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Autoimmune disease

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Original poster

Low end of normal cortisol 102nmol/l

30 replies

Boymum2224 · 10/12/2025 14:23

Hello,

Looking for advice as my GP doesn’t seem concerned.

I had a random episode where I had symptoms of a stroke, sent to A+E where they did an ECG which didn’t show anything. They sent me home and sent me to urgent care the next day, bloods were normal. Which is good.

Since then I have been having symptoms like headaches, dizziness, nausea, fatigue and just feel so weak.

My GP did a morning cortisol test, which I could only get at 9:50am and it was taken just before 10am. I don’t know whether that’s too late as I thought it needed to be at 9am. The result was 102nmol/l.. the range was 102-535nmol/l.

I tried to speak to the GP today, but i was told that it wasn’t urgent, it’s a low risk for Addisons disease as my sodium was normal, so I could wait until my next appointment which I already had booked for Tuesday as he wanted to speak to me about my diet.

I guess I’m just asking is that level concerning or is it fine? Should I be retested or referred to endocrinology? I already have autoimmune hypothyroidism which I am medicated for, and I think I read they could be linked. The GP doesn’t seem concerned but I feel awful today, bad back pain, stomach pain and hot, clammy and dizzy.

Thanks in advance!

OP posts:

aliasfrog · 06/08/2026 16:13

Op i have ME and I have the same symptoms of you. What worked for me was prioritising my sleep over everything else, drinking 3l of water a day, and seriously upping my salt intake. Pace your activities and make time for rest before you get tired (and rest means NO looking at your phone, literally just lying in a dark room with no stimulation). Eat a balanced diet with carbs for energy and eat little and often. Try low fodmap for your ibs.
Good luck

Original poster

Boymum2224 · 06/08/2026 19:43

Pepperedpickles · 06/08/2026 16:07

What was the actual result of the second cortisol test? If it was under 300 you should still be referred to endocrinology. If it was borderline 300ish and you’ve had the previous low result they should still potentially be doing a sst test (google this). However, something you need to be aware of is that you can have secondary adrenal insufficiency (where the adrenal glands themselves are capable of producing cortisol but the pituitary gland isn’t sending the correct signal to do so) and still pass a sst because during the sst you’re effectively given a synthetic version of the pituitary hormone so you can end up with a pass but it doesn’t show whether the body can produce enough of this hormone on its own. Ideally you need an ACTH sample taken alongside the first blood draw to determine whether the body is producing enough of this hormone on its own - if the Acth Is low this can indicate secondary. In primary / Addisons the adrenals themselves do not function, so the acth result is typically very high as the body pumps out tons of it but the adrenals themselves cannot work. Those with primary / Addisons are more likely to fail a sst than someone with secondary. It’s a crucial difference that many endocrinologists do not understand and if you’ve been told everything is fine when it’s clearly not it’s something you need to be aware of. We have many people in the support group I’m in in a similar situation.

Your initial low cortisol result is extremely low; not just borderline. And really indicates an adrenal issue. Until a couple of years ago (when they changed the NICE diagnostic guidelines) anything under 100 would have been an instant diagnosis. Now it’s just to refer to endocrinology.

Edited

Show quote history

Thank you for your reply! Really good information. But my second cortisol was 383.. not sure where that leaves me?

OP posts:

Original poster

Boymum2224 · 06/08/2026 19:45

aliasfrog · 06/08/2026 16:13

I’m sorry you have ME and have all these horrible symptoms! Thank you for the information! It makes me feel really quite low and fed up with myself tbh. I am rubbish at not looking at my phone in bed so need to get better with that. I also try and drink lots of water but I didn’t know about the salt intake! Thanks

OP posts:

Pepperedpickles · 06/08/2026 22:09

Boymum2224 · 06/08/2026 19:43

Thank you for your reply! Really good information. But my second cortisol was 383.. not sure where that leaves me?

Show quote history

That is tricky but I’d consider that the previous cut off used to be 450 before the revised guidelines so that’s still a bit low and close to the current 300 needed for investigation and referral to endocrinology. I think personally I’d be pushing for one more go at a morning cortisol and if that comes back low again they really should refer you. To be honest the guidelines state they should have referred you to endocrinology on the first, very low, cortisol result. Not repeated the test.

CleanSkin · 13/08/2026 16:23

I second @pepperedpicklesin that you should be referred to Endocrinology.
Primary Adrenal Insufficiency (Addisons disease, or PAI) and Secondary Adrenal Insufficiency (SAI) are both extremely serious conditions and, though similar in effect, have different causes & thus require different clinical tests.
Morning cortisol tests are unfortunately notoriously variable & thus further testing is required if there is a suspicion of either type of AI.
It’s the Endo’s job to establish if a patient has PAI or SAI and then to prescribe critical steroids & potentially life-saving emergency injection kits.
Please push your GP.

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