Low end of normal cortisol 102nmol/l

[Boymum2224]

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!

Anyone?

Nice guidelines suggest GP should refer to endocrinology at that level - perhaps ask for a referral quoting these?

https://www.nice.org.uk/guidance/ng243/chapter/Recommendations

Thanks for your reply. Yeah I asked for that and said about the nice guidelines today and he just said it wasn’t urgent.

I just feel so awful, tonight I feel sick and dizzy, low back pain and low tummy pain. I don’t know what to do really

You can either call 111 or go to a&e - it may be the start of adrenal crisis which needs urgent treatment. Hopefully not, but best to be safe.

Yeah I did think that. I am worried it’s that. But I’m not sure whether having the test done at just before 10am is accurate or whether it should be between 8-9am. I guess I just don’t want to waste anyone’s time.

How are you getting on @Boymum2224 ? Id say 102 is too low for that time of day have you managed to make any progress yet

You need an endocrinology appointment or at the very least a repeat test. Low cortisol can be caused by secondary causes (e.g. pituitary tumour) not just Addison's Disease. At those levels you may need steroids to sick dose or during times of stress, surgery etc to keep you safe. This is how it works for me with borderline low cortisol and 3 hospital admissions with suspected adrenal crisis in the past. The pituitary foundation have a good helpline for advice. I hope you feel better soon.

Hello! So I had another cortisol blood test this morning so I’m waiting for that to come back. I had to call everyday and practically beg him to see me and test me again! And I also quoted the NICE guidelines to him as well. The doctor thinks I have may have Obstructive Sleep Apnea, my Dad has it and it’s generic apparently. It’s also very common in people with underactive thyroid, and mine being autoimmune puts me at risk of developing other autoimmune diseases.. like Addisons. The doctor also said that inhaled steroids can cause adrenal insufficiency, and I have been asthmatic and on steroid inhalers since I was a child. So it all could be linked. The doctor did mention a referral to endocrinology so fingers crossed I’m getting somewhere! I’m absolutely wiped and exhausted.. it’s a struggle to work and being a mum of 2 very active little boys as well! As well as prep for Christmas which I stupidly said I would host at my house this year 😅

Thank you zerored. I had to beg for a repeat blood test today, but at least that’s done and it was done at 8:30am this morning so that’s good. Just waiting for the results now. I wondered if it had something to do with my pituitary gland/ tumour or something.. with my thyroid disease as well, maybe something else going on here

I also feel sick and dizzy, especially in the evenings. My stomach is hurting this evening, well all day really.

If you are on inhaled steroids the cortisol test is not accurate. You need to be off them for a couple of days. Are you still taking the inhalers?

Thank you, @sproutsandparsnips. Love the name! Hmm I do know that steroid inhalers can have an affect, if you take for a long time or if you stop them suddenly. I am still taking them, relatively small dose though. My GP didn’t tell me about stopping them though! 🙈 not really sure I can just stop them suddenly for a few days though, I think that’s dangerous for AI as well..

Hmm not sure then. I think from a steroid point of view it’s ok to stop a low dose but obviously that might affect your asthma.

Please come and talk to us on the UK Addisons and Adrenal insufficiency facebook group - if you search for us it will come up and we can advise you.

You are right to be concerned. As others have said the NICE guidelines are there for a reason and you should be referred to endocrinology.

If you have asthma you should not stop your inhalers as it is dangerous for your asthma and it will not be a true representation of your daily life anyway - if you need to use the inhalers then you need them so what is the point of seeing what your cortisol would be without them? A lot of endocrinologists do not understand this.

If you are taking anything with oestrogen (combined pill, any kind of HRT, even transdermal despite what endocrinologists say) you need to stop these for 6 weeks prior to any cortisol tests as it can falsely elevate the results.

(I have Addisons - and many other autoimmune issues).

This is the group -

I’ve also got Addisons and AFAIK it’s ok to just omit your inhaler on the morning of the test . I’m primary Addisons but also on steroid inhalers for a chest issue

Thank you everyone!

@Pepperedpickles thank you, I have requested to join the group. I will have a look and talk to people. Good point about my inhalers, you’re right about it not being a true representation of my daily life.

@tinyspiny thank you for the info, it’s good to know it would be okay to omit one.. I have already had my blood tests yesterday, still waiting for the results.

Feeling really really tired, dizzy and nauseous today.. I also feel like my body is shaking, I don’t know if that makes sense. I don’t work Thursdays to look after my children, so thank goodness I’m not working today! We’re having a cuddle on the sofa at the moment watching a movie.

Oh and I only take a progesterone only pill, so no Oestrogen or HRT or anything 👍

if you need to use the inhalers then you need them so what is the point of seeing what your cortisol would be without them? A lot of endocrinologists do not understand this.

The point of a synacthen test is to establish whether OP is suffering from adrenal insufficiency.

You’re missing the point. (I advise on an Addisons / adrenal insufficiency group so know what I’m talking about). If someone needs their inhalers for life, for their asthma to remain stable, then whatever ability they have to produce their own cortisol shown in a sst test needs to be reflective of that situation - ie there is no point putting someone dangerously at risk (of an asthma attack) by stopping their inhalers to prove they can produce cortisol without them if they need them to survive. The cortisol result without them is not reflective of the true life situation.

Also worth mentioning that the sst test can usually only diagnose primary adrenal insufficiency (ie Addisons) as the synthetic hormone stimulates the adrenals - in primary / Addisons the adrenals themselves do not work so someone will fail a sst. In secondary or tertiary the adrenals themselves can still work but they do not receive the signal to do so (ie acth) but in the sst test this makes the adrenals work so they will often pass the sst despite actually having secondary adrenal insufficiency- which is the type most people with long term steroid use (ie asthma inhalers / steroids) will have as the steroids used for the other condition will suppress that persons own cortisol response. We have so many people in this situation and endocrinologists tend to dismiss a lot of people who have SAI on the basis of passing a sst test when this should not be the case.