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Nicola C (Nikkikicks), Undiagnosed Bio

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Hi 🙂 my name is Nicola and I’ve been sick since October of 2017.

I kept gaining weight around my face and lower belly despite not eating due to a horrible flu and sinus infection type sickness where I hardly ate for 2 months.

My doctor gave me anti depression meds, sleep apnea tests, hiv test and told me that I was just not active or eating healthy enough. I swore I had pneumonia as I could hardly stay awake and was so so weak. I had a car accident in 7/17 and so I had prednisone and that is when my symptoms started.

I have also been on hydrocortisone trigger point and epidural injections since then and kept feeling worse and worse.

I am trying to cope with constant sinus infections and still juggle work and my family.

I am 40 lbs heavier and I choose between working out, cooking healthy or functioning at work. The cold Colorado weather is like stabbing me with a million tiny  knives.

My family thinks I’m being dramatic and my boyfriend thinks that I can still work out 4-6 days a week as I did before my car accident.

At this point I’m trying not to cry or mourn the loss of my healthy lifestyle- I’m literally fighting for my life.

I’m just going to get my official diagnosis and then do all I can to recover.

God bless everyone and I pray that we get better super fast.

My cushing Dr has been a bit abrasive with me. But I will keep you posted.

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Abigail B (helpmepleez), Pituitary Bio

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The pituitary gland

The pituitary gland

 

 

I am 35 and I have been sick for the 13 years since May 2003, and for the first 12 years I did not have the correct diagnosis. My symptoms first started out with what seemed like sinus infections after sinus infection since then I have seen every different type specialist all across the country from the Mayo Clinic, Cleveland Clinic and doctor from all the top hospitals in NYC.

Three years ago I took a 24hr urine cortisol test that came back high (74) however after a negative dexamethasone test the endocrinologist ruled out cushings disease. I retook the 24hr urine test again the next year and the results were high 24hr urine (129) and negative dexamethasone test.

Over the past 4 months i have taken 8 -24hr urine test with the results between 60 -135 and I still can not get a positive dexamehtasone test or a positive saliva test.

My ACTH level is 8.

I had a mri that shows pitutary microadenoma

CT scan of my adrenals came back negative.

I tried ketoconazole raised the dose it to 1200mg a day without it helping at all. My symptoms got worse and cosrtisol levels were still between 45-60 (they got higher after raising the dose.

I have also gained weight usually in sudden burst of 2-3 lbs in one weekend even if I do not eat anything extra,

The doctor thinks I have cyclic cushings however without a two biochemical results documenting the cause of the increase cortisol he is at a loss how to proceed.

 

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Vicki (Pugmom), Steroid-Induced Cushing’s

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steroids

 

I am a recent transplant to San Diego and I am looking for a Cushings support group. I acquired adrenal insufficiency and Cushings about 3 years ago. I was given large amounts of steroids for numerous sinus infections, pneumonia, and bronchitis. I am 61.

I am trying to find an on-line or actual support group for Cushings folks or adrenal insufficiency. The last 3 years have been full of illness, numerous hospital stays, and a lonely road. I am tired of living alone with this health issue and would be happy to share my story with a group or others who have walked in similar shoes.

I take 25mg of hydrocortisone daily to maintain my current health status. I will check the message board for others like me and hopefully I can connect either in person or on-line with a group, I find that living with this health issue to be frustrating and at times depressing. I am trying to overcome being the disease rather than just a person who has Cushings. At times I just feel crummy for no other reason than my system is out of whack. I hope that I can find a group to be a part of and to hear their issues and offer any help I can from my experience. I am in the process of getting a medical team of doctors and see an endocrinologist in December.

This disease has had me on a roller coaster for 3 years. I don’t plan a lot of things ahead of the event since I never know how I will feel the next day. I am hoping there is someone else who has dealth with Cushings and what medications they are taking to make the disease manageable.
Thank you for reading this and offering any advice on locating a group with like health issues.

Vicki added a second version of her bio:

I have been living with adrenal insufficiency with a diagnosis of Cushing’s syndrome. I was diagnosed in 2012 and was told that I received this condition from having been given large amounts of prednisone for pneumonia, bronchitis, and sinus infections. I have no issues with my pituitary gland but I still demonstrate the same symptoms as someone with an official diagnosis of Cushing’s and live with taking steroids. I have the buffalo hump, the sweats, feel tired all the time, problems sleeping, moon face and weight gain as well as other symptoms. I have just moved to San Diego from Houston to be closer to our family. I am trying to find a group with the same type diagnosis or a group that I can be involved with to talk with. I realize that this condition is very rare and I am looking to be a part of a group where I can discuss the issues related with living with the diagnosis. I am very glad to have found this website where I am hopeful that there are others like me who also are looking for a group to discuss their issues.

