Steroid induced Cushing's

Hormones
1

Hi. New to this site so not sure if this will generate many replies or not but giving it a go. I'm in dire need of help. I have crohns & have been on steroids at a very high dose for several months. The last 6-8 weeks I started developing symptoms similar to Cushing's. My initial symptoms were as follows. 

Huge weight gain (15lbs in 3 weeks)

Massive swelling of face (Moon face)

Hump back (neck has pretty much disappeared into the hump)

Swollen stomach (look 8 mths pregnant!)

Severe /excessive sweating

Fatigue 

Mood swings (not too major)

High blood sugars 

High BP

Sinus tachycardic (pulse around 135)

Head ache

Muscle weakness 

My GP decided to test for Cushing's & did both the 24hr cortisol & the demexaathone (sp?) suppression test.  Both tested positive (24 hr was 1150nmol & suppression was 150).  She then decided to refer me to an endocrinologist. 

The endocrinologist has replied stating that although it may be Cushing's it's purely steroid induced (which I'm not saying it's not) & that they'd only see me once I've weaned off the steroids (which will take about 10 months). Meanwhile I've now started getting pain in my liver. I have pains in my chest & shortness of breath. My GP checked me for blood clots & that was negative & she's started me on beta blockers to try & bring my BP & pulse down (but as today bp was still 145/105 & pulse 120) 

I'm having a DEXA scan tomorrow to check my bone density but really feel I should be seeing a endocrinologist sooner rather than later & think this endocrinologist has just read the referral & gone oh crohns & steroids nothing to do with me & palmed me off. Meanwhile I'm struggling to get out of bed, my face is so swollen I can't bend my head down now without making myself gag, I can barely breath & tummy is so swollen that it's hurting my liver. 

I know this page is generally not based on steroid induced Cushing's but I'm wondering if anyone else has been diagnosed with Cushing's cos of steroids & then just told to wait it out? Not quite sure how I'm meant to manage another 10 months of this (with two children on my own as well). Any advice is greatly appreciated....

2

Hi, 

I'm so sorry you're having to deal with all of these symptoms of Cushing's.  Steroid-induced or not, you will find someone here willing to help and give advice I am sure.   So, please don't feel alone or like you're putting anyone out here because your case is a bit different.   

I do not have steroid-induced Cushing's myself but all I've read says that once the steroids stop, symptoms should cease.  Maybe it will take a bit for the body to re-compose itself, but once you stop flooding the body with the excess steroid, it should hopefully start getting better.  You may need to wait a full 10 months to see a a break in the symptoms.  Let's hope that is the case because they are miserable symptoms indeed.  I'm sorry I don't have much more information for you in regards to steroid-induced Cushing's, but I am always here as part of a support for you for all of the symptoms because they are all the same no matter what the cause is.  Don't hesitate to contact me back if you ever just need someone to listen or to brainstorm or anything like that!  It took me just shy of 20 years to get where I am with test results and I still  don't have a definitive diagnosis.  But as a result of that I've come to be pretty good with researching and understanding things if you ever need to talk. 

I do hope someone else that has experienced something similar to you touches base and can help you through this and maybe even give you some information that will bring you some relief physically and mentally.  

Be well, and much luck to you in feeling better. 

Alicia 

3

I am sorry, I meant you may NOT need to wait the full 10 months to see a change. Whoops! So sorry for

That typo! 

4

So sorry to hear at you are suffering so much.  I had Cushing's Disease from a pituitary tumor and I'm not that familiar with Cushing's Syndrome (steroid induced).

i just wanted to let you know that I had all of your symptoms at the height of my illness right before surgery. I could not even walk 5 feet without being so out of breathe.  My belly was so big I could not tie my shoes or even put my socks on by myself. My resting heart rate was 150. i could go on and on. I feel so badly that you have two little kids to take care of while you are going through this. it must feel like a nightmare.

I imagine that other Crohn's patients might be having similar problems that you are having.  Are there any forums for that disease that will help you. 

There is a website called Cushingshelp that has a ton of archived posts and info that cover all different types of Cushing's. 

