How Cushing’s Affects Your Weight
Hey, everyone!
People often ask about diet and exercise on my support page, Crush Cushing’s. It’s a tricky topic because there are different types of Cushing’s (florid versus cyclic), but generally, the answer is quite simple for most of our situations.
With Cushing’s, usually no diet or type of exercise will help with weight loss or prevent symptoms from forming.
I’m not a scientific or medical expert, but based on my personal experience, others’ experiences, and what my two doctors have said, nothing will improve until someone’s specific line of treatment is carried out and deemed successful.
One reason exercise and diets don’t really work for people with Cushing’s is the high levels of cortisol (stress hormone) running through the body. Even people without Cushing’s who have lots of stress have a hard time losing weight. Why? They struggle because they have elevated levels of cortisol.
These individuals don’t have nearly as much cortisol elevation as Cushing’s patients do. Their levels are just slightly elevated, which makes it more difficult to lose extra fat, especially around the abdomen. If “normal” people with slightly higher levels of cortisol have a hard time, so will we — big time. Don’t be too hard on yourself. I know it’s easier said than done.
When it comes to diet, it’s a loaded answer, so I’ll try to condense it.
Our endocrine system has control centers — the glands. They tell our 50 different hormones, which are “chemical messengers,” what to do. The second a hormone is told to do the wrong thing (for example, excess cortisol secretion), it automatically starts sending signals too early or late — out of sync.
Metabolism is controlled by the hormone system. If hormones are getting the wrong signals and not working when and how they should, metabolism won’t either. If a body is improperly metabolizing food, it won’t turn into whatever it’s supposed to in our bodies — muscle, energy, fat storage, or waste. That is just one of the many different reasons a diet won’t work. There’s a lot more, but you can always ask your endocrinologist for a more detailed rundown if you want to understand your body better.
I also want to quickly touch base on those who have cyclical Cushing’s. Some of you are probably going, “Catarina, I’m losing weight. You don’t know what you’re talking about!”
I’ve met quite a few cyclic patients who stated they were able to lose weight when they were low in cortisol and gained weight when they were high in it, but after a while, this cycle didn’t let them lose weight anymore. They just constantly kept gaining, but not at the frequency of someone who has florid Cushing’s. So, it is possible, but it’s unsustainable and unrealistic for a majority of patients who have Cushing’s.
That’s the best I could do on that subject condensed without confusing you guys or creating an essay. I hope you learned plenty!
If you ever have any topics you’d like to see covered, shoot me a message on Instagram (linked in the first paragraph), and I’ll do my best to cover it to the best of my ability!
See you guys next week!
XOXO,
Catarina
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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 Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.
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Comments
DENNIS OBRIEN
I have Cushing’s Disease which was diagnosed in 2013. Unfortunately the tumour on my Pituitary Gland must be small as it can’t be picked up by MRI, of which I have had many.
I am on Ketaconazole and test regularly to ensure cortisone levels are OK and the liver is not being damaged.
I have consistently been careful with my diet. I did not lose weight initially then I lost 20g. However I gained 8 kg in the past couple of years.
Whilst my cortisol levels are on average in the normal range, I think the levels are not varying cyclically as they should.
I am limited in exercises I can do, because of three compression fractures of the spine, a ruptured Achilles’ tendon which could not be operated on, and also a DVT and PE. I do swim and take walks.
Any ideas on how I can lose weight?
Eric
I was diagnosed with Cushing's disease in August of 2018. I went to the hospital and was admitted because of my heart rate. A MRI was done and a massive tumor was found behind my eye emergency surgery was done a week later because if not done I was going blind. I was diagnosed with Cushing's after part was removed and I had a second surgery a few months later. I let it go for many years before it was discovered I have been told it's the most advanced stage with Cushing's that's been done. it broke my bones in my back.
Tessa
Hi Eric,
That's so incredibly lucky they found it and were able to operate, but sounds like a horrible ordeal. Are you ok now?
Caroline Bonett
I had cushings over 28 years ago. They removed the tumour on my pituitary gland and I have been on 24mg hydrocortisone daily ever since!
This last year I have gained weight and my face was getting hairy again but I put it down to menopause!
But my doctor did bloods and my cortisol levels way too high and. An MRI showed another tumour!!
Tim Stephens
I cannot get the doctor to do more than just a blood test for Cushing which all I read a blood test is not very good at the determining cushions but I fit every example except my sugar level is normal but before I started having all these symptoms I actually had low blood sugar and as a child was hypoglycemic but that's why the doctor doesn't want to do anything is there anyway I can get the other test done
Omilkhayer N. Lawi
Good day! I'm Omilkhayer N. Lawi, I'm currently diagnosed having a Cushing's syndrome. Can I ask how long is the recovery and how long it will go back to normal? Thank you.
joann L orologio
I switch from ketaconazole to korlym, Since I have lost about 30 lbs. Also started drinking Dr. Braags apple cider vinegar and I am still losing about 2lbs a week. You can purchase Dr Braag's book om amazon
Deborah
How does this apple cider help?
Linda Tritton
A friend of mine is convinced that if I lose weight I would cope with my Cushings Disease. I have told her that it is impossible as the disease is the cause of my weight gain. What can I do ???
Nichole Dykstra
This disease is horrible and has taken over my identity and self worth. I just had nogel removed on my pituitary gland and am looking forward to full recovery! I’ve already lost 5 lbs in 4 days.
lucie
Hi Nichole, dont know how long since your op -? how u doing? I had same op on Pituitary 2015 lost 20kg still trying lose next 20kg grr Have knee arthritis replacements so not able to do normal walk.exercises etc. Good luck with your recovery :)
lucie
oh my friend thats wot we all want to know and why we all reading these messages... there isno cure that says "U will go back to how your body was before Cushings came" yes taken me 15yrs weight exploding and 7yrs since op have lost half wot Ive put on = it mite take me another 7yrs eh so from 45yrs - 75yrs grr Am slowly jus learning to live with looking like a rolypoly person ... cant get up from floor if fall as both knees replaced grr had lauf today as found a way up again yep gotta keep your sense of humour any way u can my friend - goodluck with your journey :)
Ishfaaque
Hi, Catarina. I am 15 yrs old and I also have got Cushing Syndrome with a functional pituitary microadenoma. The size of my tumor is just 4.1 x 6.4 mm. And the doctor said it would be quite risky if a surgery is done. I am not under any treatment right now but I applied for medical visa so that I get better treatment abroad. Could you kindly tell me what was the size of your tumor?