Cortisol

[MummySS22]

Hi everybody! I’m new here frantically searching for advice! So I hope someone can help me. I’ve been reading the version of Mumsnet in google where you can just read threads and I felt I needed to become part of this community!

bit of backstory- I’ve been feeling like utter crap ever since the birth of my son last June. Extreme tiredness, muscle aches, bone aches, diziness, heart palpitations and extreme anxiety amoungst others. I’ve been begging the doctors for months to help me and they just say it’s anxiety but I know it not! (I’ve suffered health anxiety for 11 years as well OCD) I feel like they know this so just fob me off. Anyways, I’ve managed to get some bloods done. All the usual ones are normal.
I had a morning blood test at the hospital this morning for cortisol which was 200. I haven’t spoke to the doctor only read the results on the online portal thingy, which say “ borderline, if symptoms are suggestive of adrenal insuffiency and then some other test is advises” can’t remember what is called.
sooo anyhow, me being a raging hypochondriac gets straight on google and it says Addisons. Adrenal crisis. Can be fatal. Now I’m going out of my mind to waiting to suddenly die.

can anyone help? Offer advice? Opinions? Should I be worried or will I live to see another day?

I await patiently and appreciatingly (is that a word?)

Hi I just wanted to say I hope you find answers soon but I wouldn't just go by one parameter in the test but look at all the symptoms and best to get answers from medical professionals.
I have some health anxiety too so I know how hard it is to stop worrying. But what I do is constantly follow up and ask all the questions including whatever info you have found. Most likely it's nothing. One of the reasons I was tired was low levels of vitamin D. Hope you have ruled that out. Good luck and hope you feel better soon

I have Addisons - and other autoimmune issues.

With a morning cortisol of 200 you should be referred to endocrinology for an sst test (google this) as per the NICE guidelines- here -

https://cks.nice.org.uk/topics/addisons-disease/diagnosis/investigations-suspected-adrenal-insufficiency/

I help and advise on the U.K. Addisons and adrenal insufficiency group on Facebook- come and join us, lots of information there -

<a class="break-all" href="https://m.facebook.com/groups/175948922471395/?ref=sharem.facebook.com/groups/175948922471395/?ref=share&exp=9594" rel="nofollow" target="_blank">https://m.facebook.com/groups/175948922471395/?ref=sharem.facebook.com/groups/175948922471395/?ref=share&exp=9594

Addisons is also just one form of adrenal insufficiency- this link explains more -

https://www.addisonsdisease.org.uk/what-is-addisons-disease

The hanks for your reply. I’ve been to see the doctor and they aren’t concerned. They said because the test was done at 9:15am with an actual level of 213, it’s classed as borderline and a repeat test is needed. I feel like im not being heard at all and I’m fobbed off yet again.

@Pigeonqueen ive been instructed to go up to the hospital before 9am tomorrow morning and have a repeat blood test

@MuffinCoffee he’s I’ve had all vit D, b12 and iron. FBC all the obvious ones and all within normal limits

It’s good they’re repeating the blood test. If it comes back as needing a referral (see the thresholds in the NICE link above) don’t be fobbed off. It’s so rare GPs etc don’t usually have any experience of it at all so you will have to be pushy. I was misdiagnosed for 2 years before being diagnosed with a cortisol level of zero. It’s amazing I didn’t die to be honest and I’ve made several formal complaints about it.

I had this recently too. Actually really similar because my test was done slightly late in the morning too so although I was referred to the next stage test, they weren’t particularly worried.

The second test was a bit more complicated, they took blood for baseline cortisol levels. Then they injected a hormone that should make my body produce cortisol. Then they took bloods again after 30 and 60mins.

In my case the second stage test came back normal.

Interestingly I’m abroad and they are treating me for “insufficient” vitamin D because apparently it can cause a lot of the symptoms you mentioned in your post (which I share) even though it’s not low enough to be actually deficient.

@Pigeonqueen i don’t really understand it all to be honest. If it’s bordering does that mean it could get lower if I am not treated eventually leading to an adrenal crisis? Is this jay happened in your case? Are you born with it or is it something that can be developed gradually? As I say, I’ve been experiencing vague non specific symptoms since my son was born and he’s 18 months old now. They say it’s anxiety and the doctor said to me if anything I should have higher cortisol because of my anxiety disorders Etc so say for argument sake the test comes back lower or borderline again I should definitely push for referral even though I don’t have ALL the symptoms? I hope this makes sense. I think I’m just waffling because I’m worried.

