Cushing's Syndrome Support Group
Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going...
I will try to make this short and sweet, but my journey has been a long one so far. I have been a dancer my whole life, and in really good shape. I studied exercise science in college, and I am applying for schools right now to be a dance team coach. So there is my background... I exercise and I eat healthy, but my body is doing crazy things and I can not seem to make it stop.
When I was 19 years old I gained 95 pounds (yes 95 pounds) in 6 months. I was still eating the way I usually do, and dancing on average 4 hours a day. I developed really dark purple stretch marks all over my tummy and my hips. My weight began to just accumulate around my belly, and I seem to always look like I am pregnant now.
I developed excessive hair all over my body, and I also started to have the heaviest longest periods of my life. My emotions became very disturbed, and at times I can be very depressed and anxious. My face gets really red, and it is now round compared to what it looked like before. I also have a nice lovely fat pad on the back of my neck, and it gets in my way when I try to hold my head just normal and upright. I bruise easily, and any cuts or bruises take forever to heal. I have no sex drive, and no desire to even talk to people. In addition to the fact that my whole body hurts all the time, and I feel like my own bones can not even hold me up anymore. My body also swells really bad, and there are days where I can not even wear my wedding ring because I can not get it on, and then there are some days where it will fall off.
I tried every diet there is, and I even began working out more in hopes that I could control what was going on...nothing worked...
I went to a doctor when I was 22 to see what was going on with me, and he ran some test, did some ultrasounds and basically told me that I had PCOS. But none of my labs actually showed that I had PCOS, and my ultrasound did not show any cysts on my ovaries. My gyno referred me to an endocrinologist for treatment, and she took one look at me and said I think you have Cushing's.
This dr. was wonderful, she made me feel like I was going to get answers. She ran tons of labs every few months, and all of them came back normal. She was just as stumped as I was, and could not understand what was going on. From her own words she said that I have every symptom of Cushing's, and I appear to have Cushing's, but none of my labs ever showed proof so she would not do any imaging like an MRI to see if she could find where the problem was. Her best answer was that maybe I had cyclical Cushing's, and that that is almost impossible to diagnose. After this happened she took a job at the mayo clinic, and left me with no answers.
I gave up on finding out what was going on with me for a couple of years, because each Dr I talked to made me feel like I was an over indulgent fat girl who did not know how to eat or exercise. I hated this so much, and I truly believed that most doctors do not actually dealing with difficult cases.
Fast forward to now, I have been working with an ENT for some thyroid issues (my labs and hormones are fine, but there is a nodule that is my problem child right now) so I have had to get biopsies, thyroid scans, ultra sounds...the works...every few months. I am showing all of my Cushing's symptoms again (they come and go, like my stretch marks like to fade and then darken at various times).
I got my general doctor to refer me to an endocrinologist, and I just went to visit him and he also took one look at me and said something is not right here. He agreed that whatever I have going on is not normal, and no amount of exercise or dieting is going to fix it. He requested a ton of labs (they get a lot of blood from me on my lab days), he requested 3 midnight salivary tests, and a steroid suppression test. He said in passing he would like to do an MRI regardless of my lab results (because I told him that all of my tests keep coming back normal), but when I called his office to ask about my MRI referrals the nurse said that the dr never put that in his notes... so I am disappointed once more.
I am at a loss of words about what is going on with me, and I am depressed, moody, violent, sad, anxious and I have a fear that I will never get this figured out. My whole family thinks I am crazy, and they do not understand why I keep chasing a diagnosis, but my life is miserable. I am in pain all the time, and I am so ready to know what is going on. I just hope they figure it out before I reach 300 pounds ( I am 280 now, and in 2 months I gained 30 pounds again) so I am fearful of what may happen to me if I do not get answers.
Do you think I have Cushing's? I am going to try to post some pictures for you to look at under my profile so you can get a visual.
Also, does anyone know of any good dr's who will listen in North Texas?
Thank you for your time.
When I was 19 years old I gained 95 pounds (yes 95 pounds) in 6 months. I was still eating the way I usually do, and dancing on average 4 hours a day. I developed really dark purple stretch marks all over my tummy and my hips. My weight began to just accumulate around my belly, and I seem to always look like I am pregnant now.
I developed excessive hair all over my body, and I also started to have the heaviest longest periods of my life. My emotions became very disturbed, and at times I can be very depressed and anxious. My face gets really red, and it is now round compared to what it looked like before. I also have a nice lovely fat pad on the back of my neck, and it gets in my way when I try to hold my head just normal and upright. I bruise easily, and any cuts or bruises take forever to heal. I have no sex drive, and no desire to even talk to people. In addition to the fact that my whole body hurts all the time, and I feel like my own bones can not even hold me up anymore. My body also swells really bad, and there are days where I can not even wear my wedding ring because I can not get it on, and then there are some days where it will fall off.
I tried every diet there is, and I even began working out more in hopes that I could control what was going on...nothing worked...
