Please help- SST results

[Lollipop20]

Hello

I was referred to an endocrinologist and my cortisol was low at 220 so I had a SST yesterday and the results have come back as below which they have said is fine and nothing else is needed to be done. But my baseline is even lower than before? Is this ok? I’m not on any medication.

9am-186

30 mins- 509

I feel lethargic and dizzy and flat and nauseous at times. I don’t know what to do now really?

Thanks

Did you ever get an answer for this? My 8am cortisol was 170 so waiting for SST.

People have very varied baseline cortisols. That’s why a SST is needed, to check that your adrenal glands are working properly in response to a stimulus. If the stimulated cortisol is >475, you’re fine.

Yours sincerely,
an endocrinologist’s secretary.

No you are not necessarily fine . Passing an SST just means your adrenals can react and produce cortisol but that doesn’t mean you are fine it simply means you don’t have primary Addisons . You still have a sub optimal cortisol level that requires further investigation .
yours sincerely
Addisons patient .
I hope your consultant is aware that you are handing out misleading advice on the internet .

Thanks for replying, I've had extreme fatigue for over a year I already have coeliac disease. if your adrenal glands respond correctly is there nothing to be done even if low cortisol is causing such fatigue?

If you have low cortisol levels but pass a Short Synacthen Test (SST), the next step is typically to consult with an endocrinologist to discuss further investigations, as a normal SST doesn't always rule out adrenal insufficiency, especially if you are experiencing symptoms suggestive of low cortisol; they may recommend additional tests like a longer ACTH stimulation test, a glucagon stimulation test, or a detailed review of your medical history and current medications to understand the cause of your low cortisol levels.

Key points to remember:
Interpretation of a normal SST:
While a normal SST indicates your adrenal glands can respond to a stimulation with ACTH, it doesn't necessarily mean your baseline cortisol production is adequate.

Possible causes of low cortisol despite a normal SST:
Secondary adrenal insufficiency: Issue with the pituitary gland not producing enough ACTH.

Stress-induced cortisol depletion: Significant stress can temporarily lower cortisol levels even with a normal adrenal function.

Medication effects: Certain medications can affect cortisol levels.

Testing variability: Sometimes, a single test may not accurately reflect your cortisol levels, especially if taken at a suboptimal time.

What your doctor might do next:
Review your symptoms:
Discuss the severity and pattern of your symptoms like fatigue, weakness, nausea, dizziness, and salt craving.

Check for medication interactions:
Review any medications you are taking that could potentially affect cortisol levels.

Further tests:
Morning cortisol level: A repeat cortisol test in the morning to assess your baseline cortisol production.

ACTH level: A test to measure the amount of ACTH in your blood, which can help differentiate primary adrenal insufficiency from secondary adrenal insufficiency.

CRH stimulation test: A test to assess the response of your pituitary gland to corticotropin-releasing hormone (CRH).

Insulin stress test: A more rigorous test to evaluate your adrenal reserve by inducing a controlled stress response
I’ve just copied and pasted the above . Do not allow them to just say you passed so there’s nothing wrong . Frankly endocrinology care for Adrenal problems is so hit and miss that many of us , even people with a diagnosis, constantly have to contend with sub standard care . Hope you get the answers you need .

Thankyou so much :)

The OP has already been told by an endocrinologist that the results were fine. I was merely explaining why that was. The subsequent poster hasn’t even had the SST yet, but of course it will likewise be reviewed by a medical professional.

I think it’s quite irresponsible to make someone worry unnecessarily about something when an expert has said it’s fine.

@GrumpyDullard the point being that a morning cortisol of under 200 is not fine irrespective of whether she passed an SST . As I said in my second post the care for adrenal insufficiency in this country is dire . My answer was directed at the first poster who has passed her SST and yes lazy endocrinologists will say you passed so you are fine but that is not the answer , there are further investigations that can be undertaken to get to the root cause of the sub optimal cortisol . IME it’s very irresponsible to tell people that because they’ve passed an SST they are fine and dismiss their ongoing illness .

So you, a random person on the internet with no medical qualifications, knows better than a hospital consultant? Got it.

@GrumpyDullard no I’m a retired nurse with 50+ yrs of expertise in Addisons disease actually . Personally I’d rather sick people stood up for themselves in the face of so called experts and asked for further answers rather than being fobbed off with - it’s fine you passed . Unless you personally have had a type of adrenal insufficiency I doubt you realise how ill it can make you .

Please come over to the UK Addisons Disease & Ai Info and support group on Facebook and we will help you. Your low baseline cortisol is indicative of secondary adrenal insufficiency. The SST only excludes primary adrenal insufficiency/ Addisons disease. It’s very complex but essentially you need further investigation into secondary. I have Addisons.

www.facebook.com/share/g/14vPzsvPT4/?mibextid=wwXIfr

Completely incorrect.

@Pigeonqueen now 2 of us have said it perhaps she will stop arguing .

Thankyou for all your advice, this is my only form of social media currently unfortunately. My first cortisol level AM was 220. Repeat test was 170. I have a phone call next week pre SST call it says, as much as I don't want another illness if they can help with this fatigue it will be amazing I'm really struggling x

It would be worth joining Facebook just to join the group. Honestly it’s the best resource for help and advice.

The Pituitary Foundation have an endocrine nurse helpline (if you google the website you should be able to find it) and that may be useful to you too.

Yes I will good idea, thanks for your advice x

It’s an excellent group , definitely worth a look .

No sorry I haven’t done anything about it which I probably should but it’s so hard to get an appointment/test or answer anywhere! Did you have your SST?

Thank you so much for this, frustratingly the endo signed me off so I’m assuming I’ll have to go back through the referral programme (if the GP even refers me again as I imagine it would be difficult as they’ve already signed me off on that) and it’s hard to get appointments etc as it is. Frustrating really, might do a cortisol test privately and go from there. Thank you so much for this response if I do manage to get referred I will take all of this with me

My SST test is tomorrow, the nurse said on phone my other bloods are fine so if my SST is fine then "it's just the way I am" frustrating x

Ahh ok just out of interest what other bloods did you have done? Xx

When my Dr did my bloods for fatigue he also did thyroid x