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Trying to figure out if my daughter has Cushings?

Posted , 4 users are following.

pamela00046
pamela00046

I wanted to get advice from your group on whether or not my daughter has Cushings.  I want to give you a little background of her history. She is currently 18 years old. When she was 11 she was diagnosed  with Tourette's Syndrome. TS's. cause vocal an motor tics. At age 14 she developed a horrible rash all over her body that the doctors just said was eczema. She also started having frequent episodes of vomiting the doctors just said it was Cyclic vomiting syndrome a migraine variant. She also started developing stretch marks on her abdomen, thighs and breast even though she was losing weight and had stopped growing. She started to develop anxiety and depression which was blamed on the Tourette's Syndrome. She went to therapy and it didn't help so they sent her to a psychiatrist who prescribed Prozac. Her rash that she had for over a year cleared up completely within a few weeks. Light Bulb Moment! It was a stress rash caused by to much cortisol. The doctors agreed and there was no more discussion of cortisol. Her depression and anxiety continued and she gained 60 pounds in 2 years. Her face became moon shaped and the majority of her weight is carried in her abdomen and breast area. She reached the maxiumun dose of Prozac in June and her symptoms have gotten worse. She is extremely exhausted and can sleep 20 hours a day if you would let her. She is suffering from cognitive issues. She has brain fog and has trouble findings words and stumbles when she speaks. She has developed a buffalo hump on the back of her neck in the past 6 months that was the moment I thought it has to be cushings! I have taken her to her family physician she agrees their is something hormonal going on. She had a 24 hour cortisol and her prolactin level was also tested they both came up elevated.  She had an 8am blood cortisol done and it came in at the highest end of normal at 23. She also had thyroid and testosterone checked and they all came out normal. We have an appointment scheduled with an endocrinologist  and are waiting to get an appointment with a better endocrinology group. I would love any opinion you could give me. Thank you! 

0 likes, 6 replies

6 Replies

  • vicky61456
    vicky61456 pamela00046

    Posted

    Hi Pamela,  I am so sorry to hear that you and your daughter are going through so much.  Some of the symptoms certainly sound like Cushings.  The trouble is that we all have different symptoms although the stretch marks, moon face and buffalo hump are classic.  I have no experience of Cushings with someone who has already been diagnose with another problem but I am sure that myself and the other members will help all we can.  It is unfortunately a long road to diagnosis and many tests may lie ahead.  The good news is that your GP has at least referred you to an Endocrinologist who is really the best and only person who can safely diagnose this disease.  The weight gain is also something that most of us have had to bear.  it for me was one of the hardest things.  I tried all sorts of diets but later learned that it is pointless to try until the source of the excess Cortisol is diagnosed and treated.  I have Post Traumatic Stress Disorder and there are 10 unwanted side effects of this which are very like Cushings.  If you could tel us where you are then we may be able to help you with an Endo if yours proves unable to help.  Please keep in touch and let us know how your Daughter gets on.  I am sure the others will reply, we all tend to be on line at different times.  Take care.
    • pamela00046
      pamela00046 vicky61456

      Posted

      We live in Michigan near the University of Michigan and a few hours away from the Cleveland Clinic. We are waiting to hear back from U of M but they are being difficult. Her psychiatrist is at U of M and he is also going to review her labs with a endocrinologist to figure out where we should go from here. The U of M receptionist was mean and told us they may not see her as a patient. I think she was mad I had called back after waiting a month for them to call me after I sent  them all the necessary paperwork and lab results.
    • cycliccushings
      cycliccushings pamela00046

      Posted

      Dear Pamela

      Please type in Cushings Research and Support Foundation into your Google search. Since you live in the U.S. that foundation is one that has been going for many years. Cushings is also listed with NORD the National Organization for Rare Diseases. Cushings is rare and many of the Endos are mean and block you getting help, i can not believe how bad it still is after 30 years ago when i proved to be the first "cyclic" Cushings patient. The moonie face, the buffalo hump and the weight gain are classic symptoms for Cushings. Have your GP help you with the tests..ask the GP to do 24 hour urine tests..

      to see for himself what the results are...we all care here that your daughter gets diagnosed as quickly as possible..if you look online look for where our CRSF doctors and hospitals are; if the Endo does not follow through with the testing , and its possible try to set up appts with any of our hospitals if they are close enough to you to take your daughter to. If that is not possible try to contact the president of vice president of CRSF...and ask them for advice how to proceed.

      If you have any questions please feel free to ask. I've been dealing with Cushings since 1981..and have had 2 pituitary surgeries myself and understand this disease pretty well. I will be praying this endo is cordial and takes the information on your daughter and works with you as I believe also your daughter has Cushings, no matter what her other medical issues are.

  • vicky61456
    vicky61456 pamela00046

    Posted

    Pamela, Thanks for that.  We do have others in the USA and I am hoping that they will respond to you.  Things are done differently there than in the UK where I am but it is always difficult to get people to pay attention where ever you are!  It is one of those diseases that is so hard to diagnose and so rare that many Pysicians have no experience with it.  
  • pamela00046
    pamela00046

    Posted

    I ordered a diurnal cortisol saliva test for my daughter and I just got the results back. Her 8am and 11pm levels were in normal range and the noon and 4pm levels were high. I am wondering if the doctors will just say it is depression and anxiety and just diagnose her with Pseudo Cushings  since her midnight levels were not high? I know it is good that we have a second test done at a different time showing high cortisol levels but I am not sure if they will take it seriously if they are high at the wrong times of the day. I am taking her to a gynecologist next week so she can rule out polycystic ovarian syndrome. I am hoping this doctor will agree with us that this is Cushings.
  • bap84000
    bap84000 pamela00046

    Posted

    Very sorry to hear that as well. I agree with many others here. It is unfortunate that the diagnose and treatment with Cushing's has not progressed as one would think or wish.  The symptoms are certainly classic. For cortisol, I would say "high end of normal" is 1 data point. Seeking a 24 or 48 hour Urinary Free Cortisol is more accurate. It will track the overall cortisol production/accumulation during the diurnal cycle. There could even be other factors or ailments that could be causing this type of cortisol elevation as well. IMO, using some websites to be educated and ask questions on the diagnostic paths for Cushings disease can be a huge help. Being able to be your own advocate.  If you can help question a given choice of diagnosis it can be helpful. Sometimes you might be able to know more about the disease than most GP's and some Endocrinologists. They aren't doing it to be lazy but they can only devote so much time to read up on a rare disease that they have no to not much prior experience. Definitely researching, getting help from a Dr and ruling out Cushings is worthwhile.  All the best to you and your daughter and that you can definitely find some root cause to some of these unexplained symptoms. 

     

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