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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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Jennifer (jennifer), Undiagnosed Bio

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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?

Renee (Renee), Pituitary Bio

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pituitary-location

I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.

I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.

She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.

Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:

» Extreme weight gain

» Moodiness, irritability, or depression

» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!

» Hypertension–possibly, but undetected because  of I am on meds for other heart anomalies.

» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine

» Hirsutism–embarassing, but true

» Hypercholesterolemia–to the point that I am on a medication for it

» stretch marks

» “moon face”–it isn’t too bad, but it is noticable.

» the storage of fat on my shoulders/back

Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!

Genevieve (JenNYC), Undiagnosed Bio

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to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Debbie (flawdnotclawd), Steroid-Induced Bio

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I am a 55 yr. old female recently diagnosed with Cushing’s.

Previous diagnoses included: diabetes, HTN, asthma, Chronic Fatigue, Fibromyalgia, high triglyc/choles., IBS. Still in process of testing to determine cause. Had multiple steroid epidurals in past few years. Have had symptoms for over a year.

Doctors misdiagnosed Cushing’s as Chronic Fatigue, Fibromyalgia, anxiety, depression, hypochondria. So fed up with arrogant judgmental doctors.

Have a great endo now who diagnosed Cushings and doesn’t treat me like I’m nuts.

Anthony G, Pituitary Bio

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The opening in a GE Signa MRI machine

The opening in a GE Signa MRI machine (Photo credit: Wikipedia)

58 year old male.

In 2009 was in excellent health. Have suspected something wrong with me for two years. Just was not feeling like my old self.

Diagnosed with Cushings October 8th, 2012. Developed symptoms of: Stomach extension (looked like I was pregnant), round face, skin easily bruses and tears, edema on feet and legs, high blood pressure, depression, brittle hair and hair loss, lack of concentration, & blury vision. Cat scan and MRI were negative, IPSS proved positive for Cushings.

Pituitary surgery performed on December 4th, 2012. Two microedenomas identified and removed.

Recovery pending.

Linda (Linda569), Steroid-Induced Bio

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I am 61 and have been taking prednisone for over 3 years without a successful taper. My journey begans with a cardiac ablation for PVC’s , that ended with my heart being punctured during the precedure. I came home after 2 days in the hospital without a problem. On the 3 day, pain in my chest was unbearable. I thought it was a heart attach. Called the Dr., he prescribed a prednisone pack, like you take for poison ivy. A week  so later, I was in the ER with the same pain. More prednisone, higher dose. ER visits have been to many to count by now. Many chest exrays, ultra sounds, echos, with no sign of fluid around the pericardium.

Last ER visit, June 2012, this time it was pleruisy. Seems this inflamation just move around in my upper body. So higher doses of prednisone and send home to taper again. Today I had a bad day, as I have been trying to taper and the pain comes back, this time in my shoulder and right chest. I took 25 mg. today and am pain free now.

My problem other than addiction to prednisone is that no Dr. will treat me. My cardi says its not his problem, even my primary will not treat me. Says she will not prescribe prednisone. An endo. Dr. at John Hopkins prescribed me 1 mg. tablets last year with refil, however, I am down to my last bottle and using fast.. The endo was my thyroid Dr., had the thryoid removed last Aug., anyway, I would like to know if anyone out there knows a Dr. in the D.C/ Baltimore Metro area that they have used that treats prednisone addiction? I am lost to fix this., with no help so far, unless I end up in the ER, then that is only a temp. fix.

I went to my regular Dr. last week, as follow up to ER and she said, ”It sucks to be addicted to prednisone doesn’t it. ”  Told me she couldn’t find anything wrong with me and was ready to leave, Iask if she could at least do blood work, make sure all was o.k., since I was on this drug. She signed the lab slip.I still have it, don’t even want to do that.. just depressed about the entire ordeal at this point.

Thanks for listening.

Jane (Jane) Cushing’s Bio

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I was diagnosed with Cushing’s approximately 10 months ago. My health insurance ran out so I have had no treatment.

The psychological symptoms are very bad – depression, anxiety, loss of emotional control.

All I am able to do is go to work and that is becoming very difficult. Despair.

Haven T (Haven T), Undiagnosed Bio

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I am a 32 year old female in Arkansas.

I have not yet been diagnosed with a disease but highly suspect I have Cushings.  Over the past 3-4 years I have developed a Buffalo Hump, lost my libido, have drenching night sweats every night, fatigued during the day, tire easily when I excercise, my hair is thinning rapidly, suffer from periods of depression, bruise easily, heal slowly, and scar easily.  I also have these little bumps on my arms and torso as well as stretch marks on my sides and upper thighs.  I have never had a weight problem but the past couple of years I have gained 70+lbs and have had little luck losing weight and/or keeping it off.

Every time I go to the doctor they do a blood panel and always come back with the same answer “Everything is fine”.  EVERYTHING IS NOT FINE!!!!!!!!

I recently was referred to a sleep doctor and during my appointment yesterday I told the doctor I feel like I might have Cushings and need to see an Endocrinologist.  I finally got my referral and hope I am on the road to a diagnosis of some sort and an explanation for what is going on with me!

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