Do you think you have Cushing’s?
I recently received an email from a young woman who is struggling to get tests to determine if she has Cushing’s, but her symptoms point to cyclical Cushing’s. Her story of being bounced from doctor to doctor is all too familiar. In her case, like many others, these doctors won’t commit to additional testing to get to the root of her problems - they attribute her inability to lose weight to poor diet and lack of exercise. Looking at it from the surface, I think just about anyone could give that advice. What’s really frustrating is the fact that these doctors are ignoring the long list of symptoms she’s experiencing. In my opinion it’s a doctor’s responsibility to follow through with their patient’s health care. And if a patient complains of abnormal symptoms, then it’s the doctor’s responsibility to do what’s medically necessary to get to the root of the problem.
Unfortunately we don’t live in a society where our medical professionals can be trusted to be our health advocates. How many doctors did you see before one of them would take the time to listen to your symptoms to understand there was a real problem with your health? How many doctors did you see before you received a diagnosis of Cushing’s? It took me 4 1/2 years and 4 doctors before I was diagnosed with Cushing’s. Although I had finally gotten a diagnosis, the doctor who diagnosed me did know all that much about Cushing’s. In fact, she had only seen one other Cushing’s patient in her entire medical career. And I didn’t know if I had Cushing’s syndrome or Cushing’s disease, I would need to get further testing to determine which one I had. It was then that I realized that I’d have to become my own health advocate. I was scared, faced with a disease that I knew nothing about and had to figure out a way to get myself the best possible care.
For those of you out there who think may be suffering from Cushing’s, I’d like to share some of the information I’ve gathered in my research to overcome this disease. I’m only going to touch on the types of Cushing’s, the symptoms associated with Cushing’s and the various tests you should request from your doctor if you think you might have Cushing’s. What causes Cushing’s will be in a future post.
There are a couple of different types of Cushing’s.
- Cushing’s disease: there is a tumor on the pituitary gland caused by the adrenal gland producing excess amounts of cortisol, which leads to excess amounts of ACTH released from the pituitary gland.
- Cushing’s syndrome: there is a tumor on one (or both) adrenal glands which causes the adrenal glands to produce access amounts of cortisol.
- cyclical Cushing’s syndrome: there a periods of excess production of cortisol followed by normal production of cortisol. Typically there are three peaks of excess followed by two troughs (low peaks).
- Cushing’s disease with a cancerous pituitary tumor: a cancerous tumor develops on the outside of the pituitary gland, which causes excess amounts of ACTH to be produced. This is considered a rare form of Cushing’s.
Here’s a list of typical symptoms of Cushing’s. Some people experience all symptoms associated with Cushing’s, while others experience only a handful.
- severe fatigue
- weak muscles
- dark red, purplish stretch marks
- think skin
- bruise easily
- frequent skin rashes, skin problems
- insomnia
- hair loss / thinning hair
- round face ‘moon’ face
- red cheeks
- high blood pressure
- high blood glucose
- increased thirst and urination
- irritability, anxiety, or depression
- a fatty hump on the back of the neck
- excess disproportionate weight gain / heavy chest and torso, thin arms and legs
If you suffer from any combination of these symptoms, I urge you to talk to your doctor. Particularly if you’ve experienced a sudden, unexplained weight gain. Most doctors initial response will be to eat better and exercise more. Again, if you have any of these symptoms, don’t let them brush it off. This is where you have to be your own health advocate. You have to live in your body day in and day out, every day - they don’t.
‘No single lab test is perfect and usually several are needed. The three most common tests used to diagnose Cushing’s syndrome are:
- 24-hour urinary free cortisol test
- measurement of midnight plasma cortisol or late-night salivary cortisol
- low-dose dexamethasone suppression test
Another test, the dexamethasone-corticotropin-releasing hormone test, may be needed to distinguish Cushing’s syndrome from other causes of excess cortisol.’
I am in no way a medical professional and urge you to talk to your doctor about any symptoms you may be having. My goal is to share the experiences I’ve had in my journey with Cushing’s syndrome and to encourage others to become their own health advocate.
If you enjoyed this post, make sure you subscribe to my RSS feed!
Related posts:
21 comments
My doctor told me I was fat because I was eating too much. When I assured her I wasn’t, she said, “Well, how much Starbucks do you drink?”
I’ll never forget it. I had freaking Cushing’s Disease and she was blaming Starbucks iced venti soy chais.
