Following law school Melissa started to notice changes in her weight and was really exhausted all of the time. She met with her primary care physician, gynecologist, and an endocrinologist to discuss her symptoms and run some tests, but ultimately nothing was found. It wasn't until she did some of her own research that she stumbled upon something called Cushing's syndrome. Watch Melissa tell her story about the symptoms she experienced, and her struggles for a diagnosis.
Thanks for sharing your story! I was just diagnosed a week ago & I’m having pituitary surgery in 2 weeks. I’ve been struggling for years. I used to be a lean healthy yoga chick! I knew what it was, I finally got an endocrinologist who didn’t dismiss my concerns and blame menopause and diet. He took one look at me “This isn’t thyroid or diet, this is cortisol” I said “Cushing’s right?!” He said “That’s what I’m going look for!” Every test showed elevated cortisol except for the urine test, it was normal! That’s the only one I could ever get an endo to check in the past! My new Dr explained that it makes sense that if your system is full of excess cortisol it’s going to show up high in your urine but it’s turned out to be the least reliable test! Obviously!!
I wish you good health & happiness!!
I have been bedridden. I hardly have any musles in my legs. I can't stand for very long. I know I have osteoporosis migraines hypoglycemia IBS severe pain all day everyday. I haven't felt well in years. I lived in Oklahoma and the doctors I went to treated me terrible. I finally am trusting a new doctor and he things I have Cushing's. So the next 3 weeks will tell. 🙏
I know this is from several years ago....hoping someone will still respond. You stated that you had a 24 hour urine test and it was normal....what tests did you have to confirm the diagnosis of Cushings??? I had the suppression test and it failed, causing doctor to call it Adrenal Cushings..... but my 24 hour urine was normal. However.....I can check off EVERY SINGLE SYMPTOM for Cushing's and they are consistantly getting worse. I am not sure what to do. I want to push for more tests to be done.
I got type 1 diabetes in 2006 and didn't know why because I was vegetarian since 1980 and exercised all the time. Well my mother died in 2006 and last year my daughter got cancer. I was under a lot of stress and continue to be. Stress release is cortisol. Now it's 2018 and even after being diagnosed with chronic fatigue syndrome and fibromyalgia, my blood sugars were going out of control, not so much in my blood but in my urine and I watched a video on YouTube that told me about Cushing's syndrome and Cushing's disease. The pituitary gland sends out cortisol which puts the body in fight or flight and stresses and tires the body out and then because the immune system is needed for the cortisol, no response is given to Chronic inflammation which is why I have fibromyalgia. My doctor is doing a blood test this week because the sugar in my urine was 500. The Cushing's syndrome or disease causes the kidneys not to take in and disperse excess blood sugar which is why I had the blood sugar in my urine. The sugar in my blood was 240 which is 100 points over normal. And that's not really bad. But the ketones or sugar in my urine made me look up ketones in the urine and I found Cushing's disease and Cushing's syndrome which is an excess release of cortisol which can cause severe diabetes, and my doctor was Beyond thrilled! I'm hoping I don't have it but that would explain my Panic modes with fight or flight. No sleep or little sleep . No energy at all to the point of shaking with weakness . That would explain everything. These days if you don't take that your diagnosis into the doctor you will never know. My endocrinologist was afraid I might enter ketoacidosis which I did and Cushing's may be responsible for that. Thank God YouTube is here because without it I would never know. If I have Cushing's Disease I owe my life to YouTube. Isn't that something. How are you doing five years later?
I have Cushings as well! Mine is inside the pituitary gland! I had radiation it did shrink it! However, the doctors say treat the symptoms, not the problem! It has not gotten any bigger in three years! But I am insulin dependent and hormones are always up and down! They say if they did surgery I could loose the hole pituitary gland! And that would be much worse!
Carmen Katharine's Wreaths how are you treating the symptoms of high cortisol? Yes I got type 1 diabetes from it I believe and I have ketones in the urine which is another way to test. I'm hoping I don't but something's going on in the doctor is testing this week but it's July 4th so I have to wait.
