Just got my 9am cortisol result... 245... I had the the short syncathen test on tuesday
The endo told me it should be more like 400-500 at 9am
The nurse has just told me the range is 145-400 So it's within range???
The endo said he would only order this test if my 9am cortisol was "abnormal"
A bit confused... I'm seeing him on the 11th
I think the Endo knows more than the nurse!
Me too but it's pretty confusing.... I'm also in the midst of being treated for asthma I don't have
Your cortisol level would have been measured at the 9am baseline and then 30/60 minutes after the injection of the synthetic ACTH. If the baseline result was above or below that particular reference interval, the ACTH injection would not have been given; so if it was, presumably your baseline level was within range. Then it would have been measured 30 mins and sometimes 60 mins after the ACTH. That too would have been measured in order to see how much the level had risen, and compared with the reference range for that result. So are you sure the nurse and Endo were commenting on the same result and reference interval?
Yes I asked the nurse for the result of a 9am cortisol test while I was there have the syncathen test
As Maisie says you should have had two results. 9am cortisol ranges do vary ( I've moved counties) but can be as much as 170-700. Short synacthen is about measuring if your adrenals respond to stress. I had done in Oxford and their benchmark was 430.... or cortisol needed to rise to above that for them to deem my adrenals to be working enough for me to come off hydrocortisone therapy.
I'm not on a hydrocortisone replacement therapy this came about because of issues stopping/starting a steroid Inhaler for asthma I've more recently been told I don't have... I had to have an asthma review in January for asthma I don't have but they habe told me to stop nothing until we've had more tests and results
Test still a relevant check to see if adrenals respond appropriately.
Yes well I've had the synacthen test just waiting for results now... it's been a long waiting game with what started out as asthma 4 year ago to be told December last year at the difficult asthma clinic it's most definitely not asthma
To being referred to the endo who said I don't think it is AI and he said he would book an appointment in 4 months end of January I'm seeing him 11th April (I make that 3 months) he also said he wouldn't see me if there was nothing to report (I wouldn't have an appointment for him to tell me he hasnt found anything)
I had a 9am cortisol recently of 150. The normal level they say is 155-650 before they consider doing a synacthen test. My synacthen was normal. My sister had a 9am of 100. Her synacthen was normal too. I do know that they are testing the adrenals to ensure they respond to the ACTH instruction. So our adrenals are ok. The problem is what is the problem then. This could be secondary adrenal insufficiency. However, my Drs haven’t investigated this yet. My cortisol has been as low as 68 with ACTH of 0.5 (range 2-11) and still nothing has been done but this was mid afternoon. I have my cortisol checked quite regularly now under my request. The past few weeks at 9am has been 150, 176 and 180. They say this is normal!! I beggar to disagree. All I can hope for is that my body will improve itself and this would be better in the long run than being on Hydrocortisone steroids for life. As once you start that’s it as your adrenals will go to sleep and all the issues Hydrocortisone brings , It might take a long time for them to wake up again if you reduce.
I have had severe thyroid medication issues the past year. Recently found out I’m a very poor converter of T4 to T3. My T3 prescription is due any day. I’m hoping this’ll fix my problems. It would be brilliant if the missing T3 has been the problem and my cortisol will rise naturally again. I just don’t know but live in hope.
If I had a 9am of 245 I would be very happy. Do you have low cortisol symptoms? Have you checked all your vitamins B12,D, ferritin and folate these are mega important to be optimal. Did they check your T3 T4 and TSH at the same time
Hope this helps reassure you with cortisol levels.
Pam
Yes I'm noton a replacement therapy this has come a out because I kept feeling faint and passing out and went to see a respiratory consultant for breathing issues she prescribed a steroid Inhaler and all issues went away... for some time my breath has slowly gotten more troublesome and my gp kept throwing add-on therapies but when I had trouble doctors where telling me my chest is clear so it's not asthma... I was re-reffered to respiratory consultant who ran lots of tests including a mannitol test I had to stop all medications for a number of days, steroid inhaler was 24-36 hours before test feeling faint came back again pretty quickly... I mentioned this to respiratory who suspected adrenal insufficiency and passed me to the endocrinologist.... more testing And all I know for definate is:
I don't have asthma (which is what I was sent to the respiratory team with)
I don't have COPD
Starting / stopping steroid inhaler makes issue re-occure/go away (but according to the endo is so low a dose it shouldn't suppress adrenals like oral steroids)
My 9am cortisol was 245 and endo said it should be 400-500
He ordered synacthen test which he said he would only do if my 9am cortisol was abnormal (haven't had the results of that yet)
3 years ago when all this started I had lots of heart tests done... So I don't suspect the issue is with my heart
I believe that when in Hydrocortisone the levels should be 400/500. But naturally I doubt this ever happens. That’s why the range is 155-600. Ask your Endocrinologist if he meant 400/500 whilst on steroids. I think your nurse was right not the Endocrinologist. I also believe that we only need high cortisol when required. It’s our stress hormone. So it’ll only be high if we are under stress - flight or fight syndrome or if we are ill and our body is fighting infections etc. That’s when people with Addison’s dose up. It could be related to your inhaler as it’s a steroid maybe get cortisol tested while on inhaler ask your GP for s blood form and go to your local hospital for 9am while on inhaler
I’d ask your Endocrinologist about the level again. Call his secretary or send an email to confirm I definitely would. As he’s getting you concerned as anyone would be in your position.
