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    Welcome to the Cushing's Help and Support Blog. This info is lifted almost directly from the Power Surge Blogs ( http://www.power-surge.com/php/forums/index.php ) :D

     

    Some of you may be very familiar with blogging. Others may not. All blogs are configured differently. To make a new experience with the Cushing's Help and Support blog as problem-free as possible, we strongly recommend you KEEP ALL THE DEFAULT SETTINGS you'll see when you create your blog until you're more familiar with how to manage your blog. Then, as you gain more experience, you can adjust your settings.

     

    The one thing you may wish to change from the beginning is either to "allow" comments to your messages, or to "disallow" comments. You can change this setting by simply clicking on the "Your Blog Settings" tab on the menu. That's entirely up to you and whether you wish to receive feedback from your posted messages, or prefer to simply use your blog as a place to express your thoughts, ideas, experiences, feelings.

     

    Certain features have been restricted for various reasons - such as private blogs. This is done so for the security of the site. For example (this may seem a bit extreme, but it happens) -- let's say someone is in crisis and posting about suicide, OR someone is anticipating committing a crime or has committed one, Cushing's Help and Support doesn't believe this type of information should be kept private. If you want to convey this information to others, that's what E.mail and phones are for. If you're in crisis, always call 911.

     

    The world we live in today isn't the same safe world it was even five years ago. Private blogs can open a whole host of potential problems. Therefore, we've decided not to allow private blogs - both for your security and ours.

     

    We also recommend that you express yourself in any way you wish (please avoid using profanity), BUT caution you, as we do all over the Cushing's Help and Support Web site, NOT TO POST ANY VERY PERSONAL INFORMATION THAT YOU WOULDN'T WANT "OUT THERE" FOR OTHERS TO SEE.

     

    This includes telephone numbers, E.mail addresses, real names and/or too much personal information about your life. We suspect you know how much is appropriate and what your comfort level is regarding personal information.

     

    The Cushing's Help and Support Blog isn't much different from the Cushing's Help and Support Message Board except that it's sort of an "out of the way" place all your own. It's like having your own little Web site :D

     

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    We hope you enjoy your blogging experience on Cushing's Help and Support!

     

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    Blogs that have had no entries in over a year will be disabled. You can always enable them again if you suddenly have the desire to Blog again :)

  1. MaryO
    Latest Entry

    Always something!

    always-something.jpg

    I woke up last night with numb tingly wrist and ring finger.  In the last few days, I've had to move my watch band out a notch.

    I've been on Omnitrope .3 growth hormone for a couple months and just finished my second cartridge.  Emailed Dr. Salvatori for advice.

    A couple weeks ago it felt like my wisdom tooth lower left was coming in and I generally felt like something was happening with my jaw.  That's evened out now.

    Naturally, my second shipment (2 more cartridges) just came, along with their co-pay, so I hope I don't have to throw any of that away.

  2. FerolV
    Latest Entry

    I am a very late entry. Shortly after my 5th anniversary post surgery 2005, in the 6th year, I knew something was "different". That old sense of dread returned. At the 6th anniversary checkup, I popped a "high" on urine cortisol. But it was a one time thing, not repeated in a "sequential lab". Over the next two years, my blood sugar went haywire, not controlled by higher and higher doses of metformin.  My weight began creeping up from 150# to just over 180# when the blood labs confirmed in the 8th year, "the monster" was back, with a new head. I was referred to UVA, Dr. Mary V. and her teammate surgeon, Dr. O. They also brought in the GKS EXPERT at UVA, a pleasant "young man", In 2013, October I had debulking of the tumor and 7 weeks later in December the GKS. We put on some fine music and I took a nap. Here I am in the 4th year since second round of surgery, and all labs are excellent. Getting OLD isn't so much fun, but endocrine is OK.

  3. I just received a call from my pcp that my pap smear came back with cancer cells possible pre cancer. I have possibly Cushing's Syndrome that I have been going to to an Endocrinologist for still undiagnosed. I researched and found that Cushing's Syndrome can result from Cervical Cancer due to ectopic ATCH secreting tumor. I go for an more invasive biopsy next Monday. I am going to stay positive note matter the results.

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    I had to post because so much time has passed. Its crazy to think I'm 21 years old now, and when I was 14 I thought I was dying. Here I am, a pre-nursing student ready to tackle the medicine field with great passion to help others who went through I went through. I hope to help people suffering from their confusion, and self deprivation due to hypercortisol secretion, stress, exhaustion, and sadness.

