Cushing’s Disease
I’m living proof ~ you can life without a pituitary gland
Cushing’s Suppport and Research Foundation
www.csrf.net
Cushing’s Disease It sounds as though it should be something soft or fluffy; something that would be okay. I’d never heard of Cushing’s Disease until January 26, 2007.
That’s the date my endocrinologist recognized several physical characteristics in me that were typical of patients with excess production of the hormone cortisol, a constellation of symptoms referred to as “Cushing’s Syndrom.”
By February 2, I was undergoing a CT and MRI scan for a possible tumor on the pituitary gland. I was scared and it didn’t take me long to realize that “Cushing’s” is not soft or fluffy.
I underwent two surgeries at Cedar’s Sinai Medical Center in April and June of 2007. The second surgery removed my entire pituitary gland. For more information on my Cushing’s experience go to www.nursing.advanceweb.com (for Nurses and search under Kathie Harrington. The article was posted on 9-18-08 and is titled “Cortisol, Cushing’s, and Me.”) www.rehabilitation-director.advanceweb.com (for Rehabilitation Directors and search under Kathie Harrington. The article was posted on 1-20-09 and is titled “The Undiagnosed Truth.”) Another article about my experience with language processing post surgery is titled “Language and Processing Problems with Cushing’s and What to do About Them.” This is posted on the CSRF site with a search under Kathie Harrington.
Characteristics of Cushing’s Disease ARE:
- Abdominal Weight Gain
- Hypertension
- Poor Concentration
- Irritability
- Acne
- Poor Short Term Memory
- Excessive Hair Growth
- Red, Ruddy Face and Neck
- Extra fat around the back of the neck (buffalo hump)
- Round Face (moon shape)
- Fatigue/Muscle Weakness
- Menstrual Irregularity
- Stretch Marks on abdomen/thighs
- Insomnia
- Balding
- Hip and Shoulder Weakness
- Swelling of feet/legs
- Excessive Hunger
- Excessive Thirst
- Frequent Urination
- Diabetes
- Depression
Cushing’s is rare and most often found in women between the ages of 20 and 40 (I am not within that range!) Cushing’s can also occur during childhood.
With my surgeon at Cedars Sinai Medical Center. Two weeks after my surgery, he announced, You are cured of Cushings Disease.
On Hollywood Blvd. with surgical markers on my face before surgery #1. As you can see, I did not look at all out of place!
Hey Kathie,
You sure have been through alot and you’re not worse from the wear! You are a wonderful loving lady and am glad we are friends:)
Love, Melissa
I find myself crying as I read your blog. I too suffer from cushings disease. I had surgery to remove the ademoma at Mayo in April of 2007. I have not had an easy road & have had numerous complications. I am now noticing the symptoms returning & I fear having to go through all of this again. It’s hard to communicate to others that do not have the disease, what it is like to live with this disease, wondering what damage has been done, & if it will return. I am grateful that I have found your website & think it is wonderful that you are bringing more awareness to this disease.
Lisa
Lisa,
I am so happy that you found me and I have approved your comment to be posted.
You are right, nobody knows what we have been through and I hope they don’t have to. Mayo is a good hospital and that counts for a lot. I, too, went to a great place, Cedar’s Siani at the same time you were at Mayo.
I desperately hope that your Cushing’s is NOT coming back. I thought that I was having some reoccurances but my endochronologist did a 24 hour urine and found that my cortisol levels were right where they should be. That was a relief. I do still have a redish neck that bugs me. I’d recommend that you get tested right away so that you don’t sit there and worry about it.
I was told that it would take me a complete three years to be back to normal. I’m doing wonderfuly well considering that I am now 60 years old and that is way older than most Cushing’s patients. I gained some of the weight back and am trying to deal with that. I still have some issues but feel lucky.
What kind of issues are you still dealing with? If I can be any support I’d be honored to.
I’ve written a lot about my Cushing’s experience and I believe that’s helped me a lot. I’ve found friends at the ADVANCE Magazines for various medical professionals and they have published a number of my articles.
