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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Megan (Gaff228), Adrenal Bio

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adrenal-location

 

Hi everyone. I’m a 32 year old female. 5’5″ and currently 178lbs. I have a unilateral adrenalectomy on Wednesday, June 22, 2016. I’m just under a week post-op and feeling pretty good.

My story begins 6 years ago. I had always been thin. Too thin. People commented on how thin I was. But that was just me. I was a vegetarian, active… but not actively trying to be skinny.

In June of 2009 I began to gain weight. By December I had gained almost 25 pounds. I went to every doctor I could think of…. and everyone told me the same thing: “Eat Less! Workout More!”. Having been pretty healthy to begin with- I couldn’t figure out what I was doing wrong. I got a personal trainer, signed up for a few 5ks and joined Weight Watchers.

Every day I was discouraged as the scale went up and nothing I did seemed to work. My hair went from dirty blond to VERY dark brown, thick but fine to very coarse and curly. I started to bruise really easily. I stopped sleeping. I got the buffalo hump (although it took me 6 years to find out what that was)….

I stopped wanting to see people or go places. I was embarrassed by my new shape and how easily I got tired doing things I had done so many times before.

3 states and 11 doctors- including specialists- later…. I had a routine CT scan done for ulcerative colitis. The tech that did the scan noted a tumor on my adrenal gland. My GI doctor asked me about it- I had never been told there was a tumor before- and sent me to an endocrinologist. That was in October 2015. My endo tested and tested and tested…. and finally- in April 2016 diagnosed Cushings.

So like I said, I’m a few days post-op. On 20mg of HC 2x a day right now. Still sore and puffy and hoping that I will see an improvement in weight/sleep/bruising soon!

I’ll keep you updated!

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Heather (HeatherKY), Pituitary Bio

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golden-oldie

 

From Monday, February 2, 2009

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

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Andrea L, Pituitary Bio

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A Golden Oldie

I first noticed something abnormal about my health in the summer of 2009, at age 23. I suddenly developed severe acne when I had had clear skin since I was a teenager, and I noticed more hair on my face and body than I was used to. In retrospect I realize that I’d also had bouts of weight gain, a buffalo hump and excessive sweating during my adolescent years, but I didn’t think anything of it at the time.

Around the same time I noticed the acne and hair growth, I also started putting on weight. I’d been on the thicker side for my height since childhood, so I decided to join Weight Watchers. Even though I was hungry a lot of the time, I stuck to the plan religiously and lost about a half pound per week. It was slow, but I was moving in the right direction so I stuck with it. I had bouts of fatigue throughout the process, but I would just assume that I needed to tinker with my diet – more protein, less protein, more fruit, less fruit, whatever. I tried a lot of different things, always focusing on getting adequate nutrition, but never had the energy that my Weight Watchers buddies seemed to have.

About six months later I finally went to my mom’s endocrinologist when I was visiting my parents in Texas. I was concerned that the acne and hair growth meant I had PCOS. All those tests came back normal, so the doctor gave me a 24 hour UFC just in case. It came back elevated, and she said I ought to follow up with an endocrinologist in New York where I live.

My next menstrual period didn’t come until 4 months later, and then they stopped completely.

My new endocrinologist in New York ordered more tests (you all know the drill). Over the next six months or so the 24 hour UFCs kept coming back high, salivary cortisols were normal or high, and one dexamethasone suppression test was kind of ambiguous. The doctor said that my urine volume was really high and might be screwing up the results, so I retested after limiting my fluid intake. That UFC came back normal, so I was instructed to follow up in six months.

As if on cue, the months following my normal UFC were great. For some reason I finally felt like I was bursting with energy. Beyond that, I had lost weight and even landed my dream job. At the time I assumed that the energy was from finally finding the right balance in my diet. The acne and hair growth were still there, but as far as I was concerned it was nothing that couldn’t be solved with some tweezers and makeup. Later I noticed in photos that even though I had lost weight, my face was much rounder than it had been before.

