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Cushing's Syndrome

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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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  • 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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  • 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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  • 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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  • 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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  • Steroid induced Cushing's

    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...

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  • Blood am cortisol results

    Hi there I initially had a blood morning cortisol at 507nmol and that got the endo to give me some tests for Cushings which when I did them I was told they were normal by gp , but when I asked and recieved copies my am blood cortisol was 684nmol this time which is a lot higher than the last one and is...

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  • Adrenal glands

    Has anyone in this formum ever had the situation where a tumour cannot be located?? An has anyone had their adrenal glands removed? Do u lead a normal life following this?

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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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  • Cushings Disease

    I went from building homes, high energy , 119 lbs, to being unable to function normally, crying, depressed and a weight gain to 226lbs in six months, weight gain face , front torso, red moon shaped face (bright red), menses stopped, big buffalo hump , saddle bags on upper back, blood cortisol high, uncontrollable...

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  • Questions to ask GP & "elevated"/"high" test results

    Hello everyone, Background: I am a 36 year old female and in May 2014 I sustained a very serious brain injury alongside a large basal skull fracture & spinal injury. Ever since my accident I have had my therapists/medical professional's constantly comment on my "stress levels". I...

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  • Gutted

    My name is Craig and I have worked for a pharmicutical company for 18 years.In 2004 I was diognosed with FAP.After the tests had been completed the results came back that I had a number of tumours.The most prominent Desmoid had developed in my back and due to discussions was in operable.I take medication...

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  • Please tell me these are normal and not serious

    Hi all, 18 year old female recently been through tons of stress and I mean tons! Yo yo dieting to be honest. Got m cortisol levels checked after a really REALLY stressful time - college exams, granny passed away, dog died, music exams . I am also on the birth control pill. My morning cortisol was 920....

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  • Advice needed

    So post pituitary surgery, does any of u good people have any advice/tips/etc? It would be mucho appreciated! And your Not allowed to sneeze.. how do you not sneeze? Thank you, please in advance

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