I know that it can be very difficult to wean off of steroids when you depend on it to help your symptoms.  I had to take steroids after my pituitary surgery because my pituitary gland wasn't working on its own.  I weaned rather aggressively and the gland started working on its own.  But, it was very hard to come off the steroid.  I was very, very sore with terrible aches and pains....I was extremely nauseated...it was just horrible.  

With Cushing's, I had to learn how to be very patient. I wanted to be healed and back to normal so badly. 

Is it going to be difficult for you to wean off the steroid? An doctor should be helping you with this.  I am not sure what symptoms of Crohn's Disease are helped by taking steroids. I am guessing it all depends on how bad your flare ups are. Did you have surgery for Crohn's?

I had a co-worker that had Crohn's and it really shook her whole world.  This was many years ago.  She had major surgery and went through so much.  Now, it is 20 years later and she is doing awesome.

Cushings is so rare, but there is a lot of info on the Internet if you search.  I got diagnosed in 2002 and relied on the Cushing'sHelp forum that I mentioned earlier. I was lucky that the Internet was available as I would have been completely lost without it.

Do you have any skin issues? I had to take low dose antibiotics every day for over a year because I would get horrendous boils and acne....this is before I knew I had Cushing's.  I also stopped getting my period, I had diabetes and was bruising very easily. My ribs hurt so bad because my belly was crushing them.  My face was so round and my far neck, hump and clavicle pads were choking me....especially at night.

The good news is that once you stop the steroids, all your symptoms will go away.  Mine went away quite rapidly after surgery. 

My resting heart rate took a while to slow down.....that was a scary symptom.  

I hope you can find a good endocrinologist that will listen to you and guide you.  I am hoping that you will be able to wean off the steroids in a decent amount of time.

I am thinking of you and.....wishing you the best.  I know life is a huge challenge for you right now.....I was in hell during my illness.  I never, ever EVER thought I would get better.  But I did.  I am then thousand times better now.

Take care of yourself.

5

Dear Hollaka

I have been a Cushings survivor since 1981, I have dealt with this awful disease. I am the first person diagnosed with "cyclic" Cushings in the

U.S., in 1989. I had pituitary surgery in April 1989, it took them 9 years to diagnose me and because I had such high cortisol in my system for so long it did a number on my body. I have had 16 hand surgeries due to degenerate bone disease caused by the Cushings, I've have kidney stones 8 times and my right kidney removed, which they injured my bowel taking it out in 2014, That caused an enormous hernia, that surgery in 2015. I've had my gall bladder out, my right lung accidentally punctured, four other hernia surgeries. But worst of all, I was diagnosed in January 2016 with another pituitary tumor, this time the size of a quarter, that was removed in May of 2016. AND just yesterday I got the results on my MRI with dye that I now have a new tumor the size of a quarter again on my pituitary area. I see my neurosurgeon on Friday. That is what is so devastating

about this disease. It's never over.

So this is what I'm going to tell you...having high amounts of steroids in your system to try to cure something else is ludicrous. ...you may be trying to help one illness, but in my opinion, the high steroids are going to cause other horrendous medical issues that are going to not show up until later, and along with the

steroid symptoms you are now experiencing, it is NOT worth it. I would get a second opinion on how to control your Chrons disease and I do know that with the correct diet you can help your Chrons

I am pretty sure it's an extremely low carb diet and high fat diet...look into that.

Believe me I'm a walking example of what high steroids create...and yours are pill induced...please please loo into a different way to try to take care of the Chrons. ..the Endocrinologist is right. ..the reason is your Cushing symptoms are pill induced...he can not get a honest cortisol reading when you are taking steroids. Get a second opinion

On how to take care of your Chrons without steroids. Or at least a lot lower doseage. I am thinking totally off the steroids as soon as possible. Please know that everyone here is open and honest and care about your situation and how you are doing. I hope I've helped.

6

Hi,  I too am so sorry that you are having to go through all this.  Who do you see for your Crohns?  Surely they can advise you on how to treat Chrohns without steroids.  I can think of a couple of famous people who have Chrohns but do not have the symptoms of Cushings.  They are awful symptoms and hard to deal with.  I had excessive hair as well.  I agree with the others that you need help to control your Crohns without Steroids, then when your readings are based on your Cortisol not excess Steroids your Endo will be able to help.  I am hoping that there may be one of us who has had the same problem.  Are you on a Crohns help website?  Sorry not to be of more help but as the others have said we, as Cushies are always here for you.  Take care.

