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Cushing's Syndrome

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  • Vertigo

    Im 5 months out from surgery. Im reducing steroid. Down to 7.5mg. I have bad muscle aches but everything seems to be going well until this morning. Woke up with bad vertigo. Having it all day. Went to doctor but they have no idea. Anyone else experience this?

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  • More Tests!

    Evening all!  So another update on what seems to be something that has been going on forever, I recently moved from Nottingham to Birmingham so had to change consultants and have a fresh appointment over here just to confirm what we already know! Cushing disease caused by a macro pituitary tumour....

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  • Cushing ‘s Syndrome

    My Son has been seeing a doctor about 8 months & has been diagnosed with Cushing’s Syndrome.  He has been on koralym & still doesn’t feel any better.  Cannot stay awake!  He is getting very frustrated as he is not able to work.  Does anyone know if he would be eligible for...

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  • 4 years on from Cushings op and still suffering problems!

    My wife was diagnosed with Cushings 4 years ago and had op to remove benign pituitary gland tumour. Initial progress following op was good - weight loss, disappearance of hump and excess body hair etc. Currently on 20mg hydrocortisone: 10mg on waking, 5mg midday, 5mg evening plus 100mg daily of levothyroxene....

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  • Weight loss after surgery

    I have just recently been diagnosed and they are almost positive that its a tumor in my pituitary gland but an MRI will confirm or deny. I'm curious about anyone's weight loss experiences after the removal of the tumor? That has been the hardest thing for me to deal with truthfully.

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  • Could I Have Cushing Syndrome?

    Hello all i have been in and out of the doctors lately and no one has figured out my problems. 4 years ago i started having facial flushing aswell as acne. My stomach started to have constant pain with diarhhea/constapitstion. 2 years ago the flushing spread to my chest knees and shoulders. I started...

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  • Normal cortisol levels?

    Hi again, I previously posted a discussion talking about whether I should be tested for Cushing's based on the symptoms I had stated (in that discussion) that I am experiencing.  I received my blood test results and my serum cortisol levels came back normal. I was also tested for a few other...

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  • Should I be tested for cushings? If not what should I do?

    Hi all I'm new here I just wanted some opinions on whether I should ask to be tested for cushings, especially since it's quite a rare thing to be diagnosed with.  So I'll tell you a little about myself, I'm 16 and 73kg, 5'0 - 5'2 in height, I am usually an active person...

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  • Cushings- put on hold

    For so many of us with Cushing's- Though I'm still undiagnosed We have to wait for a doctor to clue in Before we get diagnosed. I mean if i didn't spend hours researching about health, i would have no idea what is going on right now Right now, i can hardly move my neck because of this...

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  • Cushing Disease

    Hi All,  Sorry but yet again another rant and a few questions I'm hoping some of you may be able to answer for me! I have finally received some more news about going forward for my surgery to have my tumour removed... I'm being referred to a specialist in Birmingham so I'm currently...

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  • me again!

    Hi All Me again, coming in for yet another rant!  Still really suffering with stomach problems, anything I eat now no matter how little is causing me pain (although I have found yoghurt is ok). I get instant wind/cramps and Its becoming so painful and annoying!  I have taken BUSCOPAN, Tums...

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  • Tapering off Cortef

    I am interested in hearing about your tapering experience. Im under the 20mg that our body normally makes. Im at 12.5 mg a day. Im reducing 2.5 mg every two weeks. I do get a little light headed and flu like systoms each time I reduce but that levels out in the next two weeks. Every two weeks when...

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  • Metformin

    Hey Cushies. Just a quick one. I’ve been put on metformin for type 2 diabetes (courtesy of the Cushing’s) & my endiocrinologist is reducing the steroids that I’m on for the Crohn’s. Since starting them my stomach has been so bad. Not sure if it’s the metformin or the steroid reduction & crohns...

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  • Symptom check? Help!

    Hi Guys, Totally new to all this stuff so bear with me if this isn’t the correct way to go about getting some answers. I apologise in advance for the essay. Basically, I have been feeling pretty miserable for quite some time now with a range of symptoms that I just cannot imagine to be “normal”. I...

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  • Cushing Disease

    Hi Everyone,  First ever time I have ever done this, so if its rubbish then I apologise way in advance. I have recently been diagnosed with Cushing Disease after months and months of tests caused by a tumour in my pituitary gland and waiting for a phone call to discuss when I shall be having surgery,...

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  • Ongoing Medical Condition for 3 years, Still No Diagnosis

    Wondering if someone has ever had/seen a condition with the following symptoms. I’ve been unable to get a diagnosis from multiple doctors over the last 3 years, so thought I’d ask here: -Always Thirsty (Water does not help/makes problem worse) -Inability to work out (Sweating makes problem worse)  -Tension...

