I've been on low dose steroids since March in an effort to tackle my substancial exhaustion, around 10mgs total a day, sometimes 7.5mg so very low dose.
Unfortunately last week I failed my SST with the following results :
341 start
396 at 30 mins
448 at 60 mins
The previous stim done in January was :
315 start
520 at 30 mins
611 at 60 mins
So a huge deterioration, not in the baseline which has stayed pretty similar but the stimulation of the adrenals which has all but stopped.
I have become very tanned over the last 6 months which has upset me hugely.
Anyway, the question is, obviously they are now suspecting adrenal insufficiency or Addison's (waiting for the ACTH to come back) but does anyone know why my adrenals would be able to produce a normal amount of cortisol for the baseline (which suggests my adrenals are normal and working as the baseline is a very good number) BUT can't work when stimulated further by the ACTH test?
I am really really puzzling to understand this and it's driving me mad.
If anyone could explain or knows why please let me know but I appreciate people might not know.
Thanks
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Because your adrenals are failing and incapable of reacting to the stimulus, presumably. And I would not have said that 341 was a good baseline - but I'm no expert, of course.
The point of an SST is to find out why your cortisol is low. Is it due to adrenal incapacity or is it due to lack of stimulation from the pituitary?
If your adrenals respond to the stimulation injection, then the adrenals are healthy and it's the pituitary at fault.
If they don't respond to the stimulation then it's the adrenals that are at fault.
But, you'll know more when you get the results of the ATCH test.
The ‘tanning’ you describe could be related to a liver condition or it could be hyperpigmentation which is a symptom of failing adrenal function. Hyperpigmentation is normally found in the creases and folds of the skin though.
I’ve had 3 synacthen tests over a few years. All came back that I past. It could be low ACTH as the synacthen is false ACTH injected. Did you feel any different after the test for a few hours or a day maybe. I know I felt fantastic for a day but then went back to feeling normal. The range is normally 155-650 in my experience. I get my 9am cortisol checked every 3 months and it’s usually around 280. But if I’ve been unwell it goes higher. I had covid recently and it was 350. I think your baseline of 341 start is pretty good. My understanding is that cortisol rises when we are unwell as it’s our own natural steroid and also rises during the fight or flight we can experience. So you don’t want it high it needs to be mid way in the range normally. My guess is it has lowered on your recent synacthen test from previously is because you are on hydrocortisone medication. If you take steroids your own steroids (cortisol) drops. You were not on steroids for your first synacthen test but was for the second test when your response is lower. Why were you put on hydrocortisone if your response was better previously? Steroids can be detrimental if not administered correctly.
Although I passed my synacthen tests my baseline was pretty low 155 (155-650) at 9am. What I found my problem was that my T3 was extremely low 3.9 (3.7-6.0). So I’m a very poor converter of t4 to t3. Privately I was trialed on t4 plus t3 medication. Oh boy oh boy what a huge improvement that made. From unable to walk properly or even sit up to walking briskly and doing gardening quite quickly. A few weeks later I had my normal 9am cortisol blood test and my level had increased hugely from 155 to 450. It’s settled now around 280 at 9am. So, for me my fix was the addition of T3. Which also fixed many other issues I was having. Have you checked your thyroid TSH, t4 and importantly t3 levels. Why was you prescribed hydrocortisone medication in the first place, did they rule out low t3 or low acth first??
That can invalidate reading, I assume the consultant or nurse looking after you asked you to come off or a plan of how to navigate this if coming off was totally impossible.
I had short synacthen test a couple years back now… I have steroid inhalers and was told I had to come off week before as that can give false readings… I could take ventolin if required but was to limit that if I could.
My assumption for me is steroids in inhalers over such long time are possibly causing some adrenal issues periodically… I have been on them good 40yrs… even though lowered my dose and asthma is well managed.
I have the tanning like thing over lower arms and some patchy bits on my neck but told could be high blood sugar … which I didn't have, so I also had glucose tolerance test & Blood sugar checked whilst at it… can’t say if sun damage as that was another theory…it does react and darken and can go redder when in the sun to be fair.
Melasma and hyperpigmentation caused by different things but numerous things it seems.
Look up thyroid-induced melasma, and thyroid and hyperpigmentation… apparently it can cause it too.