Hi,
I’m so glad I found your blog today. For the past 10 years I have been back and forth with various Dr.’s. My husband is in the Army so we move a lot, which made it very hard to get an answer from anyone. I was told I had PCOS and that I needed to eat a low carb/low calorie diet and exercie. I’ve been eating 1,400 calories and working out everyday only to gain a pound. My legs are very muscular. I wish I could say the same for my belly!
I can totally relate to the sweating and hot flashes. I dont bruise easily but if my husband rubs my back sometimes it feels like the skin will tear and I have huge stretch marks. I finally saw a new endo. Dr. who actually listened to me today and is running all of the tests again. He agrees it’s probably not PCOS and it’s not my freakn’ thyroid either causing the anxiety attacks. It’s SO frustrating!
I have an adrenal adenoma (3.2 cm) and a pituitary microadenoma. My Dr. in El Paso told me that it was all in my head…. um.ya… literally….
I’m not sure if I want it to be Cushing’s or if I want to hear I just have anxiety and need to eat even less. Just to have some solid answers would be nice!
Please keep posting - you have no idea how much better I felt after reading this!
* Gina - If I gave myself a dollar for every time a doctor told me I ‘needed to eat better and exercise more’ I’d be rich! You’d think doctors would listen to what a person has to say about their own body, right?
Again, it just proves that we have to be our own health advocate - even when our doctors won’t.
* Deb - My heart goes out to you. I wish doctors would get a better grip on diagnosing Cushing’s. I hope that you’ve found one that listens and takes steps to get you a diagnosis - whatever it is. Thank you for reading and I hope you’ve found information that will help you. Best of luck!
Right now I’m being tested for Cushings. I have gained 80 pounds in 2 years and I am on a very strict diet. I asked my GP to test and had no arguments. She has also started the process of getting me into an endo not only for this but I have Diabetes. I would just like to get some kind of answers for all the weird stuff going on. I feel like everyone thinks I’m going completely nuts. Its hard to keep going when you really don’t have anyone who believes you. I often wonder if this is all in my head. Who knows hopefully I’ll find out soon.
* Jess - I’m glad to hear your GP is on board with testing and trying to figure out what’s wrong with your body. You’re one of the lucky few
And no, you’re not going nuts - even though it feels like you are. It sounds like you have a good doctor in your corner, so that should give some peace of mind.
Best of luck in your journey!
Well, I got my results of my blood cortisol level today. It is slightly elevated but she is going to do the urinary free cortisol and the dexamethasone suppression test. So hopefully soon I’ll atleast know for sure whether or not its cushings, if its not hopefully the endo can help me. I am happy I ran on to your site. This is helping lots of people.
I am new to all the tests but I suspected cushings about a year ago. I havent been to the doc in over 2 years and I finally had enough of all the symptoms! I went on the 27 of Feb. and was talking to the doc and told him my symptoms and right away before I asked he said “Cushings” I felt like jumping up because I knew it. Right now they are doing tests, the 24 hour urine and OMG so much blood! I have been diagnosed with hypothyroidism and did you know that all the symptoms of that match some of cushings? Yeah except this darn hump on my back… DUN DUN DUN…… I have every symptom you could think of for cushings except high blood pressure. EVERYTHING!!!!!! I am 25 and I have heard of people trying for 5, 10 even 22 years, before they get diagnosed! I don’t want to be that way… I am waiting on referal in the mail now for the endo. As hard as it is to think of having something I am actually hoping for this because it explains my life!!!! And they can help! I just want to be me again, it’s been soooo long looking at this person that I don’t recognize. It’s good to hear your stories, Thank you.
* Brandi - yeah, I developed hypothyroidism as a result of Cushing’s. From what I’ve heard, that’s not uncommon. I’m glad to hear that your doctor is willing to give you addictional tests to confirm whether or not you have Cushing’s. And yes, one of the down sides from having so many tests is all the blood. Trust me, it’s well worth it.
Good to hear you’ll be seeing an endocrinologist soon because they’re the one who can really help you. I wish you the best of luck in getting the answers you need to get healthy.
Hi,
I am 32 years old and after what seemed to be signs of pregnancy it was determined that I had a pituitary adenoma which is secreting excessive prolactin, but my GH is eleveated and after doing a 24 hr. urine cortisol which came back 104 instead of the normal range of 50, so now 2 MRI’s later a CT Scan which revealed a adenoma in my R adrenal too, and now waiting for another 24 hr. Urine-Cortisol and must do a 2 night salivary cortisol, I am exhausted. I have stopped working out, feel depressed, overwhelmed, and have gained about 30 lbs since January 09. I am going to begin working out this coming Monday, I hope to at least do something different while I wait for the clear cut diagnosis and hope for a healtheir future with or without surgery. Thanks so much for your posts.
