Cortisol and catecholamines tests - low cortisol / addisons?

lunarainbows

lunarainbows

Senior Member (Voting Rights)
Has anyone else here done cortisol or catecholamines tests?

A few years I did catecholamine tests (check for adrenaline, noradrenaline (I think)).. it came back as not detected. At the time the doctor just left it as it wasn’t a cause for concern. Also my cardiologist said he would like me to check for cortisol.

Later on, my mum spoke to an extended family member who is a doctor and she said I should have had a 24hr urine catecholamine done instead. Anyway now I’ve decided to do some cortisol & catecholamine tests myself through medichecks, in advance of an endocrinologist appt I want to book, and last week did a cortisol Saliva test & had the results back.

my morning cortisol was 2.6 (normal should be 6-21).

It increases a bit by 12pm and then decreases down to 0 quickly, which it should do I think. It’s the morning cortisol in particular that’s very low.

The results says suspected addisons. The doctors notes say to make an appt with the GP as my morning cortisol in particular is low and at a level that raises concerns about addisons.

Doesn’t make sense as this condition causes low BP and I have high BP generally.. well a BP that is a bit all over the place.

Anyway, has anyone had these kinds of results — low cortisol and/or low catecholamines? Or even conversely - high cortisol and/or high catecholamines?

I’m making an appt with my endocrinologist very soon btw. Just interested if other people with ME had these (or opposite) results.
 
Also is it possible to have undetectable catecholamines (adrenaline) when your heart rate is beating super fast and you’re sweating and dizzy?!
 
I think quite a few people with ME/CFS have a later morning peak cortisol. I think it's just because many of us tend to sleep a bit later, either because we don't have to get up early to go to work, or the disease skews body clocks or because we need to sleep longer, or some of all of those possibilities.
 
Yes i have low morning cortisol. Seems to be common on the ME and Pots groups I belong to.

When I had a short synacten test (ordered by an nhs endocrinologist) my response was blunted. Not enough for a dx of Addisons though.

Seems to lead to nothing.
 
I'm not sure if this makes sense - my brain was much better when I wrote this on PR in 2013:

"The rationale for the ACTH stimulation test appears stupidly simplistic to me. The doctors think that we may have a problem producing cortisol. But it doesn't appear to occur even to some top endocrinologists (such as the one I saw) that the problem producing cortisol may be due to a problem producing ACTH. So we may respond normally to exogenous ACTH, and produce cortisol. If we don't produce enough of our own ACTH, or produce it at the wrong times, our day-to-day cortisol will continue to be abnormal."

"I think that HPA axis dysregulation and hypocortisolism could be part of a perpetuating loop."

from https://forums.phoenixrising.me/thr...drenal-axis-function-in-cfs.25602/post-392250

(By the way, my BP is also high and all over the place.)
 
MeSci said:
I'm not sure if this makes sense - my brain was much better when I wrote this on PR in 2013:

"The rationale for the ACTH stimulation test appears stupidly simplistic to me. The doctors think that we may have a problem producing cortisol. But it doesn't appear to occur even to some top endocrinologists (such as the one I saw) that the problem producing cortisol may be due to a problem producing ACTH. So we may respond normally to exogenous ACTH, and produce cortisol. If we don't produce enough of our own ACTH, or produce it at the wrong times, our day-to-day cortisol will continue to be abnormal."

"I think that HPA axis dysregulation and hypocortisolism could be part of a perpetuating loop."

from https://forums.phoenixrising.me/thr...drenal-axis-function-in-cfs.25602/post-392250

(By the way, my BP is also high and all over the place.)
Click to expand...

Aah...Is there not a way to check for ACTH levels itself?
 
ukxmrv said:
Yes i have low morning cortisol. Seems to be common on the ME and Pots groups I belong to.

When I had a short synacten test (ordered by an nhs endocrinologist) my response was blunted. Not enough for a dx of Addisons though.

Seems to lead to nothing.
Click to expand...

That’s interesting. Since your response was blunted, is it not possible to trial you on Cortisol? Although I guess it won’t be in the guidelines..

The fact that many people with ME have it.. surely it must mean something and should be investigated further? My sleep is not so bad as to influence the results too much.. I sleep late but not Too much later than some “normal” people usually between 11pm-12.15am. And I wake up usually around 8.30- 9.30am.
 
lunarainbows said:
That’s interesting. Since your response was blunted, is it not possible to trial you on Cortisol? Although I guess it won’t be in the guidelines..

The fact that many people with ME have it.. surely it must mean something and should be investigated further? My sleep is not so bad as to influence the results too much.. I sleep late but not Too much later than some “normal” people usually between 11pm-12.15am. And I wake up usually around 8.30- 9.30am.
Click to expand...

If you do a search for Hydrocortisone you might find some old threads. Been one of those things talked about to death before. I don't know if we have any new information sadly. Some people tried HC and some adrenal supplements.
 
ukxmrv said:
If you do a search for Hydrocortisone you might find some old threads. Been one of those things talked about to death before. I don't know if we have any new information sadly. Some people tried HC and some adrenal supplements.
Click to expand...

Oh.. It’s sad that there’s no conclusive research or results done about cortisol and what it means for ME and what can be done about it
 
adambeyoncelowe said:
There were a few clinical trials (the last inexplicably upped the dosage on earlier tests) which ended up with a negative result.

Anecdotal evidence is equally weak. Many people get worse on it.
Click to expand...

Has there been any research that seeks to look into or explain why people with ME might have lower cortisol in general?
 
lunarainbows said:
my morning cortisol was 2.6 (normal should be 6-21).
Click to expand...

