Tomorrow getting tested nervous but not

Thank you! That's exactly my thoughts. I just want answers. I have been feeling bad for a long time. However my weight has been up and down. I thought with Cushings you don't lose weight. Ive always had weight go up and down like a roller coster, it's been annoying. I also have really back eczema on my scalp which my Dr told me a while back could be stress. Im just ready to know, and if I don't have Cushings I still want them to figure this out once and for all. Thanks again!

Hi Alanna. It is worrying,but thank goodness someone noticed enough to realise you need checking. When I had the diagnosis, I cried with relief that a doctor recognised what I had wrong with me,having had my first symptom,spots on the scalp and arms,five years before.

Like Vicky said,keep in touch. Gill

Thank for responding. I read up on Cyclic Cushings because I was confused about the weight loss and weight gain. A year ago I lost 15 pounds, from changing my eating habits and working out. However it was short lived, didn't last long, soon gained it back and now within a 2 month time I went from 190 to 210. I just went to the Dr. and she was concerned. She took a blood test to check my Cortisol levels, diabetes, and cholestoral. They also sent me home with a big jug to collect my urine in. She also referred me to a endocrinologist in which she is asking for a full work up complete anaylsis of my hormones including coristol and to check on my pituitary gland. She asked me about my buffalo hump, which I have had for years. A question? When your hormone levels are high do you eat more? I have been diagnosed recently with depression and was going to a therapist for possible bipolar disorder. My emotion are all over the place, I tend to eat more because I am a emotional eater. I kept reading some people with Cushing's eat healthy but still gain weight. I'm not saying I eat bad all the time, I can just sense a difference. Thank you again!

Thanks Pam,  Your experience will be of great help to those who may have cyclic  Cushings.  When I first started this forum I had no idea of cyclic Cushings so I am learnign everyday too!

Cortisol 1.7 - 22.7 ug/dL 10.7 My blood results came back as 10.7 for morning. I have no clue what any of this means. Whats the difference between blood and urine tests?

No diagnoses because it was just the blood test in the morning. Not at night. I will let you know. Thanks. Im supposed to go to the Endocrinologist for a full work up on all my hormones. Regardless. Hopefully I get answers soon. Thanks!

Alanna

Your test listed above is normal, the value is between the two numbers. If you have an abnormal.result..it will be flagged with a H for High or a L for Low. Please del free

Please feel free to ask me any questions regarding your lab tests. I understand them and what they are looking for.

Thank you for the information. They tested me at 10:30 am just blood test. Sunday I am doing the 24 hour urine test. No clue what to expect. I got my other test results high protein in my blood and high cholesterol levels. Dr still wants me to keep my specialist appointment in April. It's normal to have normal levels in the morning ? At night is when they would want your levels down, correct? Thank you again. I appreciate your help. Everyone's help. Especially because I know very little about this.

Results, So i wanted to share my results with you guys. My Cortisol free urine test was normal. I have mixed feelings about this because I just wish I had answers. I was told my GP that I still am going to a Endocrinologist because people can have highs and lows. They aren't ruling anything out until more tests. I read that when you have a panic attack or are under a lot of stress people tend to have a lower Cortisol level. Is this true? Ill keep everyone updated. Thanks again for all the help I have recieved.

Alanna:

Your GP knows that that one tests is not enough to diagnose Cushings ...a full work up ...will include may include a 48 hour urine test..a dexamathyasone test ..where you take 8 pills every 6 hours...8am 2 pm 8 pm 8am for 2 days..I just did this test...then at 8am you are to be at lab for blood test...incidentally my test showed my reocurring tumor is secreting ACTH..But not cortisol. ...which was not good news for me...

You will also need a MRI with dye. They will be looking for a tumor on your pituitary gland. You need to understand that a tumor could also be on your adrenal glands..look that up...

If you do have a tumor...understand that it can be very small and cause,all this havic..my first tumor was like the size of the top of a pin head...the tumor I have now is the size of a quarter.

With "cyclic" Cushings your blood and urine may one time show its normal and the next time sky high....I know normal was 20 and in 1985 I was showing a high of 167. But because they tested me again and it was low they dropped the balll...didn't believe in "cyclic"...so because of me they do.....

So this first test is not a clear evaluation of Cushings yet..you need more blood and urine tests and a MRI..let me know what your tests show..if you are not understanding, I will do my best to explain . If you have any other questions , feel free to ask me.

Pam

Thats very helpful. I didn't know there was that much testing. May I ask how you feel when you have low levels of cortisol and high levels? Im glad you told me this because I almost thought that that was it.

Alanna:

There are numerous symptoms to Cushings disease...here are the main ones:

weight gain, obesityfatty deposits, especially in the face (round "moon" face), between the shoulders, the upper back, and midsectionstretch marks on the breasts, arms, abdomen, and thighs, thinning skin that bruises easily cuts, insect bites, and infections that are slow to heal, acne, fatigue, muscle weakness, glucose intolerance, increased thirst, increased urination, bone loss, high blood pressure, headache,cognitive dysfunction, anxiety, irritability, depression.

But understand every person with Cushings is different..you may have a few of the symptoms and you may have all of the symptoms and maybe more symptoms even than listed here.

