Suspected Cushings?

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In June I went to my GP with a number of issues who refered me to an endocrinologist, I had this appointment two days ago and mentioned the following issues ive been having for approx 1 year (apologies for tmi) 

-Hot and sweating all the time all over body - cant cool down with air, water, layers etc

-Gained a stone and a half in two months so changed to paleo diet and exercising daily - no weight lost

-Round and fat face with red rash

-Dark hair everywhere on body (upper lip and rest of face) , regrows straight after been plucked/shaved

-Constant lower back pain - predominantly left side

-Inwardly arched back (always asked why im sticking my stomach out although not doing it intentionally)

-Irregular menstruation - prolonged periods of bleeding (max 10 weeks) - extremely heavy with large clots

-Constant abdominal bloating

-Insect bites/cuts I've had for weeks not healing and leaving awful purple scars

-Sore feet - plantar fasciitis

-Intolerance to bright lights or daylight - always have to wear sunglasses (even when dull or dark)

-Headaches in specific points on forehead

-Burning calves

-Tiredness during day but struggle to sleep at night - can sleep for 12 hours

-Stretch marks deep purple all over stomach, sides, thighs

-Lump on back of neck that increases and decreases in size, feels like a knot that needs working out 

- according to partner I am constantly irritable and lose my temper over insignificant things 

After telling the endo all of this he mentioned cushings, endometriosis and early menopause, I then had blood taken to test a number of hormones by the looks of it and on monday I am due to do a 48 hour urine test. Does anyone have any advice on whether the doctors suspicions may be correct or if theres anything else it could be? I am only 21 so getting slightly concerned!

thanks in advance! 

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6 Replies

  • Posted

    Sounds like you have a good gp and Endo, are you in the uk, A lot of us in the uk have had to fight for a cushings Diagnosis and the correct testing, it sounds like cushings to me x
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  • Posted

    Hi sophiep35,

    The symptoms you have mentioned sound a lot like Cushings to me. Obviously im not a doctor but what you have described certainly fits the 'Criteria'!

    Usually what follows the 2 day urine test is the 48 hr Dextramethisone test IF it comes back there's something in your urine. Mine urine came back 'slightly raised' but they didnt bother following it up until other things started to happen so if your not happy with the results, push it further!

    I wish you all the best and don't give up or be fobbed off xx

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  • Posted

    HiSophie, Poor you but as said youre so lucky to have a good GP and Endo.  I agree that some of your symtoms sound lCushings but they al sound a t like Polycystic Ovaries.  I wish you all the best and please let us know howyou get on.
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  • Posted

    Hi Sophie , I have an appointment on Monday with an encronolist which I'm scrared about. I have had symptoms for about 17 years, it started off with my weight going up 6 stone in one year wen I hadn't changed my eating patterns . Then I started getting depressed and then some days manic. My g.p sent me to a psychiatrist who diagnosed me with bipolar . Over the years I have had psychotic episodes And been in and out f mental hospitals. Then I started sweating all the time so bad I have to bath twice a day.then I had the same thing as you in yr feet( I won't even attempt to spell it lol ) my weight is distrusted around my waist and hips and chest and my legs and arms look a lot smaller. I have high blood pressure, in my late twenties I had lost a lot of my hair and over the last ten years I have facial hair, really thick coarse black hair. My concentration has always been bad and a dr diagnosed me with ADD as it got worse over the years.i have spent he last 5 years in my bed as I feel too weak to walk around. I have back ache as soon as I stand lungs are bad but cause I took codiene for ten years it masked how bad my breathing was until I came off them a few weeks ago now I can't lye irritable and bat tempered before these symptoms started I was so layed back.i have stretch marks all over my belly, arms, legs and hips. I am constantly thirsty and wee often. I was told I had pre diabetes even though I hardly eat. My cholesterol is very high. I have an in growing hair that's turned into an abscess I've had it for 14 years it's operated on 5 times but it never clears up even with anti biotics.i bruise so easy. After being told I had bipolar for years they now say its border line personality disorder. My blood test at g.p was weird one dr said I had menopause other said no it's polisistic ovaries then another one said he thinks it cushings .my periods stopped 18 months ago and even though I was in a relationship lost my sex drive and havnt regained it after 6 awake till 5 a.m and then up at 9a.m. I have a bit more energy since I started my ADD meds as they are amphetimine based but I just feel so week I still stay in my bed all day. I feel so low but I'm hoping they can help me n Monday x

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    • Posted

      Hi Katt, You certainly have had a rough time.  Most GPs never get to see a Cushingsd patient as we are so rare.  You are lucky to have been referred to tan Endo.  My Gp and I tried for years to find a diagnosis based on the symptoms I had.  Then one day I watched Doc Martin on the tv and he said that the 2 symptoms which are very improtant are the ones women especially are too afraid to mention.  Excessive sweating and excessive hair growth on face etc.  Once I mentioned that to  my wonderful GP I was tested and eventually after more tests got my diagnosis.  So don't be embarassed to mention those symptoms along with the others.  Either take someone with you as it is a lot to take in and if possible write a list of all your symptoms otherwise you might forget them.  Good l uck and keep in touch as to how you get on.

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    • Posted

      Hi Vicky ,this is the third time I've tried to answer you my I pad wasn't charging properly so in the middle of each reply it just died lol thankyou for answering me, it's good to know I'm not alone out at Durham hospital tomorrow so hopefully they might give me some indication of wots wrong with me.ive spent the last five years in bed leaving only for hospital appointments . I'm going alone tomorrow as I've seemed to alienate all my friends and family with my mood swings and irratibility . I'm just so fed up I can't even wear make up now cause it just slides off with sweat as soon as I put it on. Are you from uk ? I live near Durham north east England and I had never heard of cushiness before now. I tried to tell my psychiatric nurse how series it is but she said she had heard of animals getting it but didn't know exactly wot it entailed . I'm not looking forward to all the tests but hey if it means I finally get an answer I'll go threw them.i cry all day whether it's a good or bad thing that's happening, my emotions are all over the place hence the different psychiatric diagnoses .my eye sight is getting so bad now but because I have cerabella ataxia which effects my motor neurone I just put my bone aches down to that . It's an inherited gene my whole family have it but they never got bad till well into their fifties and I'm only 45. I went to my g.p last year cause my hands were so sore and couldn't bend my thumb and he said it was arthritis which I said it's not I think it's trigger finger as I had looked it up on google . He got really angry cause I dared to question his dr skills and actually barred me from the surgery for a week. So after then I saw another dr and within two minutes diagnosed trigger finger , I had injections and now their fine so I don't have much faith in Drs . Just hope this endocrinologist knows his stuff. I have written my symptoms down like you suggested🙂I wouldn't have thought of doing that so thankyou. I will let you know wen I get back tomorrow how things have gone and thankyou once again. Stay safe x

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