Tomorrow getting tested nervous but not

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So I went to my cardiologist last week and he was concerned about the buffalo hump that I have had for years. Mind he's the only one who even mentioned it no other doctor. My heart rate has been really high at resting. He called my main doctor and told me that I need to be tested for cushings. I have had health problems for a few years now. I am have anxiety like crazy and depression. In the last 7 months I have gained 30 pounds, however here lately I haven't been eating well due to my depression. I haven't had a period for 3 years but thought it was due to by birth control. I have the excess fat on my stomach, strech marks but I thought they were due to having a child 3 years ago. Im nervous but Im not either. Because I would love to feel normal again. Im just happy they are getting it checked. Anyones thoughts? I just learned about cushings literally 5 days ago.

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  • Posted

    Hello Alanna,  How good that your cardiologist recognised what could be a symptom of Cushings.  So many G.P.'s have no experience of the disease because we are so rare.  There are also so many symptoms and each of us has different ones.  You will need quite a few tests and then if yyou are diagnosed you will be referred to an Endocrinologist who specialises in Cushings.  I am sure you are nervous but if it is Cushings then all your symptoms will make sense and you will be on the way to geetting back to the old you.  We are always here to help.  Good  luck and let us know how you get on.
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    • Posted

      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!
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    • Posted

      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

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  • Posted

    Hi, I have to admit that usually your weight does go up rather than down because everything you eat goes straight to fat.  People all experience different things.  Let's just hope that soon you will have the answers you need as we all did.  Take care.
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  • Posted

    Alanna:

    Cushings can be very confusing ..especially to get a diagnosis. .there is such a thing as,"cyclic" Cushings as that is what I had in 1989...from 1981 to 1989 it took the doctors to figure it out. Yes your weight can go up and down if you have "cyclic" Cushings...the symptoms are so many and each person is different..you may have some of the symptoms...and some not...the Buffalo hump is especially one of the major symptoms of cushings..you will need blood and urine tests. .cat scan or mri...a tumor could be on your pituitary gland or on your adrenal glands..look this up so you understand. I know this can be overwhelming.

    I am a Cushings disease survivor for 26 years..however I now have a reoccurring pituitary tumor and facing all the tests again and a possible pituitary surgery again. It is not that difficult of a surgery but be sure if you have this you make sure the neurosurgeon you pick..that he is,VERY experienced in doing pituitary or adrenal tumor surgery.

    If you have any questions just send me a,message here..I would be,glad to help

    Pam

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    • Posted

      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!
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  • Posted

    Alanna

    I know this can be so confusing...the weight can go up and down..it can also explode...I went from 110 lbs to 276 lbs...in 6 months....I was eating small jars of baby food and throwing it up...I still gained rapidly...

    Yes you may be absolutely starving one day and could care less if you ate the next day..if cyclic...they placed me in the ICU and did special testing...where they took blood out every few minutes with special medications they used for the tests...they watched my personality change right before their eyes. ..along with my appetite...the mood swings...I had 3 personalities..I called them...jekyll and hyde...and then one was myself...Hyde was the defeatist who slept for hours on end..did not want to talk..severely depressed ...jekyll talked non stop and has to be busy busy and rarely slept..then there was the normal me which by the time I finally got diagnosed with the tumor found I was mostly Hyde

    Cushings is hard to diagnose especially when you are seeing doctors who are not informed...you are lucky they are looking...the 24 or 48 hour urine test will show them how much cortisol is in your system...the blood shows the same thing...if those levels are high..they will do a mri..hopefully with dye on your pituitary gland...I have been facing all of these tests again after 26 years...my ATCH is high..Cortisol is almost mon existan as they removed the pituitary gland with the tumor. ..my tumor was not very big in 1989 that is why it was hard to find and diagnose...I was saved by a radiologist who could see the stalk of the pituitary was bent..that was it..

    This tumor I have now us the size of a quarter...today i see a neurologist and the neurosurgron..luckily the neurosurgeon was one of my surgeons way back in 1989.

    Be happy they are looking..you will get through this and there are many people who have been diagnosed and did well. I am proof you will live through it and do fine. I am now 64 years old a graphic artist and pencil artist and digital illustrator..be optimistic and look up all you can on the Cushings subject. If you gave anymore questions feel free to ask me I will try to get right back to you.

    Pam

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    • Posted

      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!
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    • Posted

      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?
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  • Posted

    When you got your results were you not given any indication or diagnosis?  if you didn't that is bad.  Someone should explain all this to you.  I am hopeless with the measurements so hope DEBS or Gill will answer your questions.  Mt thoughts are cortisol normal levels are 10-100 and blood 6-24 but I am ready to be proved wrong.  Can't stress enough that this must be explained to you and someone else if they go with you.  Always a good idea when taking in so much info.  Let me know if you get any other replies.  Take care.
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    • Posted

      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!
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    • Posted

      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.
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    • Posted

      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. smile
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    • Posted

      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

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    • Posted

      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.
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    • Posted

      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

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    • Posted

      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.
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    • Posted

      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

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    • Posted

      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.
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    • Posted

      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? 
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