It all started with a fainting episode in 2011. I broke my foot when I fell and saw a doctor the next day. I had been feeling so tired and sweating so much as well as having had the hump come up on my back a few years prior, which my doctor in Indiana didn’t think was anything but a dowager’s hump that could have been genetic.

I then became ill in 2012 with pneumonia and was hospitalized several times due to relapses of pneumonia and uti’s that put me in the hospital. I was having so much pneumonia and bronchitis on top of this other issues and was not getting any diagnosis other than adrenal insufficiency. in 2014 I had been hospitalized every month with one infection or another. My husband and I finally determined we were going to relocate to Houston, TX to see the doctors there. I was already on 40mg of hydrocortisone daily and still felt bad. I was almost gone on two different visits to the ER in Indiana and found myself on the floor unable to get up on one instance. I was on the floor unable to pull myself up for 7 hours in the dead of winter until my husband came home. I had renal failure and was not really expected to make it but I did. After a winter of these problems we decided that cutting off the hump on my back, as discussed by one doctor, was not the issue and we made plans to relocate to Houston in 2014.

I had a great team of doctors there and was diagnoised with Congestive Heart Failure, glaucoma, high blood pressure, high cholesterol, GERD, fibromyalgia, connective tissue disease, osteoparsis, adrenal insufficiency, and cushing’s syndrome.

I was in the hosptial with one infection or another for 1.5 years due to pneumonia that was caused by aspiration into my lungs. I had surgery, Heiller Myotomy in July 2015 and from that point the pneumonia has stopped. Thank God.

Since that time, we relocated to California to be nearer to our daughter and her husband and I have not had to deal with the pneumonia but till deal with the adrenal insufficiency and the Cushing’s syndrome.

Maybe someone has been though some of these same issues and would like to talk about what they are experiencing. I am willing to share my experiences also.

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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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Marki (Marki), Undiagnosed Bio

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Hi!

My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.

My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.

About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.

When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:

24 hour-

range- 0-50

me- 49.7

Midnight saliva-

range- .5-1

me- 9.16

So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!

Update:

My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂

Christina (Christina10), Pituitary Bio

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Hi everyone, I am Christina and am 22 months post op from transphenodial surgery of my pituatary macronoma. Like so many of the bios I have read on this site I spent years trying to get any doctor to listen to me, because while I insisted something was wrong and I had almost ALL the classic physical manifestations of Chushing’s, after running the basic thyroid panel I was generally dismissed with the advice that I needed to eat less and workout more- advice which infuriated me because as an active duty officer in the Army I was running 3-6 miles a day and going back to the gym after work and down to 1200 calories a day.

I first started to notice a marked physical change in 2005 when I rapidly gained 30lbs in less than 6 months, at the time I was in Law School full time so of course the doctors attributed it to stress even though I was still maintaining my physical activity level as a reserve officer. I also started noticing my once long and full hair thinning and breaking to the point you could really see my scalp and my skin became pale and translucent with constant breakouts. This is also the time when the mood swings and headaches started along with the reoccurring sinus infections and inability to heal from the smallest injury along with black and blue marks all over my body.

Faced with going back to active duty the next year on orders to Korea I basically starved myself and worked out 3 or more hours a day and managed to loose about 25lbs    but I could never get below 160lbs no matter how hard I tried, which baffled me since I started Law School at 130! I begged the doctors every time I went in to run tests but they insisted I was healthy because my blood pressure was always 106/65 and my thyroid tests always came back low but still in normal ranges. Frustrated and defeated I pretty much starved myself and lived on caffiene and supplememts for the next 2 years, trying to avoid the doctors at all costs and doing everyting I could to just make weight when it came time for Army physical fitness tests.