I've been bedridden with this i believe ..but drs keep throwing antidepressants that don't do anything and say I'm depressed ...yet my symptoms are all pointing to cushings or adrenal fatigue and I've even had a pituitary tumour ....wish they would listen to me...can't take this much longer ....very hard to cope with any stress either good or bad and I'm so sensitive i cry watching a commercial for goodness sakes ....
Kittenpurrrs whenLoved that look on the doctor's face is probably when he's thinking about how much money it's going to cost whether or not he's going to make any of it. I hate to say this but thank God my doctor's not that way.
+ReviewCam I had a pituitary tumour 14 yrs ago and they shrank it with dostinex .... but never checked it in a long time ... my Dr just won't listen to me and keeps giving me anti depressants and saying I'm depressed .... it's so hard to get past this ...he just won't listen when I say it's not like depression and I try to explain how I feel ....so he just gets that blank look on his face where u know your not being listened too....
Try to get a re.ferral for an endocrinologist. They're the best ones to diagnose these conditions. Ask to be checked for a pituitary tumor/disease and describe all of your symptoms, problems with your period, skin, weight, sleep problems etc
I was JUST diagnosed today, after five years. I gained 100 pounds, lost all of my energy, my muscles are gone, and just everything was affected.
I had to fight with most doctors to get them to hear me when I said I was doing everything right. But it was actually my current doctor who said "You've gained 25 pounds in two months. You're getting your cortisol levels tested as soon as possible. I think you have Cushing's.". I've never had a doctor actually take that much initiative, but for her to say exactly what was on my mind was just crazy. I couldn't believe it!
And I just got the results back, and it's definitely SUPER high levels of cortisol. But it wasn't in my pituitary (the tumor) like it is with most patients, and I think that's why a lot of doctors skipped me over. It's in my adrenals!
So, I feel validated. I feel really good that I finally have an answer. And I'm ready to have the surgery to get this stupid life- ruining thing out of me!
Kittenpurrrs whenLoved yes I have ketones in my urine and I have type 1 diabetes and was a vegetarian since 1980 now a vegan and my blood sugars are extremely high in my urine, not in my blood and I'm so weak that I was shaking like you're talking about and barely able to get out of bed some days. I told my doctor today after I did research on YouTube and he was extremely thrilled and said that I was probably right! I believe my sister had it and had a huge tumor on her pituitary gland that made her absolutely go crazy. It was years ago and she had to have surgery. My God I hope that's not happening to me. I was doing intermittent fasting on the ketogenic diet and the nurse at er said that intermittent fasting cannot happen with type 1 diabetes and that I was going through starvation which could be also true but my blood test will tell this week if I have Cushings syndrome or Cushing's disease. YouTube gave me the suggestion through their videos thank God.
KatsSayMeow if it's not in your pituitary what kind of surgery will they do or did they do and did it help? I left the statement about too much cortisol possibly causing my type 1 diabetes in 2006 and putting it out of control today. Did you ever go to another doctor that actually took training because it sounds like that doctor wasn't worth his weight in salt.
KatsSayMeow hi! I also had Cushing síndrome and went to 41 different doctors until I found one who wanted to really heal me. Other doctors just wanted to give me medicine for each symptom I had which wasn't going to improve any of course.
I did an MRI with contrast that way my doctor knew my tumor was about 3.5cm. My doctor is an endocrinologist.
You'll be healed!
It's really hard to find answers but once you have them... you'll be healed!!!!!!
i feel for you...and i am so happy to know u had a good Dr....my story is different. ..my Dr won't listen and keeps saying I'm just depressed ....yeah ..who wouldn't be depressed feeling this weak and sore and weight .....I'm bed ridden ...even taking a shower makes me shake so bad some days i end up feeling nauseous and shaking from being so weak and exerting myself and have to sit on the shower floor to regain my strength ..... I've had my thyroid out and a pituitary tumour and diabetes and pcos. ..why would it be so hard to wonder about my arsenals or cushings....and i have every single symtom. ..so frustrated right now .....just curious ...did it have you bed ridden?Even to weak to get up and make something to eat no matter how hungry u were?and stuff like that.