With low cortisol I felt extreme fatigue, was irritable, depressed, wanted to sleep a lot, could not think straight my head was in a fog, I wanted it quiet I did not want to talk. With high cortisol I was manic, didn't want to sleep, was very busy, talked fast and extremely talkative. My cortisol level though was massive...look at the normal 20..and mine was 167...thats 8 times more than the normal person...your cortisol level may not be that elevated...

Cushings is a rare disease and diagnosing it has come a long way since I taught them in 1989 about "cyclic" Cushings, but it is still hard to determine how it is,affecting your body and just where the tumor is.

I hope this helps if you gave any more questions feel free to ask me

Pam

I have almost all of those symptoms, I am tired a lot, I am gaining weight right now. I was able to lose weight a year ago however I gained it back plus more. I also have chin hairs that are long and course. I have a buffalo hump, however I don't have things skin but stretch marks, no periods, and I seem to be getting a boil on my stomach right now like an infection. I have manic depression where I'm either super happy or I am super depressed and can't think or function. I was getting tested recently for bipolar. I have a lot of symptoms of cushings but I feel hopeless. You have helped a lot. I appreciate it.

Alanna:

Please try to feel optimistic about what is happening...I am living proof that this is,a disease that yiu can live with....I've had 26 years of a very good life. .I may be facing another brain surgery..but geez..it is such an easy surgery...there is no scars on your head. .you still have all your head of hair..no one can tell you even had the surgery..it was the easiest medical proceedure I've ever had...and i have had plenty...so to make you smile I'll list these so you can see you only have the tumor and it's the easy one

I've has my gall bladder out..then an accidentally punctured right lung...because they did this pain test where they stuck long needles into my abdomen to numb my middle ...because I hurt so bad after the gall bladder was out...excellent test...I still hurt in the middle after the intercostal pain block..however they accidentally punctured my right lung...not fun..but it was the door opening to them testing me for the Cushings..I've had 3 abdominal surgeries for ventral hernias caused by the gall bladder emergency removal..the brain surgery...kidney stones 8 times 4 on each side...one of the most painful medical issues Ive had...I've has 16 hand surgeries due to degenerate bone disease caused by that high level of cortisol in my system for 9 years and not getting diagnosed. .I just finished that 16th surgery 10 days ago..post op is march 4th...I've had my right kidney removed 2 years ago and they accidentally ripped open my bowel doing that..and because of that...I ended up with a 4 inch wide and 3 inch deep hernia in my belly and had that surgery to correct that feb 6th of 2015...now I've had the left hand surgery 10 days ago...was diagnosed with the reoccuring pituitary tumor on Feb 1st...and that will be next ..fixing that...and yes I do need surgery on my right hand again also for carpal tunnel...

Why am I positive and optimistic...life is one day at a time...I try to be happy and produce something worthwhile everyday....I live by this parable of my own..God wants you to get in the boat and sit down....He doesn't want you looking back ..the past is gone and over..He doesn't want to trying to look around the bend before you get there either..the future is His and He knows where He is taking you. ..He wants you to enjoy the moment you are in..the present...and find all the joy you can out of the moment you have...I have been a Christian since I was 15..sure I can ask "Why me Lord?" Well why NOT me...I've been placed in thus position to teach His physicians and to also give inspiration to those around me who are struggling with this diagnosis and many other hard medical issues..I just think if the many brave little children on a cancer ward fighting a harder battle than mine ..with cancer...or even worse...children who have been burned in a fire. .yes I've known bad pain..but I've been an adult through it all..if children can bear what they do ..with such humility and wisdom..I am less than they..

So even though I have endured years of medical.issues...I am an experienced and talented pencil artist..I can draw with either hand..I am a graphic artistic..a digital . illustrator using just a mouse not a tablet..I am the proud grandma of 6 grandchildren..4 grandsons..two are 21, one is 18 and one is 12...and 2 new beautiful grandaughters 15 months apart...18 months and 3 months..there is,always a reason to continue on..to inspire others to show my grandchildren..no matter what odds against them they can succeed at anything they desire to become..I am still evolving and learning something new everyday...

So just know I am behind you completely...I had most of the symptoms and more than the list too..I worked and supported my 2 kids against insurmountable odds. ..I was raising them thru the 9 years of no diagnosis and another 5 after the first brain sugery..I endured the depression..the Neverending medical issues. ..I fought. .I prayed continuously...I wrote in journals ..I even wrote a book about it...I've never published it..I probably should...

Just know I care...I want you to feel free to ask me any question..no matter how personal..I will respond..you can get through this and come out positively into a bright future..believe me..

Pam

I want to thank you for sharing your situation with me. It really helped me view this in a different perspective. I have been down and blue lately but after reading your post, I have learned that things can only make you stronger. Thanks for sharing.

Hello! Im feeling much better the last few days. I go through up's and downs. I was going to ask. I just turned 27 yesterday and I want to work on my weight this year. However, I am stummped because I don't know and probably wont know a diagnoses for a while. I was under the impression you can't lose weight easily. I wanted to start weight watchers but didn't want it to be a waste of time and money. I just don't know which way to go. Any ideas?