I wish you well, Lisa. Get tested and think positive every day. I try not to think much of Cushing’s unless I have to and I find comfort in my faith, friends, and family. Do smile, hey, remember that we’re the lucky ones for having had the diagnosis at all.
–
Kathie Harrington
http://www.kathiesworld.com
Kathy,
My daugher Katie was being treated with growth hormones because she had not growen since 4th grade. She is 16 yrs old now. We just found out that she has cushing disease. A tumor on her pituitary gland. She is now going to have a procedure called Petrosal Sinus Sampling this Tuesday, 4/14/09. I do not know anyone that has had this disease or even heard of it. We live in Minnesota. When we get the results back from this procedure, the Dr. will be scheduling surgery for her at the Mayo Clinic in Rochester, MN. I am scared, but yet, I can’t let her know. I have to be strong for here. Do you know of any other parents that have gone through this with their child? What will be the out come? Will she lose weight, the stretch marks, the facial hair? With the growth hormones, she did not grow. Her pediatric endrocronolist said that after 2 1/2 yrs, that they did not work. All they did was close up her growth plates. She is happy with being 5’4″, but she gains about 20lbs every three months. Yes, we met with a dietitian, and she said that Katie was eating just fine. Nothing to worry about there, that was in early 2008. I would like some support from someone? Can you please help me? I am so mad at the first doctor for not testing her cortisol level and watching it. It was high back in 2007 when we started seeing her, but because she did not have high blood pressure, she did not even consider it. I am just so frustrated.
That you for listening to me.
Sandy
Hello kathy,
I was recently diagnosed with Cushing’s Disease n Nov 2008 after a screening MRI for a family history of brain aneurysms. No aneurysim however I did have a 1 cm adenoma on my pituitary gland. The explanantion for my inability to lose weight despite a strict diet and active lifestyle, my type 2 diabtes, increasing blood pressure, buffalo hump, and the tell tale sign for my endocrinologist the supraclavicular fat pads. My 24 urine cortisol came back at 4 times the normal level. Six weeks ago I had transphenoildal surgery to remove the tumor and have begun my recovery, they are fairly certian they got a cure. Testing in the next few months will tell. I feel realy miserable from the cortisol withdrawl even on replacemtn therapy they say this is a good sign. Already you can see the differencein my face, I have lost 11 lbs and my diabetes meducation is reduced. I am excited to see what the next year brings! Tannis
After reading through the article, I just feel that I really need more info. Could you share some more resources please?
Kathie,
I came across your site tonight while once again searchng Cushing’s. If anyone is interested, there is a good support group on this site http://www.cushings-help.com/intro.htm
I found the message board there when looking for a diagnosis for my son, then daughter, then husband. Yes, they all have Cushing’s. Although, I guess my kids don’t anymore because they recently had a BLA.
Kathie, thanks so much for your email about your blog. It’s so good to get the word out about Cushing’s.
When I was trying to get diagnosed with Cushing’s about 25 years ago there was no Internet, no easy access to information other than medical texts in the public library.
I’m so glad that this is changing now and patients have access to support and are able to meet with, and talk to, other patients and people who understand.
Best of luck to you and everyone going through this terrible disease!
Kathie,
This is probably going to sound weird, but I really want your opinion on my ‘case’ as I am going to call it in this comment.
I have no idea how to structure this, so here goes nothing.
I’m 16 years old, 5’4”, 197 pounds. I feel awful, I really do. I have stretch marks everywhere you could imagine minus the front of my legs, my forearms, and few other places. I have fatty deposits right next to my shoulders, which I believe could be supraclavicular fat pads, between my shoulder blades, which I am thoroughly convinced is a buffalo hump because no one I know [even the overweight people I know] have it. Ever since I was a young child I’ve gotten severe headaches, and even though they lessened in quantity over a couple of years they have come back with a vengence. I get them almost every day now and nothing helps. I have excess hair all over, and it aggrivates me to no end because nothing I do can help, it makes me feel gross and ugly because I’ve recently found it growing on my chest, and it’s all black not fine and blonde like everyone’s normal baby hairs they have everywhere, I feel like I’m turning into a man. I’ve lost track of how much I’ve gained overall, but just since the beginning of the 08-09 school year I’ve gained about 40 pounds. I know I’ve gained a lot more, because when I ended 6th grade I was mid 120′s, and when I started 7th grade I was mid 150′s. My periods are very irregular, they can happen exactly a month apart or I’ve even gone up to 13 weeks without a period. They never really bothered me before, but now they’ve become harsh, sometimes I can hardly concentrate and do little more than wait for it to be over. My muscles are so tired, I just want to lay down and go to sleep for days some times.