Pam
You are right Pammy....it is low and strange they are saying it is normal. But you are also right that once on HC adrenals go to sleep and it will be tough to come off. I ended up on HC after neurosurgery to remove a pituitary tumour. Took 3 years and then was able to come off HC slowly....so think you are doing the right thing trying to get them working better before going down meds rout. I think I now have thyroid issues which I need to get some help with.
Yes I’m trying to avoid Hydrocortisone. I did have a couple of weeks on it last year. Weirdly it acted like a tranquiliser I just fell asleep! Although my cortisol levels did increase. So I stopped them after advise from Endocrinologist.
Oh no I’m sorry about your thyroid. I’ve had a nightmare the past year. Unable to walk. I’ve now found out privately that I’m not converting T4 to T3 very well.
My tsh normal so gp sent me away. Private doc thinks t3&4 v low as right on the border of low range. I've been having sleep issues, anxiety, depression.... unsure how much is in my mind and how much is thyroid related. I had insomnia with the pituitary tumour for years pre diagnosis so it's like I'm in the trauma loop again. Can't seem to switch the fight/flight off. X
Can your TSH still be checked with having the pituitary issues Also have you vitamins all been checked they all need to be optimal for things to work optimal also. All mine except D were too low. Now corrected.
I’m still in a mess mind you! T3 has to be my answer. Maybe it’s your too. T3 being the only active hormone. Can your pituitary be MRId again. Could another tumour grow. I’d defo chase T4 and T3 increaey/ introduction to see if that helps. I’m no expert for sure but some things are just logical.
Hope you’re not too bad today. 👍. Keep positive!!
see below.... thanks. Trying to stay positive. Just so confused about how to tackle it as don't know if thyroid or in my head!
Hi. I read all the posts. Oh my you lovely ladies have and are going through it to say the least! So for me I should try my utmost to steer clear of Hydrocortisone if I can. Tbh I don’t won’t it with all it’s side effects. I just worry like yourself and want to make sure I’m doing ok with things we can’t see only feel. Although my legs buckling constantly is for all to see and my weight increasing. These are things people point out. It’s inside that feel so much worse.
I’m sure you know all about it. How annoying that you were ok for a couple of years and now not. I’d see what private Dr suggests. T4 and T3 can only help if your levels are low. Are your arteries ok and cholesterol. I think mine have narrowed due to lack of T3 over the years. My hr has been in low 50’s since on Levothyroxine. And the past year it’s been impossible to exercise or walk any distance. I can’t even walk around a supermarket anymore. I had a full time job and love it before last year. It’s ruined my bloody life. I am determined to get it back. You stay positive think of the good years you had recently and keep focused on that. Try T3 and T4. Keep it slow and low at first. Just say 5mcg for first month twice a day. Don’t increase until you’ve had a blood test. I request blood forms for thyroid and Cortisol from my GP. I keep a couple of forms at home. In case I’m feeling really bad and just get taken to blood clinic instead of bothering with A&E. I get my bloods back the following day. This way I can either feel assured I’m ok or if not I can make a call or email my private Endocrinologist in Oxford to see what he has to say. I’m going to request a couple more blood forms just before I start my much awaited T3 just in case.