My next run in with the doctor came just before my deployment to Iraq. I had rapidly gained 20lbs back seeminingly overnight and I was now having full blown hotflashes along with headaches so violent they caused my right eye to pulse. After basic blood tests came back relatively normal except for an elevated red blood cell count (which should have been a red flag for the doctor to connect the dots) my doctor informed me she thought I had Hepatitis C and wanted me to go to a Veteran’s weightloss group which consisted of being weighed in in front of a group of 25 cranky old men at the VA!!!!! I had further testing to rule out the Hep C which Iknew I didn’t have since I have never touched an intravenous drug in my life and have always practiced safe sex in my relationships. Of course it came back negitive which should have prompted more testing but once again I was just told to eat less and work out more. The doctor specifically told me I led a sedintary lifestyle because I had an office!!! At this point and after trying the support group for a couple of weeks and being humiliated having to weigh in in front of a room packed with men all over the age of 60, I told the doctor she was basically a moron and that it was impossible that I led a sedintary lifestyle because I ran 6 miles before she even gets up in the morning. Needless to say it was the last time I saw her.

Fast forward 18 months later and I am now back from Iraq, (having lost 15lbs from the heat and Army food!) and am starting to notice the weight returning and hot flashes getting worse, to the point I would just start pouring sweat down my head and back. My regular doctor insisted my body was just needed time to re-acclimate back to the climate! Tired of struggling like most Cushing’s sufferers and under constant pressure to be fit for my job I turned to plastic surgery and had lipo and a tummy tuck thinking it would take care of all my problems. Wrong Wrong Wrong! The surgery went well and I was elated with the results, until the tissue around the suture site started to die. (as you know the inability to heal is a classic sign of Cushing’s) So after walking around with a hole (yes an actual hole in my abdomen!!!) for 2 weeks I had to have reconstructive surgery to fix it. About 8 weeks post op from the surgery even though I was literally only drinking 3 protein shakes a day (because I had just spent THOUSANDS of dollars on cosmetic surgery), I was now gaining weight again!!! My surgeon looked at me in contempt for ruining his work until I told him to look at my breasts which had spontaneously grown a cup size since the surgery. Looking back that was actually an Epiphany in my struggle with Cushing’s because he did look, and then he looked harder at the fatty deposits centralized on my neck and trunk and thighs and in a moment I will never forget, said nonchalantly “I think something else is going on hormonally,” and handed me a lab slip!

That lab slip changed my life. When the results came back I knew finally someone was going to believe me, because not only did my new primary care doctor want to see me but she wanted me to have an MRI because the lab results came back with a prolactin level 86.6 and I certainly was not pregnant. 3 days later the doctor called with the results of the MRI and told me I had a brain tumor, but the good kind, and that there were excellent treatments. Needless to say I was less than thrilled with my “good” brain tumor and wanted the thing out of my head and out of my life as soon as possible!!! But at least finally I had an answer and began doing as much research on pituatary macronomas as possible so by the time I went in for the first round of follow up tests I knew more than my doctors.

What followed from my diagnonsis in May 2010 to the present has been the longest 2+ years of my life. I wanted to have surgery ASAP, but because I tested positive for both Prolactin and ACHT/Cortisol the doctors were divided on a treatment plan and made me do 3 months of observation during which I ballooned up to 198lbs!!! I was also suffering daily migranes and mood swings and harrassment at work because now the physical changes could not be hidden. I started to feel trapped in a body that really wasn’t mine.

After surgery I went into complete adrenal failure and was on hydrocortisone for 6+ months. I felt so much calmer after ther surgery even on the steroids, no more mood swings and I immediately started loosing weight with no effort. Although the nausea and daily throwing up probably helped that cause. But everything hurt, and I mean everything, it would hurt my feet to touch the gound and I would get tired easily. In the 7th month, right after a breast reduction to get me close to my pre Cushing’s size and to help with the sever back pain, I weaned of the steroids which brought more challenges and body aches, but with a lot of vitamins and sticking to a healthy lifestyle I managed to go from barely being able to jog a mile right after surgery to finishing my first post op 10K this month in Central Park, NY.

So here I am today 22 months later and extremely cognizant of how far I have come in keeping off the 30lbs I lost after surgery and gaining back so much of my old self, but also frustrated because I am still suffering Cushings like symptoms and the doctors and I are at an impass again becuase they refuse to really look at my symptoms. My headaches have started to come back more intensely and I have noticed a marked increase in mood swings and hot flashes. I have also (despite living with a personal trainer) hit the wall in my struggle to loose the last of my “Cushing’s weight.” Countless hours of research has also yet to produce any information on coping with Cushing’s after surgery, which is why I am so grateful to have finally found this site.

I am hoping by connecting with other Cushing’s patients I can get a few of the answers the doctors don’t seem to have (or at least the ones I have seen anyway)!!! Because I personally am tired of Cushing’s controlling my life!

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