I went to the school clinic to get blood tests, thinking I had hypothyroidism because a history runs through my family. When the test turned up negative, I became even more frustrated. Here’s where the weird part comes in: my school clinic ran up a full scan of blood tests, and it turned out that everything was SEEMINGLY PERFECTLY normal, I say seemingly because I know they come out with false positives/negatives all the time. They then referred me to a nutritionist who had me keep a food/activity journal for a week, and it was again normal, even the nutritionist said it was a mystery.
Also, recently my vision has been having problems. I go in and out of focus, theres a lot of times where it’s looked and felt like I have something in my eye affecting my vision but nothing will be there.
I’ve had a splitting headache that’s lessened to a bunch of pressure, but has not completely gone away for more than an hour at most, and I’ve lost count on how many days I’m going on, I only know it’s more than 5. I’ve had a horrible sleeping pattern, which began suddenly two years ago. I’m ALWAYS tired and frequently took 2-4 hour naps after school even after getting 6-9 hours sleep the night before.
I’ve tried to be as thorough as possible with this, and I feel this is all I can recall right now.
Please, help me. I’m really begging you. I don’t feel normal, I’m not happy, the doctors I’ve seen all give me that look like they think I’m making it all up to get attention, saying it’s worse than it is, or I’m just trying to diagnose myself when I come up with things like hypothyroidism, and that I just want an excuse not to get more exercise.
Do you think this could be Cushing’s Disease? I want to go to a doctor and have them test for it, but I don’t want them to just give me another physical and write me off like they always do. I’m scared, I keep getting bigger and nothing is working, I just want to be normal.
Thanks for reading, hopefully you can help me, or atleast offer some advice.
Nicole, here is my phone number. 702-435-8748. Because of your age, 16, I’d love to speak to you and to one of your parents or caregivers at the same time. I will be most happy to pay for the phone call. YES, I will help you all I can. I have several suggestions, the first being that you make an apt. with an endochronologist. This is the kind of doctor you need to see immediately. Let me know your phone number as well. I hear you. I believe you. I will try to help YOU. Kathie
Thank you so much Kathy for taking the time to talk with me by phone about Cushings. You made me feel a lot more confident and I am very grateful. I will keep you informed of my progress in fighting this disease.
All the best.
Mike
I get sooooo many E mails and phone calls from Cushing’s or possible Cushing’s patients ~ it is unbelievable ~ and my heart goes out to all of you. My best advise is to get immediate medical testing from qualified physicians. Surround yourself with knowledgeable and good people both professionally and personally. Don’t wait ~ do it NOW! Give me a call or send me an E mail. I’m with you!
Dear Kathie,
Thank you for sharing your story. I am just now learning about Cushing’s disease. I have reason to believe that my daughter has it, and I feel there is a possibility that I might have it as well. My daughter’s doctor has ordered a blood test to check her cortisol levels. Ashley turns 17 this month and she is 225 pounds. She is only 5’1″ even though I am 5’4 and her father was 5’10″. I think that this disease stunted her growth. She has irregular periods, some facial hair (not a ton), her regular hair grows extremely fast, she has weird stretch marks, her face is very round, and she has many other symptoms of Cushing’s. The doctor is also testing her for hypothyroidism and diabetes. I am so concerned for her health. She is such a beautiful girl. Her weight gain began in earnest in the 8th grade. She gained the most in the 9th grade. 50 lbs in just 4 months. She watches what she eats and yet she is still gaining. Any suggestions or information you have would be greatly appreciated. Her doctor ordered a “non-fasting” cortisol test, but I think the fasting one would be more accurate. What kind did you have? Thank you for your time and for reading this.
