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Does failing the Synacthen test definitely mean AI?

Posted , 5 users are following.

katbat45
katbat45

Hi there,

I recently had a 30 min synacthen test to investigate symptoms of muscle pain, weakness, fatigue, joint pain, headaches and brain fog for the past 2 years. My basal cortisol was 396 and 479 after 30mins.

Endo described the results as 'subnormal' in his letter to my doc and said that they 'may account' for my symptoms but I can't get an appointment to see the endo for another 5 weeks ..

Am wondering, do these results mean I definitely have some kind of Adrenal /pituitary problem or could there be another explanation? Could they even be a false result?

The numbers don't seem really super low, as in some people's cases. So I wondered if there's some alternative reason cortisol might be low? .. Any help greatly appreciated.. Thanks

0 likes, 26 replies

26 Replies

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  • louise27518
    louise27518 katbat45

    Posted

    Hello

    I am in exactly the same situation,  I have had several sub normal sst tests. I was finally offered hydrocortisone but only because they felt sorry for me I think. I am very skinny, fatigued, achy all the time too. I haven’t taken it as yet as I really would like to the know the reason why my adrenals don’t work right, before I embark on potentially a lifetime of steroids. I know my adrenals are exhausted for some reason I just cannot understand why. I live very healthy to try and manage life tired. I have a private Endo appointment in around 10 days where I hope I can have a good talk through it all in a sensible amount of time, instead of feeling like I am a burden on the nhs. 

    I will update you if I have any news that would help you. 

    • cool_catalan
      cool_catalan louise27518

      Posted

      Louise

      I think it is a very good idea not to 'start' the HC until you get an explanation/diagnosis of your low cortisol level. The ideal test is with a clean blood no cortisone or prendisone etc...There are various reasons why the adrenals do not work well... one of them is genetic. If you have inherited it from your ancestors.  A healthy lifestyle, 'drinking 8 glasses of water/day' this one makes me laugh... it is all very good but when you are sick all these precautions including taking supplements, it is very good. But we all need a diagnosis, and medication if we have a serious adrenal problem. Or any health problem. Having a healthy life style and taking tons of supplements together with 'drinking 8 glasses of water/day' helps us to just survive, but it does not heal nor is a miracle. I do not think they felt sorry for you. I do not think so ... I am more cynical at my age. You are young I think... by the way exhausted adrenals is not a medical term. I think it is adrenal insufficiency. (I have been told off for calling it 'exhaustion' I will be glad to know I have helped with my little experience).

    • courtnay26
      courtnay26 louise27518

      Posted

      Hi Louise

      When I read your symptoms, I immediately

      Thought you had primary Addisons

      It is an adrenal problem

      It is very serious

    • katbat45
      katbat45 louise27518

      Posted

      Hi Louise. Yes that's very frustrating, to think you might be taking something inappropriate without a definitive diagnosis. That's why I'm a little apprehensive about what my endo is going to say. Taking steroids long term I know has its risks too... Hope your meeting with your endo goes well and you get the answers you need...

    • katbat45
      katbat45

      Posted

      And Louise, just wondered, as far as I understand, if you 'fail' an SST( subnormal results <5 50 or 600), do they not then do further tests to determine the cause? But you've failed a number of SStests?

    • cool_catalan
      cool_catalan katbat45

      Posted

      It is important not to take medication until the tests are done and you get a DIAGNOSE (Hope you do soon). If you have to take medication take only hc, the other steroids have more side effects... hydrocortisone is not as bad. I have been reading a lot lately in view that I do not get help from the doctors and they do not give me the diagnosis whether I have Addison's or just adrenal insufficiency.

    • louise27518
      louise27518 katbat45

      Posted

      Hi yes he cut of here is 450 not 550. The way I read it yes they should find out why!! Have an nonentity Monday so will let you know. 
    • katbat45
      katbat45 louise27518

      Posted

      Great Louise, from what I've read even those who just about reach the cutoff and are considered 'borderline' should have further investigations. Best of luck. I got a cancellation so am seeing Endo next Thurs. Can't wait for some answers!

  • courtnay26
    courtnay26 katbat45

    Posted

    Hi katbat

    I just did the test

    Your right, I'm not sure if yours means

    AI, hopefully the doc will explain it

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