to it. My last Saline IV years ago gave me a bad set back for days.)

While getting the IV, my local doc came out and told me the cortisol test had came back already!

The results: Cortisol 15.60 ug/dl (ref. range for 7-10 am is 6.2-19.4 ug/dl).

He declared that I do not have Addisons and that maybe adrenals are not my problem, even in spite of the very low cortisol in the 4 sample of the saliva adrenal test from December 7, 2016. Of course we did not yet get back the ACTH, and of course the endocrinologist did not yet weigh in with his feedback.

Questions:

- Could my adrenals have gotten better in just two weeks, from Dec 7th to Dec 20th?
- Or is one of these two tests (the saliva or the 8 am cortisol) "off"?
- Or is my local doctor (or the lab) wrong when he says (they say) that 15.6 ug/dl is in the normal range? If we look at the great chart @CFS_for_19_years posted, we see that "15 ug/dl" is right on the line of declaring the person does not have Adrenal Insufficiency and declaring the person needs to do the ACTH challenge test.

Comments welcome!

I have no idea how long it will take to get the ACTH test result back. Especially given the Christmas holiday.

SO APPRECIATIVE TO ALL OF YOU FOR YOUR INPUT (@JaimeS @CFS_for_19_years @smartin @Helen @caledonia @Mary @heapsreal and everyone!!)

 

[CFS_for_19_years]

Could my adrenals have gotten better in just two weeks, from Dec 7th to Dec 20th?
- Or is one of these two tests (the saliva or the 8 am cortisol) "off"?
- Or is my local doctor (or the lab) wrong when he says (they say) that 15.6 ug/dl is in the normal range? If we look at the great chart @CFS_for_19_years posted, we see that "15 ug/dl" is right on the line of declaring the person does not have Adrenal Insufficiency and declaring the person needs to do the ACTH challenge test.

I would trust the cortisol test you had today as the most reliable indicator. You have a very healthy cortisol output and 15.6 is definitely in the normal range. You need to go by your lab's stated normal range, not what's in the algorithm. The algorithm is just an estimate of the cutoff values.

It's hard to say why your saliva sample didn't agree with the blood test. I wouldn't expect to see such a drastic difference between blood and saliva. When I did saliva sampling and also had a morning cortisol blood test within a week or two of each other, both were at the very top of the normal range. I used ZRT Lab for the saliva cortisol tests.

 

[smartin]

No, it is not possible for your adrenals to get better in the space of two weeks if you have adrenal insufficiency.

In the UK, blood test results of cortisol are largely ignored because the test and/or results are considered somewhat to very unreliable. In the UK, a positive on the autoantibody tests and failing the short synacthen test is considered the definitive diagnosis for Addison's. (If you fail the short synacthen test, then your health is already incredibly bad and your life is in the toilet!! The test almost becomes a formality - mostly because doctors don't like prescribing cortisol - even physiological doses.)

It is possible that the saliva samples you sent in somehow became compromised and produced the results that were sent back to you. (Also, I would phone the lab and double check that the results you got were from your samples.) You could repeat the saliva test with another lab and see if you get a different result. You would need to make sure that you follow instructions very precisely, especially with regard to eating or drinking before collecting saliva.

If it turns out not to be Addison's, don't be too despondent!! I know you would like to find answer to the question of what is wrong with you but having a diagnosis of Addison's is not a good thing. Especially if you have suffered with the undiagnosed disease for years. People in this situation have reported that getting the supplemental hormones (cortisol, etc.) did not get them back to 100% and that they still experienced very significant impairment on their lives and activities. The earlier that it is caught, the better. Generally, the case with most things!

 

[CFS_for_19_years]

In the US, serum cortisol is considered more reliable than saliva. That is why at "Camp Cushie" at Swedish Hospital in Seattle, serum (not saliva) cortisol levels are taken every 4 hours for 32 hours to rule out a diagnosis of Cushing's syndrome/disease. They put a line in to collect these.

 

[JaimeS]

Agreed @CFS_for_19_years -- serum more reliable.

Not agreed so much regarding cortisol levels and fluctuations. It would be weird for your levels to shift so much, but as I commented earlier, during acute phase I often had signs of frank dysfunction that seemed to settle in a week or two. Rather than continue to speculate, I think it's important we wait for your other results.

-J

 

[Rrrr]

Thanks, all, for your thoughts! Your help is really keeping me calmer than I would be otherwise during this episode. The one good thing about getting ME is the amazing generous and smart people you meet.

@smartin i did ask my doc for the antibodies test. let's see what he says.

@JaimeS yes, i thought about you, and what you just wrote just above, as you wrote the same thing earlier (re: how you had this amazingly wildly different test results). (but it could also be that the lab screwed up on the testing. i did the saliva test fine. so not it should not have been me that was the problem. maybe the lab?)

@CFS_for_19_years will the (still-pending) results from the ACTH test tell us anything more that will be helpful, since the 8 am blood cortisol test was fine?

all: i'm getting different answers when i ask the lab techs, doctors and nurses if the fact that i got up at 4 am and tossed and turned before the 8 am test will mess up an accurate test result. i was told, "no!", "yes!!" and "i'm not sure." my local doctor said yes! i asked the endocrinologist doc this, and have yet to hear back.

 

[caledonia]

@Rrrr

These are similar to my results - normal morning serum cortisol, but seriously tanked 4 point saliva cortisol at all 4 points.

I don't tolerate typical adrenal supplements; they're all too overstimulating. So I make do with supplementing electrolytes.

If I get into a period of bad prolonged stress, I have found I do tolerate a small amount of Dr. Wilson's Adrenal Rebuilder, which doesn't contain hormones.

Rich Vank's hypothesis was that glutathione depletion of the hypothalamus and pituitary cause a loss of signaling to the adrenals. So the adrenals themselves are ok. It looks the same on a saliva test whether it's a signaling problem or an actual adrenal problem.

My adrenals have gone from near 0 to about 50% of normal. I believe this was due to getting my last mercury filling removed. About a year and half later, my thyroid recovered from autoimmune thyroiditis, chronic candida cleared and some other great stuff happened all around the same time.

Mercury and other toxic metals deplete glutathione as well as inhibit methylation and the Kreb's energy cycle.

I am also doing methylation supplements which indirectly raise glutathione, but with the tiny amount I'm able to take, I think mercury removal had a much greater impact.

I'm currently doing the Cutler frequent dose chelation for mercury, lead and arsenic. I just finished round #13.

See my signature link for more info on the Cutler protocol. Testing, interpretation, how to do it, forums, etc.