A concerned mom in Tucson,
Launa Jones
p.s. The reason I think I might have it is because I weigh 250 lbs, I am only 5’4″, and any attempts at weight loss have been futile. The lowest I have ever been able to get to since having my children has been 195. And I had to work out at a gym 5 days a week and eat like a bird just to get to that weight. I am going to get my daughter checked out first, and then I can look at things for me.
Hi Kathie. I read your story with interest. Like Laura, I am convinced my daughter has Cushing’s. As a child she was very thin, and at the age of 16 began to slowly put on a bit of weight. Then came stretch marks, first appearing on her legs, but she had not put on weight there. She started to suffer from depression, even quitting school, although she was a brilliant student. Her face is very round, and she had a buffalo hump. Bad insomnia and is really sad.
She is now 22 and weighs about 224 pounds. First end said she should exercise more and eat less, and did no testing! Last year they tested again, but the cortisol levels were normal they said, so they reckon she doesnt have Cushing’s. So what can it be? I just want my lovely, happy daughter back again. I would appreciate your advice as what to do next. Her GP has said she will not refer her again to be tested for Cushing’s and that we should draw a line under that.
Jacky, it might or it might not be Cushings, but regardless, THERE IS SOMETHING WRONG. I have several suggestions for you and for the many people who write to me about this same problem of physicians not listening or wanting to refer:
#1 Find a new physician (see if your insurance will cover if you make an appt. at an endo. by yourself – ask their office)
#2 Copy the list of characteristics of Cushing’s from my site or go to the Cushing’s Foundation ~ check mark all of those
characteristicts that you see in your daughter
#3 Know that there are other conditions that can have these symptoms as well. Your daughter is at an age where Cushing’s and most of these
occur. I was older but that is the exception.
#4 You and your daughter know yourselves best ~ remember that ALWAYS.
Jacky, from what you are describing, other than the high cortisol testing, I am seeing signs of Cushing’s. Now, how was this cortisol tested? Some ways are better than others. The lab could be wrong. My own daughter had a high cortisol test with the 24 hour urine a few months ago (a scare to us, of course) She is having that retested this month. Since no other factors have shown up we suspect an error of some kind.
Jacky, and other friends ~ we all want to put faith in our doctors ~ they work hard and we need to trust in them BUT, their nickname is not spelled GOD! You know what is going on. You care and love your daughter. If this doctor won’t do it for you, find one who will and do it now. Time is important with Cushing’s.
My heart and my mind are with you, Jacky and daughter. Have courage. Say what you must. Do what you need to do. Be strong. Seek answers – together – hand in hand, you’ll find them.
My very best in thoughts and prayers,
Kathie
Hi Kathie, thanks so much for your reply. It is such a comfort to know that I’m not alone in this Cushing’s nightmare. From what I have read, lots of people are going through the same frightening journey. We are just going to keep on until we get some answers, as something definitely is wrong, and they just allow people to go on living their lives with all these health problems were normal!
I will keep in touch with you. I am trying on desperately to hang on to my sanity, in case the doctors think I am paranoid. Take care. Jacky.
I appreciate you spreading the awareness of this uncommon disease. I am 22 now,but I was diagnosed when I was 16. After 1 surgery and radio active therapy I finally got back to my pre-cushing weight,and now that I have had my first son a year ago this month I am starting to see some symptoms again. While going through all this I was in high school. I was 16 years old and working one day and woman asked how far along I was,the excess belly fat made me look pregnant! I was so ashamed,and I was even home bound from school,so I didn’t attend classes. It was truely hard to deal with!
Yes, this is an “uncommon disease” and I guess we are just the lucky ones. You are more in the age range for it than I was. It is very unfortunate that someone made that comment to you but don’t be ashamed or discouraged, they didn’t know and the were not trying to hurt you. Get right back up on that horse of life and go to classes, be a part of what you need to ~ live. I do another, just for fun, blog, called On the Road with Humpty Dumpty. The whole idea of it is to get off our wall and live. Check it out sometime at http://humpty-dumpty.kathiesworld.com. He’s a guy who got the bad end of the deal but made the most of it. Hang in there, be brave, do your best and you’ll be just fine. Send me a pic of your son and you ~ my, you have so much to be proud of.
