Seeking help w "Adrenal Insufficiency" and low cortisol

[JaimeS]

Am poster-child for this particular brand of weirdness: normal cortisol levels mean nothing about your ability to produce it. Allow me to explain.

I have low ACTH. My values range from wtf low to barely normal. However, my cortisol levels are (usually) normal but (rarely) low. What appears to happen is that, when I'm puttering along as normal, I produce cortisol at a slow rate but get it up to normal levels. If a stressor comes along, however, I run through my cortisol levels like mad. What's worse is that unlike the rest of the planet, I don't seem to up my cortisol production during stressful times.

Keep in mind that a 'stressor' can be anything from an infection to a car accident. People consider stress psychological, but in many ways to the body it's all the flavors of the same thing.

I got all this information from the following tests:

1) Cortisol measurements (usually normal, but rarely very low)
2) Low ACTH (from repeated, repeated, repeated testing -- note that rarely, it was in normal range)
3) A proper ACTH stimulation test (that showed I made cortisol in response to ACTH just fine)
4) An ITT test (that showed that I don't make more cortisol than usual -- and the same goes for any other stress hormones -- in the presence of a physiological stressor. In fact, my levels drop, showing I'm 'using up' these hormones far faster than I can make them).

This is my long way of saying that you still need the ACTH test (and maybe the ACTH stimulation test, and maybe the ITT) to get the full picture. Again, this is if you're well enough for stimulation tests, which are rough on the body. During the ITT my blood sugar went down to 28-mmol/L... not for the faint of heart.

But again! Speculation! Potentially useless!

....but since you said it's making you feel better.

-J

 

[smartin]

I did say earlier that the results of a saliva cortisol test are not recognised in the UK, right?

And here's a great example of UK NHS (non)logic:

The result of an 8am blood test for cortisol with the draw done at the hospital is considered unreliable...

However... The results of a blood test for cortisol done for the purposes of conducting the short synacthen test (done in the clinical investigation department in the same hospital) are accepted. Same person, same blood, same blood draw procedure, same laboratory, same test procedure!

Wait for the results and go from there. Good luck!

 

[CFS_for_19_years]

This is how lack of sleep can affect your cortisol levels:

5 Ways An All-Nighter Messes With Your Body — & How To Bounce Back
http://www.refinery29.com/2015/07/91047/should-i-stay-up-all-night

A small, new study, soon to be published in the Journal of Clinical Endocrinology and Metabolism, suggests sleep deprivation could even affect the genes that regulate your circadian rhythm. In the experiment, 15 participants (all men, unfortunately), all got one full night of sleep and one sleep-deprived night. After staying up all night, the participants' cortisol levels and genetic markers were out of whack, indicating that a single night without snoozing can cause big-level changes.

This is the study they are talking about:
"Out of whack" refers to lower cortisol levels, among other things:

Acute Sleep Loss Induces Tissue-Specific Epigenetic and Transcriptional Alterations to Circadian Clock Genes in Men
http://press.endocrine.org/doi/abs/10.1210/JC.2015-2284

Following acute sleep deprivation, fasting serum cortisol concentrations were decreased at 0730 h (2449 ± 932 vs 3178 ± 723 nmol/L; P = .039), compared with after sleep.

That's a 23% decrease in cortisol levels due to sleep deprivation. The units of measurement are different; this investigation was done in Sweden. Europe and the US don't always use the same units.

 

[Rrrr]

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.

@heapsreal I have found out that i don't have addisons or adrenal insufficiency. Should I still check for Vasopressin issues on a blood test?

 

[Rrrr]

The kind endocrinologist who is helping me via phone and email through his secretary (because I'm homebound) called me just before he left for the holiday break (back Jan 4th). Because his secretary is on holiday break already, he called me himself today. HOW KIND! I'm so relieved. He said the following:

- My "8 am cortisol" test results (results back already! from a test I took yesterday!) excludes me having adrenal insufficiency (AI), and excludes AI being the cause of my fatigue. But to be 100% sure, we must wait for the ACTH test result, which could take 1-2 wks. He will call me when that result comes in.

- I don't need to do the "adrenal antibody test" (that someone on this thread wisely suggested I do) because I don't have AI.

- My supplement called "Adrenal" (the Pure Encapsulation brand), did not cause my high cortisol 8 am test results, because I did not take it for about 20 hours before the cortisol test blood draw. Besides, he said these types of supplements rarely have cortisol in them (tho we can't be sure this one does not have it). (I just heard back from the company: they take out most cortisol and cortisone during the processing of the supplements. The Pure Encapsulation techie guy thought it would not effect my test results.)

- The endocrinologist said me getting up at 4 am did not effect his interpretation of my 8 am cortisol test results.

- He wonders what my local doctor thinks of the fact that my Quest saliva test showed such terrible results. I said I don't recall if my local doctor commented on that with me yesterday (I was out of it yesterday when we spoke), but that maybe the Quest lab messed up. The endocrinologist agreed that this was likely a lab screw up. I asked if I should re-do the test. He suggested I do not, and I just stick with the 8 am cortisol test instead, which, he felt, is what I should have done in the first place.

- He does not know what is causing my severe symptoms (and now my intense hair loss), but if/when I'm well enough, I'll make an appt and go in to see him. I hope I can.

Conclusion: I'm quite relieved. Even though I still don't know what caused my severe symptoms a few weeks back, symptoms I never had in my 27 yrs of being sick, and is still causing my extreme (more extreme than usual) exhaustion, am relieved that I don't have Addisions or Adrenal Insufficiency.

 

[Rrrr]

PS I felt better from the saline IV (500 ml of saline) last night. But today I don't feel better. On the other hand, I'm not worse either. And thus I'll see if I can get another. Does anyone know if Medicare covers saline IVs? My local doctor's office charges $60 for them and does not submit them to Medicare.

 

[heapsreal]

@heapsreal I have found out that i don't have addisons or adrenal insufficiency. Should I still check for Vasopressin issues on a blood test?

You could but apparently not accurate. Instead you could do a 24hr urine collection, mostly interested in total volume. Normal is about 1.5litres a day any more then this can indicate low vassopressin or its ineffective and possible get a diagnosis of diabetes insipidus. So it can cause dehydration and low electrolyte levels that could put another heavy layer of fatigue onto cfs. If you think its an issue, try measuring your urine volume overc24hr period. This information will help convince your dr to run a more formal test.

For me treating this has been a great help especially at night as i didnt realise how often i was waking up just to go to the toilet, that in itself was playing a big part in my insomnia.

Theres a common saying in cfs ie drink like a fish and piss like a race horse. This is generally a signalling problem from the hypothalamus/pituitary to the kidneys/adrenals.