Suggested optimal levels for saliva cortisol are given on this link - see example 1 :

http://www.rt3-adrenals.org/cortisol_testing.html

NICE info on diagnosing and managing Addison's Disease. Click on all the entries in the left hand side of the page :

https://cks.nice.org.uk/addisons-disease#!diagnosis

For more info on how endocrinology departments should conduct adrenal insufficiency tests, see pages 68 - 70 in this link for the Short Synacthen Test (SST test). Note that every hospital and lab will have their own reference ranges.

http://imperialendo.co.uk/Bible2018.pdf

MeSci said:
"The rationale for the ACTH stimulation test appears stupidly simplistic to me. The doctors think that we may have a problem producing cortisol. But it doesn't appear to occur even to some top endocrinologists (such as the one I saw) that the problem producing cortisol may be due to a problem producing ACTH. So we may respond normally to exogenous ACTH, and produce cortisol. If we don't produce enough of our own ACTH, or produce it at the wrong times, our day-to-day cortisol will continue to be abnormal."
Click to expand...

There are several ways in which adrenal insufficiency can occur - see "Types" on this link :

https://en.wikipedia.org/wiki/Adrenal_insufficiency#Types

80% of cases of Adrenal Insufficiency are caused by Addison's according to that link. This may be why endocrinologists often ignore the other types and declare them to be "rare", so they don't bother testing for them. But ACTH can be tested for as part of an SST test. Unfortunately, ACTH testing is often not carried out and I assume it is to save money or because endocrinologists are usually diabetes specialists and don't know what they are doing.
 
I forgot to say...

Cortisol testing isn't always testing the same thing.

Approx 75% of cortisol found in blood is bound to either a transport protein called Transcortin, or serum albumin. Only a small amount is found unbound in blood.

Cortisol found in saliva is unbound.

Cortisol found in urine is also unbound.

So there isn't necessarily an obvious relationship between results for cortisol in blood and cortisol levels found in saliva and urine, because they simply aren't measuring the same thing.
 
Hi @Arnie Pye would it be ok to PM you? As I’m a bit confused about the links.

I think from my saliva sample I would come under “example 3”. All others are low except at 12pm it goes to middle of normal range. The doctor from medichecks wrote a note on my results saying I should Speak to a GP about addisons.

I also managed to dig out some Blood tests which I had done last year when the local nurse came to take some blood.. I think there were at the request of the cardiologist.. which was a pre 9am cortisol test but I had already been awake for about 2 hours by that point. Level was 308 which was normal. But on the NHS nice website you linked above.. it says level between 100 and 400 you still should be referred to endocrinologist for further testing. So.. a bit confused!

I think I will request an ACTH test too. Thank you for the links.. it’s all really helpful.. I like to be really prepared in advance of doctors appts.
 
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I only had one cortisol test done and it was the exact number for maximum range, but I think it was in blood not saliva or urine so eh. I mention because I didn’t actually know lower cortisol was a more common finding in ME/CFS people even anecdotally, and I think we do need to just approach ourselves as individuals.

Just a thought but fludrocortisone is sometimes used to treat POTS symptoms, but I believe its also used in Addison’s? Not sure but you might have some luck in finding if any documentation of florinef/fludrocortisone use in ME/CFS as well as Addison’s, not sure if they ever did any studies measuring cortisol levels or even specifically for fludrocortisone in ME/CFS, I think they did a couple in POTS unless it was all just clinical reports, my memory is a lil foggy.
 
lunarainbows said:
Has there been any research that seeks to look into or explain why people with ME might have lower cortisol in general?
Click to expand...
Yes, but it's pretty woolly. In general, the consensus, as mentioned earlier in this thread, seems to be that a blunted or delayed cortisol response could be due to later waking, poorer sleep, a wonky circadian rhythm in general, or less daily stress, due to reduced activity.

Obviously, the favoured opinion of some is that it's a sign of burnout and emotional exhaustion, blah, blah, blah. But I think that's a stretch.
 
I did a 24hr saliva test 2 years ago.

Waking cortisol was normal, midday low end normal, afternoon above normal range, and pre-sleep top end of normal range.
DHEA was at the bottom of normal range.

I didn't really know what to do with the results (my GP would have been totally dismissive), beyond it suggesting something else apart from HR, BP and temperature was a bit all over the place.

I wish I hadn't spent money on the test and other supplements then, as it would have been more useful for paying the bills now.
 
Ebb Tide said:
I wish I hadn't spent money on the test and other supplements then, as it would have been more useful for paying the bills now.
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The thing is we don’t know it’s negative/not worth following up on, unless we do the tests.. And in the U.K. you don’t get much or any follow up, let alone an nhs referral to an endocrinologist, once you’re diagnosed with ME...
 
lunarainbows said:
Hi @Arnie Pye would it be ok to PM you? As I’m a bit confused about the links.

I think from my saliva sample I would come under “example 3”. All others are low except at 12pm it goes to middle of normal range. The doctor from medichecks wrote a note on my results saying I should Speak to a GP about addisons.

I also managed to dig out some Blood tests which I had done last year when the local nurse came to take some blood.. I think there were at the request of the cardiologist.. which was a pre 9am cortisol test but I had already been awake for about 2 hours by that point. Level was 308 which was normal. But on the NHS nice website you linked above.. it says level between 100 and 400 you still should be referred to endocrinologist for further testing. So.. a bit confused!

I think I will request an ACTH test too. Thank you for the links.. it’s all really helpful.. I like to be really prepared in advance of doctors appts.
Click to expand...
What happened? Had a 309 cortisol result and negotiated with the endocrinologist to get an SST which is planned for a few weeks time.
 
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