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Alexis (Alexis), Undiagnosed Bio

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I’m 32 year old female from Virgina Beach. I started to write this really long story here but then decided I will wait and see if my test comes back positive for cushing’s. I will say that I have been dealing with the craziest symptoms over the past 6 months. Look back I think my health issues are related to this disease. I have always dealt with kidney stones and allergies.

My current symptoms include

-Buffalo Hump

-Horrible pain in back, arm and legs

-Kidney Stones

-Mood Swings

-Gained 25 lbs

-Fogginess, can’t complete sentences

-Moon Face

-Swelling in neck. Neck went from 15.25 in to 18 in.

-High Mono count on blood test and low Vitamin D

-Lethargic

-Crazy sensations, numbness, burning, aching

-Really high resting heart beat

My Primary Care Doctor, Pain Management Doctor and ER doctor’s had no clue. Most look at you crazy or they know something is wrong but had no idea what. They really didn’t do any detailed testing until 2 months after all the symptoms.  I was so frustrated. They got me into a Neurologist which I see this week. Luckily, I switched primary care doctor’s and after one visit  with my new doctor she decided to test me for Cushing’s. I’m a very detailed person and really started to pay attention to my symptoms. I started to keep a journal and took photographs as my body was changing.  I think my new doctor had an advantage.   I’m grateful I met her and that she took time to look at my history and is willing to think outside the box.

Mind you I am an athlete, I love the outdoors, wakeboarding and being active is important to me. Since March I have completely changed. I’m lucky to make it to work. I always look forward getting away from work and going home to sleep. The pain is unbearable in my legs and back.  I refuse to take medicine until I get a diagnosis. I don’t want any meds to mask the symptoms.

I work in a recreation center where my heart belongs and it makes me sad to see how my body has changed but I’m grateful for my new doctor and hopefully will get back to normal soon.

Whether I have Cushing’s or not I’m glad I came across this site to see such a wonderful support group.

Sincerely,

Alexis

Sarah (sopdiva), Pituitary Bio

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Hello, My name is Sarah. I am currently researching and undergoing test related to Cushing’s. I am turning 30 this year and have decided I have ignored my body long enough.

I was diagnosed with 2 pituitary tumors at the age of 15. At that time I was having horrible headaches, neasea on a regular bases, balance issues, gained 80 pounds in 4 months, and some crazy stretch marks.

The last time I saw a doctor for the issue was when I was 18 because they could not figure out how to treat me. Since then I have gained 240 lbs., have hypothyroidism, have had 6 carpel tunnel surgeries, and have issues with blood sugar levels. I am a large woman but do not eat like one…. I swear. My husband and I are doing a diet diary to take to the pituitary center with us. Sounds crazy I know, all I have ever heard is that I control my weight , so stop eating.

I saw a TV special about Cushing’s and my husband and I both agree that is me. The woman that they featured , my body is shaped just like hers. I hope that I can find a dr. that will listen to me.

Sonja D (Kiwi), Ectopic Bio

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Diagnosed in 2003 with a Carcinoid Lung Tumour which was surgically removed in May 2003.

After a number of years of “not feeling myself” and consulting with the family doctor, it wasn’t until I showed him hair growth on my face and asked him if we had completed all and every test possible related to hormones.

Two tests to do; one was cortisol and the other testesterone.  Results were in the next day, showing cortisol levels four times the normal range.  Bingo!  it was like I had won the lottery.

A flurry of additional tests were conducted, a visit to an Internal Medicine Specialist and finally a referral to the Endocrinologists at the University Hospital.  On meeting the endocrinologist her first words were: “It’s very nice to meet you.  I’m very excited you were able to come in today’.  Is she nuts, I thought.  Since when is a doctor “excited” to meet a patient?  This was the beginning of a most wonderful patient/doctor relationship and it continues today along with the full team of endocrins at this hospital.

It was confirmed I had Ectopic Cushing’s Syndrome in February 2011.  My health deteriorated rapidly with no sign of any tumour which was likely the cause of the extremely elevated ACTH and Cortisol levels.   A Bilateral Adrenalectomy was performed in May 2011 and in November 2011 the elusive lung tumour was sighted in the same location as the one removed in 2003.  It has not grown in the last six months so it is being left “undisturbed” at this stage.

Lisa (sagrae), Undiagnosed Bio

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Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

Rebecca D (RebeccaD), Pituitary Bio

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Hi all!

I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.

I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.

I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.

In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.

I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 😦 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 😦

Desirae (Desirae805), Undiagnosed Bio

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I am a 24 year old newly graduated registered nurse (dec 2011). Who is currently undergoing testing to confirm or r/o cyclic cushings at UCLA.

I have always struggled with my weight and self esteem and I finally had enough in april when I went to see an endo to see what was going on I mean how could I not be losing weight netting 1100-1200 calories aday and doing spin class and 5k walks! I have done every diet known to man and ws even anorexic for a while.

I had elevated urine test at UFC of 69.7, not high enough to confirm cushing but is very suspect because of my s/s. I have round, face, abd obesity (most people think I am pregnant), stria, hair loss, fatigue, anxiety, tachycardia, muscle cramps (low potassium), buffalo hump, and so on and so on. I am so frustrated I just want to cry all the time, I just want to know what is wrong.

