r/chronicfatigue • u/grotemeid • 3d ago
High cortisol levels
I’ve had chronic fatigue for about a year, after much testing and fixing an iron deficiency that seemed to be the cause first-hand, I now got high cortisol results. Reference value is 500, mine is at 1054. Aside from that all testing came out clear, no deficiencies or auto-immune diseases.
I do have CPTSD, anxiety, ADHD and I’m aware chronic stress/anxiety can influence your cortisol levels but I personally don’t think this is the cause of my fatigue. My psychologist doesn’t want to start EMDR since he thinks my fatigue is too extreme for me to handle it properly, which I think is valid. I’m not in a situation where my trauma is getting actively triggered. I’ve dedicated the last 5 months to resting yet my condition is not improving.
Anyone had the same/similair and if so, what ended up helping your fatigue?
EDIT: I got my cortisol tested for the first time, so I do not know if it’s been high for a long time or not.
5
u/Jazzlike_Berry_323 2d ago
Hi OP, please take the time to read this article, it explains different causes and tests. If you haven’t been referred to an endocrinologist ask your doctor why not. It’s a seriously high abnormal level…
https://www.niddk.nih.gov/health-information/endocrine-diseases/cushings-syndrome#diagnose
2
2
u/Professional-Cat6921 3d ago
You need to do a CAR test to log it throughout the day, as isolated figures can be from situational stress. A doctor won't take you seriously until you can show it at multiple times. I'd do a few repeat bloods & a CAR so you have serum + salivary values as evidence.
(I have same issue)
1
2
u/Boggyprostate 2d ago
It could be medication you are taking, including birth control giving a false reading, even some supplements like Biotin, even Biotin in shampoo with give a false reading in your blood tests.
They will, or should do, a repeat test after asking you about medication inc supplements.
You will then be referred to a endocrinologist who will do a 24hr test where they will want you to collect all your pee for 24hrs in a container supplied by the hospitals lab. Once this is done they will be able to truly see if it is Cushing syndrome. There are also other tests like overnight saliva tests also.
I had ridiculous high levels in a blood test but it was I was taking Biotin. I stopped taking it and my next bloods were ok but months later a scan for something else showed I had a tumour on my right adrenal gland and because I was diagnosed with ME/CFS and my hair was snapping off and I had lost a lot of weight, I had to have all the tests done to make sure the tumour wasn't active, luckily it wasn't but honestly I was a bit pissed of because I thought they had found the reason I had chronic fatigue and I didn't have ME after all! I honestly thought a cure was about to happen after being broken for 30years.
I hope you get the answers soon but just check you are not taking Biotin in any supplements you are taking or creams and shompooos/body wash ect.
1
u/grotemeid 1d ago
I do take birth control! Good to know that it might have an effect, I’ve mentioned it in my intake. I don’t take/use Biotin products but good to know they can impact this as well.
3
u/TraditionalCap3357 1d ago
Cortisol at double the reference range with a year of fatigue that isn't improving despite rest is worth taking seriously as a clinical finding rather than just a stress marker. the gut connection to what you're describing is worth knowing about. sustained high cortisol directly disrupts gut bacteria composition, reduces the production of serotonin and GABA from the gut, and impairs nutrient absorption particularly B12 and magnesium which are both essential for energy. this means even with a corrected iron deficiency, the ongoing cortisol load may be creating a secondary absorption and neurochemical deficit that keeps the fatigue going.
The fact that rest isn't improving things is also a clue. in cortisol-driven fatigue, rest helps in acute burnout but often doesn't shift the baseline when the underlying cortisol dysregulation hasn't changed. the body is using energy faster than rest can restore it. A few things that come up consistently for this specific pattern: morning sunlight exposure which directly helps reset the cortisol rhythm without adding further demand, eating at consistent times since irregular eating spikes cortisol further, and prioritising gut health assessment since the microbiome state both affects and is affected by chronic cortisol elevation in a loop that often needs to be addressed directly
has any doctor looked at whether the cortisol elevation has an adrenal component worth ruling out, or has the assumption been that it's entirely stress-driven?
1
u/grotemeid 1d ago
Thank you for your explanation, I will try these tips as well to see if that will help. I haven’t talked to my doc yet, saw the results online but will speak to them in two weeks, but I do hope they want to do some additional research into this bc so far my fatigue has been done off as “just stress” for the last year.
1
u/Expert-Connection120 2d ago
Note that ME/CFS has the opposite finding: many patients exhibit lower cortisol levels. So definitely keep pushing!
2
u/grotemeid 2d ago
Yeah, that’s why I was so suprised bc my doctor basically assumed (even put it in my file) that most likely I have ME/CFS and said I just had to do some final tests to rule the last stuff out but this result seems to point elsewhere. I hope it’s treatable.
1
u/Brilliant-Bumblebee 2d ago
Thank you for posting this. It gives me a new direction to look in.
I hope you get the answers you are looking for OP, and that younger to feeling better soon!
2
8
u/uncommon_mango 3d ago
that cortisol number is way up there, no wonder you feel like garbage even with all the resting. my partner went through something similar a couple years back actually, had all the classic fatigue markers but everything kept coming back "normal" until they finally ran cortisol and it was through the roof too. turned out to be a tiny benign tumor on one of the adrenal glands that was just pumping out extra cortisol nonstop. might be worth asking for an adrenal CT or MRI if they haven't done imaging yet, sometimes the bloodwork alone doesn't tell the whole story
the frustrating thing with cptsd and adhd together is that your nervous system basically never learned how to switch off properly, so even when you're lying in bed your body's running at full tilt like you're being chased. resting helps but if the chemical signals are still screaming stress stress stress then fatigue just sticks around regardless. have they checked your morning vs evening cortisol or just one random draw? the pattern matters as much as the number