The way the SST is carried out by UK hospitals means that doctors rarely test ACTH. As a result they can diagnose Primary Adrenal Insufficiency (if it exists) but not Secondary Adrenal Insufficiency (if it exists).
In other words, they test the amount of cortisol being made by the adrenal glands during the SST, but they rarely test the amount of ACTH produced by the pituitary.
The annoying thing is that doctors say Secondary Adrenal Insufficiency is rare, but it seems likely that they consider it to be rare because they rarely test for it. It's a self-fulfilling prophecy!
Another useful link...
See pages 68 - 70 in this document called the "Endocrine Bible" :
Look at DHEA deficiency - I have suffered for years and then after 25 years it is thought my DHEA has been low all my life. Easy to rectify but run past your medical people first.
Hyperpigmentarion can also be from being hypo, kinda more like yellowish skin. Your adrenals seem to be working, but maybe your pituitary isn't, which could also be caused by low ft3.
Thank you everyone, I'm just reading all comments and taking them onboard 🤗
yes I do wonder if my skin colour is due to my low T3 level - it's always 3.7 on NHS testing and 3.1 on medichecks testing. My T4 is always 16 on NHS testing and 11 on medichecks.
But they will not do anything with my T3 until they know definitively about my cortisol and adrenals.
I have turned much more pronouncedly tanned in the last 6 months though which is a worry.
My liver enzymes are completely normal so it isn't due to anything to do with my liver.
They have been doing some other tests - IGG4 which was normal and more recently my A.C.E which was low at 20 as reference range is 20 - 70 though reading up, this might be affected by the betablocker I'm taking.
Basically in a nutshell I was put on steroids because AI was suspected due to my lowish cortisol tests and odd other tests like prolactin, DHEA, T3 / T4, renin and FSH.
I was initially put on 10 / 5 / 5 but found that was far too much so we agreed on 7.5 / 5 and sometimes 2.5 if I felt I needed it and I started to feel better on that dose.
I was on this dose from April until June.
At the end of June I started to get the heabies about being on steroids in case they gave me steroid induced AI as I didn't have a definite diagnosis so off my own back I started dropping my dose down to 5 / 2.5 and since then there has been a gradual decline in my energy levels and abilities to do anything.
They did tell me that the doses I was on were low enough not to trigger AI because anything below 10mgs is a physiological dose and unlikely to trigger AI but still I was nervous.
So from June onwards I've only been on 5 / 2.5 per day.
They were doing another SST just as a matter of course last week as my NHS endo actually suspected hypopituitarism and had completely ruled out primary AI due to my previous passed SSTs. They were only looking at hypopituitarism and secondary.
I took a 10mg hydro 24 hours before my test as I was feeling ill and needed it but then had nothing for 23 hours except a small dab of 1% hydro cream which I washed off almost immediately. The endo nurse said that wouldn't affect the test.
After my SST I felt dreadful, I couldn't stay awake the rest of the day, literally couldn't keep my eyes open.
Anyway we all expected me to pass the SST and probably give ambiguous results so it was a bit of a shock to see my adrenals had done sod all 😬
I'm now stuck in a situation where I dont know if I have steroid induced AI (though I have spoken to a number of doctors and experienced people and nearly everyone has said they have never seen steroid induced AI happen in such low levels of steroids) or whether I have secondary AI from a pituiatry problem or whether for some crazy reason I've managed to develop primary AI in a matter of months.
I know the ACTH test will be able to tell us if its primary or secondary but I don't think it can tell us if its secondary or steroid induced secondary.
And I'm scared shitless because I don't know whether to keep taking my steroids, try to wean off if it is steroid induced before I do further damage or whether I actually need to up my dose because I have genuine AI and am not taking enough.
I can't speak to my endo until the end of the month and I'm driving myself crazy trying to figure out what to do.
It doesn't help that the last few nights Ive woken up feeling very disoriented around 2am and had bad heart palpitations after I've woken and I'm starting to worry that my cortisol is too low at night which I know realistically it probably isn't as it's normal for cortisol to drop very low but this entire thing is freaking me out a bit tbh.