    I am so ready to support others, and heal others

    Im so thankful I survived.

  4. blog-0839382001423104446.jpgYeah

     

    So after 20 years of procrastinating i finally went and did it !!!

  5. Kill Bill

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    I first became aware of Bill on November 6, but now that I know about him, I am pretty sure he officially arrived during the summer of 2012. Since then, I suffered from depression, acne, menstrual problems, 30lb weight gain (while training for a marathon), and high blood pressure. Best of all, Bill has taken up residence on the back of my neck and created a little colony on my belly too.

     

    I always been pretty healthy (except for hypothyroidism) but in the last year, I had seen several different doctors for all of the weird things that have been happening to me. A gynecologist and dermatologist both suggested my menstrual and acne problems were likely hormonal and happening because I was probably going through perimenopause (I was 40 at the time). A psychiatrist put me on Effexor for depression and a beta-blocker for anxiety (I jump a foot when the phone would ring or someone would knock on my office door). All of these treatments seemed completely reasonable to me and they helped. It never occurred to me or anyone else they could be related. And all potentially explained why I kept gaining weight, despite not changing my diet and exercise (5-6 days a week) regime. Who knew hitting your 40s was going to be this rough?

     

    I started to really slow down on my runs - 2 to 3 minutes per mile slower than before. Maybe it was the weight gain that was making running harder, maybe it was the unusually hot and humid summer. I kept waiting for my running to get back to normal. But it never did. Every day it was a struggle to run. It was something I used to love so much - it was my way of working through stress. Now, it just made me feel bad. When I went to my regular endocrinologist in July for my annual thyroid check-up, he discovered my TSH was "way off" - and a little light went on. That's why I felt so crappy this year! I recounted my symptoms to Endo 1 (whom I had been seeing for 7 years). He thought I must be "very sensitive" to changes in hormones to have such a large reaction to the drop in TSH but hey, you never know. My Synthroid does was adjusted and I kept waiting to feel better. But I just kept getting worse. At my follow-up appointment in October, Endo 1 (who was with a medical student) told me my hormone levels were perfect and my face fell. He said I looked like I wanted a different answer. I explained that I felt worse and was having very troubling symptoms now. I run the week before and two miles in developed an excruciating headache, blurry vision and unsteadiness that stopped me in my tracks. I had to sit down for 30 minutes before the symptoms subsided and I could walk back to my car. I haven't run since. He started standing up, with the medical student in tow, and told me "this is not an endocrine problem - you should talk to your PCP and go see a cardiologist." That was that.

     

    I found a great cardiologist that deals with athletes, Dr. B. I was supposed to run the Philly marathon in November and so I tried to get his nurse to squeeze me onto his schedule in early November so I could figure out if there was something wrong with my heart. I had a stress test at his lab which came out completely normal. However, my blood pressure was very high. He told me that my heart was fine but something was very wrong for my blood pressure to be so high. I had mentioned to him that I had high BP readings at the various doctor's offices I had visited over the year - but I was always told "you are young and healthy, your BP is just high because you are in seeing the doctor today" (which for the record is ridiculous - it is hard to stress me out and a visit to the doctor is certainly not enough to do it).

     

    After reviewing my records and giving me a physical exam, he came back and told me he suspected I had Cushing's. He started some lab work to try and test for it too - two 24 hour UFC's and a dexamethasone suppression test. I had never heard of Cushing's, but my symptoms fit to a T. And as I read about "buffalo humps" and reached up to feel my neck, I realized I had known about Bill for some time. The cardiologist was so wonderful. He told me. "This is an endocrine issue, not a cardiac issue. But I am going to keep seeing you until you are better and I am going to help you navigate through the system."

     

    I felt very happy and relieved when I left his office. There was something wrong and it had a name. Now, I would just have a couple of tests, see my endocrinologist and go back to my normal life. If only life were so easy....

  6. Oh the joys! Just got a letter from my Endo saying 'we will review you in next clinic'. My first Dex test she said was boarder line at cortisol level 50.. but my last one they have put 'perfectly normal with a cortisol level of less than 18'. So it would seem we are back to the drawing board and I have to wait til the 31st May to speak to anyone again to see what can happen next!

