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Debra LF (DebraLF), Undiagnosed Bio

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Hello, I  am in search of opinions please.

I present with most of the outward physical characteristics: age 57 “weight gain (obese which began about 1991 with a sudden 60 lb increase in 2 months and no explanation, physician had wanted me to go to a Mayo clinic for eval but at the time I could not spare time nor expense…and more recently continuring weight gain, easy bruising, (menses stopped at age 50, but don’t recollect too many probs except migraines), ravenous appetite, occasional trouble sleeping, depression or mood swings, anxiety, fatigue and altered mentation which is trouble concentrating or decreased memory and now diagnosed ADHD.

1-3. Physical abnormalities include new onset obesity, mine is more recent weight gain, primarily in the abdominal,  buffalo hump which presented suddenly a few summers ago but has been brushed off by doctors…, rounding and reddening of the face which began about ten years ago, thin skin, decreased muscle strength, high blood pressure, and excess hair growth on face, have to shave every day, some times twice, have 5 o’clock shadow, but I have already been to a local endocrinologist in Billings, Montana, there are only a couple in this sparsely populated area, and none of the lab tests showed anything particularly abnormal…open to suggestions, thanks so much…

Jenny (Jenny), Adrenal Bio

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Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome.  I am married with two children ages 10 and 4.  My husband is an active duty Marine and I am a former Marine.

I’ve always been healthy up until now.  I had pretty much a yawn worthy medical history and I wish I still did.  I guess it started two years ago when I started having to use the bathroom frequently at night.  I did go to the doctor and they just told me to quit drinking before bedtime.  I chalked it up to having children and maybe just a weak bladder.  I wasn’t thinking rare disease.

Then I noticed that I started to gain weight and my close weren’t fitting right at all.  I chalked that up to sitting at my desk job all day and not getting enough exercise.  I did go to the doctor to have my thyroid tested and it came back normal.  So once again I am thinking it is me and I just need to exercise more.

My husband received orders to California and we moved here in July of 2012.  By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress.  Determined to get back in shape I start exercising everyday at 630 in the morning.  Normally I am not a morning person by any means but since we moved here I find it hard to sleep.  I worked out for three months following an exercise regiment but the weight stayed on.  My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well.  I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad.  I had them test my thyroid again, it was normal.

Once again determined to beat the weight I started walking vigourously and watching my calorie intake.  I noticed that I would have tingling in my toes at times and that my calves seemed weak.  I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going.  My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels.  I knew something was wrong but I couldn’t put my finger on it.

I started to do my research on the internet and that is when I discovered Cushing’s.  But I thought it is so rare I can’t have this.  I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.

In March I went back to the doctor and told them to test my cortisol levels.  My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California.  By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.

The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done.  The x-rays did not show anything so they sent me on my way with crutches.  By the 4th day of vacay I stayed in bed resting because I really couldn’t walk.  I got up to use the restroom and I had the crutches and fell backwards.  I ended up fracturing my hip.  I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.

They had a really hard time keeping my blood pressure under control during my hospital stay.  While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23.  Well upon our arrival back home I was referred to Orthopedics because of my hip.

Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo).  I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.

Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland.  I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.

Is there any good news out there?  I really hope so, I just want to be healthy and enjoy life again!

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Catherine J (Catherine Jones), Pituitary Bio

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In November 2009 my PCP diagnosed me with pituitary Cushing’s Disease.  His diagnosis was confirmed by an endocrinologist at the University of Washington Medical Center in Seattle, WA in January 2010.

English: Concept of Gamma Knife Stereotactic R...

English: Concept of Gamma Knife Stereotactic Radiosurgery (Photo credit: Wikipedia)

In March 2010, I had my first pitutary surgery at UW Medical.  My second surgery was in September 2010 at the same hospital.  My third surgery was at Harborview Medical Center, also in Seattle in May of 2011.  After my husband and I learned the third surgery had also failed I had gamma knife radiation on half my pituitary gland in November of 2011, also at Harborview.

After waiting what seemed like a very long year and a half we decided to have my adrenal glands removed by a surgeon from the Seattle Cancer Care Alliance in May 2012.

I am finally without Cushing’s Disease and looking forward to a “normal” life.

Kristi (kingskid), Undiagnosed Bio

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Hi my name is Kristi and I’m seeking any help or advice on Cushings.

I had always been active growing up into sports, running, weight lifting and horseback riding.

27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy.  Less then a year later I was carrying my second daughter.  I had no appetite and could barely eat but was gaining 10 pds every other day.  My blood pressure soared and I was diagnosed with pre-eclampsia.  I have been sick ever since I gave birth.

In the past 20yrs I have put on over 150 lbs and I can’t get it off.  I was told I had a fatty liver and my cholesterol and triglicerites are off the chart.  I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/   I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping.  Get cyst on my breast, head, ears and pubic area.  Have little hard bumps on pubic area that never go away.  No sex drive left for husband and even when we are active it’s very painful..  Major swelling in face, neck, legs and feet, backaches, headaches.  When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair.  I sweat even in winter.  I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast,  behind neck and arm pits.

Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit.  My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery.  It has been 5 months and I still can’t heal.  Have been packing the wound every day and seeing the surgeon every 2 wks.  Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.

Today I recieved a call that the urine test I took for cushings came back with normal levels.  Needless to say I sat down and sobbed.  I am 46 yrs old and I have been sick for half my life.  I have seen so may doctors, been through so many surgeries and painful testings.  I have been told over and over that there is something wrong but the Doctors can’t find it.  I thought cushings was the answer and that I could finally get treatment and get better.  I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers?  Where will I get the strength?

Grace (Grace), Undiagnosed Bio

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Hi Everyone

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.

Thanks for listening

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SoVeryTired, Undiagnosed Bio

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Have had a hypothyroid problem for several years. Learning now that I may also have a cortisol problem.

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