Sounds like there’s been some positive action in trying to fathom things or rule out at least … keep persevering in getting answers, but try not to stress yourself too much (I know it’s hard) as that in itself can cause more dysregulation, I experienced weird stuff in 2020-1 I had internal shakes blood sugar dropping low my body would go stiff and rigid (like a crisis) and Addisons was suspected but later ruled out… pure worry made me anxious, my daughters a psychologist so had access to selfhelp to calm my anxious mind at that time as stress and anxiety made things worse regarding my problems.
I don’t know your age and it’s something again I’ve experienced as do many is other hormones in perimenopause that rollercoaster knocking us off at times. I’ve been trying to fathom things going down many avenues and ruling things out for over a decade and if didn’t have private healthcare I would be a blithering wreck for sure as had many gaslighting medical professionals throughout my journey … I’ve researched various topics relating to my conditions and having a handful of autoimmune conditions things have been blamed on these and have passed around back n forth as the problem with few other things added in which proved is not the problem at all. I still have unanswered questions…re FT3.
I too have Low FT3 - as do many others…and I will be very interested to know if this all ends up because of low thyroid hormones, so please update us of your journey, it might help others too.
So far I have found Liothyronine (T3) only briefly helped me … it might be that I needed to increase T3 meds but due to TSH levels and the usual worries that medical professionals have, I couldn’t get that extra, and I could achieve same outcome on Levothyroxine (and cheaper of course)… highest FT3 has been 4.2 first 3 months on T3 which I was thinking great some improvement in symptoms too but after 6 months on T3 my FT3 levels dropped back to my usual 3.1-3.7 range. I was on T3 a year it didn’t go up any at all afterwards, I don’t know why and I have been under range at times…but since found I’m oestrogen dominant and too much oestrogen isn’t too good for thyroid. I’m very late perimenopausal and it’s causing all sorts of hormonal issues, so anyone of pre peri or menopausal stage I do hark back to eliminating this as possible issues too as it’s a big change and can cause various symptoms … I’m on Decapetyl that shut these hormones off at pituitary I do have gynaecological issues it’s been found finally (only been mentioning it the last 6yrs to several GPs and gone from quite active to almost housebound in that time, due to pelvic - lower back pain slowly getting back but think my hormones are largely at play here as shutting off has improved situation …too much oestrogen v progesterone isn’t great for thyroid health.
I'd just say one thing. You most likely need a trial of thyroid meds. I'd take a guess that's why your cortisol is low and your pituitary isn't working correctly. I'd be fighting for that now.
Thank you, it's something that I will bring up with my Endocrinologist when I speak to him. It has been a battle to get them to consider thyroid as they say my T3 and 4 are within normal parameters 🙄 but equally I've been nervous to go on them too because I really struggle with heart palpitations and I've seen that alot of people get worse palpitations on thyroid meds.
Palpitations can be from low thyroid levels, many people have them. I was treated with normal in range ft3 ft4 and tsh, but abnormal hashis antibodies and a lot symptoms. You need a good doctor for sure
Hi Incoguto, is it possible to trial the thyroid meds? My TSH is still in normal range (the past 2 years is around 1), but my recent test shows struggling FT3 (normal low), and FT4 (normal high). My Hashi antibody is really high around 900 and my cortisol also in normal low. I feel terrible and symptomatic for years. But my endo didn't want to treat cause it would possible give me unwanted effects.
I don't know if the original poster is still checking this thread for replies, but I came across this paper recently that I thought was interesting, and possibly useful to some members - and it was only published in March 2024 :
Title : A Comprehensive Review of Empty Sella and Empty Sella Syndrome
Radiographic studies have gradually become more accessible and widely used, leading to an increase in incidental findings. Amongst them is the radiographic appearance of an empty sella, which is defined by a pituitary gland that appears flattened or displaced by cerebrospinal fluid (CSF) in the sella turcica."
I have an empty sella - it's apparently completely flat- but despite this I actually have high cortisol. However, my TSH has never been as high as I have thought it should be when my Free T4 and Free T3 were low in range, suggesting to me that my pituitary isn't good at producing TSH but is too good at producing ACTH.
The anterior pituitary produces several hormones, listed here :
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No ACTH
Does anyone have any valid, reliable research papers that i could use to reference a heavy letter of complaint to the GMC?
Test results imply all is normal but my symptoms are so debilitating and similar to hypothyroid. Does anyone have any ideas?
If my doctor offers Thyroxin, do I decline at this point?
