Cushing's Syndrome Support Group

Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going through.

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  • lalylyli

    Fluctuations in cortisol levels

    a few months ago I asked for a my hormones checked because of hair growth. I thought I was going to get a PCOS diagnosis which I did. I am insulin resistant and taking metformin. I had my cortisol levels check. They were less than one. A week later they are high. Does anyone know why they would fluctuate like that? 
  • WarriorGal

    Could I Have Cushing's?

    Hi 72-y-o female with RA. I have been on prednisone in the past, but not currently.I have a cyst on the head of my pituitary.Symptoms: Weight gain while trying to lose weight (5 pound gain so far); hair loss; fatigue; total and sudden loss of libido since menopause, when I also lost almost ALL body hair!BUT: I have LOW to normal blood pressure.I also have low body temp so it may be thyroid, but...
  • deleted_user

    Serious question: Does my case sound like cushings

    I will try to make this short and sweet, but my journey has been a long one so far. I have been a dancer my whole life, and in really good shape. I studied exercise science in college, and I am applying for schools right now to be a dance team coach. So there is my background... I exercise and I eat healthy, but my body is doing crazy things and I can not seem to make it stop. When I was 19 years...
  • cavu02

    Familiar Cushing's Disease

    I have Familial Cushing's. My father, my niece and I have all had pituitary surgeries. My first surgery was in 2005 and it failed to remove all of the tumor. Between 2005 and  my second surgery in 2006, I felt far sicker (aka symptomatic) than I ever had in my life. On yearly follow up, it was determined, through cavernous sinius testing, that my ACTH producing adenoma was active and needed to...
  • betabluemuse

    Can Cushing's cause this?

    I know of all of the "typical" Cushing's symptoms ("moonface", central obesity, fatigue, "buffalo hump", etc.) but I'm wondering if there are any atypical symptoms of Cushing's that present. I ask because for about the last 2 years I have suffered from gastrointestinal upset (think diarrhea and loose stools, as well as nausea). I have been to a GI doc who has ruled out Celiac, Chrons, Ulcerative...
  • robuk

    I think I may have Cushing's Syndrome

    I think I may have Cushing's SyndromeHere are my Symptoms: SeizuresHead achesTrouble thinking/rememberingBlinkingStrange fat stomachCrying/Emotional about silly thingsLosing hair on my headStrange Purple marks on thighsCant deal with stressful situationsLow energyPost exertional malaise Tactile AllodyniaIrritable bowelsFeeling hot and coldDepressionDifficulty staying asleep, I wake up very early...
  • lsuzie

    Cortisol test results

    I recently had a cat scan and it showed both adrenal glands to be mildly enlarged. I had an afternoon blood test for cortisol and it was 12.5. Is this a normal reading or is this high?
  • mrdad

    Update after adrenal removal

    So Surgery has taken place on Oct 22 2014. My wife's Adrenal glands removal surgery went well, no complications. The battle was several days after the surgery at home. They removed her from ketacortisone and several other blood pressure meds and put her directly on Cortisone 100 mg and florefern 0.5 mg for her intake a day and after 4 days had her down to 50 mg a day , and that is where all...
  • coby23

    How do you manage your Cushings symptoms

    I have quite a few symptoms that have developed quite recently and my doctor wants me to taper from 10Mg of hydrocortisone over a 6 month period* weight gain around my middle - gained around 10 kg in 12 months* pre- diabetes, even though i have a very clean diet* itchy skin and hives* insomnia* adrenaline problems, especially at night* brain fog* a feeling of anxiousness in my body (not emotional...
  • Maika

    please give me some good news

    I recently went to the doctor because my hair was falling out again, my body was getting weird bruises that kept returning even when they were nearly healed.I have a lot of other weird things that have been going on but it was always chalked up to fibromylgia and chronic fatigue as well as menopause. I was so relieved when my doctor said it could be adrenal fatigue or cushings...because he said...
  • juliemerrimanjohns

    cushings syndrome

    Can anyone tell me how long it takes for the pain weakness to let up or diminish after having a pituitary tumor taken out? I am four months post surgery and I still have a lot of body aches and pains everywhere I have been taking pain pills but I just want to get off everything asap. Anyone know approx. when? Thanks Julie
  • cushieyoungster

    New to Cushing's

    Hi guys! This is my first post, I am reaching out because I really need some support & answers. I am 22 year old female who has been recently diagnosed with Cushing's. I had a few MRI's and it is coming from a pituitary adenoma, that is about 1 cm large. This has only been a few weeks and they have already scheduled the surgery! I have no time to process, let alone figure out how I am going to...
  • melissaamato


    working out alot but still not loeing or gaining any weight
  • melissaamato


    what can i use for hair loss?
  • hen4jakes

    anyone have "left side issues"?

    I fell back in July of 2014 and ended up with a sort of bulging puffy area on the base of the left side of my neck. I have weaned off of the medicine, Entocort, that brought on my Cushings. The doctor had me on that medicine for 8 years. I have weaned off of the Entocort and am down to a maintenance dose of 10 mg of cortisol in the morning and 5 mg in the evenings. I have swelling in my legs,...