     

    Well, decided I am going to put my thoughts in a letter to see if at least I can stop them from saying "we are not going to test any more.." which I know my Doc said she would not stop testing till they found something, if not Cushings then something else... but its my biggest feat that they will turn tail and say "you are just you, so get back to slimming world!"

     

    le sigh! :)

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    I clearly have a buffalo hump and have noticed it develop over the past few years. I just compiled a photograph collage of pics of me over the last few years, including one with my buffalo hump. I have a small pituitary tumor that was just confirmed via MRI that is secreting prolactin but my endo said that it should not cause me any symptoms and is not going to treat it. (I am getting a second opinion ... and another endo).

     

    I have so many signs of Cushing's disease/syndrome, except that I do not have high blood pressure or high glucose levels. My ACTH level was checked and if anything, it was on the low side (it was done at noon and not the 8:00 protocol time). My cortisol levels have never been checked but they usually correleate with the ACTH levels, so that basically rules out Cushing's (unless there is a tumor on my adrendal glands which I doubt). I have horrible facial hair that is getting worse by the day. I went from a size 12 to an 18 in a year and a half without doing anything differently - fat gained ALL in my top stomach with legs and feet having virtually no fat whatsoever. I have a moon face, episodes of illness, random bursts of energy, extreme PMS - uncontrollable crying spells for no reason and have had a few rages of anger. I get irritated extremely easily and have internal tremors at times. I get shaky and nervous with the least amount of stress. Noise really bothers me, it startles me and makes me instantly very nervous (heart pounds faster). I have cognitive and memory issues, to the point where I can no longer adequately do my job (I'm an attorney). I quit my job last year (been there 13 years) because the symptoms got so bad and I could not longer function. Since then, I have been horribly sick (not just menopausal symptoms). I have joint pain in both feet and thumbs and it has spread to other parts of my body leaving me virtually unable to walk at times. Sometimes it feels like every bone/muscle in my body hurts. I try to exercise but it's painful and I injured myself (I have a gym in my basement and historically have always been somewhat active in the exercise department). My periods stopped completely. All of my symptoms blossomed at the same time, 10 months ago. I go through these episodes of illnesses that last 1-2 days with me feeling very "flu like" with headache, nausea, completely lethargic (can't get out of bed for a day or so). I then feel better (normal) again and sometimes have had a sudden burst of energy. I've been all over the place with symptoms this past year (I can't even keep up with them all!).

     

    Everything came together and finally made sense of why I have been so deathly ill over this past year - especially when I learned about the buffalo hump because that is not just a figment of my imagination. I thought that this was the proof that I had Cushing's, especially since the only research I find indicates that a buffalo hump is a sign of Cushing's. I was actually happy that I found the cause and that there was a solution ... until I realized that nobody is listening to me.

     

    My question is: wouldn't weight gain naturally give a woman a buffalo hump regardless of Cushing's? In other words, is my buffalo hump just a coincidence?

     

    I know I am sick, but could it all just be pre-menopause (likely due to the tumor)? I am 39 and my symptoms went into full force when I was 38.

     

    I didn't meant to ramble on here but I am so frustrated, sad and confused. Thanks.

     

    UPDATE: I have been testing my blood pressure and glucose levels at home and I think I just caught the evidence for Cushing's - I woke up feeling shaky and ill again and my blood glucose and blood pressure were both elevated. I have an appointment with a new endo and hopefully I can get some real answers ... and a real solution!

  7. Progression of my hump...its very painful, especially in the last 1.5 years. A couple show what i think are subclavical fat pads...but im not sure. What do you think? ...and sometimes i feel like they look bigger. i dont understand that...but maybe im just looking at myself too much. Notice in the first couple of pictures that i dont have any subclavical fat pads.

     

     

     

     

    November 2006

     

    184_592002994184_9379207_44863570_5537_n.jpg

     

    December 2008

     

    2652_831681112314_9379207_55681514_5972489_n.jpg

     

    Septmeber 2010

     

    34806_10100579967682004_9379207_77410935_8354250_n.jpg

     

    December 2010

     

    162934_10100604213787614_9379207_77993229_7951490_n.jpg

     

    February 2012

     

    IMG_8000.jpg

     

    May 2012

     

    056-1.jpg

     

    035-2.jpg

     

     

    Source: My ever growing hump...and subclavical fat pads.

