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
You can't really "fail" an ACTH ("Synacthen" 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].
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...
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.
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.
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).
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...
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?
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...
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...
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?
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?
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.
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.