Day Five, Cushing’s Awareness Challenge

 

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

 

 

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

 

13 Responses

  1. From Facebook:

    Chanelle said: Easy! It's dealing with all the CUshing's BS that's hard!

    Princess A said: They don’t do any of the tests here and I’m agoraphobic. =/ So my chart will forever read ‘Suspected Cushing’s’.

  2. YIKES! That animation is way to accurate to not give me nightmares! Thanks God Cushing's is behind me now, but the recovery process is almost as bewildering…

  3. From Facebook:

    Dawn said: MaryO's blog about how hard it is to be diagnosed. This woman saved my life! 🙂

  4. And this process starts only AFTER they’ve tried to diagnose you with everything else in the book…years of that and then years testing for Cushing’s makes a reaaaallly long process!! 

  5. From Facebook:

    Marlene said: I presented with symptoms for about 7 years before a doctor guessed I had Cushings.

  6. And how many get "stuck" up near the top because they can't get a high 24 hour urine? That was us "reevaluate in 6 months" year after year.

  7. From Facebook:

    Amy said: My tumor was undiagnosed for over 13 years. A lot of damage was done.

  8. From Facebook:

    Colleen said: I had a general practitioner tell me, without ordering any tests at all, that I didn't have Cushing's because it's "too rare."

  9. From Facebook:

    Stephanie said: same here. he also told me i was obese but just in the stomach area.

  10. From Facebook:

    Kevin said: I was sent to a local Endo after gathering info with my GP based on my suspicion of Cushing's…. All the standard stuff, High Bloodsugar despite 4-5 different meds, High Blood Pressure despite 4-5 different meds, 7 unexplained rib fractures that didn't heal for over a year, Dexa scan confirmed Osteopenia, abdominal scan showing bilateral adrenal hyperplasia, moon face, buffalo hump, central obesity, really obvious purple striae, easy bruising and slow healing, and close to 2 years of daily food/medication/activity logs (detailed enough to be diagnosed OCD), Oh, and a single high plasma cortisol result….

    I told him I thought it was Cushing's, more specifically a pituitary tumor and presented him with my piles of evidence… He gave me the standard "It's too rare", you need to eat better, exercise more, and remember to take your medications… then sent me for a sleep study because he suspected it was all just sleep apnea… It took 4 more visits over several months while he ruled out every possible disease he had a test for before someone else at his practice ordered another Cortisol & ACTH which were both several times the maximum range… Finally got a Pituitary MRI and when the results came back he acted like he had made some great discovery. Months later post-surgery when I went back to the local Endo he spent the entire office visit explaining to an intern how great he was for making the discovery that saved my life etc…etc…

  11. You make a copy of this and send it to him anonymously. If they could take the ego out of the way they practice medicine, we would all be alright. I'm sure they want all of us "quaks" to go away to though. Truth is, people just know when they are sick. Besides, Cushings is not as rare as they think…just rarely diagnosed.

  12. From Facebook:

    Marlene said: I presented with symptoms for about 7 years before a doctor guessed I had Cushings.

    Amy said: My tumor was undiagnosed for over 13 years. A lot of damage was done.

    Melissa said: 7 years and 150lbs later…

    Olga said: 10 Years and 162 lbs later….

    Susan said: Over a dozen years for my daughter! It isn't easy to diagnose, PCOS, DM, HTN, Obesity common diagnosis all get added to a long list before the true diagnosis of the Cushing disease is even consider. A zebra amongst the horses.

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