  8. Cushings syndrome has changed my life in many ways. I used to think I was trapped inside a suit that I couldn't get out of when I was gaining weight so quickly. When I found out that I had Cushings Disease, I was kind of relieved in a sense that this is another step up my hill, the hill being Cushings, and when I got to the top, all I had to do was slide down. It took a long time to get up that hill! Blood work, MRI's talking to what seemed like a MILLION surgeons that just scared me instead of comforting me! But I finally got there. I had surgery in the summer, and was I miserable! I thought it would be easy! But when I woke up in the middle of the night in my hospital bed to see my mother curled up in a very uncomforatable rocking chair watching me sleep, I knew my family was there for me. Eight months later, I feel a lot better. I am loosing weight, I have a lot more energy, and I feel like Cushings can't control me anymore. I also learned how to listen to my body. I can tell when something doesnt feel right with my body, and when I have to take more medication.

    On a side note, I am meeting a teenager today that is being tested for Cushings. Hopefully I can be a positive support to her.

     

    Cushies Rock! Emma12

  9. Boy what a roller coaster !!!

    I want to thank everybody on the site for helping and sending me strenght to fight.

    I have change Dr AGAIN.

     

    Went for a CT which was all normal.

    Just finished my first 24 hour Urine test (waiting for results)

    Blood pressue slightly elevated.

    He sent me for blood tests (which i dont understand), and im hoping somebody could explain them, and which ones i need to concentrate on as my Dr said they were ok ?

     

    Normal Range Mine

    Sodium (135-145) 139

    Potassium (3.5-5.5) 4.3

    Chloride (95-110) 105

    Urea (3.0-8.0) 4.7

    Creatinine ((45-85) 48

    eGFR (<89) <90

    Bicarbonate (20-32) 24

    Total Bilirubin (3-15) 2 Low

    ALP (30-115) 71

    Gamma GT(6-35) 55 High

    ALT (5-30) 16

    Total Protin(63-80) 65

    Albumin (36-47) 43

    Globulin (18-34) 22

    Glucose Fasting (<5.5) 6.6 High

    ESR (<20) 12

    Vit D (>74) 45 Low

    TSH (0.5-4.5) 1.3

    C-Reactive Protein (<5) 15 High

     

     

    I hope some body can point me in the rightr direction, i would really appricate it.

     

    Cheers Vicki11

     

     

    Source: totally confused...please help!

  10. These are my results....

     

    Estimated Glomerular Filtration Rate: 103.6 (50-70)

    Potassium: 4.4 (3.5-5)

    Sodium: 138 (136-145)

    Glucose: 5.44 (4.1-5.9)

    Calcium: 2.37 (2.02-2.6)

    Cholesterol: 5.42 (2.9-4.7)

    Triglycerides: 1.31 (0.1-1.71)

    Ferritin serum: 30.7 (10-120)

    c Reactive Protein: 9.3 (0-5)

     

     

    TSH: 0.048 (0.4-4.2)

    FT4: 14.64 (7.86-14.41)

    FT3: 4.83 (3.8-6)

     

    Cortisol: 796.2 (185-624)

     

    Erythrocyte sedimentation rate: 18 (0-15)

     

    More results pending......

     

    I have been feeling really ill for 3 years now. I am unable to work full time and cannot get out of bed in the mornings. I have hashimotos and have been on 150mg of levothyroxine for 3 years now with no improvement on symptoms. I was sent to the Uk for a heart study because i had arrhythmia and high heart rate. They suspect an extra electrical pathway but my heart rate if horrible.

     

    Does anyone think i may have cushings ? Im worried because my auntie had adrenal tumours and she produced cortisol. She ended up obese and with a bad case of diabetes she died from her high cortisol levels a few years ago...... the doc says im just sensitive to stres....

     

    ive seen a physcologist and she said nothing was wrong with me mentally and i was given the all clear....

     

    nobody seems to know whats wrong with me but i am only 25 years old and i cannot function like a normal person anymore

     

    please help

  11. Dx- Cushings / Acromegaly /Jan 28th, 2010

    DrJHO- Pituitary Surgery- morn cort - 8.0

     

    Other Dx:Hypothyroidism, Hashimotas, Diabetic Insipidus-DI, Low GH, Pre-Diabetic, Osteopina,Atherosclerosis-aortic calcification, Basiler Atelectasis

     

    LABS-

    Pre Op:

    4/09

    6+ midnight saliva's - within normal range

    UFC- 57.9, 55............ .......(range > 50)

     

    9/09

    UFC -.37,37,49, 48, 63 ....( 10-34)

    Free Cort/Creat Rat. 46 (9-32) 5.3 (1.6-3.6)

    IGF-1-234 (88-249), 342 (87-238)

    MRI- no visible tumor

     

    12/09

    CRH Test- positive pituitary, Glocouse Supression test -Normal !

