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Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.
The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully.
On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.
I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.
I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.
At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The stretch marks followed the weight gain. I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence. My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.
The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.
I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.
My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?
The MRI came out normal, only showed that I suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.
From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.
I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from Uni this year but due to my health problems I’m 3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point of view but I feel if I had a child I would do all I could to help them get better.
The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.
As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.
Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.
I have a very good friend who appears to me to have many of the Cushing’s Syndrome/Disease symptoms.
Several years ago I persuaded her to have her doctor run a 24 hour test. This test came up negative, and she has refused to consider pursuing this possible diagnosis ever since.
Currently my friend is experiencing debilitating emotional symptoms in response to issues within her family. She is 59 years old with serious high blood pressure and severe sleeping problems.
I am worried that she will not live much longer unless she seeks medical help. I am seeking tips from people on this forum in an effort to get my friend the medical help I feel she needs.
August 31st, 2010, I had a macroadenomas pituitary removed transsphenoidally by Sandeep Kunwar, MD at UCSF.
I displayed all the typical symptoms for years, but was not “officially” diagnosed until I developed pathological bone fractures. Even all the fractures were not recognized until a full body scan showed the multitude of fractures. I feel, with time, I do feel much better. My body will, of course, never be the same.
The most disturbing aspect for me at this point is memory loss and the inability to form words. I know words exist for what I’m trying to say… but I can’t remember what they are. And my short term memory is a constant problem.
I would love to know if anyone else is having these same issues. And anything else post surgery. It is so hard to stuggle with these memory issues with any social situation !!
Hi I’m Becky a 34 year old wife, mother of twins and teacher.
I’m having surgery to remove a pituitary tumor this week and am told it will really help to alleviate the Cushings symptoms I’ve had for years!! I wish I had had this diagnosis sooner but I know I’m lucky to have it now as I had planned on bariatric surgery as my last hope.
The opening in a GE Signa MRI machine (Photo credit: Wikipedia)
When the headaches became too much to handle and my face went numb I was given an MRI and now I know the truth.
I’m new to this, scared yet hopeful. I’m determined to get control over this but still, this is hard for me.
I have been battling Cushings Disease for many years. I had transphenodial surgery at the Mayo Clini-Rochester in April of 2008.
Recently my numbers were high again and I can feel that my Cushings is back. I just got done with the long testing process and am waiting to confirm a appointment for a bilateral adrenalectomy. If anyone has had a BLA I would appreciate an e mail. I would like to hear it all- the good, bad and the ugly. I would also like to know if this made your quality of life any better and tips and tricks for recovery. I am very scared. This decision is a lifetime change but one I am willing to take becuase of how miserable I feel now.
I have two children and a husband that although are VERY supportive still need their Mom/wife to be an active part of their lives. Thank you!
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
My life has changed a lot in the past year. Last August, I was diagnosed with Cushing’s but if it wasn’t for my boyfriend watching a special on Cushing’s I would still be battling the symptoms today. About 5 years ago I started to gain weight. I’ve always been very active and eating protein diet. I would exercise 5 -6 times a week and still gain weight. It didn’t make any sense to me. I had a personal trainer and he didn’t understand why I wasn’t losing wieght. My stomach continued to get a bigger pouch. I looked pregnant. Over the course of the past few years my weight went up and down. Then I started bruising very easily. People probably thought I was in abusive relationship which was not the case. I had my blood tested for being anemic. My white and red blood cell count went up and down. The doctor’s did not know what was going on and sent me on my marry way.
July 2012, my life changed. My boyfriend caught the end of special on Cushing’s. He asked me if I’ve ever been tested for it? I said “No”!! I was telling my mom about it and how my boyfriend felt I should get tested for it. I really didn’t want to go to my doctor and say test me for Cushing’s. She told me to go get tested. The more I researched it the more I realized I may have this. I finally made an appointment. I went to my doctor and highlighted all the related systoms. I had 11 out of 13. She believed me and started testing me. After all the urine, blood, CT and MRI scans. They diagonosed me August 2012.
I must say I’m lucky things fell into placed. It wasn’t long after my diagonses I was making appointment with Dr. Q at John Hopkins University to have my tumor removed. I
Location of the pituitary gland in the human brain (Photo credit: Wikipedia)
He would have to remove my gland if he wanted to remove the lesion. Which means I would not have any hormones. He did not want to take that away from me since I’m only 28 and have a lot of life ahead of me. 6 months post surgery I’m still taking Hydrocortisone. They are slowly weaning me off the drugs. I can see a few changes. My memory and concentration is coming back. I now have definition back in my face. My weight is still up but that’s due to steriods. I hope that comes down once I’m off.
I beleive I was diagonosed at the right time. It seems like my symptoms took a turn for the worse in a matter of month after I was diagonosed. I wonder today what my life would be like if my boyfriend never saw the special and I never had the surgery. Dr. Q and him saved my life!!! I just pray everyday that the lesion does not turn into Cushing’s. So far, I’m in remission!!!!
One note to all my fellow Cushie’s ~ You have to fight for yourself. Cushing’s is hard to diagonose. If you’re doctor’s don’t believe you find someone who does. Don’t give up!!!
i am not sure that i have cushings yet, as i have just made my first appointment to discuss this with my dr.
I first noticed a small hump on my back about a year ago, but just assumed it was poor posture. (yes, i tend to slouch a lot).But, i have been gaining weight steadily, despite weight watchers, low carb diets, trying to exercise regularly (difficult when you are so tired you can hardly get off the couch) (i assumed this was due to depression). i’ve gained about 40 pounds over the past year. I realize this doesnt sound like a lot , when some people with this disease gain that in a couple of months, but ive always been able to lose really easily.
I dont have stretch marks either, but i have so many other side effects listed (the buffalo hump it seems distinguishes this from a lot of other things. im really scared that ill have this disease, but on the other hand, at least i’d know what is happening to me. I just cant get a hold on my own body. its so awful.
I dont know who to ask, but is there any other disease that has similar symptoms AND a hump?
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