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Advice on Cushings

Posted , 3 users are following.

jackieB2402
jackieB2402

Hi, I am receieving some very strange results and wonder if I may have Cushings, I seem to have a lot of the symptoms.  Back last year I was feeling really ill, I put up with it till March and finally went to see my GP.  My blood tests came back very strange, I suffer uneractive thyroid and my TSH was quite elevated, I was Vit D deficient but in addition to that I have had some really weird Cortisol results.  The first test I had done was in the afternoon and my result was 156, doctor reran it first thing in the morning and it came back at 331, so not below the 300 range but still on the low side.  My levotyroxin was increased and my next blood serum test done at 10am showed cortisol at 885.  I then did a 24 hours urine test which came back at the centre of the range   I then had another serum test which came back at 686, 507 being the top of the reference range.   Can anyone shed any light please as after 4 months of treatment fo rthyroid I feel no better and I am wondering if the underlying issue is my adrenals.

1 like, 6 replies

6 Replies

  • cycliccushings
    cycliccushings jackieB2402

    Posted

    Cyclic Cushing's the test results will be confusing and not match the textbook .You can have really high results on one test and the next one normal or below normal..it took them 9 years to diagnose me cuz in 1989 they did not believe in cyclic cushing's...every cushing's patient has different symptoms..none of us match each other..my blood and urine ..one or the other would be normal and the other sky high. Pituitary tumors can be the size of the top of a straight pen..

    may not be able to see on the MRI. A radiologist saved my life by seeing the stalk was bent suggesting a tumor. Do you have a moonie face, buffalo hump, and have you gained weight? I went from 110 lbs to 276 lbs in 6 months..

    unreal and i was eating baby food and throwing it up. Mood swings, and anger outbursts, fatigue, eyes looked sick, acne all over my face and chest..this was "steroid" acne caused by the excess cortisol in my body. Trunkal obesity..ive had 2 pituitary tumor surgeries ..one in 1989, 2nd one 2016, and tumor is now growing again. I was born with that tumor..i used to ask my mom to go to bed at age 3, my feet quit growing at age 11. Only weighed 89 lbs at high school graduation. Take pictures..show dr pictures of b4 you were sick and now..put them side by side showing dr the difference.

    They may use Nizoral or Ketoconazole to try to stabalize you..that's just a band aid..

    If you have questions feel free to ask..with elevated cortisol...as your tests show..they need to be searching for where tumor is..hopefully the endo will start looking..

    • jackieB2402
      jackieB2402 cycliccushings

      Posted

      I've been ill for a long time, up untill I was 41 I was 9 - 10 stone then I just started piling on weight, I'm now 17 stone aged 46.  Weight is mainly round the middle and chest, 10 inches around my chest now and I have put on 2.5 stone in the past 12 months, in fact I seem to be gaining weight fater now and yes I have the buffalo hump. I feel generally weak and suffer extreme bone pain in my joints and feet, I have the fat red face as well and suffer from over heating  No stretch marks but then I didn't get stretch marks when I was pregnant but have alot of straie.  I've always bruised easily but then maybe this has been going on much longer and its only now the symptoms are making me feel ill that I'm noticing it.  I have thyroid issues as well, so difficult as all auto immune diseases seem to have cross overs re symptoms ie the fatigue, mood swings anxiety, optical migraines, but thyroid meds aren't working.  Fatigue wise I wake up about 7am but then am so tired I go back to sleep till 10 - 11 am (fortunatly I am self employed) I get up and feel really tired, around 4pm - 6pm I can hardly stay awake and then I seem to wake up in the evening, I then cant get to sleep till 12.30 - 1 and then I sleep for a few hours and wake up sweating.  I never used to sweat but now I'm always hot and clammy.  I am seeign an Endo and he did say Cushings when my first blood result came in, but was then confused by the 24 hour urine, he was good though annd asked me to get my GP to redo the blood to see if it was still high and it was.  I am seeing my Endo again this week so will suggesy cyclical cushings.  Thank you ever so much.  Having had the surgery has it made a difference?

  • Guest
    Guest jackieB2402

    Posted

    Sounds like cyclical Cushing hun , my results were very similar to yours you need a Cushing specialist if you have symptoms of Cushing not just any endo sadly good ones are hard to come by good luck 
    • jackieB2402
      jackieB2402 Guest

      Posted

      Thank you so much, my endo seems to be on the ball, he tested my blood, then tested urine, when urine came back normal he ordered a retest of the blood.  He knows there is a problem.  Am seeing him Thurs so will now insist on an MRI. 
  • Guest
    Guest jackieB2402

    Posted

    No point insisting on a mri it could come back clear cause Cushings Tumors are tiny and it could go against you and your dr won’t like it x I had a brain mri (not pituatry ) and it just showed enlarged sinuses they may need to inject dye into veins to locate it x it’s good your endo is on the ball they usually aren’t lol X u need to test at right time if he gives you home tests get a blood sugar home monitor and whenever your blood sugars raised is a good time to test x cause cushings symptoms are confusing especially when cyclic hope this helps 😘

    • jackieB2402
      jackieB2402 Guest

      Posted

      Thats really interestign I will see what he suggests in Thurs, is there anywhere I can fnd a Chushings expert, I did a quick look online and I can see them but only listed in London.  I will travel if I have to but its quite a way to go from Devon smile
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