     

     

    SURGERY 1/28/2010

    Adenoma- Stained GH-Positive, ACTH -negative

     

    6/10-Doc say I'm cured

     

     

    6 months Post Op:

    No weight loss

    tired

    shortness of breath- very prevalent- unpredictable,

    drop to my knees sometimes

     

    thyroid issues

     

    Post Op Testing:

    6/2010

     

    UFC 24s- .............53, 51 range >50

    UFC 17s-.............48, 55 (10-34)

     

     

    9 months:Going for testing at Camp Cushie- Oct 25th, 2010.

    Tested high in ACTH, Cortisol and UFC

     

    Camp Cushie

    midnight cortisols 7.0, 5.6, 5.1, 4.6 ( upper limit 5)

    high Acth ........78

    high UFC ........74

    random serum cortisol 26.3 ( upper limit 28)

     

    1 year Post Op:

    Surgery Jan 28th, 2010

     

    Dr L's Home Test Kit #1

    UFC........... 74, 72, 48, 31 (0-50)

    Saliva-........normal

    ACTH - ... .38.2, 31.0, 26.4 , 39.6 ( 7.2-63.3)

    Cortisol-....15.7, 11.0, 14.4 , 12.9 (2.3-11.9)

     

     

    Dr L's Home Test Kit #2

     

    Cortisol....21.5, 17.7, 9.0, 11.9 , 5.8 ( 2.3-19.4)

    ACTH ......51.6, 42.9, 39.8, 32.0, 14.2 ( 7.2 - 63.3)

    UFC - .......44, 45 ,33 , 31, 48....(0-50)

    Salivas- Lost in mail and 1.8, 2.1, 1.8, 1.5

     

    Hemoglobin A1c ........ 6.2 (5.7- 6.4 )

    New Dx 1/2011-....Pre Diabetic-told to exercise /lose weight

    Blurry vision-right eye tearing-specialist says I am ok- 20/20

    Back pain @ 8:20 am followed by flushing, some nausea

    Dizziness

    Sparatic High BP and Sugar level

    Shallow breath- going to Pulmunary Doctor -CT Scan-Basiler Atelectasis

    Atherosclerosis-aortic calcification- heart

    Heaviest I've ever weighed.

  12. diane177432
    Latest Entry

    It's been a long time since I have posted here...nearly a year in fact. I have been absent from the site in an attempt to try and move on from Cushings and regain my life. I don't know if that will ever be possible although a year on I feel so much more better, more energy, and more like the old me again. The only trouble is my life is still ruled by my medication and just being a little late means I can feel just how reliant I am on them. I fine that sad. In the past year I have tried my hardest to lose weight however I have just managed to maintain the 3 stone loss. I am optimistic however that I will lose more weight this year. I want to lose another 3 stone before my 40th birthday in June 2012 and so have 18 months to do it in. Life in cambridge has done me and my family the world of good and we are getting back on our feet. I have progressed in my career and have now regained everything that I lost. I am back working as a picture editor again. I worked so hard to get here but I have done sit nd I am proud of my achievements. Harry turned 9yrs in October and I am so proud of my baby boy. He has been through so much and has really just known a Mum that is unwell but with my energy levels back I can play with him lots more and be a bigger part of his life.

     

    For all of you out there thinking there is no light at the end of the tunnel...I am proof that there is. Despite the fact I will be on medication all my life, my disease is manageable and I am nearly back to where I was before I was diagnosed with Cushings. Never give up hope...

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    Recent Entries

    As I see Gaby on her up and down days, I find that I may have been neglectful of her symptoms over the past few years. She told me she was dizzy and had a headache, right behind her forehead. Her obesity was just her stomach and back. I saw the hump. For some reason I thought and reasoned out every symptom. Basically that she was lazy, and didnt want to do anything with the family.

