Feeling terrible and pretty sure its adrenal problems as Im on 5mg Pred about to reduce. I have a 9am cortisol test on Monday but just wondered what happens if my suspicions are correct and what result shows insufficiency please? A few months ago when I was on 4.5 I had the same test which came back at 148 & my GP marked it as "normal no further action". So will they still allow me to reduce, will I have to increase, or will they give me yet something else. Its a case of confused.com Thanks everyone.
9am Cortisol Test & what happens if adrenal insuf... - PMRGCAuk
9am Cortisol Test & what happens if adrenal insufficiency is confirmed please
Written by
HappyDiamonds
To view profiles and participate in discussions please or .
32 Replies
•
I am surprised you have been offered a cortisol test at such a high pred dose. They normally wait until 3mg or lower. The trouble is at that level you are still getting a lot of support from the steroids so it could look like you are insufficient, but in fact the steroids are giving you the lift up. Although you were in the normal range at 148. Why are you having another test?
The first one was some months ago, since then I have had a flare and Im tapering back down, at the time of the flare I was on 4.5. I tapered to 5mg 4 weeks ago, then 2 weeks ago I became so fatigued I could hardly function and Im very low, last time I felt this poorly I had pneumonia. Covid tests even this morning are negative. Blood taken all normal. The only other thing I suspected was I was put on Indamide 2 weeks ago to lower my blood pressure to be able to start Leflonomide. I should have started it last week but didn't feel well enough to start something else. So I phoned my GP surgery and asked if Indapamide could be causing me to feel so tired etc and they said it was not a known side effect. So I asked for a 9am cortisol test but have no idea what can be done if it comes back low.
The adrenals waking up can really hit you for six. I was zombie like and had trouble actually doing anything.
I couldn't have described it better, fell asleep for an hour and a half still in the middle of eating my breakfast yesterday morning and didn't have the energy to get myself anything else. Did it last long, disappear overnight or gradually improve for you, anything in particular help? I presume no choice but to go with it 😟
Ho hum - what drivel - fatigue is listed under common side effects ...
I just gave into it. The most annoying thing was falling asleep in the middle of TV programs. I taped everything I wanted to see except the News. I would then have to trawl through to find out when I went to sleep! I would sometimes find I was watching the end of a programme before the middle!
PMRproAmbassador
"I had the same test which came back at 148 & my GP marked it as "normal no further action""
Pardon? Is that just a basal cortisol test? As opposed to a synacthen test? 148 for a basal cortisol is DEFINITELY not "normal". Under 100 is conclusively adrenal insufficiency. Over 450 is normal. In between is "equivocal" and requires a synacthen test for clarification.
In this paper
journals.plos.org/plosone/a...
they say values less than 100-145 are predictive of insufficiency. SO I fal to understand how they can claim 148 is normal!!!!!!!
Though it isn't surprising since you are on 5mg - bit borderline that, will still be suppressing the production of cortisol.
At present you should keep reducing very slowly to encourage it to return. Lower pred is the only thing that prods them into life.
It was a 9am cortisol test and the result was most definitely 148 but things later improved. This time I feel much much worse in myself with fatigue. My GCA is controlled and my arthritis etc isn't playing up right now. I don't have anything else to suggest Covid and have tested regularly. Blood tests normal. As in my reply to Piglette my first thoughts were Indapamide but GP isn't recognising it a side effect. Thank you for the link will take a look now.
Just gave you another link
healthline.com/health/drugs...
under COMMON side effects, fatigue, And tiredness and drowsiness are triggers for seeking immediate medical advice ...
Are you SURE he's a doctor 
OMG that was my first thought and the reason I phoned the duty Doctor. I didn't want to take them in the first place as Im already on Spiralactone. When I queried 2 water tablets and Potassium I was told it was safe as one increased potassium and the other reduced it and would balance each other out. Indapamide has reduced my BP beautifully & quickly but if that's the reason for my extreme tiredness I now have to start all over again before I can start Leflunomide. I have been worried sick at how awful Ive been feeling and can't stay awake.