Hi Kathie and everyone
reading all your stories has been a great comfort to me. Im a 27 year old woman from the UK and am currently undergoing a million tests in an attempt to discover what is wrong with me. ive felt ‘unwell’ since i was 11 and have been to see my doctor countless times for infections depression weight gain and sleeplessness and been told its all in my mind or because i had glandular fever when i was 15. in the last 2 years i have managed to convince my doctor to run tests which showed a high cortisol level (830), low growth hormone levels and lots of other things. i have since been sent to see 3 endos who have given me the following diagnosis’ – 1st – took one look at me and said yes you have cushings disease lets do an CT scan to find your tumor , then when no tumor could be seen he said i must have ME, – 2nd I think you are insulin resistant because you can get up from a crouching postion without the use of a chair to hold onto lets run some tests. – 3rd i think you have several problems but you cant diagnose cushings using a CT scan lets run some tests.
I am sick to death of having blood taken and peeing into plastic bottles.
my symptoms have gotten much worse over the past 2 years. ive gained over 40lbs in less than 3 months i have a big round face and a buffalo hump, im incredibly depressed, ive not slept a full night for years and its now been at least 1 year since my last period. ive also been diagnosed with spinal and rib fractures. i am also (as a final indignaty) losing my hair.
Cushings seems to be even rarer here in the UK and im really finding things so hard at the moment. Everyone that i see has a different opinion but dont seem to have any idea on how to fix things. Also noone here seems to know that much about the disease. my latest endo hadnt even heard of a pars fracture of the spine and seeing as its a symptom of something he supposedly diagnoses and treats that has me a little concerned.
im sorry to rant but i really have reached the end of rope and am contemplating going to my doctors and crying in the reception till someone helps me. Does anyone know of anyone in the UK that could help me or what i should say at my next appointment rather than just threatening everyone in sight due to lack of sleep
Thanks
Eleanor, I read your comment with such saddness. Please don’t ever stop trying to find a doctor to help. I know nothing of doctors in the UK but I do know that people are people and that there has to be someone out there for YOU. I write and share because I want and have to give people HOPE. This is not in your head. Take pictures of yourself to doctors before you noticed all of the symptoms you talk about – if they don’t listen ~ show them. Take a list of the symptoms of Cushings ( on my site or on the Cushing’s site) and highlight those symptoms you feel that YOU have. Call a local agency of some kind and find out the name of someone else who has had Cushings and ask them where they went, what they did, who they saw. Find a Pituitary Center at a very good hospital in the UK.
I’m soooo glad that you found my Kathie’s World. Cushing’s is not fun but YOU can beat it. You can do it. You’re so lucky to be just 27 years old, like Michelle, in my article, you are young and have so many wonderful years and adventures ahead of you. Go for it girl. Check back in with me.
Hi Kathie,
I was thrilled to find your page as I was doing some research on Cushings. I am 45 years old, and feel like I have already dianosed myself with Cushings. The only problem is, getting a doctor to do it. In my mid 30′s I was diagnosed with thyroid issues (hypo, and Hashimoto’s). In my early 40′s I have POF (premature ovarian failure). Around the same time, I started lactating for no reason. An MRI was done, and they found I had a micro-adenoma on my pituitary gland. The doctors decided to leave it an monitor it every 2 years with MRIs. In the meantime, during the last year and a half, I have gained close to 30 pounds (just on my trunk). My arms and legs are thin. My whole face has changed – its puffy and round. I’m losing my hair on the sides. I have osteopena, pre-diabetic, very difficult time concentrating – almost like brain fog. My cortisol test always come back normal though, so the doctors ignore my symptoms, and go by the test alone. I can’t lose a pound – I eat right, work out – but I keep gaining. Do you know if a pituitary tumor can cause a false negative on cortisol test? Do you think I should push for a 24 hour urine, or a saliva test instead? and lastly, do you think my symptoms sound like Cushing’s to you? I just want to get some kind of treatment so I can have my life back.
