Discussions By Condition: Medical Errors

Running out of patience with Cushings diagnosis.

Posted In: Medical Errors 3 Replies
  • Posted By: birdiegirl1
  • July 2, 2008
  • 05:32 PM

I am a 31 year old female from Indiana. The last 6 months have been some of the roughest I have been through health wise. I started out going to my doctor for what I thought were thyroid related symptoms (due to the fact that I only have half of my thyroid gland). I was experiencing; skin rashes, hot flashes, headaches daily, vertigo, dizziness, extreme muscle fatigue and tiredness, and horrible nausea daily. She ran quite a bit of blood work and tests, all of which came back normal. Two months later I was hit with my first debilitating migraine. Doc ordered an MRI which came back showing a 3x5mm cystic structure in the anterior/posterior junction of my pituitary gland. She referred me to a local endo.
My endo upon seeing me assured me that he did not think my cyst was the cause of all my symptoms but that they were separate issues. He ran a mulitiude of blood tests and a saliva tests. The blood work was normal but the saliva test came back showing high levels of cortisol indicating Cushings Disease caused by the pituitary andenoma. I was ordered to run a 24 hour urine test to check for cushings disease. My urine test came back normal. I questioned the results asking if it is possible that the cortisol may not show up in early stages of the disease? He recommended another MRI and urine tests in 6 months to check. I am not feeling well as it is and I have to wait another 6 months? I then asked for further urine testing to see if it is intermitent. My doctor said he didn't recommend it due to the probability of a false positive. Is he for real? What does it take to get diagnosed for Cushings. He already knows I have a cyst in my pituitary gland and high cortisol in my saliva. How many tests does it take before I can get this treated. Today I am going to ask for a referral to a specialist. I am afraid he is going to try and refer me to a friend of his out of Indianapolis when I want to see someone who deals with pituitary tumors and the diagnosis of Cushings.
If anyone out there knows of a great doctor to help me around the Indiana area please let me know. I am willing to travel out of state. I would also love to hear any advice or personal experiences. Truly, Frustrated!

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3 Replies:

  • I have been sick with extrememe fatigue, pain,dizziness, vertigo, low body temp,hyoglycemia, sensitivity to cold ( I crash hard) well, the list goes on and on. I have been housebound mostly for the last 20 months. I have had more than one MRI,been to an ENT (ear nose and throat specialist) and Neurologist, reg. doc, pulminary specialist,nutritionist, physical therapist and had all the tests done including echocardiagram of which they found out i have MVPS (mitral valve prolapse) but said nothing that would explain my symptoms. The vertigo dizziness is by far the most dibilitating of the symptoms along with the fatigue. I have had no guidance from any of the doctors and have left numerous offices in tears because they have treated me as if I am just a hypochondriac. I have been plucked out of my life. I am a wife and mom of 3 great kids! I want my life back!! FINALLY, I read a book called 'From Fatigued to Fantastic' (PLEASE read it!!) It put so many pieces of the puzzle together for me, and guided me to the website: www.vitality101.com which then guided me to a Fatigue Center in my area. I quickly made an appointment! These doctors have specialized in our type of problems. They know WHAT kind of blood tests to do, and how to read them accurately. Even though you may show negative on certain tests, doesn't mean that you should ingnore some obvious symptoms and not take the medicine as a trial to see if you start feeling better! THey don't treat your TESTS, they treat your symptoms. I have only gone to my first initial appointment (they spend 3 hours with me) and drew 14 viles of blood. I am taking Cortisol for my adrenal failure at the moment, and other things to help get my body functioning again. My follow up is coming up in a couple of weeks where we will go over everything and she will go over a treatment plan. Yes, I have Chronic Fatigue Syndrome and Fibromyalgia I found out which is something that attacks the endocrine system and MANY other systems in the body. PLEASE check it out! THEY can help. If you don't have a center in your immediate area reading the book is very helpful. You can also search for a doctor that may have been to some of DR. T's seminars and knows his protocols. (from the website)Good luck, and hope this helps!
    jdepplover 400 Replies Flag this Response
  • Ditto on the above poster. Adrenal activity is pronounced when the immune system is activated. It is part of the defense mechanism of the body. And when adrenals become whacked, the rest of the system goes along. There is much posted on the internet about the HPA axis and CFS or immune. There are some good doctors at the OSU Ohio State University in Columbus Ohio. Try Dr. William Malarkey, he is both a good endo and researcher and knows the immune involvment in CFS.
    LINENUP 122 Replies Flag this Response
  • Check out www.goodhormonehealth.com for one of the leading doctors in the US. Also, you will find ENORMOUS support at www.cushings-help.comThey have a great forum there! What you are going thru is what most people with cushings go through, and there are more then you would first beleive. All the best...Kiera
    Anonymous 42789 Replies Flag this Response
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