It’s lovely and sunny out there and next week the clocks spring forward. Let’s look forward in hope and think we will get better 👍 xx
HI I had a pituitary tumour which caused Cushing's disease so I am now on Hydrocortisone as my pituitary didn't wake up. It's not worth testing TSH & should be T3 & T4, my Endo like my T4 to be in the upper teens for it to be at an optimal dose, which for me is 150mcgs of Levothyroxine
Hi Pauline...is that Pauline Swindells? Jo Riley here from Cushings FB group. I had cushings too but pituitary did wake up and I even managed to come off HC and felt really well. Then this started in Sept. They've checked there isn't another tumour. I have moved from Glos to Cornwall since Cushing's and was told that my thyroid had been checked and was ok. I asked for a print out of the results recently and it made me realise they only test TSH in Cornwall. So I got a battery of tests done privately. TSH = 1.0. T4 = 13 (12-22); T3 = 3.1 (3.2-6.8). My Gp sent me away and didn't even seem to know what I meant when I suggested the problem could be my pituitary not working great. Ive sent results to my endocrinologist who is in Oxford. She emailed back and said "your T3 and t4 are fine". Vitamin D, folate, ferritin and B12 all show low - not quite deficient - but I didn't know I had to stop supplements before the tests ...so I am guessing these are showing higher than they actually are. Anyway...contacted private GP and he def thinks T3&t4 too low and won't be helping how I am feeling. Awaiting his reccomendations. Any advice from ex-Cushie appreciated! Jo xx
Hi Jo! Yes it's me! I think many places are not testing T4 & T4, it has to be done as a special request these days. My Endo (Southampton) would say that your T4 is low, she likes mine to be nearer the top end of the range. I'm glad you managed to get off HC, we're assuming my adrenal glands have given up now as I'm 3 1/2 years post op, my last cortisol reading was only 11!
Did you try reducing your HC at any point to see if the adrenals would kick in. That is what I had to do. I went to 15mg from 17.5mg and nearly gave up as felt pants but was urged to continue...went to 12.5mg and BAM they kicked in and it was like I had Cushings again ...... no sleep! Thankfully I had a short synacthen test booked and it showed they were working and I came straight off it then. Took 6 months to feel normal but then felt really good for 2 years. Now this! I don't think Id appreciated the link to my thyroid which tbh I think has been to an extent under active for years. Hope you are doing ok?
I tried but never quite managed to drop down, I'm also ancient so that probably had an impact as well! I'm sort of doing okay but have other health issues as well which don't help! I started on Levothyroxine just a couple of months after my surgery & have slowly had to increase the dose 
sending hugs. endo stuff is not much fun. I thought id put it all behind me. I'm gutted cos I feel I have caused this episode...by doing more than my body could cope with. I felt so flipping well. love jo xx
Hi there - I have AI diagnosed - and have terrible issues with adrenals - have had to reduce HC from 200 mg after Sepsis - took me nearly two years - now down to 15 mg of Medrone - but suffering if I try to go lower - having also been diagnosed with low DHEA and Pregnenalone steal - I have started on a 10mg DHEA and 10mg Pregnenalone - which supplies cortisol and many other adrenal hormones - it seems to be working and feeling more energetic. I don't think the medical profession know much about these two two hormones - as my endo had to look up google to find out what Preg was - but he agreed in writing to my GP he was happy for me to continue with it. If you are on HRT - be warned you must not take DHEA or Preg when on oestrogen etc. as they both make oestrogen and you will start to feel over medicated.
Hi,
Cortisol tests can be a ‘hot potatoe’ from my experience.
Timing, time, accurate testing etc etc are so important and often not adhered to.
I do hope you get sorted x
Thanks
The confusion arises because technically both your endo and the nurse are correct.
However it is your endo who is (understandably) more knowledgeable and understands how to interpret your results correctly.
The 24 hour range of cortisol is 145-400, which means that if your nurse is looking at a value of 245 she is technically correct in reading the reference value and interpreting it as in range and therefore normal.
The complication arises because cortisol levels vary throughout the day and you need to know what the correct range is, relevant to the time of day that you are being tested.
Cortisol is at its highest first thing in the morning, as it is the natural rise in cortisol that causes us to wake up in the morning.
As cortisol is at its highest first thing in the morning, it should be at the top end of the range at that time of day; hence your endo saying the result should be 400-500.
A result of 245 mid afternoon would be perfectly acceptable as cortisol is naturally much lower at this time of day. However a result of 245 first thing in the morning is cause for concern and certainly further testing.
Your endo has correctly interpreted your 9am of 245 at being low (abnormal) and has therefore referred you for the short synacthen test, which will test the ability of your adrenal glands to respond when prompted.
I am diagnosed Addisons and my 8am cortisol was 210, although admittedly I have been lucky to be diagnosed early on in the disease.
That's great thank you.. this all started with difficult to control asthma... that isn't asthma and a referral to endocrinologist
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