The nightmare began in January of 2011. I started feeling more anxious than usual. I began to cut more and more things out of my schedule because I didn’t feel like I had the mental energy to handle my normal workload. I had to take a Benadryl most nights to sleep. I started suffering from regular constipation for the first time in my life. My appetite increased markedly; I kept feeling less and less satisfied with my normal diet. I gave in and started rapidly gaining weight again.

After a particularly stressful week in February, I asked my mother to stay with me in New York for a little while, admitting that I had been feeling out of sorts. I figured I’d take a week off from work and just do fun stuff and I would be right back to normal.

…Wrong.

The bouts of fatigue returned, this time so crushing that I didn’t even have the energy to make my own meals. I’ll never forget the day I attempted to go out for my morning jog, trying to convince myself that it was all “in my head,” and despite having plenty of cardiovascular and muscular strength, I could barely take a single step. I felt like the world had gotten bigger somehow, like I drank the shrinking potion from Alice in Wonderland.

At the same time, my appetite became so ravenous that I felt like I could gnaw my arm off 24/7. I also started feeling scatterbrained and having difficulty focusing. These were the beginnings of the cognitive symptoms that would prove to be the most debilitating of all.

My mother, god bless her eternally, suggested that the odd change in my mental state might have something to do with all those abnormal hormone levels from the prior year’s tests. I followed up with the endocrinologist again and had a very high 24 hour UFC. He ordered an MRI. My symptoms were getting worse, but my mom fatefully broke her foot and had to return to her home in Texas.

By the time March arrived I was so scatterbrained that I constantly felt drunk. Going to work was petrifying. My appetite was still insatiable.

Finally, the mood swings came. By “mood swings,” I don’t mean irritability. I mean that I became an ultra-ultra-rapidly cycling manic depressive. I would wake up at 3:30 in the morning giddy with energy, writing long, rambling e-mails to everyone I know, trying to go for a jog only to have to stop and dance to the music on my MP3 player in the middle of the Bronx. Then I would feel horrendously depressed mere hours later.

I could spend a lifetime attempting to describe the pain of bipolar depression. It is beyond despair. Take the icky feeling you might get with a cold or a flu and multiply it by a thousand. I was so distressed I felt like my brain was on fire. Like I had been poisoned. It would get so bad that I couldn’t speak. I vomited just from the discomfort. Once I went to the ER, desperate for relief. All my vitals were normal. They just let me ride it out, like I was having a bad drug trip. Later, I described these feelings to my roommate, who said she felt that exact feeling while going through narcotics withdrawal.

One of the most interesting aspects of this experience was that every time I got a migraine headache (which I’ve had periodically for most of my life), my depression would lift or I would get more manic. Note that if I had a choice, I would take a migraine every day of my life over the pain of severe depression.

I went to a psychiatrist, and much to my dismay, he told me I was not crazy. He gave me totally ineffective herbal mood-lifters and told me to go back to the endocrinologist. I started taking huge doses of caffeine in an attempt to take the edge off the low moods. It worked temporarily, but the feeling always returned. I ended up back in the ER after experiencing a lovely phenomenon called “sleep paralysis” (Google it) for two hours straight, which understandably gave me a panic attack. I was put on benzodiazepines, which prevented another panic attack but did nothing to make me more comfortable.

Some interminable time later, my endocrinologist called to inform me that I had a 5mm adenoma on my pituitary gland. I wept with relief and my family made immediate arrangements to take me to MD Anderson for surgery.

Maybe if I had read some of the bios on this site I would have anticipated what was to come. Cushing’s patients never have it that easy. In my scatter-brained, benzo-doped, manic-depressive stupor, I showed up at MD Anderson for…more tests. There, both a 24 hour UFC and dex/CRH test came back normal. A few things about the dex/CRH test were not administered as planned, but the in-house testing results combined with my still-normal bodyweight convinced MD Anderson that I did not have Cushing’s, and was simply a total nut case. They sent me on my way.

