Misdiagnosis of Cushing’s Blamed on Fat

I’m not sure if anyone in the Fatosphere has brought this up before, but I was watching episodes of TLC’s Mystery Diagnosis for the first time, and came across an episode where a woman with Cushings is ignored for years, because one of the symptoms of Cushings is rapid weight gain. And guess what the various doctors she saw said when she complained about the weight gain? Yup — “eat less and move more.” And when she did, eating a starvation level of calories and exercising with personal trainer? “Well, I bet if we locked you in a closet and gave you only water, you’d lose weight.” (!!!)

Her story begins at about 6:37, and goes into the next part, which I included.

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4 comments on “Misdiagnosis of Cushing’s Blamed on Fat

  1. ndlesdream says:

    When I saw this woman’s story years ago, it was the first clue that something really might be wrong with me. I kept her in the back of my mind as time went on and the doctor’s I saw could find no medical explanation for what was going on with my body. Four years passed, and I still had no answer. Finally, out of desperation and small hope, I searched the internet to find her again and read up on what her illness was. After watching her again, I knew that I suffered from the exact same thing. Fast forward 3 years and I’m still struggling to be taken seriously by a doctor, but I haven’t given up hope. A large part of the problem with getting a diagnosis for Cushing’s is that there are Cushing’s specialists in this world, but all medical students are taught and as doctors, they continue to believe, that Cushing’s is an incredibly rare disease that most physician will never encounter in their practicing lifetime. The reality is that the disease is much more common, afflicting many people who have been previously diagnosed with PCOS, diabetes, depression, high blood pressure or a host of other illnesses since the symptoms of the disease mimic other illnesses. Adding to the problem, doctors are told that if they do ever see a case of the disease, it will be so extreme that it will be obvious that this is what ails the patient. Again, the reality is vastly different. Confusing things even more, most Cushing’s patients have mild or even cyclic Cushing’s (this is the type I suffer from) and no two Cushing’s patients have exactly the same experience with the disease. Their symptoms and the physical effects of the disease can vary enormously. Although this disease is an uphill battle the whole way, medical care is necessary. The disease is eventually fatal if left untreated. For more information on the disease, it’s symptoms, providers who treat it, etc., go to http://www.cushings-help.com/ This is an extremely useful site which also links to the Cushing’s support community where you can chat with other “Cushie’s” about any topic. Sorry to go on so long, this is a subject I’m intimately familiar with and I want as many people as possible to have access to all the information available on the disease. Thanks :)

  2. vesta44 says:

    This is something I’m worrying about right now. I had an MRI to diagnose the reasons for my migraine headaches, and my doctor referred me to a neurologist to talk about the results of the MRI. Did she call me into her office to tell me this? No, she had her nurse call me on the phone, tell me they found some abnormalities in my MRI, nothing to be concerned about, but you need to see a neurologist about them, and by the way, you can’t see her until the end of July, she’s only in this office once a month. Gee, thanks, nothing to worry about, you don’t have a clue what the abnormalities are, but I need to see a specialist, and the doctor (my PCP) doesn’t even give enough of a shit to tell me in person. Yeah, I’m not gonna worry or obsess, not much……….
    I have some of the symptoms of Cushing’s, some I don’t, but from what I’ve read, that’s par for the course. On top of it all, my doctor doesn’t want to give me anything other than ibuprofen for the headaches (which doesn’t work, hasn’t ever worked) and suggested Excedrin Migraine (which doesn’t work either, been there done that, still have the headaches). But it’s not my brain causing the migraines, so I get to continue to suffer with them. Sometimes, I really hate doctors.

  3. rraven says:

    I almost cried when I watched this. I too had similar experiences – esp. after going back repeatedly. I wasn’t believed when I gained over 30lbs in a month and was told “what, do you want to see a nutritionist ?” “Exercise more”. (this when I was training for over 2 hours a day!). Then when I complained that they weren’t listening to my other symptoms or even listening, I was told that they saw X number of women every month complaining about weight – I wonder how many other women were ignored when it came to something larger than just weight?? Finally fired that doctor and found one who would listen.

  4. travelluver says:

    I have had Cushing’s disease since 2006. There is one thing I can say to all of you who believe you are suffering from the disease. Insist on getting your cortisol tested with a 24 hour urine test. This is your best bet in proving your case. I have had several doctors over the past 3 1/2 years who have never even heard of the disease. I guess they weren’t paying attention in medical school. This site, even though it specifically says it’s for thyroid disorder, helped me find a doctor who immediately recognized that I had Cushing’s disease: http://www.thyroid-info.com/topdocs.htm. Hopefully this helps someone.

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