7

Thank you all for your replies. I'm gonna speak to my GP again tomorrow as chest pains getting worse & now gagging as face is so swollen.  My BP has come down with the BB's but still tachycardic.  Had DEXA scan to check bones this morning & went to the walk in clinic cos of chest pain & told 3 hour wait so left (couldn't bare the thought of sitting there for 3 hours before I was even seen).  

I am on Humira for my crohns but only had 3 doses & can take 6 months to kick in and cos I've been on steroids a year my gp wants a 4-6 weekly taper cos of the risk of rushing so could still be another 10 mths of steroids & feeling like this. Meanwhile I'm struggling to breathe & feel yukky.  I do feel that Cushing's is not really well known about, especially steroid related Cushing's. I'm on a crohns site & I chat to a lady who's daughter has Cushing's due to steroids & hers developed into adrenal deficiency after the steroids stopped so do feel I should be monitored by an endocrinologist as well as the gastro. All fun & today I just feel blah with it all 😞

8

Please do not give up.  You know your body better than anyone else and Cushing's is so hard to understand.  See your GP again and please tell him all your worries and how scared you are!  You need to be monitored carefully during your withdrawal from the steroids by experts.  There is light at the end of the tunnel and it is not an oncoming train!! Keep us informed please, it is a long haul but we are here to help.  The lady whose daughter as Cushings etc. what path did she follow with her daughter?  Take care.

 

9

Thank you Vicky. I saw my GP again today who wanted me to go to the ER as concerned I have a clot or something up with my lungs or heart. I couldn't get there tonight (I'm a single mum of two children & had my niece here & my parents had made plans) so I'm going in first thing in the morning.  I know reducing the steroids will help with the Cushing's but thus far every time I've reduced my crohns has flared so it's kind of a rock & a hard place right now. Really I probably need admitting then being withdrawn off steroids whilst monitored carefully to make sure I don't go the other way & have adrenal deficiency (like the lady's daughter did) as I've been on such a high dose for so long.  And also keeping my crohns in check. 

I look so awful now it's embarrassing, can't believe how quickly I've blown up. I saw my sister today for first time in a week & even she was shocked at my face & neck! I've just blended into a hunchback. Ugh. 

It's so frustrating that they won't do anything & im just being palmed off by the consultants & there's only so much my gp can do which is why she's sending me to the er as they can do better tests on my heart & lungs.  Really don't want to be stuck in hospital though in the middle of school holidays! Talk about mightn't scenario 😩😩😩

10

Hi,  I think your GP is quite right, sometimes the only way is to go to ER and let them sort you out and check your heart etc.  It is important that your family understand what a trauma you are going through and help you as much as they can.  Don't worry about how you look.  I have also been slim but with the Cushings I ended up a size 22 and had to wear maternity clothes.  I am now back to a size 10!!  Do go to the hospital today, your health is so important especially as a single Mum.  I really hope it goes okay and that ER can help you.  Let us know how you get on and stay strong!

11

Thanks Vicky. Well I've spent all day in the hospital & now back home in bed thoroughly fed up. Initially they thought I had a blood clot in my lungs as the D Dymer blood test came back showing a clot, then they did a chest CT which was normal 🙄 One Dr said my ECG was showing not only tachycardia but that my heart was acting "wobbly" and "not happy" as he put it so he wanted to get an ultrasound of my heart. Then some other Dr came along and said no need for that as it's probably pericarditis (inflammation of the heart) but it also could be Crohns making the D Dymer rise (I was like erm noooooo, I'm on massive dose of steroids & humira to control my crohns so I can assure u it's not). 😡 I kept trying to say about the Cushing's & he said Cushing's doesn't effect the heart (erm I've read otherwise) then I said I'm on high doses of steroids (which also can effect the heart) but nope wouldn't have that either 🙄 His answer. Morphine! Freakin great. The gastros pulled me off morphine in may as was causing tummy issues which I told him about so then said morphine patches (which I used to be on but weaned myself off them as made me whoozy & with kids was rough). So basically drug me up & if not better in 3 days (which he claims technically pericarditis only lasts 3 wks & ive had this 18 days) then go back to my GP & get re referred back to the acute medical assessment team 😖 Meanwhile my chest pain is getting worse, sweating like mad along with the lovely shakes I have in my arms & legs & still struggling to breathe. I've taken morphine & no surprise made no difference so just gonna lay here & hope it quits hurting. 

