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

Posted , 4 users are following.

Hello everyone again

Me again. Hope everyone is enjoying the sunshine (in the UK) and elsewhere in the world. 

As you know I've been diagnosed with Cushing's due to steroids. My problem is I'm getting worse despite tapering my steroids. The endocrinologist won't see me til I'm off the steroids so my GP said my gastro (who put me on steroids for crohns) needs to see me & they've come back today saying I need to see an endocrinologist not them! Arghhhh!! Meanwhile my symptoms are deteriorating & now have the following & would like to just check if these sound like Cushing's or whether it's a side effect of my crohns med (humira). 

Chest pain


Upper pain in my tummy (where my tummy is now so swollen I look 8mths pregnant!)

Mouth sores 

Pain in my "hump"

Pain in lower back/hips

Periods have stopped 

Face so swollen that making me gag when bend face down


Sweating so much I need a towel & fan on me

Facial hair

Purple bruises on my trunk


High BP (now on beta blockers)

High blood sugar

Low mood (mainly due to feeling so crap)

I'm due to have an ecg again next week as they can't lower my pulse then not seeing gp til October & gastro at end of Sep. Endocrinologist will only see me once off steroids! Meanwhile I'm feeling rubbish & over this now. All tests have confirmed Cushing's but because I'm on steroids they won't do anything about it. 

Sorry it's a long rah rah post I'm just fed up with it all today (wipes more sweat off forehead!) 😭😭😭😭

0 likes, 15 replies

15 Replies

  • Posted

    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 

    • Posted

      Thank u for your reply. I'm noticing that Drs are very slow to diagnose Cushing's & only do so when they "must". At least that's what it's like in the UK (not sure where you are). I hope they diagnose you soon & get you treated as I'm with you, feeling this crap sucks big chunks xx 

    • Posted

      Yes I am in uk also brought up the idea of Cushings to an endo I saw and he ridiculed me talked down to me with a bunch of his minions onlooking . I left in tears . It was one of the worst experiences ever . But I am stubborn and know my body . If I'm wrong what is it then . The things he was saying I could tell he didn't know anything about it and probably never seen or diagnosed someone with it so I travelled  to see someone more specialised . I was not aware of my lab results before I seen him and he said my cortisol levels were a bit high so he recommended testing which my blood cortisol higher again but the other tests urines are  normal and I suppressed the dexamethasone to an abnormally low result which by idiot non specialists say it excludes cushings but specialist say it is indicate of a pituatry source . I am waiting to hear from him as I have emailed my labs and he said we 'need to get to the bottom of it ' which in stilled me with some hope ' which I'm running out of now . They never want to diagnose this disease unless it is text book slap in the face obvious and all bloods are catastrophicly out of range which I reckon the extreme cases are the ones that are rare . They are now Cushings specialists are now recognising milder forms is not an uncommon occurrence.

  • Posted


    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.

  • Posted

    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.

  • Posted

    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 ??

    • Posted

      On regards to Drs . Ashley gross man London clinic is supposed to be the Cushings specialist .It is his colleague  that actually listened to me and did testing of his own back I didn't even mention Cushings to him he is lovely I hope he sticks  with me it's down to insulin resistance , cyclic Cushings or both but labs aren't clear cut x telling people everything is due to mental health is so insulting  and infuriating it's a fob off cause they can't be bothered 😡. Plus if that was the case I would admit to that not put myself through this rigmarole !!! Lots of love 

    • Posted

      Exactly. I always say to the Drs look if you think it's depression or what not then fine I'll change my meds (already on fluoxetine from dealing with the crohns flare) I don't care if it is, I'll take that as a diagnosis but don't palm me off! Ugh! Knew I should've studied harder at school & gone into medicine lol!! 

      Thank u for the Dr tip, he may not see me as I'm not London based but will mention to my gp (who actually knows about Cushing's hence why she's already run all the tests on me) xxxx 

    • Posted

      He is private I'm not in London either you can just Arange an appointment and get dr to refer you 350£ just to see him though but any recommendations he has he will send back to local docs so you don't have to pay more x 

    • Posted

      Ouchie lol. Not sure being a single mum of two not working (cos of health) will be able to stretch that far but I'll certainly keep his name in mind if my situation changes (or I loose the will to live with my local endos) xxx 

    • Posted

      I'm single mum of 2 aswell but I do work it is a lot but worth It for me cause could be due to pituatry Tumor x no one else listened local so because they see these conditions all the time they are more likely to listen there all professors there . 

    • Posted

      Ok, fab, thank you. I will google him tonight & if don't get anywhere locally will see what I can do... thank u again xxxx 

    • Posted

      In our part of the country (South West) Professor Waas at Bristol is the best.  I haven't seen him but he treated 2 of my Cushy buddies and is very open and easy to talk to.


    • Posted

      Yes vicky61456 and hollaka 79 professor  wass is supposed to be one of the best in the world he did the TVs series the wonderful world of hormones , he will cost about the same but I heard he was spot on x 
    • Posted

      Thank you ladies. Not getting anywhere fast still. Not heard back from GP, still no app for an endocrinologist. Pain in my hump & lower back is getting ridiculous (sat here with ice pack on my hump as I type). Still having chest pain & shortness of breath along with a crap load of other stuff but at the point of meh with it all... I will keep both endos in mind as clearly my local ones are playing difficult 😞

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