Your symptoms do sound like they could be Cushings. I certainly would request a 24 hour urine test. (I call it the tinkle test). What could it hurt. There are some other things it could be. First of all get yourself a great endocrinologist – that is a necessity. If it is not Cushings, it certainly is something and you need to find out what is going on with your body. Don’t give up. It’s been four years since my surgeries and I’m still in a flux of change with my meds all the time. Yours is not the first letter that I have received telling me that doctors don’t listen to their patients. Find one who does. It could also be on your adrenal glands instead of your pituitary. My very, very best to you. I was certainly well past the age of being diagnosed with Cushings at this time in my life too. (usually in the 20′s)
Hi I am in las Vegas with my fiancé for a conference for his work and have been in my hotel room with terrible lymph and muscle pain since Friday (it’s Monday). We don’t know what’s wrong with me but I figure I’m in Vegas for a reason. I thought I’d put the leg swelling and all ramping to rest after starting insulin but it’s reared its head again. I’ve been drinking water and anything with minerals/electrolytes and super foods and swelling down some but it’s not normal. I wonder if you could look and tell me if I look like a person w cushing? I’ve been sick 20 yrs and at the end of my rope… Is there a cushings knowledgeable doc that’d see me this week in las vegas? I have lumps all over and my fiancé has been doing amateur lymph massage and trying to get the knots out but it’s slow going. Also on baclofen and diazepam but it’s short lived. Basic cushings tests normal but not seen an expert per se. I’m 40. 20 yrs is a long time sick w no answers.
I’m here until my flight leaves Saturday 6/16
Erika, I just got back in town and looked at my Kathie’s World and it’s 9:30 PM on the 16th. WHY have you not seen an endochronologist in all this time? My goodness that is the first place to go. You must find somebody who is knowledgeable about Cushings and disorders that are also related. I simply don’t know what to say but to change doctors. You may or may not have Cushings but there is something terribly wrong and you need medical assistance. My very, very best to you, Erika. I’m sorry to have missed you.
Thanks for the reply. It’s a long story but when I first had my symptoms internet was just starting and Windows 3.1 was out and i was just out of college and dirt poor working as many jobs as i could get in a recession to make ends meet. I was going to endos and flying all over to thyroid specialists etc. pretty much the endos just mock me. Even the ones i went to in the early yrs just think i got fatter over the years. Recently I lost some weight for first time in nearly 20 yrs but it happened when i was put on insulin. They kept arguing and saying I must have been changing diet because insulin makes you gain. Then was told i should be on a nutrition poster because im so healthy and lost weight so fast. I’ve also had other medical issues in between 6 biopsies on 3 organs total and a near miss with uterine cancer which involved several months treatment plus nursing the myriad of other symptoms while working full time and single. Financially in a better place and now there is good info on the web. It’s been one hit after another. For a while it was Impossible to get off from work and I couldn’t force the issue out of fear of having no insurance.
I was set to see one of the gurus of cushings but my fiancée lost his job right before we were set to go and judging by my level of incapacitation from the Vegas trip I just can’t by myself. There are no gurus in my area or within easy distance. Plus ive been told by some of the better doctors that ima medical enigma and so obviously not an easy or even close to it diagnosis.
So now I have to wait for him to earn vacation time and try again in 3 months. just had my last biopsy on a thyroid goiter and was waiting on those results to see if cancer and need surgery. I get severely dehydrated and have major muscle spasms so I have to have mineral water at my disposal and that’s heavy to carry. It’s a lot of things. I’m on a new anti-inflammatory for the joint-bone-muscle pain /issues kind of like rheumatoid arthritis but when my regular doc scheduled the appointment the rheumatologist canceled it sight unseen. And the last one said the knots on my hands were fat. Yes apparently fat hurts too.
My mom just said she might be able to go with me but she’s nearly 70.
And it’s been one situation like this after another. And pretty much people just think I’ve let myself go and it turned out all my many friends were all shallow and just liked me when i was skinny and pretty.
but I’ve just been bombarded with one hit after another. And the pain is horrible for weeks then stops (last 2 weeks) then I’m exhausted like war was waging in my body. I saunad last week and it helped immensely. It is also hard to concentrate when in pain and when exhausted to stay awake. Work is draining as well but I have to keep it for insurance etc