There isn’t a straight answer unfortunately. Some people gradually produce less and less cortisol for various reasons and will eventually end up having an adrenal crisis if untreated (many people come to the Addisons Facebook group having been diagnosed in this way - they literally have a crisis and end up being diagnosed in hospital). Others, like me, manage to catch it before it gets to that stage. Some will poodle along with very low levels of cortisol but are still capable of producing some so they may never go into crisis but would still benefit from a proper diagnosis as potentially they could have a crisis - especially in an emergency situation (car crash, acute medical emergency etc where lots of cortisol is suddenly required - those who are diagnosed would use an emergency injection of hydrocortisone in these circumstances).

Fortunately Addisons / adrenal insufficiency is one of those things that (like type one diabetes) is diagnosed through tests and not symptoms - although obviously symptoms provoke initial testing. So it’s a very simple case of if you have a low cortisol level the NHS should follow the guidelines and it’s important you receive a proper diagnosis as you will need steroids, an emergency injection and to carry a steroid card and wear a medical alert bracelet. If your second test comes back low you need to push for the sst test.

https://www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/short-synacthen-test-sst/

@Pigeonqueen thank you so much, it’s so wel explained. With a level of 213 like mine was yesterday would it be likely I would have an adrenal crisis? I’ve been worrying my little head off.

213 is low but not super low. No one can predict how your body would react in a crisis type situation however - in an emergency or illness situation someone without adrenal issues would immediately start to produce huge amounts of cortisol to allow the body to cope with the stress. If your base level is 213 that might be fine for day to day stuff but if you can’t mount a good cortisol response to a stress situation then you might be in danger of a crisis. No one can really tell you - that’s why they do an sst test, it’s a synthetic way of seeing if you can suddenly produce cortisol. (There are no side effects to this, I’ve had 3).

This link explains the triggers for adrenal crisis - in the process of diagnosis it’s important to be aware of them and if you suddenly have signs of a crisis you should get to A and E and say you’re being investigated for adrenal insufficiency-

https://www.addisonsdisease.org.uk/newly-diagnosed-sick-day-rules

@Pigeonqueen thank you so much. I really appreciate it. I’ve got myself all worked up and scared. That’s Heath anxiety for you 😩

You’re welcome. I do understand, I have terrible health anxiety too - in fact I was misdiagnosed as having panic disorder before I went on to be diagnosed with Addisons! Yes I was in a panic but I felt (justifiably!) seriously unwell. If you have these things going on it does make you feel anxious and that’s normal.

What I will say from my experience though is that generally you’ll have a bit of warning if you’re suddenly going into crisis - it’s not something that happens in seconds. You’d have time to ring 999 if you needed to unless it was some kind of extreme event like you were suddenly unconscious which would be a serious issue for anyone; adrenal issues or not.

@Pigeonqueen thank you. This is my worry! My health anxiety is telling me that it will be very sudden and I’ll just collapse and die!! But even before this business I had that fear over a headache 🙄

@Pigeonqueen my cortisol test was repeated at 8:15 this morning with a result of 420 and they’ve still classed it as borderline. They’ve just sent me text to say I’ve been referred to the Endo team. Do you know what this might mean? Xx

Hi OP, I clicked on your post because I am worried about my adult daughter. She also had her cortisol level tested the other day. However, she has the opposite problem. Cortisol too high. I believe the endocrinologist is looking for Cushing’s syndrome.

My daughter is very low in vitamin D. Takes double daily recommended dose. Low iron, low B12. Has had huge weight gain with no explanation, extreme fatigue, stretch marks. The list goes on.

@fortifiedwithtea i wish I could offer more advice but I don’t know too much about it which is why I came here to ask. Mine is borderline low so I’ve been referred. I don’t have ALL the symptoms though. Only some. I’m not sure how cushings is treated but I have read up on it and apparently it can be caused by high use of steroids. Has she ever taken any for any other conditions? I might be wrong though.

@MummySS22 she’s never taken steroids. So if it comes back as cushings it might mean she has a tumour on the adrenal glands or pituitary.

She doesn’t have every symptom. She doesn’t have upper arm weakness nor the hump on the back of the neck. So fingers crossed it’s something else.

@fortifiedwithtea i do know that some people just make more or less cortisol then others so it could literally be that’s what normal for her.
I don’t have all the symptoms. I’ve not lost a huge amount of weight for one. If any I’ve put it on, my main symptoms are extreme tiredness, low mood, aches and pains, extreme diziness all the time. But all my other bloods were “satisfactory”. I suppose we will wait to see what we get from the endo!

That’s quite a good result really, most people wouldn’t be referred on at that level BUT the fact your previous level was 200ish it’s good they’re referring you to investigate properly. They will probably want to do an sst test - I think I posted the link somewhere above. They will basically test whether you can produce cortisol when prompted.

@Pigeonqueen thanks so much. So do you think it’s unlikely I have it? They said they will contact me with an appointment.

I really wouldn’t want to say. Hopefully you get an appointment soon. Come and join the Facebook group and you’ll read lots of stories from people in similar situations.

Thank you so much. I really appreciate your help and advice x