Getting fed up with this. Need help again please :(

Sounds like Cushings but drug induced problems can usually take a year to 18 months to subside so it can take ages sorry . People with Cushings due to tumors usually take this long after surgery to recover if surgery is successful. I don't think there's much the endo can do until then but I'm not sure . I possibly have cyclical Cushings due to pituatry Tumor which is impossible to diagnose . If it's due to meds the positive note is it should subside improve and disappear with time . I'm just so fed up cause I can't get a difinitve diagnosis and sick of feeling like crap also x 

Hollaka

It is so frustrating to me to hear of the arrogance of the Endocrinologists who deny the help you need, because you do not fit a specific test results. I thought I had taught them that the testing ranges in their medical books was not realistic and that no two Cushings patients are the same, after 28 years they are still in the same mold. With using steroids to fix your Chrons they have induced steroidal Cushings, which now you have Chrons and the Cushings symptoms. I'm not at home right now, but I can look up all the symptoms I had at the time of my diagnosis, after 9 years. As I said before, inducing Cushings and then trying to lower the steroids you now get to deal with the steroid withdrawl and face both the Chrons and Cushings symptoms. I would try to find a Endocrinologist who specializes in Cushings and steroid induced Cushings. If that is possible in the UK. I know I have Cushings and I honestly only have my primary Dr and my neurosurgeon. I do not deal with a endocrinologist anymore. I know you are very frustrated and so sick of being sick and no one is really helping fix it. I'm praying for you that God will intervene and open a door to the right Dr to help you.

Hi again.  I can identify with many of the symptoms you show.  It is a sad fact that the symptoms can vary so much from one patient to another.  My GP who is wonderful gave me tests for everything but they all came back normal.  Then I was watching Doc Martin on TV and he said to a patient about their symptoms and when they added facial hair and sweating he immediately knew it was Cushings.  I then went back to my GP and lo and behold the diagnosis was confirmed.  It  must be so hard for you when you can't see the Endo till you are off the Steroids.  Very frustrating.  It can sometimes take ages for a firm diagnosis and then only when the GP has experience of Cushings or is open minded to the fact that you know your own body!  I do hope that things will improve with your withdrawal from the steroids and that you will then be able to get on with a diagnosis.  I am thinking of you and hope that someone else may be of more help.

Thank you all for your replies. I'm so fed up with my IBD team right now as they've palmed me off to an endocrinologist,(the endocrinologists  who won't see me til I'm off the steroids)so I'm basically stuck. I've emailed my GP the email response I got from my IBD nurse so hopefully she'll pick that up tomorrow.  All my tests have come back confirming it's Cushing's but cos it's steroid induced I'm on my own apparently?! As you said cycliccushings you'd think they'd have learnt by now that this needs to be monitored?  Everywhere online says I should be under an endocrinologist the minute you notice symptoms if taking steroids but clearly my local endos have other ideas! 

Nails24, I'm so sorry they made you feel that way, there's nothing worse than feeling so rotten & a dr who you're meant to depend on ridiculing you! I swear they think so many illnesses fall under "mental health" nowadays & that's just a fob off! I've had crohns 30 years & when I started flaring really badly this year my bloods were all normal as was a colonoscopy & MRI. I kept telling my gastro team how sick I was til eventually I ended up going in to the ER & getting admitted. They did a calprotectin test (shows bowel inflammation levels) and they were sky high! Finally agreed to do a capsule endoscopy & again showed ulceration & severe scarring! Also found that my liver was failing on the drugs I was on! So my long point being - we KNOW when something's not right with our health, we're the ones that live & breathe it every day so for a Dr to humiliate you like that should be reported! 😡

Cycliccushings - if you have a list that'll be great. In the UK we're kinda limited to where we can go to see the specialists, it's not like the states where you get a referal & can go anywhere u like, here it's down to location. I have a choice of two hospitals, the one she wrote to is closer & easier to get to. I have asked my GP to write back to the endocrinologist asking them to see me sooner but who knows... 

meanwhile, my "hump" is causing major pain in my spine (basically where my hump is) & im now starting to struggle to sit upright & walk which is new... not sure if that's relevant to Cushing's tho or just bad luck.. 

Finally, Vicky, am glad you got a confirmed diagnose finally (good old Doc Martin!) My GP has confirmed that I have Cushing's as all my tests were abnormal but because of the steroids they can't see "how" abnormal they are until I finish the steroids (which I personally think is bs as you only have to look at me now & see how bad it's got) but hey ho I will continue to battle them - me vs The NHS 🤣🤣🤣🤣 

Thank you all again for replying, you have all become my cushie buddies ??