Hey group, I did a second cortisol saliva test. I have failed 5 SST and was put on 15mg hydrocortisone for over a year. My endo weaned me off & after a month of no HC retested and this 8am was 450nmol and the rise was 550nmol. It has been 4 months since I have had no HC and I have been feeling ever so poorly and have been spending more of my time in bed rest.
I purchased a medicheck cortisol test in April 2019 but it took many months to come off HC and I have just done the test this week they said they could not give me a doctors interpretation of this now. Can someone help me?
Cortisol - 8am Waking 3.620 nmol/L
6.0 - 21.0<6.0 Possible Addison's
(Range: 6 - 21)
Noon 3 .240 nmol/L (Range: 1.5 - 7.6)
I napped at 2pm & woke at 4pm
4pm <1.5 nmol/L (Range: 0 - 5.5)
11pm <1.5 nmol/L range 0 - 2.0>5.0 possible Cushing's
What does this mean for my adrenals and do I need HC? Thank you
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Yennn
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Unfortunately you've chosen a test that's not a particularly good one. This test doesn't include DHEA which is important to test alongside cortisol as it helps determining stages of adrenal fatigue.
What is also not particularly good about this test is that when you see the numerical results as you have shown, the range for samples 3 and 4 have zero as the lower limit. As ranges are based on healthy people, it anyone did actually have a level of zero they would be far from healthy.
Also, for samples 3 and 4 there is no actual level, it just says <1.5 and this tells us nothing.
Would you be able to swap your photo for the one where it actually shows the bar graph where your level is plotted. That helps to tell us the actual level for those samples.
I did a regen lab one with dhea before and posted and not one person still to this date could tel me what the dhea result meant
Nobody is going to be looking at your post of 2 years ago now, and the results wouldn't mean anything anyway, things wont be the same. Did you look into high DHEA yourself as suggested, you can do your own research.
Yeh I looked into it and couldn’t find anything on low cortisol with high dhea. I follow dr myhill who has a lot of information online about Cortisol saliva test.
The post that I did post two years ago got a lot of comments but also no one had came across low cortisol high dhea.
I went back on medicheck it only allows me to check the bar graph one test at a time I will upload the one at 8am
Which test would you recommend me to do if not the medicheck one?
We already know the levels for samples 1 and 2, they're in your post. We need to see exactly where on the bar graph samples 3 and 4 - which just say <1.5 - are.
Regenerus and Genova Diagnostics both test cortisol plus DHEA, I use Regenerus as they contact you direct when results are ready, Genova send them to ThyroidUK who then send them to you.
Doh 3Rd time lucky! I loaded 3 let me know hand u have seen it thank you and I will load 4. I don’t think ki would use regen again as they couldnt interprate the results. I think we spoke about low cortisol and high dhea back two years ago as u just done a cortisol saliva test at the same time and we were both baffled as to why I had such a highly elevated dhea.
No, Regenerus don't interpret results, this is be explained on ThyroidUK's website on the page which gives information about how to order tests from Regenerus. Same goes for Genova.
Think I clocked upload before the picture was downloaded. That is it on now. Medicheck has a doctor that gives an interpretation but i took me over 6 months to wean off HC and now they don’t interpret.
As I have used Regenerate before and for results I couldn’t find any one or doctor or functional doctor to interpret I’m reluctant to pay and do another cortisol Test.
Is there any information you could give me with these results and why possible I could do. I have literally been aliens the bend with test, 5 SST 5 endos Dutch plus test I just want to know what to do and help my struggling adrenals. Thank you for your help.
Sample 3 result is very close to the bottom of the range and should be close to 50%. Optimal results for a cortisol saliva test are
Morning at the top of the range• Noon approximately 75% of the range• Evening close to 50% of the range• Nighttime at the bottom of the range
I can't tell you what you should do, I'm not qualified and you seem to have a complicated and confusing history as far as adrenals are concerned.
These results show very low levels overall and humanbean has given sage advice based on these results. But previous tests at hospital seem to have shown no problem so this is beyond anything I have any knowledge or experience of.
Complicated and confusing is the best words you can use to describe this.
I have been to the gps plenty of them been to the nhs Endo’s been to private contacted Endo society seen the best pituitary Specialst in my area. All my doctors notes and letter are them contradicting and in the end all the Endo’s group together keep themselves right and say sick day rule of HC to ensure they are protecting themselves but I am still left sick and unable daily. Thank u for u help I don’t really know where to turn to next or where to ask. I have failed 5 SST some are borderline just fails and some are completely off, with results as 316 range 430nmol and doc say mri are fine and it is not secondary and my results on blood aren’t low enough to dx addisons. Feels so so lost with it all that I took a chance to purchase a saliva test on my own and try and advocate and figure this out myself.
