Short synacthen test results worriome

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.

23 Replies

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  • 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

  • netdoctor.co.uk/diseases/fa... hypoadrenalism.htm

    broken this up for easier reading.

    dee... that is dangerously low as far as I am concerned, I knew mine was low but no one listened and when I eventually got my sst my baseline was 217nmol which was considered 'normal' by an arrogant short nasty horrible mean little creep of a

    professor............... who said I needed a psychiatrist-- I know it wasn't normal and genova diagnostics proved it.. i was so ill , you will see the article above will tell you that your baseline is highly abnormal, cortisol is needed / is essential for life,

    make sure you get help asap.. the injection just gees up your adrenals to get them working so they struggle to produce your end result any way.. but without that injection to stimulate them you are trying to survive on that amount which is basically barely there at all.

    .I don t suppose you know what your ACTH is? don't delay and dont be fobbed off- it is

    no wonder you are stuck in bed, and DEE, you can trust the writer of the above article, www.net doctor is written by a bunch of forward think doctors who will tel you if you click ' about us, or about netdoctor, that looking on reputable sites is

    the way forward for info... also the doctor who wrote this article is now a prof of endo and is a lovley man-- ihave seen him, if you are not getting the help you need, and are in London go see him, or print the page off and take it to your own doc/or consultant ASAP. don't delay.

  • 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."

  • 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

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

    G x

  • 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!

  • Rare to fail?

  • 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.

  • you will fail because they willalways tellyou you are normaleven when you are not- as I said read that net doctor the doctor who wrote the article is a prof of endo who I saw, his word cannot b disputed print it off and show it to your ow n endo, its dangerous t have such low cortisol. addisons can make yu extremely ill or kill you if not treated , iknow- I was nearly dead!

  • Im in australia

  • 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.

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

  • 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.

  • sulamaye she has her results they are much too low , she needs to print that net doctor article off NOW, and get help NOW, no more wasting time facebooking or printing results off when she already has them. do not delay...

  • 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.

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

  • and you ne ed to ask for apaper copy to keep yourself as proof

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

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

  • 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.

  • I only had test on wed.

  • 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.

  • 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.

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