Hi,
I am positive I have cyclical Cushing’s. I have an adrenal adenoma. I have all of the symptoms (some of the time.) When I finally got in to see the endo, the symptoms were better, except for my high BP. I have never had high BP before, but they blamed it on my obesity. I gained 16 pounds in one month and did not change my eating habits. The doctors at the Mayo Clinic said I must be eating 5000 calories everyday to maintain my current weight and that I just needed a gastric bypass. I could not believe it! I have NEVER eaten 5000 cals per day in my life, I am actually a person who starves and have been since age 14. I am at a point right now, where I am having bouts of depression, weight gain, high BP, serious fatigue, aching muscles, skin rashes, red faced, hot, cold, head aches, break outs, three week long periods, and sometimes no periods, huge tummy, hump on back of neck area and round face among other symptoms. I am not sure where to turn next.
They did the 24 hr urine test and the pill test, but left it there and said I was in the “Normal” range. They said for me to come back to check the size of the adenoma sometime in the future.
I can’t walk far due to a hip injury, but it has been much worse lately due to feelings of exhaustion, like my legs are just going to collapse. What can I do when the darn Mayo Clinic doctors do not even listen? Prejudice against obesity is what the ones I have encountered are showing me. It is so frustrating! I wanted them to take out the tumor, but they said it was unnecessary. To me, a tumor should not be in there as it is surely causing me problems! I was diagnosed with PCOS too, and I do not think that is what I have, or I could have both. Any advice would be greatly appreciated. Thank you!
Paulette
I found this by looking up “butterflies in stomach”. For no reason at all- all my life I would at time to time experience this. And anxiety attacks. Extremely fast weight gain. Swelling in left ankle. Skinny arms and legs- FAT stomach and big boobs. Since I was 7 years old. Occasionally would go through a period of years that I was slim and had no symptoms. I do not eat enough to be this big. I always thought. I weighed more in 4th and 5th grade than in high school. I weigh more now than the day I had my youngest child nine months ago. Exasperating. No health insurance….unsure of what to do.
Hi my name is Katy & I’m 16 years old, I read your story & I can relate to just about all of it, except the fact I never had a kid.. Anyway about a month ago I went to the doctor with my twin sister & my mom just to get my depression medicine & I told my doctor about the hump & showed her & told her also how I couldn’t wear my hair in a ponytail because I was too embarrased about everyone seeing the hump & she told me I might have cushings and then my sister said something about she also had a hump too & most of the symptoms as well. So the doctor thinks we both have it. So now we have to do the 24- hour urine test, & go back for more testing. The scariest part about all this is I hope I have it so maybe I can get skinny because for my whole life ( so far) I’ve been so afraid of what people were saying about me because i’m chubby.
Hey, I found this blog when I was searching for info about Cushings - I am a 26yrs woman and I am just about to have some tests related to Cushings, it has taken me so long to get this far because no-one has taken my symptoms seriously for years, but I wonder if I really will have Cushings because I am not overweight, I am actually underweight. Is there anyone else out there with this problem? I have the typical weird weight distribution, in that absolutely any weight I put on at all instantly sticks to my midsection while my arms and legs are painfully thin and I can not put any fat on them at all. If I try to bulk up I end up with a pot belly, hips and bigger boobs while my limbs just stay as skinny as ever. I have polycystic ovaries, totally irregular and strange periods, constant sweats and fatigue/weakness that is so intense I can hardly get out of bed some days! Has anyone been diagnosed with Cushings who is not overweight??
I am being tested right now for Cushings. I changed jobs to reduce stress, watch what I eat, am physically active, but feel I am aging at a fast rate. In the last years I keep gaining more weight, slow bowels, thinning skin, hot flashes, fuzzy memory, ugly stretch marks, stupid hump, bloating, and pain in my feet and knees, and lower back. When I first went to the Endo (after having the GP tell me everything was normal) I was being tested for hypo. I mentioned that when my mom died she fit the profile for cushings and was a poster child for cushings. I took my sister with me to verify to the doctor I was a healthy eater and was very active. I believe that helped. I am the same way about finding out. I hope they find something and can “fix” it but then again, who wants a disease! I hate looking in the mirror anymore and struggle to keep up anymore. I also have sleep apnea…..great! I truly am turning into my mother who had mental health issues, diabetes, obesity, fatigue, sleep apnea, heart and lung problems and ultimately cancer. I don’t have mental health issues, I am actually a very happy person as long as I don’t look into the mirror!
