Low cortisol result. Advice other than Dr google ? Anyone shed some light please ?

[mum2boys1504]

Hi everyone , for the last year or so I've have gained 3 stone , fatigued , stressed , hormonal , mood swings , and now insomnia and fatigue in afternoons , low energy and anxiety , the list goes on. I had a blood test tuesday and the doctor said to book a "routine telephone call due to low level of cortisol " apparently the normal range is between 185 and 624 but mine was 136..so I am waiting for a phone call but I suffer with anxiety and googled it..what I dont understand is
Why are they saying its not an emergency when I've read this could be Addison disease could cause adrenal crisis ?
Why have I gained weight when what I've read online is LOW cortisol causes weight loss ?
Does anyone have any experience as to what could possibly be wrong.. do I need to worry about adrenal crisis !? Should I contact the doctor again yo make sure they understand that my symptoms have gotten worse over the year ? Did anyone have this "low cortisol levels " and if so what was the outcome.. Will I ever lose this weight and what was the treatment ? Really appreciate anyone putting my mind at ease or just being honest as my anxiety is through the roof now ? Thank u to anyone who's taken the time 2 help x

I've had that come up on a test. My specialist then ordered a salivary cortisol and then an acth serum test. Both came back fine.

Low cortisol levels don't always signal a problem.

What time was the blood test as that is crucial in interpreting cortisol results . FWIW pre my diagnosis with Addisons I was vomiting , fainting and lost about 4 stone in 5 months . Hope you get to the bottom of it soon @mum2boys1504

It was 9 am and it was 136..the Dr said they weren't too concerned but the thing is I've GAINED 3 stone in a year (main reason for in depth blood test ) and I have very painful sacral joint pain for the year thats made me stiff and also now extreme fatigue , mood swings , tired , insomnia, short temper and stress , hormonal the list goes on ..I'm so sorry for your diagnosis , I have had nausea , allergy to eggs ( never been a problem before ) I just feel so lost and don't know what's wrong with me does any of this ring a bell? Thank you

Let's hope so . Thankyou

That’s low for 9am , are you on anything with oestrogen as apparently that can affect cortisol levels . I’d ask for it to be repeated , I thought if you had a 9am lower than 180 it warranted referral . Aside from the nausea I didn’t have any of those symptoms , I wasn’t so much fatigued as unable to stand up without going dizzy / fainting . For me it was a good diagnosis , my mum had Addisons from when I was 6 months old so I’m very au fait with it . I was diagnosed at 50 .

They seem to think it's not that bad..I have so much pain aswell , it may well not be anything g serious but I'm falling apart. I'm only 35 ! I am trying to eat more healthy foods and drink more water etc ..I just feel like you have 2 chase doctors and go round in circles trying to figure out what's wrong. I just need my energy back x thank you for replies

He is referring me to a endocrinology (hormome specialist) just no idea how long this will all take ..I guess just don't like not knowing with me ..I'm getting more and more stressed ans tired 😫

Mine was 132 on the initial test. The ACTH stimulation test results off of the back of that were completely normal. It makes sense as my serum potassium and sodium were also normal, my endocrinologist only ordered the ACTH out of an abundance of caution.

It's clear there's something going on which needs understanding but your cortisol levels being low probably aren't cause for alarm.

Hello OP,

I've just seen your post and thought I'd chip in. I am a bit of an expert on Addison's and adrenal insufficiency as we have both in the family. I'm not sure if you know but Addisons is Primary adrenal insufficiency caused (usually but not always) by autoimmunity and secondary adrenal insufficiency is generally caused by long-term steroid use.

You don't sound like you have Addisons as usually this involves weight loss and often changes in skin colour and salt craving. Ironically you can look like you have a healthy glowing tan but actually be very seriously ill.

Have you got a history of steroid use such as asthma inhalers, steroids to treat lung conditions or any other sort of inflammation? Long-term steroid use (even something as common place as asthma inhalers) can suppress the bodies ability to naturally make cortisol and you then end up with secondary adrenal insufficiency and some of the symptoms of Addisons - like low cortisol, exhaustion and joint pain (a common symptom of low cortisol)

The main difference is that with secondary adrenal insufficiency you don't lose salt as you do in Addison's and if you're very lucky it can be reversed, but not always unfortunately.

I hope this helps @mum2boys1504 x

No noton any steroid or any other medication..I just feel like I've some sort of messed up hormaonal inbalance , I appreciate your time to reply and thank you for your Information. I just have so much fatigue and mood swings and hormonal , stress I just can get to the bottom of it
Xx

Okay, well that's one thing to tick off the list.

You definitely have low cortisol so please don't let any dr's fob you off as I'm sure you're aware the endocrine system is so very complex and everything affects everything else eg cortisol levels can affect insulin levels and vice versa. Everything works in tandem, so if I hormone like cortisol is out others will be as well - eg thyroid, oestrogen, insulin

I hope you get some answers.

As an aside I would give definitely artificial sweeteners a big miss. The jury is still out but there is research going back decades saying artificial sweeteners are endocrine disruptors.

@mum2boys1504 did you get any answers? I've paid for a medichecks 9am cortisol blood test and it just came back low at 126. Earliest gp appointment is next week (wide range of symptoms)