I would take your results to a GP and ask for an urgent early cortisol blood test (8am - 9am).
You should also ask to be referred to a competent endo for testing for Addison's Disease and adrenal insufficiency - there are three different types - see this link :
The doctor who took you off the HC was very wrong to do so, in my opinion. I would suggest asking your GP to refer you to someone other than the doctor who took you off the HC.
I think you should also learn the symptoms of Adrenal Crisis, and show them/print them out for family, friends, relatives, colleagues etc.
Rise was 550 I am now on 10mg HC sick dose. I have also seen 5 endo and changed gp practise 4 times u should see my gp letters they all say borderline results
Even with results such as
200 at 9am and failed SST at 316.
Every SST is up and down
The first one was a fail & then they wanted to retest to double check
It increase so they dismissed it as my adrenals were working better then
The third out right fail still no HC so I went to see a private endo who is on that list a DR k A in Edin. Who says she would prx 15mg but she’s needed to do a SST and that one was much better than previous the Rise was 420 range was 435 I was once again taken off and then my last one passed.
None of my gp wish to discuss this I have refused to leave their offices for 45 mins sometime arguing my case.
Borderline is all and then sick 10mg HC
I’m almost so close to giving up chasing I leave so so disappointed and what a waste of time.
I'm way out of my comfort zone on your strange results and trying to find out possible reasons for them happening, but out of curiosity I've wondered if I could find any possible reasons why your results are so weird. Bear in mind that this is pure speculation on my part.
The first thing to point out is that saliva cortisol and blood cortisol are not measuring the same thing.
Hormones are carried around the bloodstream mostly attached to (bound to) transport proteins known as globulins. (Globulins are proteins.) In the cases that I've read about (thyroid and cortisol) only a small percentage of a hormone found in the bloodstream is unbound/free, most of it is bound.
The transport protein for cortisol is Transcortin. Some cortisol is bound to albumin too.
Blood cortisol testing is measuring cortisol bound to Transcortin + cortisol bound to albumin + cortisol which is not bound to anything.
Saliva cortisol measures only cortisol which is not bound to anything.
So, it follows from this that if your blood results and saliva results are giving wildly different results then the problem might be caused by these transport proteins/globulins.
I've read that the body can make immediate use of free/unbound hormones but that bound hormones have to be separated from their transport proteins before use.
So, some possible suggestions as to reasons for your results is that you could have more cortisol attached to Transcortin and albumin than normal and/or that your body is not good at separating cortisol from its transport proteins.
...
The link I gave about Transcortin above states :
Transcortin is produced by the liver and is increased by estrogens
Do you have high levels of estrogens? Are you on the pill? Do you take HRT? All of these things could be causing problems with your adrenals. A link I found might be of interest - although I should point out that it is extremely old and there are probably better links available on the subject :
There was another route I tried to find info on but failed, probably because I don't know the correct names to search for.
If cortisol is bound to transcortin and/or albumin there is obviously a mechanism for separating cortisol from what it is bound to. If that mechanism doesn't work well then that could mean your free (unbound) cortisol levels might be low, while total cortisol could be normal or high.
Unfortunately I don't know anything about unbinding cortisol nor how it is done.
You could be on to something there humanbean because I didn’t feel as if I had adrenal problems Until the I’d been on eostrogen only gel for 6 months,initially did well then all the side effects started kicking in and every one of the hrt consultants I saw privately said no it couldn’t possibly be the hrt that caused your side effects so I took the descision myself to stop it and funnily enough most of the problems stopped but I still had that pain in my back,just above my kidneys and I still have it on and off,this weekends been particularly bad so I’ve made contact with someone I read about on here that I think/hope can help I can’t go it alone anymore right now I’m feeling a bit defeated again.
I think it’s possible that hrt or pill etc can instigate these things but they won’t address it because no one reports it and if they do it’s just dismissed.very astute of you to put this forward ,good reasoning there well done I hope it helps yennn.x
Your early morning cortisol of 450nmol/Ls is a good result but you didn't stim very much, I would have hoped that it would have been higher than that. Did they do an ACTH blood test at the start of SST? This would show if the issue is pituitary based rather than adrenal. It's important to see an Endo who understands pituitary/adrenal issues. Most of the Endo's don't. I would be able to tell you your nearest Centre of Excellence if you would like me to.
Hey Pauline , Aw you I did see an endo who was based pituarty and on the endocrine society her name if I’m allowed to use it is dr karen adamson I’m from Scotland if you have anyone else that would be great. I so far have seen 5 endos. They all agree I should only been on sick day prx.
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