Been fight terminal breast cancer for a year. Had a major setback with brain radiation and have been on Dex for months. I've chalked most of my issues to the steroids, welp, now I may have this to add to my list. Just one more "gift" from cancer.
I'm being tested for this. I have a lot of the symptoms but not all of them. I go in for lab work in 4 weeks if they can't find the problem there it's on to the CT scan to check for a pituitary gland tumor I'm very afraid
Rosita if you feel like you're getting Alzheimer's that's a symptom of Cushing's. I lose concentration all the time and wonder sometimes because I get going too fast so I have to slow down and really put extra effort in. I feel very clear at times but if I get stressed, oh boy. I feel like my cortisol is the answer.
Rosita I hope everything work out for you. I want a CT scan because that also checks for pancreatic cancer which takes a person out very quick if not diagnosed early, very early. Michael Landon and Patrick Swayze died of pancreatic cancer. I'm being checked for Cushing's this week. I was diagnosed with type 1 diabetes in 2006 as a vegetarian since 1980. Weird and I knew something was wrong. Now I'm weak can barely get out of bed at times and researched ketones in my urine which came up with Cushing's Disease or Cushing syndrome on YouTube. Look them up. My doctor was ecstatic today when I asked him to test me for Cushing's. What if that's what it's been for the last 12 years. Too much cortisol is responsible for my diabetes?! And responsible for my fibromyalgia because the immune system goes straight for the cortisol overload instead of fighting the pain from inflammation causing fibromyalgia. I've also had chronic fatigue syndrome and if this has been Cushings for the last 12 years, oh my God I hope the tumor is very small if it's there but my neck has been out for two years and I've had physical therapy for 2 years and no help. I can't hardly get my neck to move at times and I get flashes of dizziness from it when I stand up or move around. I'm wondering if exposure to toxic mold would have anything to do with this? We need to research. Cushing's Disease and toxic mold. I will find out this week after 4th of July.
my daughter needs blood work done on january 4th and then she has to go see her endo and neuro january 6th hopefully everything is doing good for her i am so nervous for her I would assume if her tumur came back she would have signs but everything is going great for her she is working full time
+Lori Tumors on/around/in? (sorry, but I'm no native speaker) the pituitary gland are (apart from a very, very small percentage) benign (the good kind, they don't spread). They can be removed if necessary, but only if they're growing / show hormonal activity ...
I ended up here in my research and this sounded so much like me. My chloride was high it was 111 and was doing research and ended up here. I do have a seizures and I have depression. But, I don't know why I would have elevated chloride and it linked me Cushings. I will certainly keep an eye on it and will be speaking to my doctor about it.
I had Cushing Syndrome which is a tumor in the adrenal.
I had a friend who had Cushing disease which is a tumor in the pituitary glandule (which is a part of your brain).
The symptoms can be very similar so that's why it's tricky or find which one it is.
But usually when someone has the Cushing Disease there's some white liquid substance that comes off the breasts.
Kittenpurrrs whenLoved Cushing's disease is when you are having a medical problem that started from inside your body, without you using any certain outside medications that can cause Cushing's disease like symptoms as a side effect. Cushing's syndrome is when you take certain medications for other disorders or diseases you have and then get in Cushing disease like symptoms. So Cushing's syndrome stems from sources outside the body, and Cushing's disease starts from sources inside the body.
