Short Synacthen Test

[BlackInk]

Hello

I'm having an SST tomorrow morning to investigate a lowish morning blood cortisol result (305, but was on HRT at the time and have now been off it for 2 months in preparation for further testing).

I've been suffering a long and growing and worsening list of symptoms for a few years and have had various abnormal results but not getting anywhere really.

A few questions...

My appointment is at 8.30am but by then I will have been up for almost 3 hours, got kids to school, eaten breakfast, driven for an hour, etc. Is this likely to affect the result? Higher or lower the longer you've been up and about for?

If the first sample they take (before giving the injection) is still low but subsequent samples show that cortisol has risen sufficiently, does that rule out cortisol/adrenal problems or would it lead to further investigations?

I could be wrong but don't feel that I have Addison's (I have some but not all of the key symptoms). I am suspicious however of a pituitary or autoimmune problem. At the start of all this my periods stopped out of the blue (age 43) and my mum had a pituitary tumor at a similar age, which she was told could be hereditary. Strong family history of autoimmune disease.

So. Sudden menopause after years of fertility problems.
Positive ANA result followed by a negative one.
B12 deficiency (not diet related but PA not confirmed).
Stomach problems.
Skin problems (very dry skin, rashes, weird reaction to cuts/bites etc.).
Persistent low ferritin, low platelets, folate.
Exhaustion beyond belief.
Joint and muscle pain.
Anxiety and adrenaline rushes without reason (often wake me at night).
Trouble concentrating and thinking/ talking straight.
I could go on. I'm a fecking mess :(

Any useful insights?

Thank you!

Hi @BlackInk how did the test go , when I had my SST the cortisol didn’t rise at all , but I already had a pretty definite diagnosis of Addisons so it was really just a confirmation exercise . If the levels do rise my understanding was that the issue with low cortisol is due to the pituitary gland not telling the adrenal gland to produce cortisol as opposed to the pituitary gland functioning properly and the adrenals just not working to produce cortisol . I had the more typical Addisons symptoms of nausea , vomiting , weight loss , low BP etc

Thanks for your reply @Floralnomad.
The test was fine. The nurse said I would probably feel panicky/sick/racing heart, but I felt totally normal throughout. She said 2 weeks for results, so just waiting now!

I do have nausea/weight loss and lowish BP but no obvious pigmentation and sodium etc are in normal range.

I hope the results give you some answers

Did you get your answers OP?

Just wondering as I had all of the symptoms you described (minus the menopause and fertility problems) and was even tested for Addison’s disease myself but it turned out I had Coeliac disease. Have you been tested for it?

Hi @Vicky1989x

Results of the SST were normal - cortisol rose from 300 to 600 after 30 minutes. I've been discharged from endocrinology as they say the lowish morning cortisol isn't a problem in itself.

I think they did a biopsy for coeliac a few years ago during an endoscopy and it was normal/negative.

Not sure where to go fro here TBH...

@BlackInk My first endoscopy for Coeliac was negative, it wasn’t until a few years later it was positive. The Coeliac hadn't done enough damage which gave the negative result. Might be worth looking into again? Good luck!

Sorry to bump an old thread, I hope that’s allowed? I guess others who are getting a synacthen test will find this thread via search in future, just as I did, so adding my experience might help.

I’m sat in the hospital right now, having had my synacthen injected and waiting 30 mins before they take the second blood test to see what effect it’s had. I haven’t felt any odd sensation following the synacthen being injected, so I’m assuming I will be a test fail and will go onto hydrocortisol meds. That might sound like I’m getting ahead of myself and probably I am, it’s just I already flunked this test once before with a very low rise in serum cortisol measured after synacthen injection and the endocrinologist wanted to repeat the test later once my cortisone pills dose had reduced to 10mg.

Actually main reason for posting was as reassurance to others who are looking forward to this test with trepidation. It’s a cinch, just a little prick in the arm, same as a blood test then they take a reference vial of blood and inject the synacthen stuff. Doesn’t hurt at all in my experience having had this twice.

After 30 and then 40 mins they’re going to take more blood but it’s all easy and just a nice sit down and rest mostly, so don’t be scared if you have to get tested.

I didn't feel anything during the test either @MarvinGerard but my Cortisol rose sufficiently from 300 to 600.

Wow, those levels sound so high, but I suppose that’s a normal range, assuming you’re using the same nmol/l measuring units as my readings are.

I googled and the levels after half an hour are meant to be over 420. Well, a year ago when I had my first test my initial reading (before injection) was just 14 and after 30 mins it was 70 and ten mins later it was 89. That was judged to be a fail.

Still waiting for results of today’s test, but I‘m checking online every 20 mins because I’m impatient (and optimistic of fast answers!)😅

Do I assume @MarvinGerard that you have adrenal insufficiency as opposed to Addisons ?

I don’t know what I have at the moment, nothing diagnosed in relation to this yet, although I have a few other diagnoses (CIDP, MGUS & heart trouble). The evaluation of the initial synacthen test a year ago was that it may be secondary to the high dose cortisone pills I was on, and the test would be repeated once the cortisone dose was down to 10mg, hence today’s test.

I don’t yet know the result of today’s test, but assuming it’s abnormal they maybe need to do other tests to pinpoint why it’s abnormal. Hopefully the doctor will tell me what I need to know, but usually it seems it’s down to the patient to Google around and join the dots up.

Well I have my test results now, but not sure how to interpret them, so I need to wait to hear from the doctor.

The initial reference cortisol level was 128, then after 30 mins it was 225 then at 40 mins back down to 198. Surprising it dropped in the ten mins between sample 2&3 as I would assume it’s meant to go up and up.