Curently I am to see my doctor in 6 weeks and have 10 24 urines and 12 salivary cortisols to do. I am a nurse and doing a 24 urine at work is hard. I am supposed to get married next year and I want to feel beautiful not sick, not tired, not neck pain, and not heavy.

I am tired of hearing you probably don’t have that it’s rare when obviously something is going on. AND I HATE hearing your YOUNG you can lose weight when ever you want.

Jestina (jestina902), Pituitary Bio

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Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Kristina, Undiagnosed Bio

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Hello everyone, My name is Kristina and i am 21 years old.I am so happy that i found this site because there are so little information about Cushing’s, especially real people stories. If not internet or tv i still wouldn’t know what is happening with me for a quite long time.

Hm i don’t know where to start, as a kid i always was very thin, and everything started changing when i was 11 or 12 years old i started to gain more and more weight, and after few years was diagnosed with hypothyroidism, i took medicine and lost my weight , but when i was 15 everything started changing again but much worse, i was always hyperactive, happy, enthusiastic, always got best grades and ect… i was always depressed, always asleep, feeling dizzy, everyday felt exhaustion, i even started missing schoool , didn’t even went where because i didn’t had energy to get up from bed and get dressed, and also with +66lbs i really didn’t wanted to show my face anywhere. And everyday everything get worse and worse, because of all this lack of energy and motivation i quit law studies, and then other studies, i don;t have energy to do simple house chores, my muscles always hurts, my head everyday hurts, i can’t sleep, i still get on weight every week almost, i have 800 kcal diet, and do some exercises, and weight still puts on… my hair is so ugly, my skin is very dry i got eczema that my skin doctor can’t cure, i broke my kneecap with very light impact i have many many other problems, and when i saw this on house md and mystery diagnosis i started my reseach on internet and library, i took very hard road that my endro would write prescriptions for all blood tests and MRT and now i am waiting for results and am very be anxious and have still many many questions.

I know that all cases are different but maybe someone could share, if after treatment or surgery, how hard is to loose weight, and not feel tired all the time? what to expect?

Lisa (Lisa), Pituitary Bio

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I was diagnosed with Cushings in Feb 2011 at the age of 30, after 6 months of inconclusive testing to find out what was going on with me.  Bone marrow biopsy, CT scans, MRI’s, urinalysis, bloodwork, you name it, it was done.  The first symptom I noticed was my left foot swelling (edema) after a workout injury.  The swelling remained long after it should have, and I thought I damaged my lymphatic system.  A trip to the endocrinologist and a CT scan proved that untrue, but he did notice I had an enlarged spleen and a high red blood cell count.  He didn’t seem to think that was a concern, but around that time I also began to experience a constant pain in my right flank.  So I went to a gastroentrologist.  Then a hemotologist, then a cardiologist, etc.  My final diagnosis came after my hemotologist ran a urine sample and noticed a highish level of cortisol.  She sent me back to my endocrinologist.  Before I went, I started a heavy Google search for what high levels of cortisol could mean, and came across Cushing’s.  I knew that was what I had.  I had been diagnosed with a prolactinoma 4 years prior (which I had told every doctor I had seen) and no one made the connection.  I demanded my endo test me.  He didn’t want to, telling me that I hadn’t gained weight and that people who had Cushing’s were really sick.  I demanded, and he gave me a supression pill to take the night before I came in for bloodwork.  He called me with the results a couple of days later, accusing me of not taking the pill.  Of course I took the pill, I said.  He said that the pill hadn’t suppressed my levels as it should have, but he didn’t believe it, and wanted me to then do a 24hr cortisol urinalysis.  I agreed, but also scheduled an appt with a neurosurgeon.  The neurosurgeon had the same hesistation, but also did the 24hr test.  A week later, the tests came back in.  My cortisol levels were 8 times what they should have been.  I definitely had Cushing’s.

I had transsphenoidal surgery a month and a half later.  I spent a week in the hospital that can only be described as hell.  My body crashed hard and every part of me ached.  The next four months proved equally as challenging, my energy being non-existent and my replacement dosage being difficult to keep correct.  But a year and four months later I’m very close to being off the replacement dosage, and feeling back to normal.  Thank goodness for Cedars Sinai pituitary center for their attentiveness and care.

The biggest lesson I learned was to trust yourself.  I did not gain weight when I was sick.  I did begin to develop a moon face and a small tummy, but my weight remained constant.  I was waking up at 3 in the morning every day, my blood pressure spiked, my muscles weakened, I bruised easily, I lost hair on my head, my skin became mottled and thin.  I don’t know if the weight gain would have happened eventually or not, but I truly believe I wouldn’t have stayed alive long enough for that to happen… the change from healthy to sick happened so rapidly in my case that if it kept up I doubt I would have lived much longer that a year or so.  I worry about recurrence every day, and have had numerous visits to the ER since surgery due to adrenal crisis, but at least I know what to do when that happens and can take care immediately.  And as I’m sure most of you would agree, I treasure every healthy day.

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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