Yes, I do wonder as they offered me a 9AM Cortisol Test in the afternoon!
It's OK up to 1pm, but beyond that it'll be lowered so unreliable.
I don't THINK that any diuretics actually necessarily INCREASE potassium, potassium sparing diuretics just don't make you lose it to achieve the effect. The comments in various articles seem at odds with one another. But either way - they should be checked regularly to be sure they ARE balancing things out. Are you taking both all the time? OH was only to use a second diuretic if required or he ended up in all sorts of trouble.
Yes I take them together and the Indapamide are the slow release sort. I don't have any emergency dashes to the loo but I do get up twice a night. I believe the Cortisol test results takes a little longer than usual bloods which I often get the same day. It will be interesting to see what happens because I will then know if the tablets are to blame as I first thought. Thank you
Oh dear Dad2Cue you have just managed to confuse me further in the nicest possible way and it doesn't take much these days between hospital and GPs. Thank you for the explanation.
No, please don't apologise it truly wasn't meant that way. I keep saying that its such a learning curve and I don't know how I would have coped alone without you all sharing your experiences and advice.
I was diagnosed with adrenal sufficiency 5 years ago & have recently had a review morning cortisol test followed up with a synacthen test. The figures which I don’t have to hand immediately showed that little had changed in 5 years & I’m pretty sure my morning figures were similar to yours. I take 3.5 mg pred a day unless poorly. So pretty low dose. I have been waiting since July for a discussion with the endocrinologist but I suspect I will be on this dose indefinitely. I had got down to 2mg when diagnosed. Generally I’m fine on 3.5 but any extra stress or physical work (helping son landscape his garden & 4 nights in strange bed etc) can make feel extremely tired & still recovering! So I occasionally up my dose to 5. Main Covid symptom was extreme fatigue & so went up to 8 for a couple of days, decreasing again gradually. So…. If you do have ai you will not necessarily have to be in a high dose. Best wishes x
Hello HappyDiamonds. I had a 9am cortisol test at 5.5mg of Pred and the result was 22! I had asked for the test because of tiredness and fatigue. My GP took endocrinologist advice after receiving a 111 call and put me back up to 7.5mg immediately until I could see NHS rheumatologist. The appointment is on 30th Jan 2023 😨. Bearing this in mind I went privately as it felt like a long wait. (I have paid privately all along until now due to limited appointments during COVID so, saw the same rheumatologist ). My rheumatologist has asked me to reduce to 7mg immediately and continue slowly to 6mg and come and see her again in December with full blood count. (I will keep my NHS appt in Jan 2023). She said low cortisol at 5.5mg should not be a ‘cause for alarm’ yet as the Pred is suppressing it and ‘yo-yoing the dose wasn’t helping.
This is just my story. I hope you find answers 😀😀
Sensible woman - obviously the endocrinologist was on a different page of the using pred manual! The more appropriate action would have been to provide a rescue kit of injectable hydrocortisone just in case of an emergency.
Wonder what the endo thought the rheumy could do ...
I will mention the hydrocortisone kit at my next appointment. Thanx for that 😀
SheffieldJane can probably tell you a bit about it. Hers arrived out of the blue with no explanation!!!!
Max and me have tried to get one to no avail.....GP and Endo pass the buck as they say to each other.as to who should provide it..in the mean time.......just an emergency bracelet....Lucky SJ.....
Time they grew up!!! Oh well - at least you know and would call 999 if you needed to. Hopefully there would be one available ...
hI there
I have adrenal insufficiency. You have to know I've been on prednisone for 7 years and never had a flare but have tampered very slow taking months to adjust to the new level and never reduced unless bloodwork was ok.
It hit me hard the fatigue at 4mg, my sleep went to crap evenwith all the sleep meds I'm on.
I'd sleep for 3-4 hrs up for 3-4hrs exhausted and back to sleep for rest of morning.
My rhumitologist finally tested my blood for cortisol at 3mg and I was at 20. I've been referred to an endocrinologist and he wants me at zero by January. At 1 mg I did a 24 hr test and now 30.