Finally I returned to my mom’s endocrinologist, the same woman who had had the foresight to give me my first 24 hour UFC. She ordered another round of tests and sent me to a wonderful psychiatrist who promised to do her best to make me feel better while we waited for a diagnosis. A litany of psychiatric medicines (mood stabilizers, sleeping pills, stimulants, antidepressants) would each work for a few days or a week and then wear off. Eventually the mood swings turned into a persistent, mind-numbing depression.

In retrospect, the benefit of having my mood fluctuate so violently earlier in my illness was that the depression didn’t have time to take hold of my thoughts. It was painful, yes, but I was able to fight the feelings of hopelessness and self-hatred with logic and positive self-talk. Later on I was not only completely miserable, but also came to believe that my misery would never end. I’m amazed I lived to tell the tale.

By midsummer I had a few more elevated 24 hour UFCs under my belt and had gained enough weight to look more “cushingoid.” This time I went to Methodist Hospital in Houston. The surgeon there agreed with my endocrinologists that I had pituitary Cushing’s, but disagreed that my MRI showed a defined adenoma. Again, Cushing’s patients never have it that easy. Luckily this surgeon was caring and proactive enough to order an IPSS and schedule me for surgery, though he warned me that it may not cure my depression. I asked for the surgeon to remove my entire pituitary gland in the event that he didn’t find a tumor.

August 23rd, 2011 was the day of my rebirth. I can attribute my euphoria in the week after the surgery to the strong pain meds I was on for the CSF drain, but by the time they were out of my system I was astounded to find that my mood and thinking were absolutely 100% normal. I can once again think, laugh, smile, sleep, taste, and enjoy the company of others. Within three weeks I had enough mental energy to resume working from home.

No tumor was found, so my entire gland was removed. No amount of hormone replacement in my future can dampen the joy of having my self back, permanently, with no fear of relapse. I’m not even fully recovered from surgery and I’m feeling better than I have in quite a long time. Even the constipation and acne are gone!

It’s disorienting and traumatic to have essentially lived with a temporary form of bipolar disorder, only to be cured of it as suddenly as it began. I fancied myself knowledgeable about mental illness before this, but I know now that you just do not fully understand it until you feel it first-hand. Luckily it all feels like a distant memory now. There must be a natural sort of psychological distancing that occurs with a traumatic experience like that.

As I posted on the forums shortly after my surgery, for those of you who may have given up hope, keep fighting! Take it from me that there are better times ahead.

Note: Email Andrea or add comments to this bio below.

Andrea was interviewed on the BlogTalkRadio Cushing’s Program on Wednesday, October 19, 2011

Listen live at http://www.blogtalkradio.com/cushingshelp/2011/10/19/andrea-l-pituitary-success-story

This interview is archived at http://www.blogtalkradio.com/CushingsHelp and iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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Amanda P, Pituitary Bio

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Amanda Paxton, aged 41. From Auckland, New Zealand. Grew up in California. Currently living in Doha, Qatar, Middle East.  This is like speed dating :).

Skinny and healthy until my 20s, started gaining weight, it took 5 endocrinologists and 12 years of increasingly agressive symptons to find the tumour.

They kept telling me I had PCOS and needed to diet and exercise more – how often have we all heard that??  It was so frustrating.  Countless trips to naturopaths and kineisologists and chinese herbal doctors and nutritionalists and dieticians and weight management specialists.  Countless diets – South Beach, Atkins, Dukan, Weight Watchers.

Found the tumour just before my 35th birthday.  Successfully removed it (biggest one the neurosurgeon had seen) transphennoidally.  Had less than a year on synthetic steroids – hydrocortisone. Periods returned – have had 2 beautiful daughters post surgery and one beautiful daughter pre surgery.

We now think there is another tumour as symptons have returned.  Unexplained weight gain, no loss with diet and exercise, hair falling out.  Should have test results in a couple of weeks.

I have an amazing life with a great family and I am really healthy, except for weighing 100 kilos.  My biggest concern is not being here for my family or developing diabetes or heart disease esp with the weight.

I will keep you posted.  Nice to meet you.  Would love to hear from anyone who has had 2+ surgeries with any advice.

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?

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.

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