Cortisol symptoms

[Natz36]

Hi

I have one adrenal gland due to Cushing syndrome years ago , the other was removed due to a tumour.

I took the correct medication and the was weaned off as I was able to cope with one ( perfectly healthy etc )

So I’m just wondering, what does it feel like if your cortisol is low any symptoms?

My doctor said I can have a test at 9am whenever I’m ready ( to take blood for levels)

I was told a while ago off the endocrinologist I’m not showing any signs at all and I’m okay .

I just worry that my cortisol is low so has anyone experienced this please thanks ,?

[Jazzw]

Hi Natz36

I don’t have any personal experience but my other half had a kidney removed (including the adrenal gland) in her early twenties and this is something we were always on the look out for.

Symptoms of adrenal insufficiency can be similar to so many other conditions, so sometimes doctors don’t think to test the right things. It’s the usual sort of thing to start with:

Feeling tired/exhausted, lack of energy

loss of appetite and unintentional weight loss

dizziness on standing

low blood pressure

But then slightly more unusual symptoms:

craving salty foods

feeling and being sick

muscle weakness with cramps

abdominal pain

low mood or irritability

a frequent need to pee

increased thirst

difficulty concentrating

headaches

A one-off cortisol test isn’t always that helpful for picking up that there’s a problem brewing. Are you only having a cortisol test or is he also testing ACTH, aldosterone , potassium and sodium?

[Natz36 in reply to Jazzw]

Sorry to hear that . I had mine removed as I had Cushing syndrome hence the tumour on my adrenal gland, I don’t take medication anymore as they say my other copes fine without it now . I’m wondering if it’s low blood pressure making me feel so strange ,? Seems worse before my periods. I just feelLike I’m always complaining to the doctors but because I only have the one adrenal gland it’s a constant worry that my other my not work and it worries me. X

[Barrister]

I had severe nausea, loss of weight (3 stone over 3 months) constant headache, upper abdominal pain, dizziness when standing up and breathlessness walking upstairs, no energy (one day I was in the shower and lifted up my arms to wash my hair and couldn’t keep my arms raised because they were too heavy), dreadful salt cravings and a general feeling that I was going to die before anyone discovered what was wrong with me.

[Natz36 in reply to Barrister]

Thanks for that . Maybe it’s nothing to do with my cortisol levels and a possible low pressure problem. Soon as I wake up , I have a banana do some form of exercise then I feel so dizzy ( sometimes) I then can feel confused, not severely, even after eating it doesn’t stop ? The ENT said it’s vestibular issues as I had labrynthitis years ago then was having vertigo problems. So was all this because your cortisol was low or high ? Hope you’re okay now ?

[Barrister in reply to Natz36]

My cortisol was non existent when it was finally tested. I had an adrenal crisis after having a Gastroscopy and was then diagnosed with Adrenal Insufficiency.

[Natz36 in reply to Barrister]

Gosh that’s shocking! I’m so sorry how did they not miss that ? I think then mine is low blood pressure but I can’t understand why ? Every time I go doctors they say it’s fine. . Crazy what cortisol can do too you , when I had Cushing syndrome I put weight on especially around my middle, hair loss , sliver purple coloured like stretch marks , bruised easily, had a breakdown, kept wetting myself because my body felt as if it was shutting down , my stomach started swelling, took a while till I was told I had Cushing syndrome was a horrible time . X

[Hidden in reply to Natz36]

I've had Cushing's disease caused by a pituitary tumour, I'm now steroid dependent as my pituitary didn't produce ACTH to stimulate the adrenal glands to produce cortisol. For me low cortisol means I feel nauseous, light headed, my BP drops, I don't feel like eating, I don't "feel right". An early morning cortisol should point to whether your cortisol levels are okay. A short synacthen test will show if your adrenal glands are responding to the artificial ACTH. Have you taken your BP both sitting & standing? Maybe you have POTS? This chart shows the difference between low cortisol & adrenal crisis symptoms.

symptoms of low cortisol.

[Natz36 in reply to Hidden]

Hi thanks for that . I never feel sick , no appetite loss at all , I just feel off balance sometimes head pressure and a bit confused? It’s a strange feeling and ENT thinks it’s vestibular issues as my adrenal gland is functioning without medication as it was 17 years ago now . Just seems weird how I’ve not felt right since my periods came back a few years ago so I’m wondering if it’s affecting my cortisol levels. I think if my cortisol is low the doctor will contact the endocrinologist as they still have my medical file etc. X

[Barrister in reply to Natz36]

Balancing hormones is such a fine balance, isn’t it? I’m glad that you are doing ok.

[Natz36 in reply to Barrister]

I know it scares me as I don’t know if it is or it’s cortisol levels 😭😭. I think I just need to get the cortisol test done then take it from there x

[Hidden]

17 years is a long time ago, so I would imagine that your levels are okay but it's a good idea to get the levels checked out. Cushing's is such a horrible condition to have.

[Natz36 in reply to Hidden]

Yeah my daughter was one it was so traumatic I’ve got kyphosis now unfortunately as I had osteoporosis all at the age of 21 the professor said it’s not all the time they say young people with it. X