I see him in January and I'm at .5mg
I'm fatigued daily but getting better.
Thanks everybody for your much appreciated replies. I had my blood test this morning and the results this afternoon were "Serum Cortisol Level 266 nmol/l Unable to exclude adrenal insufficiency in the first instance. Please repeat 9am Cortisol test. GP marked it as satisfactory, no further action. My GP also checked my HbA1c which came back as 42. GP marked abnormal but expected. I have stopped 2 tablets of Indapamide and do feel a definite improvement although today I am tired but I always am the day after injecting TCZ. I have been trying to find out how long it would take 1.25 slow release Indapamide tablets taken for 3 weeks to be out of my system but haven't had any success. I also left a message at the Surgery for a GP to contact me and prescribe an alternative BP medication. Im really praying I will get back to how I was a few weeks ago as this considerable drop in energy is getting me down.
The half life of the indapamide slow release tablets is 14 to 24 hours - so it would take 3 to 5 days to get ALL the indapamide out of your system after one dose - I suspect possibly a bit longer after 3 weeks as it must raise the baseline over the time you take them, perhaps a couple of weeks?
266 isn't bad at all when you are still on 5mg pred - what it doesn't show (nor would a synacthen test) is whether you are getting enough extra in stress situations, So avoid stress (in the words of a local "oracle" here to me!) but of course all this is stress.
Have you got your own BP cuff? You need to keep an eye on your BP. Mine is lower as my pred has gone down with TCZ even though TCZ is supposed to raise BP - I haven't yet adjusted my BP meds because so far it is just healthily low not worryingly low!
Thank you so much Pro for the explanations. I managed to find the half life details but didn't know how to work out how long Indapamide would stay in my system. I do take my BP at home which is currently in the 150s but Hospital require it to be below 140 to take Leflunomide. I did taper to 4mg Pred today and will be on TCZ fortnightly now so it may go down naturally as BP was 135 before my recent eye surgery and small flare when I had to increase Pred. As for stress my card was just refused in village shop for £2.85 luckily I had a little cash but did I feel like a criminal especially awkward as they prefer card payments. Not taking my BP just yet!
A drug reaches near enough zero in the body after 5 half lives. Though that assumes the baseline is zero - and with these delayed release drugs it is difficult to know what YOUR baseline is.
Have you checked with the bank as to why it was refused?
That is very useful to know thank you. Yes, apparently I have used contactless enough times to reach £300 and then contactless becomes unusable until such time as you make a further purchase using chip and pin and contactless starts all over again. They had no record of my trying chip & pin this morning so suggested the shops machine is faulty. Trouble is so many places prefer card payments now and Im using chip and pin more often. I joked with the bank that I now have to go out shopping just to use my card chip and pin.
I have to use C&P for anything over 26 euros so it is used regularly really. I don't remember ever having heard that before though - be nice if they told us wouldn't it!!
Yes it would be -I had similar issue last week… and thinking back it has happened before. Now I know reason!
There you go DL at last I have been able to tell you something useful 😂
Thank you 😊
Not what you're looking for?
You may also like...
Is there a test for Adrenal insufficiency?
Saw my GP today which was a complete waste of time as I seemed to know much more about my various...
Adrenal insufficiency or what?
I've just had my 16th weekly shot of Actemra and I am tapering 0.5 mg of pred every 2 weeks, now...
Is it Adrenal Insufficiency
I am down to 4.5mg Prednisolone. It has been up and down but OK. Two weeks or longer on this dose...
Is this Adrenal Insufficiency ???
Hello wise people ,
Looking for your thoughts please , I see my Rheumatologist in 3 days and I...
what is the adrenal zone?
I've tried searching in FAQs but without success. What prednisolone doses constitute the adrenal...
Related Posts
What happens when Adrenal Gland starts working
Is it a flare or something to do with adrenal insufficiency?
What happens if Prednisone isn't taken for PMR?
When should I start to reduce pred
Is this a flair or adrenal insufficiency?Moderation team
Fran_BensonPartner
SophieMBPartner
