A flawed Cushing’s response versus what works for me

Not every diet or exercise is healthy, I've found through tough experience

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by Noura Costany |

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Cushing’s disease is known to cause weight gain, which can be difficult and even overwhelming for those of us who have it.

I gained 70 pounds with my first pituitary tumor before it was removed in 2020. After that endoscopic pituitary surgery, I was able to lose a few pounds, only to have a second tumor appear in 2022. I gained another 50 pounds with that one. I started at 140 pounds and ended up at 250.

Having your body change like that is startling, and I found it hard to wrap my head around. It came with striae, swelling, bruises, and a buffalo hump. When I looked in the mirror, I felt like I was staring at a stranger.

With such changes, it’s not surprising that many living with Cushing’s are eager to lose weight. But I’ve seen some of us put out a lot of dangerous rhetoric on the subject.

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Fad diets and my answer to them

Fad diets are common, and I fell into their trap. Two common fads are the “1,200-calorie diet” and the ketogenic, or keto, diet.

With the restrictive 1,200-calorie diet, you risk nutritional deficiencies. It can cause dizziness, hunger, fatigue, headaches, and more. Sure, you might lose weight at first, but it isn’t sustainable. It’s very plausible that you’ll gain the weight right back.

The keto diet also comes with risks. It’s been known to cause low blood pressure, constipation, and an increased chance of heart disease.

Losing weight is not worth putting that degree of strain on your body. I can’t tell you what’ll work for you, but I can tell you what has worked for me.

First and foremost, I’ve learned to love my body and myself. I’ve gotten tattoos around some of my striae, which helped me love them. I’ve bought new clothes in my style to help me feel more confident. I follow other plus-size creators and surround myself with body positivity.

The result? I now love my body more than I ever have, at 202 pounds. I’m losing weight, but purely for my health.

About that binge eating and excessive workout

Within the Cushing’s community, I also see binge eating. This habit is a lot harder than a fad diet to break, since Cushing’s often causes hunger, especially in the evenings. In my house, I find that eating three to five full meals a day helps me. Of course, my medical treatment helps, too, and I wouldn’t be able to lose weight without it.

I always keep healthy snacks in my fridge for late nights. I recommend cinnamon apples, which are an easy treat when I have a sweet tooth. I also keep hummus, frozen smoothie packs, and pasta with vegetable sauces. When I get those late-night cravings, these options usually help me tremendously.

In a different approach to the problem, many with Cushing’s put themselves through excessive workouts. I fell into this risky behavior, too, following advice from others in the community. Workouts that go too far can cause cartilage damage and put extra pressure on your joints and muscles. Worse, they didn’t work for me at all when I was taking them on. Instead, I was fatigued and always sore, and I didn’t lose weight the way I wanted to, either. Nor was I stronger.

The other side of the coin

What has worked for me? Low-impact yoga has been the most helpful. I’ve gained a lot of strength through it, and it’s added tone to my body as well. I’ve also done some basic weight lifting, using nothing over 10 pounds. That’s been good for me, too, though I don’t do it more than once a week.

Swimming is incredibly efficient and something I’ve done a lot, since I was on a swim team for eight years. Today, however, I don’t have a lot of access to pools. On the occasions when I find a pool I can use, swimming is my absolute favorite way to work out.

Every person’s body is different, and of course, you should always do what’s best for you. Falling into any sort of fad can be problematic, so it’s important to do your research and talk to your doctor. I wish you all safe healing, and strength!

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.


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