I know this is late, but do you also get episodes of very high blood pressure with these symptoms? It could also potentially be a pheochromocytoma, a tumor of the adrenal that causes elevated blood pressure. Addisons or possibly something like this. Addison's makes the BP drop. Hopefully it's nothing as serious as either of these conditions
Hi Melissa, did they have any theories about why it came back? The second time around, will you have radiation treatment instead of the procedure where they go up your nose? Do you think your body's response to stress is what caused it in the first place or do you have any other theories? This post was February, how are you doing now? I was diagnosed in Sept 2013 and had the sinus cavity surgery to remove the pituitary gland tumor in October 2013 in Denver.
Lorraine Rotundo Steele hi! I also had Cushing síndrome and went to 41 different doctors until I found one who wanted to really heal me. Other doctors just wanted to give me medicine for each symptom I had which wasn't going to improve any of course.
I did an MRI with contrast that way my doctor knew my tumor was about 3.5cm. My doctor is an endocrinologist.
Keep looking for doctors who want to heal you!
rachhobson77 ketones were found in my urine which was small amount but I had never had them before in 12 years and my urine sugar level was at 500 very High! I looked up ketones in the urine which took me to Cushing's syndrome or disease. I'm hoping it's just the syndrome and not the disease. With Cushing's disease or syndrome hormones are out of control and Cortisol in high amounts is released into the bloodstream giving the fight or flight response which wears the body down which comes from the pituitary gland and causes diabetes. Stress, high levels , can cause cortisol to release doing the same thing but Cushing's causes ketones in the urine which is the same thing as saying sugar in the urine which is an overload from the blood sugar that the kidneys refuse to hold and disperse back into the body, cell, even with insulin. The sugar has no place to go if it's over 180 mg DL so it goes to the kidneys which is normal to be dispersed back into the body but it doesn't and instead the excess blood sugar goes into the urine. So if your urine smells sweet or tests for ketones, sugar, then you look that up and it takes you to Cushing's Disease or Cushing syndrome which again is an excess of cortisol which can even happen with extreme stress over time. I'm hoping I just have the syndrome and not the disease but my neck is out so bad all the time and I get trimmers from it. And I get very weak and can barely get out of bed some days but I do regardless. I even started walking and that's when I got really weak. I thought exercise would make me better but it didn't. Took me down until I told the doctor today and he was ecstatic. We are doing testing after July 4th, which is tomorrow. Thank God for YouTube or I never would have known.
Im currently doing a 24 hr urine test. I have gained 5 stone in a yr and have terrible stretchmarks all up my legs and up to my groin.i suffer depression and mood swings. I have had terrible tummy n back symptoms which have just bn diagnosed as ibs. My face is more rounded than usual but I dont think I have a hump on my back. I will let you know the results when I get them
Hello, rachhobson77. Just wondering what your test results were. I am curious as to the difference between the urine test and the dexamethasone suppression test. The urine test is the first one done, as that is the easier one, but if that is negative and one still has symptoms? One has to request the dex test, it seems. I hope everything is well with you.
Thank you for sharing I was diagnosed with Cushing's disease in 2010 when I was 22 years old. My tumor was in the pituitary gland, ever since then I've had 3 surgeries because my tumor keeps coming back. I'm now 26 years old and its been 3 months since my last surgery. I'm starting a session of fractionated radiation for 5 weeks.
I have been dealing with what they believe is lupus,fibro,and not sure what else for 4 years now. been on all sorts of meds,and tried many things. since the 1st of nov i have been really ill,and more tired than normal. I was in emer room on the 11th and had low potassium,2.2. I also went to dr about 2 weekes ago cuz of largefluid/lumps around my neck/shoulders. I still am not up to par and feel yuck. I read about cushings and said..yup,I will be calling my main dr in morning. Not sure if this is whats going on. I take steroids and I stopped them cold turkey cuz I was so ill. am thinking this has a lot to do with everything. not sure.
I have Cushing disease. Six weeks ago I had in removed. It was the size of a golf ball. Located on top my adrenal gland. Now I am recovering from it. Its hard with all these meds but I hope in three months I will be back to the normal me.
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