Does failing the Synacthen test definitely mean AI?

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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

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  • Posted

    Hi

    I would say , yes , that would mean AI

    I have to do that test soon

    How did the test go?

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    • Posted

      Thanks Courtenay 26 for your reply. The test itself is no bother. Just a cannula and a one off synacthen injection. I feel asleep after my injection, and the nurse had to wake me up to get the 30 min bloods 😂 Best of luck with your test...

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  • Posted

    I dont think there are any other reasons for low cortisol

    Yours sounds like

    Secondary adrenal insufficiency

    Generally , this is caused by a pituitary tumor

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  • Posted

    You can't really "fail" an ACTH ("Synacthen"wink test. What it is doing is simulating the signal hormone (ACT) that your pituitary would send to your adrenal glands if you needed a burst of cortisol, for example if you were injured in an accident.

    There are two reasons for low cortisol (a) your adrenal glands aren't doing their job or (b) your pituitary is not asking: these conditions are primary and secondary Addison's Disease respectively. Primary is rare, secondary is very rare so should be way down your possibility list.

    Your figures show  that your adrenals did in fact respond to ACT hormone. So you do not have primary AD. The figures are at the lower end of the range so you might have secondary. Your symptoms are consistent with a pituitary adenoma but there are lots of other things it could be.

    While you are waiting to see the endo, ask your GP to let you have a thyroid test if you haven't already had one and if you are a man, ask also for a testosterone test: both of these hormones are generated in response to signal hormones from your pituitary. Go to an optometrist for an eye exam and ask especially for a field test - you need one where they can give you a printout showing your hits and misses. [Ask first, go elsewhere if they can't]. If it shows subnormal peripheral vision, give the report to the endo. [The optometrist may give you a covering letter].

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    • Posted

      I am not making any progress with my Addison's disease diagnosis. My ACTH test showed low cortisol in the first reading at 8 am and after 30 min and 60min as well. I have a 3 mm pituitary microadenoma. 

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    • Posted

      Thanks for your reply. Endo did thryoid tests and they are all normal. GP says just to wait to see what endo says. Had eyes tested a while ago as have had blurry vision but that check up was said to be normal. Doubted I had Addisons as the basal cortisol was reasonable. But secondary or tertiary insufficiency is possibly on the cards I guess. Not many other reasons for low cortisol, according to my research and the answers on this thread. I presume he'll check ACTH levels next?

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    • Posted

      So am I right that you dont have Addisons Disease, Coolcatalan, you have secondary adrenal insufficiency from your pituitary tumor? Are they treating the tumor or just watching it?
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    • Posted

      The neurosurgeon is watching it. I'll not have another MRI until June. When I saw him in December , he was non committal. The tumor is small, 3mm, but for what I read in the books, I am not sure if it is enough to diagnosed as having secondary adrenal insufficiency. The problem is that I have had in the past symptoms like 3 pneumonia in 4 years... I lost my pubic hair years ago which  seems to be a symptom of Addison's disease. 

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    • Posted

      Hey cool Catalan, could the loss of body hair be solely related to the pituitary? I have terrible water retention and just read that the pituitary controls water retention and that fluid can build up on the lungs too, causing pneumonia like symptoms. Let me see if I can find the article... Maybe I'm way off base tho, am sure you have read way more about it than me...

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    • Posted

      Hi

      One thing is body hair, the other thing is pubic hair. Pubic hair is lost in Addison's disease I read somewhere long time ago. (I wish I had bookmarked it). What you say about pituitary and water retention is very interesting. I do not have water retention, but I am sure that there are a lots of sides to  pituitary problems. It is a complex area up there, and I do not know enough about it. Of course I'd like to read the article. Now I have a problem; a dental bridge has broken and I need a dental extraction: 2 molars have to come out. Because I have not been properly diagnosed for Addison's disease, I do not know what is the approach to the extraction. The surgeon has told me 'it is only a little injection 'to numb it'. It is a good job I have an appointment with the endocrinologist in 2 weeks time and I'll ask him about the anesthesia. I will also see another family doctor on Monday to see if he wants to take me. He's my partner's doctor and a man with experience. My doctor is very young and new in Australia. I need a doctor with experience in this country.

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    • Posted

      Ah I see.. Good luck navigating all of that. I don't know if it's useful but whenever I have to have dental work, I get the anesthetic without adrenaline. I found the adrenaline raised my heart rate so much I felt like I was having a panic attack and once I even passed out. I always thought I was just a nervous patient until a new dentist suggested the problem was the adrenaline. Dentists prefer the adrenaline one because it lasts longer but the other one might help if you have Addisons? Body doesn't think there a crisis!

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    • Posted

      Thanks... I have been looking for 'the right dental anesthetic for people with Addison's' (I had a crisis in 2015) . I found the name of  one, wrote it in a piece of paper to show the dentist, and I mislead it. I tried again but I could not find that name. Now with your help using the words 'without adrenaline' I'll will find the commercial  name of the anesthetic. In any case I can talk to my endocrinologist on the 3rd May and tell him that I do not want dental anesthetic with adrenaline. See how he reacts then.... all the doctors are so careful and say very little here. One has to be careful too not to upset them in case they could show the door. Sometime ago,  I had a head cold  and I had an appointment with the endocrinologist. He said: 'double the amount of HC you are taking for 2 days'. (I was doing that, I knew about it). So, he treats me as if I had Addison's does he not?

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  • Posted

    Having to wait so long to see the endo is no good... Do you have the possibility to get another opinion? a second opinion;  the results as 'subnormal' does not mean anything in terms of diagnosis, it is vague and I think you need a more elaborate opinion, where to go from here...

     

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    • Posted

      Thanks Coolcatalan. I was meant to see the endo quite soon after the test but my daughter was in hosp so I missed our appointment. I asked for the results to be sent to my GP while I was nursing my daughter. He's reportedly the best in the country (Ireland) so I'll stick with him for now anyway...

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    • Posted

      When you get a good one, hang on tight. The human endocrine system is astonishing in its variety and complexity. Even the pituitary does an astonishing range of different things (and btw I don't think it likely that you have a pituitary or hypothalmus problem or the cortisol would be a LOT lower). People here know quite a bit about what we've got or had, but very little about anything else. Good luck on your journey, at least you've got past the GP stage.

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