Hi I've never written a post before but find myself desperate and have been watching all the posts with increasing awareness that there are so many people out there suffering like me. I had radio iodine in 2011, a massive dose apparently and have never been right since. My levels drop to the floor or rocket. Currently on 125 mcg thyroxine (was 150 but recently reduced yet again). I sleep all the time have been diagnosed with severe fibromyalgia following extensive spinal and neck surgery, have ulcerative colitis since late 20's. (I'm 56), have a pituitary tumour (prolactinoma) and more recently was finally referred to uclh where on routine testing found to have a cortisol of 15 prior to seeing the consultant for my 1st appt. consultant called me in a panic telling me this was serious and I needed steroid replacement within hours and called my GP to prescribe. I went on HC for 3 months until I finally went for a short synacthen test at uclh which they said 2 weeks ago shows my adrenals are working but they are embarrassed as they don't know what's wrong with me as I feel so ill. They said maybe I've got ME but will repeat the test in 3 months but I must come off of the HC but should carry an injection kit and HC tablets 'in case I don't feel well'. I'm at my wits end as I feel so desperately unwell and feel that if I don't have primary Addison's should I also be tested for secondary Addison's give I have a pituitary tumour which hasn't been investigated since 2011 (I take quinigolide for this) and they are relying on a 2011 MRI of the tumour? Should they be repeating the MRI and testing me for secondary? I am at a complete loss and feel that they're really not sure given they are telling me to carry an emergency injection kit but are doing nothing else right now and I e just been left like this. Can anyone offer me any advice or experienced this? Thanks. Karen
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