Cushing's Disease

ledgey91

Hi all, bit of background - I went through a pretty large weight loss relatively recently (losing about 11st over the course of a year) and got down to about 11st 7lb. Since losing weight I started getting oedema in short bursts out of the blue (not lasting more than a week or two). I got it again just before Christmas but this time it went to my abdominal areas as well as my lower body and it refused to budge despite eating at about 2000 calories per day, having an active job and doing cardio most days of the week.

So I went to the doctors who did a large amount of blood test and they came back yesterday saying I had high cortisol levels (reading over 400 whilst the standard is below 50) which would suggest Cushing's Disease. I've read a fair bit on it since and seem to match a lot of the symptoms but it's just a case of waiting to hear back from the doctor to get a full and proper diagnosis and then treatment (if needed).

It's obviously frustrating having my stomach swell so much given the effort I applied to lose it and it's even more prominent given the loose skin I have. That said, I appreciate that if I do have Cushing's then at least it's treatable.

I have also been having muscle degradation although I do strength training 2-3 times a week with a high protein diet leading to me having very skinny arms. My question is more of a case of has anyone had experience dealing with Cushing's disease before and is it possible to mitigate the stomach fat build up? Is there anything I can do about the muscle weakness? I'm at a loss really about what I should/would do nutritionally and I'm just trying to keep myself in the loop about possibilities.

Does a person's BMR/TDEE change with Cushing's?

Thanks in advance!

wi1234567890

There is a very small (21 patient) study here https://csrf.net/doctors-answers/calories-burned-during-and-after-cushings-endo-2016/ that answers a part of your question.

ledgey91

wi1234567890 wrote: »

There is a very small (21 patient) study here https://csrf.net/doctors-answers/calories-burned-during-and-after-cushings-endo-2016/ that answers a part of your question.

Interesting read, thanks!

comptonelizabeth

I don't have Cushings but have similar symptoms (huge stomach, skinny arms and legs) due to being on long term steroids for a chronic condition so I sympathise but have no answers, I'm afraid.
I have found that progressive lifting has helped a little with the muscle wasting. If Cushings is treatable then I would assume your symptoms will improve with treatment?

girligirl1617

I have Cushings disease and and was diagnosed last year. I have gained over 100lbs because of this horrible disease. I recently underwent surgery to remove the tumor and one of my adrenal glands. Unfortunately my case was so bad that the other adrenal gland isn't working. Now I have to do hormone replacement treatments until the other gland starts working again. It has been horrible with a ton of other side affects. My bones stared breaking and my pelvis broke in 2 places and my hip collapsed and I just recently had to have a hip replacement surgery. I've also had to be hospitalized for extreme high blood pressure and put on medication for that and septic shock which almost killed me. It has been a horrific year. You will have to find out what kind of Cushings disease you have and then a treatment plan. I wish you the best because I wouldn't wish this upon anyone!

SummerSkier

Oh that sounds really horrible. As a gal who has been around horses for a long time, I have seen what it does to them with muscle wasting and other side effects. For horses we do give them medications but it is a constant battle to dose correctly. Hopefully your docs can help you out quickly. I don't think there is anything you can do about the swelling and wasting until you have your levels under control. Then I would think you could get back to pretty much normal. Best of luck and many hugs...

LittleLionHeart1

ledgey91 wrote: »

Hi all, bit of background - I went through a pretty large weight loss relatively recently (losing about 11st over the course of a year) and got down to about 11st 7lb. Since losing weight I started getting oedema in short bursts out of the blue (not lasting more than a week or two). I got it again just before Christmas but this time it went to my abdominal areas as well as my lower body and it refused to budge despite eating at about 2000 calories per day, having an active job and doing cardio most days of the week.

So I went to the doctors who did a large amount of blood test and they came back yesterday saying I had high cortisol levels (reading over 400 whilst the standard is below 50) which would suggest Cushing's Disease. I've read a fair bit on it since and seem to match a lot of the symptoms but it's just a case of waiting to hear back from the doctor to get a full and proper diagnosis and then treatment (if needed).

It's obviously frustrating having my stomach swell so much given the effort I applied to lose it and it's even more prominent given the loose skin I have. That said, I appreciate that if I do have Cushing's then at least it's treatable.

I have also been having muscle degradation although I do strength training 2-3 times a week with a high protein diet leading to me having very skinny arms. My question is more of a case of has anyone had experience dealing with Cushing's disease before and is it possible to mitigate the stomach fat build up? Is there anything I can do about the muscle weakness? I'm at a loss really about what I should/would do nutritionally and I'm just trying to keep myself in the loop about possibilities.

Does a person's BMR/TDEE change with Cushing's?

Thanks in advance!

How are you now????

ledgey91 wrote: »

Hi all, bit of background - I went through a pretty large weight loss relatively recently (losing about 11st over the course of a year) and got down to about 11st 7lb. Since losing weight I started getting oedema in short bursts out of the blue (not lasting more than a week or two). I got it again just before Christmas but this time it went to my abdominal areas as well as my lower body and it refused to budge despite eating at about 2000 calories per day, having an active job and doing cardio most days of the week.

So I went to the doctors who did a large amount of blood test and they came back yesterday saying I had high cortisol levels (reading over 400 whilst the standard is below 50) which would suggest Cushing's Disease. I've read a fair bit on it since and seem to match a lot of the symptoms but it's just a case of waiting to hear back from the doctor to get a full and proper diagnosis and then treatment (if needed).

It's obviously frustrating having my stomach swell so much given the effort I applied to lose it and it's even more prominent given the loose skin I have. That said, I appreciate that if I do have Cushing's then at least it's treatable.

I have also been having muscle degradation although I do strength training 2-3 times a week with a high protein diet leading to me having very skinny arms. My question is more of a case of has anyone had experience dealing with Cushing's disease before and is it possible to mitigate the stomach fat build up? Is there anything I can do about the muscle weakness? I'm at a loss really about what I should/would do nutritionally and I'm just trying to keep myself in the loop about possibilities.

Does a person's BMR/TDEE change with Cushing's?

Thanks in advance!

How are you doing now?

girligirl1617 wrote: »

I have Cushings disease and and was diagnosed last year. I have gained over 100lbs because of this horrible disease. I recently underwent surgery to remove the tumor and one of my adrenal glands. Unfortunately my case was so bad that the other adrenal gland isn't working. Now I have to do hormone replacement treatments until the other gland starts working again. It has been horrible with a ton of other side affects. My bones stared breaking and my pelvis broke in 2 places and my hip collapsed and I just recently had to have a hip replacement surgery. I've also had to be hospitalized for extreme high blood pressure and put on medication for that and septic shock which almost killed me. It has been a horrific year. You will have to find out what kind of Cushings disease you have and then a treatment plan. I wish you the best because I wouldn't wish this upon anyone!

I am one of your hugs.