     

    This is causing relationship problems between me and my husband, he thinks she is faking it most of the time. I have told him about her enlarged pituatary gland, and her other symptoms. He is not overtly concerned about her health. I can tell she is sick, her eyes are sunk back and have dark circles. She gained 7 pounds this week alone. Constant headaches, her vision is blurry at times. The problem is Gaby has cried wolf before.

     

    Not that she was sick, but when she was sick and wanted to go do things with her friends. She is be in pain and be tired and try to act normal when she wants to go out. So how do I know when to let her go? I don't, its a guessing game that is played.

     

    My husband does not read up on this disease, or its symptoms. He thinks that if she is woken up in the morning, and keeps busy all day, even in the heat, that she will be fine. He is really kind of upsetting me with this. I rule in the side of caution, where he thinks she can push through the pain, and that the tiredness is just being lazy.

     

     

    Lori W

  13. Wed. June 23 2010

     

    I guess before i start i should tell you what Szam?r Mad?r means. It is a dutch phrase that literally translates to "Donkey Bird" but means "stupid bird". I don't speak dutch or know much about the culture either, i only know this phrase because it is the title of a song by Venetian Snares, a breakcore master and one of my favorite bands.

     

    Anyway, I must confess that I have never written a blog. Haven't ever really kept a diary either. I tend to want to keep my very deepest thoughts and feelings to myself. If you write them down or post them online your giving someone, somewhere the key to your mind. I don't like that idea. Adn I'm nto saying that i don't speak my mind, because i do I just can't stop myself. But the truley personal and deep beliefs I try to keep to myself. (Key word :TRY) So this blog will probably be an edited version of myself.

     

    I've created this blog for one reason and one reason only: So i can remember. I have alot of memory issues. Although i remember every book and movie i've ever read and can identify them as such in under 2 seconds, and although my brain is like a sponge and is filled with alot of information, i cannot remember my childhood, or even things that happened the week before. I cannot remember what i said yesterday or how i felt. I remember emotions towards things but rarely the reason for those emotions. Hopefully this will allow me to document myself.

     

    Wow. Looking back to just yesterday I realize how self-centered and typically human that paragraph was. And after reading so many posts and stories about the inadequacies in the medical field I came to the wonderful realization that I might have something to share. Just maybe all the pain i've experienced and learned from can help other people avoid those same pit falls. So... On that note I dedicate this blog to everyone out there who can benefit from my experiences, cushing suffers or not. I think we all have something we can pass on to another person and this is my attempt at doing so.

     

    I had this same thought last night after reading about the mental problems alot of cushies suffer from. Although i don't know much about cushing's I do know quite alot about people and the mind/psyche. So i thought why not share the things i've learned with other people who could benefit from it too. So i posted this: Words From a Mental Veteran It is six tips that i think will help people suffering from all kinds of mental conditions and even people that arn't.

     

    All last night after posting it I was scared that people would think I was trying to be bossy or a know-it-all. (My mother constantly fusses at me that I lecture everyone about things, and not in a pleasant way) So i was really worried that on the second day after joining this community I would oust myself as the total b*tch I am and no one would like me anymore. I imagined an internet community banning together with Java script pitchforks and torches to drive me out. :)

     

    and then i woke up this morning and checked responses to my post. Expecting the worst and dreading the beginning of the end. And lo and behold a very nice woman: jennyr responded. She said very kind things and made me realize that all was not lost and that maybe, just maybe. I really could help people out. So kudose to you jennyr! And thank you from the bottom of my heart.

  14. I have accomplished nothing much. I hadn't kept up on this forum and should have done a lot more. I now know I weigh more than a whopping 440 lbs because I couldn't even weigh on this one scale my friend just bought for herself. I need to find out if this is some kind of medical condition caused by something abnormal or if this is weight I can lose and have just gained and gained easily over the years. It is going to be even harder now. I am following weight watchers and will start swimming this week, but aside from that the medical testing will have to start all over again because I hardly got a start on it in the first place. I can only pray to God to give me strength and patience. In the end, I believe all will work out. God bless.

