newly diagnosed with cushings syndrome

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Hi I was diagnosed Yesterday and I have a tumor on my left adrenal gland which they want to remove as soon as possible but I have no idea what to expect??? If they do keyhole surgery they said I'd be in hospital 2-3 days but how soon can I go back to work? What happens after? I'm a bit scared, im a single parent and I need to be fully functioning... Any thoughts or advice would be greatfully received x

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  • Posted

    Hi caroline, everybody is different and it depends on how much this illness has 'ravaged' you. I too had a left adrenal gland tumour removed in sep 2014. I stayed in hospital for 4 days after the surgery and was in a discomfort until i had my staples out 10 days later. I was still very tender for a couple of weeks after this. I was in quite a bad way before i had my surgery and i can honestly say it was a good few months before i was feeling 'ok its mainly the tiredness. I hope iv been of some help. I wish you all the best with your surgery and your recovery xx

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    • Posted

      Thanks Caroline, to be honest I feel ok, yes tired but its the other symtons that made me see the Dr (hair loss and extra hair, weight gain, high bp etc) They have said they are hoping to do keyhole surgery but I haven't seen the surgeons yet... did your right gland start working again? xx

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    • Posted

      No unfortunately it never 'woke' up sad The consultant reckons i had the tumour for 10 years so you can imagine the damage it done. Im on Hydrocortisone 20mg a day which is split into 10mg first thing in the morning, 5mg 11am and 5mg at around 4pm. Its a pain having to take - and remember the medication but its a necessary evil. I also had the keyhole surgery, iv got 4 scars that dont look too bad. Have you been given a time frame of when they would be doing the surgery? X

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      Oh thats not good, did your other symptoms improve though? I long for thicker hair on my head and not on my neck! lol I got my diagnosis on Tuesday and she said she wanted me to have the op as soon as possible so I'm waiting for an appointment to see the surgeon and then hopefully I'll know more, she has proscibed me metyrapone in the meantime to lower my levels... I just don't know what to expect :s xx

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    • Posted

      Yeah i was offered that medication but said no because i knew they would have left me longer.. it took ages for my hair to thicken up, about 7 months for my face and 'hump' to go down and around that time for my shin to stop being thin xxx

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    • Posted

      Oh that's interesting she said she wanted me to have it as lower levels would make me heal quicker... But now I'm struggling to get the prescription from my gp! Did you have weight gain before and did it go down after? Sorry about all the questions but you really are making me feel better... Did you tell people when you were diagnosed? Xx

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    • Posted

      Yes i was told by one consultant it could help me and then another suggested i said no as he believed if i responded well on it that i wouldn't be rushed for the surgery? I was at the end of my tether and was struggling to cope, i just wanted the surgery.

      A couple of years before I was diagnosed i went on a diet as i had the high blood pressure and thought it would help. I lost 2 stone but then continued to stick to it. Im so glad i did and it was a struggle, i was always hungry lol. I only put on 2 stone but it would have been a lot worse if i would have allowed myself to listen to my hunger! Ha

      after my surgery i carried on with my calorie counting and after swelling up after the operation and coz my body was getting used to the lower dose of cortisol in my body, the weight literally dropped off. It kept coming off without me 'dieting' as i just completely lost my appetite. I now weigh what i did when i was 15!

      Yes i told people, i was glad there was a reason i was going through what i was and that it wasnt in my mind. Im glad to be of help because i have been in your situation and i know how you feel. Il answer any questions you have xxx

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    • Posted

      I've had high bp for about 14 years and have to take 3 types of pills every day since having pre-eclampsia 8 yrs ago when my daughter was born 3months early... They could never find a reason for it and I even mentioned cushings to my gp a couple of years ago but was told I wouldn't have it but now it makes me wonder...

      How long after the op did you go back to work? I like to think I'm quite resilient but it's just all so unknown to me, I'm not sure if there's things I should ask in general or when I see the surgeon... Any suggestions would be greatly received!

      I don't think people think I'm I'll just over weight with a red face, thinning hair and puffy ankles lol xx

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