Hi all well with tears in my eyes I write this - I relate to every msj. I am fed up with people thinking of me as if I sit around all day eating doughnuts! I have 3 kids, walk the dog twice a day and work 6 days week as hairdresser and yet every visit to GP even for sore throat always refers to my weight and in that case up the exercise! I hate going to doctors as know everything throws back to my obesity! I have most of symptons including the hump and fat gut but thin bum and legs.butfeel a hypocondriac!
I am 18 and I went to the doctor for a check up and he took tests and found out that my cortisol levels were high. He took more tests including the urine analysis and 1 or 2 with dexamethasone-corticotropin-releasing hormone. Apparently both came back negative but I still have quit a few symptoms. Now my doctor wont even hear me out when I tried explaining to him that something’s wrong. He is blaming everything on my “slightly under active thyroid”. Should I keep looking for a doctor who will listen?
I am 42 and after several years changing anti-depressants, blood pressure medicines, diabetes and tremendous weight gain - I have been diagnosed with Cyclical Cushings. I am in a low point taking weekly blood tests and 24 hour urine tests. When they do spike again, my husband and I are going to VA for a petrosal sinus sampling. Has anyone ever gone thru this test? They say that it will confirm a pituitary tumor at almost 100%. I am so looking forward to a post cushings life. This blog has been really helpful. I can sympathize with all of you and will keep you in my prayers - I am convinced that more people have this disease than are ever diagnosed.
* Stacy - yes there a handful of people I know who’ve been diagnosed with Cyclical Cushing’s. It can be very difficult to diagnosed - not to mention drawn out & frustrating. I would encourage you to join our Cushing’s Partner Program so you can talk with others who also have Cyclical Cushing’s.
After several years of very irregular periods, acne, obesity (even though I don’t eat poorly), excess hair etc. I was diagnosed with PCOS and was placed on Metaform for it. I am however questioning the diagnosis. The X ray of my ovaries showed no cysts or hardening of the ovaries which is associated with PCOS. I also have other symptoms such as the ugly hump, heaps of purple stretch marks, round face, hair thinning slightly mainly at the crown, raised glucose levels and a body shape similar to this diagram: https://courses.stu.qmul.ac.uk/smd/kb/resources/endocrinologyresource/syndromes/cushingssynd.htm
Tests untaken also concluded a had a sluggish liver (is this associated with cushings?)
Does it sound more likely that I have cushing’s rather than PCOS? My endo. which I stopped seeing as he wouldn’t listen to my other concerns, wouldn’t try alternative treatments as the metaform made me sick every morning (my mother said it was like i had severe morning sickness and tummy pains EVERY morning) and all he would say when he weighed me each visit your weight is stable, and that I had to eat less and have to exercise more despite me sticking to my low GI diet and exercising an hour each night and 2 on weekends. Basically he charged me $180 for a 15 minute session where he insulted my weight and attempts at progress, I would leave feeling like a failure and depressed despite my efforts.
Could someone please help me should I get a second opinion? Also would I have to go to a GP for a referal or could I just book into another endo. it’s been about 2 years since my last visit to my old endo.
I really need some advice I am kind of scared and my family aren’t that supportive, my mother keeps putting off taking me to the doc again (i dont drive yet)
Hi all, well i have been reading all your posts, and i had some blood work done a week ago and everything came back fine apart from one which was abnormal, yeah you guess it, my cortisol, my doc said it was a tiny bit over so they wanted me to do another test, which is fine. she said that it can cause cushing disease but she said that she dont think that i have it, which i hope not, but i am paniking here cause i have never heard of this before in my life, i feel sometime fatigue, have put some weight on and suffered with Anxiety, but i have nothing else to show everything seems fine (touch wood). i dont have skinny limbs or high blood pressure. I am hoping that my blood work comes back as normal next week, im just so scared, and now reading these forams i dont feel alone
Good luck to all and i will keep posted and see how everyone is doing 
They found an adrenal adenoma and so far I have had 2 UFC’s, 2 x blood cortisol, full blood count, cholesterol and an ACTH blood tests. All are normal except for the cholesterol.
I have all the symptoms of Cushings. Hump, striae, facial hair, exhaustion, hair loss, high BP but yet the tests are all normal.
I have decided to give up the quest to find out what is wrong with me. I just dont have it in me to fight for a diagnosis. The doctors can see there is something wrong but then I get told I need to see another doctor with more experience, yet they cant figure it out either.
So I am having the adenoma removed and hopefully things will be ok
Leave a Comment