4 years on from Cushings op and still suffering problems!

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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. Symptoms getting worse: constant fatigue, insomnia etc. Also diagnosed with diabetes insipidus. Sometimes wakes up in middle of night thinking she might have to ask me to take her to A&E she feels so unwell! Occasionally suffers from small red spots on trunk which may be related. Interestingly she seems to go through cycles of fatigue and then feeling better throughout the day. Now suffers from chronic earache. Coffee gives her a temporary boost. She's also developed a taste for sweet things like chocolate and Coca-Cola which she hated in the past (our children weren't allowed to drink it). The Endocrinologist wants her to take a day curve but whether that or Christmas comes first is anyone's guess!

Does anyone else suffer similar symptoms after having the op?


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3 Replies

  • Posted

    Hi, I had my op 4 years ago and am in the same position as your wife.  10,5,5 of Cortisone, thyroxine and Desmopressin for Diabetes Insipidus.  I am feeling a lot better but it has taken a long time.  I too suffer from insomnia and Restless Legs.  I saw my Endo about 3 months ago and she has says I must stay on all the tablets for now.  I know other people who are no lonmger on Steroids.  I have an MRI in Deember and blood tests so it will be interesting to see if the tumour has come back.  I have good days and bad days when I just feel awful.  Please say hello to her for me, we are obviously similar in our stage of progression!
  • Posted

    Hi my names Amanda I am 54 and got diagnosed in 2011 with what the Endo called a classic cushnoid I had every symptom you could of had. I had a piturity tumour removed the same year through my nose. After a few visits to see my endo he said that I would be back to my old self max in a year, on my discharge visit I could not walk without a walking stick as my muscles had wasted so badly as before I had the Cushing's I was only 7st 4lbs and went to 16 stone in less than a year my body felt like it was in an old divers suit and I ended up in a wheelchair, when I walked into his office with my stick he looked disgusted at me and asked why I needed it I felt like wrapping it round his head. I got discharged saying I had probably got fibromyalgia as a fob off. A year later after complaining my nose didn't feel right when I breathed in they discovered when I had the tumour out they left a big hole in my nose which I had to have a nasal septum operation to repair it. My immune system is so bad I'm constantly getting adreanal crisis one of which I nearly died, I have had to be hospitalised with pneumonia three times. I am under a sleep clinic as I forgot what it was like to sleep then a few months later my body did a total reverse and I was sleeping everyday for over16hrs a day and the only way I would wake up was someone waking me. My food intake this year has been nearly zero and I ended up last month being rushed into A&E with acute pancreatitis. I have been diagnosed also having Myopathy derived by the Cushing's. I can now only walk short distances before I'm beat which I find really frustrating as I was before the Cushing a really active fun loving person with loads of get up and go and now I can't even hardly get out the house. I have seen numourous specialists which all keep pointing the finger to Cushing's damage. I just would like to see a light at the end of this tunnel but with me I keep falling at every hurdle. I know it's hard because they say well every bodies body is different so we can only write what position we are in within our own body. I hope you will be one of those lucky ones who you do hear of making a full recovery and getting your life back before Cushing's. Take care and if you want to chat about anything I'm hear for you ok ??

  • Posted

    Reading your post. You didnt mention if your wife tried reducing below the 20mg a day? Why after 4 years is she still taking?

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