  15. I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ... I match pretty much every and I mean every symptom of Cushing's I even have had two high 24 hour Urine Cortisol's, but they did not feel that it is enough to give me the diagnosis. I took in before and after pictures to show the progression of this over the years, I am currently on 700 + units of insulin a day(and my sugar levels still stay between 350-400 daily), 2550mg a day of metfomin, I have developed hypertension, low potassium, an extremely distended stomach (which is really hard on top) my legs and arms are thin, my face is ver, very round and gets red, I have no periods, My muscles are killing me along with my joints and the hump on the back of my neck between my shoulders is huge and is killing me, My ribs are hurting, I have insomnia, panic attacks almost daily, large pink/purple stretch marks, severe edema, severe daytime fatigue, forgetfulness, losing some cognitive skills, a continuous sinus headache, The pain is becoming unbearable in my joints, acne, losing hair, lots of facial hair on cheeks and chin, I am urinating non-stop, my muscles are extremely weak and it is becoming dfficult to walk because my ankles, knees and hips hurt so bad. I am having a hard time walking especially when it's on an incline. I keep stumbling and losing balance(this is recent). Each episode is worse then the one prior... This is my 3rd bout with this and it is awful... I am only 32 y/o and my doctors won't listen... my Endo's at OHSU keep saying eat less and will not refer me to another endo in the office who specializes in this. I have been emailing them, but now they won't even reply, they keep telling me to excersize more, but I can't because it is so painful and I am so tired. Can someone please tell me of other doctors they have seen that heloped them get a final diagnosis? I did have dexamethsone, and ACTH don, but they were normal... I really want an MRI, ultrsound and CAT scan done. I have great insurance, but I feel like I am getting 3rd world care and being passed of as a crazy person.

     

    Thank you for any help!

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    We have recently taken my son to the doctor for exhaustion, depression, moodiness, odd stretch marks, rapid weight gain, muscle aches, etc. She sent him for blood work. She checked his thyroid, for anemia, and his cortisol levels. She said that she felt sure that it was his cortisol levels because of the rapid weight gain, his round face, and the fatty pocket on his collar bone. On the way home my son mentioned that he thought that it could be Cushing's Syndrome. He had seen it on House. I had never heard of it before. He showed me the info on the web when we got home. It seems to describe all his symptoms perfectly. He has gone from losing weight and running every night to barely being able to walk with the family. So the blood work came back and his cortisol levels were normal. I expected that if it were cushings that they would be off. We go back to the Dr. on the 22nd, and I want to know if I should push for further testing. Please give me some advice.

  16. Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable.

     

    Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests.

     

    I'm so tired of all this, and my weight loss has stopped. How discouraging.

     

    Going to post on the forum see if I can get any advice.

     

    Hanging in there,

     

    Renata

  17. Well, I had my surgery on February 4th. It was probably one of the worst things that I have ever had to endure........

    everyone made it sound like it was going to be fine. My doctor told me I would probably be out in a day or two. I ended up being there almost a week, and probably could have stayed longer. While I was in the hospital I developed Diabetes Insipidus, and was sooooo thirsty and going to the bathroom so much that they put a bedside toilet next to me because I couldnt make it to the bathroom. I was in so much pain, and I was so nauseus that I couldnt eat anything the whole time I was there. After I got home I was put on 20mg of hydrocortisone in the morning and 10mg in the afternoon.

     

    I spent the first week in bed and sleeping most of the time. After the first week I was up a little and moving around. About the third week I went to get follow up blood work done. At around the fourth week my endo called and told me to drop the hydro to 10mg and 5mg. That weekend I got really really sick. I was throwing up anything that I tried to eat or drink, and I was aching and tired. I ended up going to the ER and they tested me for flu and it came up negative. They sent me home and I continued throwing up until Monday. I ended up back at the er and they found out I had a sinus infection. I took antibiotics for that week and nothing seemed any different except that I wasn't throwing up.

     

    I went back to work and around the 4rth day of work, I started feeling really tired and achy. Since then I have been sick every day. I am so tired all I want to do is sleep. Every bone and muscle and joint in my body hurt. I have no strength whatsoever. I can barely get myself up off of the chair when I sit down. I cant eat anything because Im naseus all the time. I am sneezing alot also, and I have insomnia horribly. My doctor said everyone handles it different and that she thinks it is probably going to go away, but it is getting no better, and I am so sick of being sick. I am worse now than I was before my surgery, and I am actually regretting the surgery. Please someone, anyone who has had the transphenoidal surgery to remove a pituitary tumor, let me know if there is a light at the end of the tunnel,,,,,,,,,,..............

