The cortisol shots can do a number on you... on some people they can make you cushingoid, on others, you don't recover the adrenal function from the corticosteroid blast right away and the adrenals get a vacation. Symptoms of high and low cortisol can overlap too.
When the adrenals go low, you get the cruddy symptoms. ACTH though is a very difficult test to do well as in accurately as it is a fussy test.
What time was that cortisol test? That is a huge factor? Also, if you are thinking this is a long term disease rather than caused by the steroid shots - not sure of the timing of shots vs tests - then many sets of tests have to be done. Diabetes endo docs are not the best at this. It takes an endo that knows adrenals - the pituitary or a good one can help you and yes, you will have to wait to get in...
The test was taken around 8:30 in the morning. I was feeling pretty bad before the shots. Starting in July. The shots were on Nov 1st and then the blood tests were done on the 29th of November. I just didn't know if these blood tests help to answer the questions about why I was feeling so bad or if the tests were messed up because of the shots. No doctors seem real interested in helping and we dont have many specialists where I live. Is it worth a trip elsewhere or should I just keep waiting until I get better ot i get worse?
The test time is appropriate which is good. Was the ACTH taken in a chilled tube and did the put the tube in the bin or the centrifuge? If it was not taken away and spun right away, the ACTH degrades in the tube.
The test coming 28 days after the shots... should be ok but it is uncertain. You don't know what steroid you got but it was probably dexamethasone. Dexamethasone suppresses ACTH and has a long half life.
Neuro-endos are at larger hospitals and universities and that is what you would probably need. Have tumor, will travel is kinda the motto we use... so you may have to travel. I travel a lot to get the help I need... it is not fun but necessary and I am next to a major city too!
Im pretty sure with where I live that the ACTH test was not handled correct. The few people I have asked about the test didn't even know what it was. I just have no idea where to turn for help. Thanks for all of the help so far. Have you ever had ringing in your ears? Or the feeling like you may have a sudden outburst(like a quick burst of adrenalin)? I have been put on 90mg of cymbalta for back pain and vicoprofin for back and pain in general. Just getting tired of feeling down.
Ah yeah, it is not a common test and even though I battle to get it done correctly (to the extent that I sometimes bring in ice, or the instructions from the lab's own site, or information from a website showing the importance of centrifuge vs time) they often get uh... upset that a patient wants to tell them anything and for a whole year I got either degraded sample (grrr) or tests I know was totally incorrect since I have a sky high ACTH and degraded results lose 1000pts or so - way more than the range.
I do have ringing but that was way before I had AI (mine is a result of surgical removal of my adrenals) so it is not related. I don't have any bursts for sure. I do have a lot of pain though. Cymbalta was horrible for me though.