Comments on: Cushing’s Disease http://www.kathiesworld.com Simply the best site for information and inspiration. Wed, 18 Jan 2012 22:36:51 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Kathie http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-736 Kathie Wed, 03 Nov 2010 01:46:37 +0000 http://blog.kathiesworld.com/?page_id=50#comment-736 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. 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.

]]> By: Mod http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-735 Mod Wed, 03 Nov 2010 00:30:02 +0000 http://blog.kathiesworld.com/?page_id=50#comment-735 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 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

]]> By: Kathie http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-706 Kathie Sun, 17 Oct 2010 16:30:12 +0000 http://blog.kathiesworld.com/?page_id=50#comment-706 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. 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.

]]> By: Michelle http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-705 Michelle Sun, 17 Oct 2010 09:00:43 +0000 http://blog.kathiesworld.com/?page_id=50#comment-705 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! 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!

]]> By: Jacqui http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-37 Jacqui Sun, 07 Mar 2010 12:10:57 +0000 http://blog.kathiesworld.com/?page_id=50#comment-37 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. 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.

]]> By: Kathie http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-36 Kathie Sat, 20 Feb 2010 14:06:27 +0000 http://blog.kathiesworld.com/?page_id=50#comment-36 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 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

]]> By: Jacqui http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-35 Jacqui Sat, 20 Feb 2010 11:51:19 +0000 http://blog.kathiesworld.com/?page_id=50#comment-35 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. 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.

]]> By: Launa Jones http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-34 Launa Jones Fri, 20 Nov 2009 19:09:31 +0000 http://blog.kathiesworld.com/?page_id=50#comment-34 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. 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.

]]> By: Kathie http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-33 Kathie Tue, 29 Sep 2009 19:44:05 +0000 http://blog.kathiesworld.com/?page_id=50#comment-33 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! 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!

]]> By: Mike Masarsky http://www.kathiesworld.com/cushings-disease/comment-page-1/#comment-32 Mike Masarsky Fri, 28 Aug 2009 17:42:00 +0000 http://blog.kathiesworld.com/?page_id=50#comment-32 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 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

]]>