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  • Body aches

    I had surgery 3 mo ago. Tapering now 10mg/5mg. Body aches are intense. Others have this? How long approx does it last? I look like im 100 trying to stand. Asked my endo and shes not giving me a direct answer. I dont think she knows. I am her 1st cushing patient.

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  • Help needed please ladies!!

    Hey lovely ladies (and any men out there) Me again! Well I finally got to see an endocrinologist last week. He was actually really nice & didn’t fob me off as I feared he may. He confirmed I have Cushing’s syndrome & as suspected believes it was all steroid related.  He has put me on a...

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  • Mood swings

    One thing I've hated about this and found hard is the emotional problems . I go from crying desperately one minute , to wanting to stab someone in the throat if they even look at me the wrong way I fly if the handle VERY easily .Then I have the periods where I feel great but behave bizzare , hyper...

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  • Right sided numbness

    Hi folks basically been in my bed for 4 days straight cause of extreme fatigue i have right sided numbness (right face right arm leg ) tingling face twitches eye lip under eye . I really don't feel good I had right sided numbness before when my spacial awareness went of and had a continual headache...

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  • Help!

    Hello everyone, I'm totally new to this and have never really been in a discussion board but here goes... I have been feeling sick for years now. I've had morning nausea for about 4 years now along with feeling exhausted no matter how little or how much sleep I get, feeling faint, terrible...

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  • YAyyyy seem to be getting somewhere

    Hiya lovely ladies! , I seem to actually be getting somewhere at last although a long road still I suspect . I emailed my London doc after I was told by the idiot endocrinologist here that everything was fine . He stated he was very concerned about my morning elavated cortisol and said I should have...

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  • List of tried and tested Endocrinologists worldwide

    Hi all.  I wondered whether with so many new friends joining the Forum whether it would be possible to make a list of Endocrinologists world wide that us Cushies have seen and can recommend.  Let me know what you all think and how do I do it!!!  

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  • Intermittent Moon Face with Cushing's

    If anyone will listen if greatly appreciate it. I've been having this issue for almost the year. My symptoms have been intermittent ( muscle wasting, moon face, brain fog, flushing sensation, bad anxiety). I went to the endo and tested but I think I should have waited for a day where my face was...

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  • Hey cushies

    Hey Cushie friends Guess who just got out of the hospital (again!) After my Er visit I was told to go back on Tuesday for that cardio review (as I'm sure you remember my HR was 157 & they hooked me up to heart monitors). So I went in expecting to have an appointment with a cardiologist at 10am...

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  • Cushing Syndrome

    My name is Nikki I was just 19 when I was diagnosed with Cushings. I was always very skinny growing up and in the matter of a year I gained over 100lbs. My parents were worried that something was wrong, and I just thought that I was getting fat. I had a lump on the back of my neck (referred to as a huntchback)...

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  • Cushing's for lifetime?!

    Hi all! I'm happy that I found this group as I hope there's people who can understand me and we can share experiences with each other. Let me introduce myself. I'm 29 yrs old mum to a gorgeous 13 maths old little girl and one been diagnosed with Cushing's disease when I was 21. But my...

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  • Amenorrhea for 2 years after having 4 regular periods

    this is going to be a longgggg post so I need a willing audience first... looking for as much help/advice as I can get, particularly if you are interested in female hormones or endocrinology. I will post the details once I know atleast someone will be reading it! Thanks in advance  Btw - 17 year...

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  • Cortisol Levels

    Does anyone have normal cortisol levels but still have other Cushing symptoms? I have irregular periods, the fatty bump behind my neck, stinging thigh pain that comes and goes, low blood pressure, weight gain in the middle, and now I feel like my face is puffy but not sure if it's just because I've...

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  • Update from previous post

    Hi to all my new Cushie friends I'm starting a new post as the last one was regarding steroids & Cushing's diagnosis so just a quick update from  me. I ended up back in hospital again yesterday after I noticed more swelling around my collar bone (I already have severe swelling of face...

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  • Should I trade Cushings for Addisons

    I was diagnosed with Cushings Disease in Sept 2009 in Oct 2009 after a 15 hour surgery a macro adnoma was removed from my pituitary gland. Surgical cure that lasted close to 5 years. second tumor not so convenient....inoperable. tried (at that time) the experimental focused linear radiation. The radiation...

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

    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...

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  • Advice on coping with constant pain

    i have been having test, after test, after test now for over six years.  Yes SIX years.  This is due to what the consultants refer to as false positive and false negative results.  Many of these are contradictory and need doing again and again.  They keep telling me I DEFINITELY have...

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  • Newly Diagnosed with Cushing Syndrome

    I Am 38 yrs old. I was told in July 2014 that i had Cushing Syndrome. I had been suffering with High Blood Pressure since 2010. I was put on medication but suffered bad headaches so that started the cycle of trying different tablets to find a suitable one. The fatigue, muscle weakness and depression...

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