At CSRF, we get a lot of questions about weight loss diets, techniques and products.   Weight gain is one of the more common symptoms of Cushing’s, and many Cushing’s patients are eager to lose that weight.   People often ask if we recommend a special diet or supplement to help people with Cushing’s take off those pounds.  The short answer is: No.  While some weight loss programs are safe and effective, your doctor, who knows you and your medical history, is best equipped to advise you.

We believe Cushing’s patients are particularly vulnerable to weight loss scams.  We may find that programs which work well for others are not so effective for us.  Muscular weakness, pain, and fatigue make exercise difficult, and some people feel self-conscious about wearing a swimsuit or exercising in public.  Depression, anxiety and “cortisol fog” may cloud our ability to think critically.  Social isolation may drive us to the Internet, social media, or TV for advice.  Some of the medications we must take to stay healthy can cause weight gain as a side effect.  Bad experiences with some doctors may leave us distrustful of the whole medical profession, or science in general.  Treatment for Cushing’s is a lengthy and frustrating experience, and that magic pill or diet can be all too tempting.

Estimates for the value of the American weight loss industry vary by source, but are always in the billions of dollars.  Clearly, the wish to lose weight translates into lucrative business, and not everyone in that business has your health as their first priority.  The CSRF does not endorse any commercial weight loss products.  We encourage our members to be skeptical, and consider the following issues:

• Some supplements can have dangerous interactions with prescription medicines.
• Others are nothing but compressed cornstarch; the only thing they make thinner is your wallet.
• Some products may be made in unsanitary facilities.
• “Natural” doesn’t mean “safe” – lead and arsenic are natural, too.
• Just because a diet book is a best seller, that is no guarantee of success.  Wasn’t a different diet book on the best-seller list last year?  And the year before? And will be next year?
• When looking for a weight-loss program, check the “careers” section of their website.  Do they hire people with medical knowledge, or people who are expert in sales?

But don’t just take it from us!  Check out these helpful resources:

Federal Trade Commission (FTC)  Information on weight loss claims and advertisements

Food and Drug Administration (FDA) Information on dietary supplements

National Institutes of Health (NIH) Office of Dietary Supplements

When treatment for Cushing’s is successful, cortisol levels gradually normalize and many patients find that they are able to lose weight.  However, surgery for Cushing’s is not “weight loss surgery”, and we hear from patients who are bitterly disappointed to find that following surgery, excess pounds do not immediately disappear.

In summary, like everything else about Cushing’s, weight loss requires patience and persistence.  Recovery is about becoming healthy, not becoming thin at any cost.  Exercise and a nutritious diet are important for everyone, whether you have Cushing’s or not.  Before taking any product or significantly altering your diet, always talk to your doctor.  And remember: if it sounds too good to be true, it probably is.

By Ellen Koretz Whitton, CSRF Director, Winter, 2014