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What happens next. Son with probable Cushings.

Posted , 4 users are following.

MumofA
MumofA

My son is now 29, we have suspected he has Cushings since he was 8. Unexpected weight gain, but only around his torso and on his face, he now weighs more that 330lb 23 stone (our scales only go that high), he has the buffalo hump, the red stretch marks and the temper. He had a blood test done 8 or so years ago in the morning which we were told showed in range. Knowing what I know now about 'in range' I should have asked for the copy of the results. Up to date knowledge now says that the morning blood test is useless, that it should be an evening one.

Well what has happened was that being Hypothyroid myself and having to self test and self treat (those 'in range' criterior) I knew how to get my sons 4 point adrenal saliva test done privately, I was mainly testing him to try and find out why he wasn't sleeping. Wired and tired all the time. The results came back, it took a couple of weeks to figure out what was nagging me, it was his daily cortisol level, it was way too high, well out of range. So I've gone to the doctors with the results, the doc said she would refer him to an Endo based on the results. A letter came today saying they had to do the usual thyroid, diabetes, liver function, prolactin etc tests before he can be  reffered to an endo.

We have researched this loads in the past, and understand in a fairly well edicated way what is going to happen. My main question now is, how long is this going to take? Are we talking weeks (not likely with the NHS), Months, years? Is there a ballpark figure in the UK? 

0 likes, 4 replies

4 Replies

  • andrew808
    andrew808 MumofA

    Posted

    all they need is a day curve blood test where they take blood from him 5 times during the day and that should be a good indicator where he stands , probably get seen in about 8 weeks
  • deb3313
    deb3313 MumofA

    Posted

    Hi Mum of A, I can only respond with my experience of cushing's. I am not a doctor. Any everyone has different experiences smile

    Firstly. I dont understand why they have to do all the tests before he see's the Endocrinologist as thats exactly what the endo will do when they see him. They do Baseline tests to get their own results.

    Secondly. It takes months of testing to get a solid diagnosis for cushings.

    I had a 24 hr urine, Morning cortisol and midnight saliva test first. The results then sent me to do an overnight dexamethazone suppression test. They then waited one month and i repeated all these tests again. Same again the next month. After the third month i was sent for an MRI pituitary. These results then sent me for a more invasive test called an Inferior Petrosal Sinus Test. Two weeks after that i saw a Neurology surgeon. And 4 weeks later i had my pituitary gland removed ( note my surgeon had two weeks holidays in the 4 weeks between my visit and surgery lol ).

    So from first visit to the endocrinologist til the time of surgery.... Was a total of 6 months.

    I hope thats helpful info for you. If after all the testing they find he has pituitary involvment, i can share my surgery info with you so he knows what to expect smile

    • vicky61456
      vicky61456 deb3313

      Posted

      Hi Deb,

      I had all my tests done by my GP before I saw my new endo having had an initial tentative dignosis from my old Endo who after seeing me emigrated to Australia!  As you say all our experiences are different.  I have to say that through it all it has been my GP who has been the most help and support through the months after my op.  Lets hope that Mom gets a dignosis soon.

  • vicky61456
    vicky61456 MumofA

    Posted

    Hi,  It is the diagnosis that really takes the time.  You really have to patient, get your son to do all the tests.  Once all those are through you shouldn't have to wait that long for the appointment with the Endocrinologist.  To be honest, they need the results of every test before they can do anything.  He may be offered an MRI to see if there is a tumour on the Pituitary Gland.  Be patient, they are not holding you up deliberately.  Let us know how your son progresses.  You must be worried too but need to keep calm.  You can always rant and rave at us! I hope some others in the group will answer you too.
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