Aa
Aa
A
A
A
Close
1090984 tn?1463769850

Could I still have cushings?

Had an MRI today, Not to look for a tumor but because I had MS for many years. My MS is under control and I am fine however I have gained over 40 pounds in the past 4 years. I realize to some here that's not a lot, however to most people that is tremendous amount of weight to gain! I have been tested for everything, even cushings. I peed in a jug for 24 hours, did some steroid test etc....

I was wondering if I have a tumor on the pituitary, I am hoping the neuro will see it, or is it something they HAVE to be looking for?


Also it is possible to have cushings passing all the other tests?

These are my main symptoms... Weight gain, most the weight went to be belly ( I am a girl who never put weight on in the stomach, always thighs and hips) Dry hair and skin, dry eye syndrome, unexplained severe body aches and muscle pain, depression etc....

I am so sad and depressed and uncomfortable!!
Best Answer
Avatar universal
COMMUNITY LEADER
I got that reaction as well - the doctor flat out called me a liar etc. but that whole thing just made me made - I did give up for a while and got much sicker. It takes finding a GOOD doctor - the problem is that they are so poorly trained on Cushing's - told it is rare, they will never see it, it is a horse not a zebra blah blah blah and they frequently mess up the testing or don't even bother and just pat pat pat.

Where ever you can - try to get some testing. Don't let the idiots win. I even have it in writing that I can't have it. Hah.

I did a food diary, did counseling (to stave off the you are depressed and eat too much argument) and they still treated me like poo - it is quite a battle!
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
COMMUNITY LEADER
I had Cushing's and know a lot of people with it. One test is not enough to tell you yes or no.  There are guidelines out there that say a minimum of 3 different tests - but under that I would never have been diagnosed. It does give the out of *more of clinical suspicion* but few docs will think to go that far as they don't have the training to know what the syndrome entails.

Your symptoms are consistent - so they should look into it. Cortisol can effect they thyroid (making it low) and cause more symptoms as well. BTW a neuro is not a treating doc for pituitary - you need an endo or a neuro-endo. The neuro endo will only usually take you on once something is established- such as the lesion is seen on the pituitary or tests or abnormal but that is your best bet (although you still run into duds).
Helpful - 0
1090984 tn?1463769850
My neuro looked at me MRI today and couldn't see anything,  
Helpful - 0
Avatar universal
COMMUNITY LEADER
Yeah well my neuro does not know Cushing's from a daisy - and a lot of radiologists miss the lesions (and they can fall between the slices as well!). So, even a clean MRI means little - the tests mean more and they have to be done correctly. Weird, my neuro won't even read a MRI - I showed him my lesion. Did you get a dynamic pituitary MRI?

Are all your blood testing being done at 8am fasting? ACTH chilled, spun and frozen promptly? Is he doing ancillary testing to see other hormones? Hormone testing is a biotch - not so easy and I was held back on diagnosis from test timing and lab handling... so it is important to know not only the right tests but HOW to test.
Helpful - 0
1090984 tn?1463769850
well I have been to endo's and have numerous tests run by my primary.

I give up, maybe in the past 4 years I did suddenly get lazy and eating more without realizing it.  Just seemed so sudden and my stomach is HUGE!  I never gained weight in the belly before, mu weight usually went to the butt and thighs,

I never been heavy in my life, bur I am getting older I suppose, maybe my metabolism is slowing down but it seems to be slowing down rather quick.

I have body aches, vision changes, dry skin and hair, dry eyes, feel bloated all the time, getting FAT actually no I am now already Fat.

I have exhausted all options for doctors, they just pat me on the back and say I am female, old and get over it.  so I give up.  But dieting is not working.

Helpful - 0
1090984 tn?1463769850
Well I am in the Denver area, if you know of any here message me, otherwise I am done, I keep spending money to have doctors tell me I am old and fat.
Helpful - 0
Have an Answer?

You are reading content posted in the Brain/Pituitary Tumors Community

Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.