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    hi everyone, I am here to find out a bit more about Cushing Disease

    I am currently waiting to see a specialist Endocrinologist to see whats going on with my crazy body :)

    Have been waiting 5 long weeks so far, one week to go. It is so scary waiting to find out what they will do and say. Let me take you back to last year, I married my Husband in October 2009 and ever since that day I have felt unwell. Lost weight which worried me as I have always been a slim lady, and been feeling so tired and uncapable of doing the usual daily activities of being a mother and wife.

    I got diagnosed with Thyroid disease not long after this date, underactive thyroid (which is unusual my Doctor said as it normally makes you put weight on, not loose weight) So he did more tests and it came back with high Cortisol, of course I had no idea what this was. He repeated urine tests, midnight salivary tests, blood tests and 24hr urine collection tests. These came back to say my Cortisol levels were the highest in morning, which he related to the morning stress of getting two kids ready for school. I have been on medication for my thyroid disease since October and have had it increased to a higher level. I feel worse now than I did to start with. My memory has been poor for a long time, and I thought I had dementia which is a worry at 32yrs old. I thought this was improving for a while but now think its getting worse again as I am forgetting alot of important things. I had a dex suppression test, took 2 tablets at 11pm and the next morning had a blood test. This came back positive to Cushings Disease. But I have no symptoms of Cushings Disease, no weight gain, no moon face, no buffalo humps. Its so confusing! I feel achey in my arms and legs like I have the flu many days, and am so tired I cant cope with cleaning the house and even shopping is a challenge. I am exhausted for days after any physical activity. My head is so fuzzy and confused and I just want to sleep. 9 more days before I see the specialist and am so scared what he will say to me, but I need to know so I can get better. I had 2 CT scans, one on my adrenal glands and one on my pituitary gland but they both came back negative to any problems.

    Please if anybody knows, could I have Cushings Disease without the symptoms, or could it be picked up early before the symptoms came. Sorry to write such a long story, Im just a confused and scared lady who loves her family and kids so much, I want to get better. Take care all xxx

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    alicia26
    Latest Entry

    Hi everyone.

     

    My name is Alicia, I live in Harriburg,PA. Starting from high school I struggled to understand feeling strange, bruising easily,and many other symptoms.

    I broke my hip when I was 20 in 2003. Which the doctors could not explain. then in 2004 I had a lost a pregnancy. Not to mention the fact that I had went from 140 pounds to 215 ponds. I kept going to the doctors and getting no where. I would be in the ER constantly. One day after leaving my PCP I went to my mom and was crying very upset because the DR. had put my on blood pressure medication. And I was like at 22 there is no way I am taking this. MY mom noticed that my legs were turning bluish she took me to the hospital and they admitted me for my blood pressure alone. After being examined and bloodwork the er dr. agreed something else was going on. After 2 weeks of tests the MRI didn't lie. Also the 24-hour cortisol urine test. I had a pituitaty tumor. I had no idea what cushing's disease was and am still to this day having trouble understanding. I had the surgery where they went in from my upper lip and nose. I was doing good I lost about 75 pounds and was starting to feel normal. Then after only that brief 1 year back again came the weight,fatgue,high blood pressure,everything you name I am the classic case. This time the tumor was said to be inoperable because of its position on my pituitary gland. I had gamma knife radiation in 2008. I am having more trouble this time around. My cortisol level was normal last testing although I still weigh 218 pounds, my face is still the same and I sometimes have missed periods. My husband and I both want kids and I need to here something positve about having kids if you have cushing's disease. My next follow up isn't until April and I never really get for sure answers, just blanks like give it sometime gamma knife radiation can take up to 5 years until you know if it truely worked. I feel like I've lost all my friends. And sometimes I get really embarrased that I'm 26 and look totally different than others my age. I am currently not taking any medications except for high blood pressure and vitamin D. I took myself off all the anxiety and depression meds. I feel pretty good most of the time. I joined this site in hopes to have some one understand and talk to about this rare disease. If any one could tell me about the pregnancy factors please contact me. Thanks for reading my blog.

    abrown1943@comcast.net

  18. Hi all,

    my MRI is tomorrow yay. Don't see the specialist till the 22nd though. Can anyone help me? I have a sore chest. I went to the doctors and I had a chest x-ray, but nothing showed. Now my chest is tight. It's not hard to breath, just anoying. It becomes harder to breath when lying down though. I get lumps on my ribs and they hurt. Doctor said they were probably calcium build ups. Does anyone get this? Not sure if i should go back? Toni

     

    p.s i tried using ventolin, doesnt work

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