Thursday, July 22, 2010

The Retrospective: Part III (a guest post)

What I Have Learned Along the Way
[This is the third post of a multi-post series. Part I and Part II  were posted earlier this week. ~Robin]

 by Vivant Malgré*

There’s the Cushing’s that doctors talk about and there’s the Cushing’s that patients know. When I go to most doctors or read about Cushing’s in the medical literature, there is a belief in a disease called Cushing’s where all patients gain 100 lbs in two months, they all have huge red stretch marks everywhere, they all have acne, hair that shouldn’t be, can’t stand from a squatting position, raging diabetes, raging high blood pressure, huge bruises everywhere, gigantic back humps and it’s all very dramatic. And the test results are all consistent, UFC’s are great and dexamethasone testing is nearly foolproof. I would estimate that during my pilgrimage in Cushing-land, I have gotten to know at least two hundred people with pathology/biochemically proven Cushing’s. [Robin's note: the Cushing's Help boards host thousands, and I believe this number is much higher than the author realizes.]

I have yet to meet anyone who fits the mold that the specialists seem to be looking for. In fact, several years ago, when a family member was on more than 100 mg of prednisone a day (20 times the biological baseline) she did not have the severity of symptoms that Cushing’s specialists seem to want to see. This kind of Cushing’s is indeed very rare. In fact, I wonder if it exists at all. And I wonder where all the patients are that have been treated by the “Cushing’s specialists” at the big universities. Because out of the literally hundreds of Cushing’s patients I have met on this journey – either in person or online, I have never met, nor even heard of, a real person who has been successfully treated at the “big name” clinics such as UVA, Cleveland Clinic, NIH, Mayo, etc. etc. It’s very hard to believe that with the very active on-line Cushing’s community that none of their patients would be seen. So, one really wonders who they are treating.

The Cushing’s that patients know is different. The weight gain is a problem, but it can be much more insidious -- twenty pounds in a year, year after year, no matter what you eat or how much you work out. The second biggest symptom seems to be sleep – insomnia, poor quality, daytime sleepiness. The muscle weakness can be more subtle – steroids after all do a really good job of masking pain – so it’s more like not being able to wear heels, not being able to go up stairs, lacking hand strength, stopping doing things you like, such as hiking or running or even going to church or socializing, and then housework and cooking and cleaning, just because it is all just too much effort – and not because you are depressed. It’s hanging onto the cart to get through the grocery store when you are only thirty. It’s feeling old when you’re not. It’s not being able to get over colds, for months on end. It’s weird rashes, weird digestive problems, weird heart palpitations. It’s acne when you are long past puberty. It’s turning from an outgoing, sunny person to a crabby recluse and not knowing why. It is health and wellness lost in teaspoons, sometimes so slowly it can be hard at times to put your finger on what is gone. Until it all catches up and you realize. Finally, it is familial. If you really want a good description of Cushing’s and understand the cutting edge of medical treatment for it, read the veterinarian sites. Vets know more about Cushing’s than almost all of the doctors for humans. The dogs and horses have more treatment options, too.

Cushing’s testing -- the practical side of it. More is better. Frequent is better. Dexamethasone tests only work in medical journal articles – and they are wrong most of the time. Positive test results mean tons more than negatives – if you don’t believe it, do some statistical modeling and it becomes pretty obvious pretty fast. Always get lab results and take the time to understand what they mean and what the right reference ranges are. Normal does not necessarily mean all is right and a lot of doctors never even read the results. Even if they do, a lot of doctors don’t pay attention to anything other than whether something is marked with an H or an L.

Almost nobody gets high results on all three of the major Cushing’s tests – salivaries, midnight serums and UFCs. Midnight matters. Outpatient midnight serum cortisol testing rocks – it will tell you more, faster than any other test. Salivaries are typically the hardest of the “big three” for folks to get a diagnostic number on – which is concerning given that so many doctors are moving in that direction. MRI’s are as good as the person reading them – for mine, all of the neurosurgeons and the specialized radiologist who read them found the tumor. The local endo’s radiologist, after the fact (and after the tumor was removed) wanted to argue it anyway. Gotta wonder.

The screening algorithm for Cushing’s is completely backwards. It starts with dex testing which is positive only with the most advanced cases (and has the most false positives for other diseases), followed by salivary testing and UFCs, which also have a lot of false negatives. Most endocrinologists won’t even do the most accurate, lowest cost, and least likely to miss test – midnight serum cortisols. And the threshold between normal and suspicious (i.e., keep testing)– is five. Vets use cortisol/creatinine ratios to diagnose animals, and for the very few people-doctors out there who use the measure, there seems to be a really good success rate.

Cushing’s treatment. It’s really easy. The sooner the better. You can’t get back time. You sometimes can’t take back the damage. The doctors who want you to wait another six months, or a year, or two years – they don’t live your life, they aren’t missing time with their kids, they aren’t paying your bills. So they have no right to ask you to give up years to make their lives easier in terms of making a diagnosis. To say it again – you don’t get back time.

And as a warning for patients who are facing surgery. Those steroids really do mask a lot – that is why the orthopedists are so steroid shot happy. It was quite the shock after my first surgery to realize that somehow my leg muscles had completely disappeared on me, as well as my arm and shoulder muscles. Poof!

Coming tomorrow:  What could have been better



  1. I know that this isn't the "popular" response but I was successfully treated at NIH in 1986. I had one successful pituitary surgery and one only.

    Like the author, I also know hundreds of other Cushing's patients and many who have had successful diagnoses and/or surgery at NIH.

  2. Mary, truth is truth! That is what I'm seeking on this blog. Do you know of anyone in the past few years? Recently? I would love it if they commented here, too, especially with the dates of their treatments, like you did. Thank you!

  3. In the past, say, five years, and especially after Dr. Oldfield left, who exactly has gotten a diagnosis at NIH and who has gotten successful treatment for Cushing's disease (i.e., not Cushing's syndrome.) I have gone through the boards in detail, have asked others for examples and have found no one. But I have found a number of people who NIH incorrectly said did not have Cushings who have pathology to prove otherwise. It's a $2mil annual budget program, with $300k on fellowship salaries alone. There should be more than one example of success from 24 years ago.

  4. to put it in perspective, in the past two months, we have had TWO people have a successful surgery, with pathology, where NIH intermural research has tried to put a wrench in the surgery. One was an incident where the patient didn't even know, until after the fact, that NIH had been involved. Who knows how many other people on the boards are having problems with getting a diagnosis because, behind the patient's back, bad advice is being provided by NIH.



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