As for my looks, I hear you! I've gone from being a 9 stone size 12 to a 14 stone size 22. And I've lost nearly an inch in height and my neck has shrunk into my spine now with my big swollen head & humpback 😩 Super sexy lol! I shall no doubt forever remain a single mum. Although right now men are the last thing on my mind - couldn't think of anything worse right now!! 😃😃 

Anyway, thank you for replying to me, it's much appreciated. I hope you're feeling ok today? Xx 

12

OMG I cannot believe that people are so useless when it comes to Cushings! How do they expect you to cope?  I am at a loss to advise you.  If one man said go back after 3 days I guess that is what you will have to do.  Can you ask for a GP home visit or ring the NHS line?  I wish I could help more, feel useless.  I hope that someone else may be able to help on the forum.  Can I ask what region you live in or are you abroad?

13

I'm in the south east of UK. So peed off with it all. Still got chest pain & shortness of breath (aside from all the Cushing's symptoms), and I'm on Humira for my crohns & this could be a side effect of the drug but yet no one seems to think about that either. I got a letter from my gastro today after my GP wrote to them advising about the Cushing's & the need to reduce my steroids  urgently & they bought my appointment forward from 3rd October to 27th September!! Whoop de whoop lol! 

Meanwhile I'll just sit here dripping into oblivion lol... 😂😂 

14

as you say whoopy doo!  I guess it is a start but it is a long time to wait and your Gastro person will not be experienced in Cushings.  If between now and then you are still bad I reckon you should call the NHS line, they may think you need a hospital emergency visit again or an emergency GP visit.  I would have thought that in your situation any one would see you need help especially as a Mum.i am in the South West but maybe there is someone else on the forum who is near you.  Come on you Guys this lady needs our help.  Take care.  Keep in touch.

15

Thank you, I'm waving from the other side of the country to you

Had to take my daughter out for school shoes today & nearly collapsed in the mall! Not fun. Now back in bed. Pain in chest still but it's more middle to right so wondering if it's just my hiatus hernia, still short of breath & all the usual Cushing's symptoms. Idk, I guess I'm an enigma lol... will see how I am tomorrow & call gp for another referral back to amu if necessary 😞

Thank you for all your replies, makes me feel better knowing I'm not the only one out there feeling this crappy xxxx 

16

Hi 

Thank you for your reply, I know the steroids are the root of all evil & ive started bringing myself down on them but it has to be slowly due to the amount of time I've been on them. I've started on Humira injections for the crohns & tomorrow is my 4th dose so hopefully that should kick in as I taper off the pred. 

As for the Cushing's it's just getting worse. I ended up in hospital with an expected PE, turned out to not be in my lungs but my D Dimer result was 700 so a problem "somewhere " they just don't know where. Meanwhile still got major chest pains & shortness of breath but thinking it's all the weight pushing on my lungs from the top of my tummy (I look like Humpty Dumpty) but my heart has thrown a wobbly so GP wants another ECG as can't slow my heart down & hospital have said it's not a happy heart any more & something's got to give sooner than later.. 

it really concerns me that they took 9 years to diagnose you as seems over here there's not many Drs who know about Cushing's either (UK).  are you UK or overseas? I'm sorry to hear they've found another tumour it must be heart breaking. I'm hoping you have some support wherever you may be in the world. 

Can I ask what sort of symptoms you have if it's not too hard to talk about it (fully understand if it is). It's just I'm so symptomatic right now & I know the steroids don't help but every where I've read States I should be under an endocrinologist despite being on steroids to monitor me as i taper yet they want to wait til I'm totally off & im not sure I'll survive that long physically & mentally & I was under impression there was medication to lower your cortisol? 

Anyway, I hope you're feeling ok today & being looked after. Sending love from the UK...