I went to a doctor when I was 22 to see what was going on with me, and he ran some test, did some ultrasounds and basically told me that I had PCOS. But none of my labs actually showed that I had PCOS, and my ultrasound did not show any cysts on my ovaries. My gyno referred me to an endocrinologist for treatment, and she took one look at me and said I think you have Cushing's.
This dr. was wonderful, she made me feel like I was going to get answers. She ran tons of labs every few months, and all of them came back normal. She was just as stumped as I was, and could not understand what was going on. From her own words she said that I have every symptom of Cushing's, and I appear to have Cushing's, but none of my labs ever showed proof so she would not do any imaging like an MRI to see if she could find where the problem was. Her best answer was that maybe I had cyclical Cushing's, and that that is almost impossible to diagnose. After this happened she took a job at the mayo clinic, and left me with no answers.
I gave up on finding out what was going on with me for a couple of years, because each Dr I talked to made me feel like I was an over indulgent fat girl who did not know how to eat or exercise. I hated this so much, and I truly believed that most doctors do not actually dealing with difficult cases.
Fast forward to now, I have been working with an ENT for some thyroid issues (my labs and hormones are fine, but there is a nodule that is my problem child right now) so I have had to get biopsies, thyroid scans, ultra sounds...the works...every few months. I am showing all of my Cushing's symptoms again (they come and go, like my stretch marks like to fade and then darken at various times).
I got my general doctor to refer me to an endocrinologist, and I just went to visit him and he also took one look at me and said something is not right here. He agreed that whatever I have going on is not normal, and no amount of exercise or dieting is going to fix it. He requested a ton of labs (they get a lot of blood from me on my lab days), he requested 3 midnight salivary tests, and a steroid suppression test. He said in passing he would like to do an MRI regardless of my lab results (because I told him that all of my tests keep coming back normal), but when I called his office to ask about my MRI referrals the nurse said that the dr never put that in his notes... so I am disappointed once more.
I am at a loss of words about what is going on with me, and I am depressed, moody, violent, sad, anxious and I have a fear that I will never get this figured out. My whole family thinks I am crazy, and they do not understand why I keep chasing a diagnosis, but my life is miserable. I am in pain all the time, and I am so ready to know what is going on. I just hope they figure it out before I reach 300 pounds ( I am 280 now, and in 2 months I gained 30 pounds again) so I am fearful of what may happen to me if I do not get answers.
Do you think I have Cushing's? I am going to try to post some pictures for you to look at under my profile so you can get a visual.
Also, does anyone know of any good dr's who will listen in North Texas?
Thank you for your time.
There are unfortunately only a few endocrinologists in the country who specialize in cushing's.
Ive exercised and eaten healthy food since I was a teenager, now I'm 30. I am gluten free, don't eat processed foods, only drink water and juice, workout, yoga, walk, run, dance, ballet and swim daily. also had a doctor who finally said "something is wrong" after decades of feeling like nothing I did made a difference. After being my family doctor for years she began to help me with Cushing's but then left the country for medical missionary work.
She tested my adrenaline and told me I had Cushing's. Several years later and I'm still seeking a formal diagnosis - going in for labs with the endocrinologist soon.
I say all of this to let you know that you are not alone.
Regardless of the many health problems and symptoms that seem linked to Cushing's ... the worst part for me is that I constantly feel betrayed by my body. When I mention I just got done at the gym people look at me like "yeah right!" I want to wear a sign that says I have a rare disorder that makes me gain weight. Even my own family comment on how I look different or they don't recognize me from month to month. When I'm thin people are nicer to me. When I gain weight I become depressed and I can't tell which is feeding which. I feel like an athlete in a lazy persons body. My appearance does not reflect my lifestyle and it's directly effected who Ive become by undermining my confidence and self-esteem.
This is my first day on @dailystrength and reading your post made me feel less alone. Thank you for sharing.
Some other symptoms I suffer that I didnt connect to Cushing's until recently:
·Vascular problems (surgeries to remove my greater saphenous veins, varicose veins since adolescence)
·Black hair on my stomach and breasts since puberty
·Stretch marks since adolescence
·terrible insomnia
·The ability to go weeks without food or sleep
·Having a double chin even when I'm thin
·No matter how tiny the rest of me becomes I have an overhanging gut
Have you been tested for PCOS?
Go see an endocrinologist and describe the problems you have been having and ask that they investigate both PCOS and Cushing's syndrome. For Cushing's syndrome a midnight salivary cortisol test or a 24 hour urinary free cortisol are the best diagnostic test. Any blood test done in the office is not helpful.
Dr. Christine Yedinak, at OHSU in Portland, Oregon ( look up their websit) has been a tremendous source of support, knowledge and treatment for me. The last thing I want to mention is that we went from dialogue to action in my case following my dye contrast MRI that showed a tumor in my pituitary.
I too was an athlete so I know what it is like
When you try to tell your doctor you exercise frequently and eat well but yhey dtoll recommend you go on a diet
Yeesh
Keep getting tests, and please avoid any
Dexamethasone tests,
If you have a pituitary tumor
Dexa tests can make it worse
Good luck, I'm in your corner