9 months taken to diagnose Cushings Syndrome

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my mum aged 70 was finally diagnosed with cushings after 9 months of various tests for very high blood pressure which was unresponsive to many different medications.she had large tumours on both her adrenal glands which were removed by surgery.she is recovering now very slowly. after being a very active pensioner she is finding her life very tiring and has no energy to do the smallest of tasks.she is covered with large bruises that bleed easily when knocked.her blood pressure is now stable, but she has lost a lot of wieght due to bowel problems.hopefully life will improve as surgery was only 4 months ago.

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  • Posted

    Hi,I hope your mum is feeling better by now.I first showed symptoms of Cushings disease in 1992,but it wasn't recognised,despite having adrenal scans and 24 hour urine collections.For a while symptoms eased a little,and I thought I was just going to have to cope with the way I felt.I had a 2 year old son at this time.Symptoms reared their ugly heads again at the end of 1996,with severe depression,irregular periods,abdominal stretch marks,severe sweating,moonface etc etc.A diagnosis was finally made in June 1997,after me pleading to be seen quickly by the specialist I had been referred to.The afternoon of the day she received my letter,she called me in,and immediately recognised the Cushings signs just by looking at me.I had the pituitary tumour causing the problems removed in December of that year.So it took 5 years from the onset of symptoms.
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    • Posted

      Hi Gill

      My case seems similar to yours. I currently have a two and half year old and have just had bloods to say I have it. Did your condition happen before having your child? Did it get worse? I had a year and half of help but I was coping (through drugs for raised androgen levels-thought pcos) and counciling for depression. But it's always been there. Can symptoms go up and down? Why?

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    • Posted

      Hi Georgina,

      I don't think I had the symptoms before having my son.He was about 2 when I started getting spots up my arms and on my scalp,and I was losing hair.I was referred to a general specialist,not endocrinologist,and he arranged for me to have an adrenal scan,after taking a week or so of some medication (which I can't remember now).On the day for my adrenal scan to take place, my Mum suddenly died.I eventually had the scan done about a week later.I felt when I next saw the specialist,that my symptoms had not got any worse,and was having to cope with so much more after my Mum's death,so nothing else was done.Until 4-5 years later,when everything got so much worse.It started again with depression,then the physical symptoms followed.I was putting on weight,so I tried to diet.I lost some weight,but my upper body was getting bigger (like American footballers shoulders!),and I had horrible red stretchmarks appearing on my tummy.My face became rounder,and the sweating was unbearable.As I said before,I was lucky enough to meet an Endocrinologist who had previously worked in Oxford,where they specialised in these sort of things.I was eventually sent to Oxford for my tumour to be removed,as it had to be located by CT scan alone,as I was unable to have an MRI (I have a metal filter to stop blood clot movement,and the scan could have dislodged),and I was and am on Warfarin,so that had to be controlled before any surgery.Hope this helps in some way.Gill

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    • Posted

      Hi

      I fell pregnant with my son but before having him I went to Dr on different occasions about weight. I wanted to loose it before getting married but struggled. I was never over weight but hit 26 and started to get bigger. I also had thinning hair but my hair most of my life has been thin. Dr did test for pcos and from bloods and symptoms came to conclusion it's pcos. I had no cysts. Advice, come back if I can not have babies.

      Consequently I fell pregnant after a month of marriage! Pregnancy was ok but sadly I lost my mother at 14 weeks. I felt I couldn't grieve as I didn't want my hormones to affect my son.

      Birth was complicated and I struggled to bond with my Son. I couldn't breast feed due to him being tongue tied. I felt the loss of my mum then. I felt very low. My depression was so bad I wanted to die and was extremely suicidal. I lost my hair but like a man, had no period since birth, lots of weight and tired all the time. I had red face, bruised easy etc.

      Dr said it was postnatal depression, and grief from mother. Solution was anti depression tAblets- which I refused. I could feel my d depression being cycle like. To me this was hormonal. I had to get Dr but got no where. So went private to gyno. He thought pcos still but was confused and thought issues with liver. Liver Dr said no problem and solution is loose weight! Hmmmm.

      Two years down rd, I asked to see endocrinologist. He diagnosed Cushing syndrome on symptoms (I thought it maybe from research but didn't suggest as wanted his opinion). just done week dexamethasone suppression Test which suggest Cushing. Next is mri scan. Dr thinks pituitary as all hormones out of sink, including androgen levels etc.

      I feel awful, extremely tired. But depression has eased. I work full time and look after my two year old. I worry that treatment will not help or make it worse. I want to work. But life balance is over! I long for bed, I get up tired. I hate how I look! Endless....

      How do you feel now?

      It's good to know I'm not alone. X

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    • Posted

      Oh Georgina,I'm so sorry you're going through all this.I know I've been through it,and know how tough it was,but hate to hear someone else going through it.People don't realise what you're going through,or don't understand it if you explain.Let's face it,the endocrine system is very complicated.My surgery to remove my pituitary tumour was successful,but that also means having to take replacement steroids etc for life after surgery.I have had complications,especially having other medical problems.I have to be honest,in recent years some of my problems weren't dealt with properly,so I was overlooked until I felt really unwell.I don't want to make you feel worse than you already do,but please ask your specialist about your thyroid gland being affected,even years on,and also whether your growth hormone production has been affected (following surgery,that is).These were overlooked with me.

      I do apologise,but I hope you understand that I must be truthful with you.Another lady,Vicky,on this site is very good to 'speak' to.I found her when she put in a comment 'extra symptoms of Cushings'.Try googling that.

      Please keep in touch.We are rare,but very supportive.Keep your chin up.Gill

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    • Posted

      Hi Georgina,

      At the top of the page/screen,you'll see 'search patient.info'.If you put in vicky61456,that should find her.I've quickly sent a message to her about you,as I think she would be helpful.Hope that was OK.Gill

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    • Posted

      Hi

      Thank you. Feeling a bit better this morning but due to going to bed at 8! Again.

      I hope you have a good day.

      Georgie

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