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Cushing Disease

Posted , 4 users are following.

Ace0310
Ace0310

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 waiting to hear back from them. My tumour is said to be a macro adenoma which is measuring 17 x 13 x 9 mm. 

I have also been referred to a clinical genetics department ( does anyone know what this is??) all the letter states is that I have been referred to them due to having developed a pituitary tumour at a young age and I also had a neuroendocrine tumour on my appendix when I had it removed in May, 

I was supposed to be put on some medication in the interim towards my operation but I am no longer allowed to have it due to the fact you have to have frequent 24 hour urine tests and it wouldn't be practical as I am still working, which is rubbish as it means I have no hope of the dreaded Cushing disease symptoms decreasing at least a little bit. I feel like I am gradually getting worse everything is aching, I'm tired all the time and my weight gain and mood is just drastically getting worse. 

I know I mentioned before the stomach problems but I haven't come across any cases on the internet or anyone else who have suffered with stomach issues and cushings? I have constant cramps but if I don't eat anything things are a little easier! 

anyone who can help or offer some advise on how I deal with all this rubbish would be appreciated!! I am currently in training at work too just recently failed an exam to much on my mind! 

0 likes, 6 replies

6 Replies

  • vicky61456
    vicky61456 Ace0310

    Posted

    Hi.  I am sorry that you missed the replies to you re stomach problems, there were several.  As I said I suffer from Diverticular Disease and have stomach cramps sometimes.  I take BUSCOPAN which stops the cramps.  You should see your GP about this as he/she may be able to advise you.  I will look into the Clinical Genetics Department.  Make sure you read all the replies as there were a couple about cramps.  Don't give up we are all behind you!

     

  • vicky61456
    vicky61456 Ace0310

    Posted

    Have looked up the Clinical Genetics Department and they try to solve symptoms that could have been gentically caused, e.g. in family history etc.  They sound a brilliant team and I am sure they will help a lot.  Good luck.
  • Guest
    Guest Ace0310

    Posted

    They are probably going to test you for MEN 1 (multiple endocrine neoplasia ) or something similar because you've had 2 endocrine tumours at a young age . Look it up high cortisol can cause perforation of the bowel so it is common for gastro stuff I'm so glad your getting treated so quickly though x good luck x 

    • Ace0310
      Ace0310 Guest

      Posted

      Hi! 

      That makes a lot of sense, because not only have I had a tumour on my appendix and one of my pituitary gland but they also suspect that my adrenal glands may have one too however I've had an octeriode scan so surely that would show it up? 

      Fingers crossed I get some more information this week! I can't deal with it any longer, and although I should be pretty grateful after hearing how long some people have had to wait for diagnosis it is still incredibly frustrating. 

      Thanks for the advise, after looking into MEN1 and MEN2 it does seem pretty likely thats why I have been referred. 

  • vicky61456
    vicky61456 Ace0310

    Posted

    Thanks to Mails!  I knew there was an inherited condition but couldnt remember the name.  MEN1 is definitely a possibility.  Good Luck.
  • courtnay26
    courtnay26 Ace0310

    Posted

    I had gallstones, before i have Cushings

    So yes ,digestive can be a result of pituitary problems

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