Short synacthen test results worriome

[dee2382]

I had my SST yesterday and results concern me. My baseline was 45nmol/L

My 30min was 261nmol/L and 60min was 383nmol/L. These numbers are low. And tbe baseline is very low. Last few been up and down 115,178 and 199 and now this 45. The 30min didnt rise enougg to go over the >270 they expect. And the 60min was no where near the >530 they expect either. Never even hit 400.

So whats my next point of call? Im stick in bed exhausted most days. I dont understand why. I do have b12 def, vit d and zinc def. I also have high folate they test with b12. I dont know do i call my endo who organised test (see mid nov) or my gp or what.

[Jbsa70]

Hi,

I would suggest that you call your endocrinologist and ask for his interpretation. Did Endocrinologist explained you why you were sent to Syncthen test? Usually Endocrinology sends people for SST test to check whether they have Adrenalin Insufficiency and whether it is Primary (Addison's Disease) or Secondary.

I have my first Synacthen test exactly in a week time,though I have been already treated with staroids for Primary Adrenalin Insufficiency (taking Hydrocortisone since August and Fludrocortisone since September).

Jana

[Jbsa70]

Just found this interpretation online

"Interpretation of the synacthen Test:. A morning cortisol of <100 nmol/l is highly suspicious of adrenal insufficiency . Previously, a cortisol response above 550nmol/l has been regarded as a normal response yet, our data in Cardiff examining a large population of normal subjects, revealed a 30 minute peak cortisol in excess of 450 nmol/l following synacthen can be regarded as a normal result."

[Jbsa70]

m.netdoctor.co.uk/diseases/...

Is really helpful, thank you Bluepettals2, i Haven't read that article before in all my Addison's research so far.

DEE, yes contact Endocrinology as soon as possible about your test results and treatment, they should start treatment soon.

Jana

[galathea in reply to Jbsa70]

Yes, i found the link really helpful too..... explains very clearly. Thank you.

G x

[sulamaye]

Looks like you may have Addisons and I don't understand why your endo hasn't got you in to explain this and prescribe hydrocortisone - of course you have no energy etc etc with Addisons. As long as you can get the endo to recognise this fact I wouldn't be concerned, you actually have something the NHS recognises and treatment will make an enormous difference to how you feel. Where are you in the country? According to someone who I've had contact with who is an expert in her own addisons Birmingham is the only hospital in the UK that has a doctor who actually knows how to properly interpret a SST.

You call your Endo and insist s/he address your results, untreated addisons is potentially very dangerous and you need treatment sooner rather than later - your GP will not be in a position to interpret those results, lets just hope your endo has some sense! Do let us know how you get on, it is so rare to actually fail a SST!

[dee2382 in reply to sulamaye]

Rare to fail?

[Angel_of_the_North in reply to dee2382]

Apparently - very few people here have had an abnormal result - I failed the test ;-). But the protocol seems to be to send you for more and more tests until one comes back "normal" so they don't have to treat you.

[dee2382 in reply to sulamaye]

Im in australia

[Angel_of_the_North]

Generally the next step is an insulin stress test. Nasty, nasty test. Get someone to collect you after it if you get sent for one.

[dee2382 in reply to Angel_of_the_North]

I want to avoid that as a type 1 diabetic....

[sulamaye in reply to dee2382]

They won't do that then. I would get onto one of the addisons groups, Facebook perhaps, and get advice, posting your results. Don't let the NHS give you the run around.

[Sci-fi_girl in reply to Angel_of_the_North]

Agree with you there. The Insulin Stress Test is nasty... I failed that one Really hoping I don't have to have it again!

[Eddie83]

1) Has your endo evaluated you for anti-adrenal gland autoimmunity? They can do this. Unless they are ignorant.

2) With a low ACTH test like this, you should be on hydrocortisone. Taking HC is not a crime! Why has your endo not prescribed?

3) You should be on HC, not one of the synthetic look-alikes like prednisone.

[dee2382 in reply to Eddie83]

I only had test on wed.

[sulamaye]

Yes I did actually say she should be talking to her endo now! But as we r all aware NHS endo's can be crap and support and expert advice from other addisons sufferers can be invaluable in challenging a crap endo or knowing what to do next if they fob you off! It isn't one or the other, they can happen simultaneously.

[dee2382]

I dont have a copy. It was work who accessed my results for me. I need my gp to get results faxed over.

[dee2382]

No drama. I will print a copy off at work anyway if i cant get in to doc before hand.

[dee2382]

Endo just called me at home. He said i need to come to hospital and pick up a script for hydrocortisone and start immediately. Its 20mg in morn and 10mg in arvo. If fever or sick to double for 3days. Dont need to do any other test as it was clear theres issue. But he said its not addison as ACTH was undetectable. Hypothyroid he said. Will collect script asap i guess. He said i need to get started.

[Hidden in reply to dee2382]

hi dee2382 did you ever get your thyroid sorted? Ive had similar results…

[dee2382]

Endo called me this morn in a slight panic. He had me come in and pick up script for hydrocortisone 20mg in morn and 10mg night. Double dose while unwell. Im fairly ugh at mo. Feel physically shattered.