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In Memory: Kate Myers ~ June 23, 2014

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kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

Kimberly N (Bedrock Mama), Undiagnosed Bio

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For over theee years I’ve had 10-30 anxiety type attack’s a day. I break into a sweat, turn bright red and my heart races. These attacks happen immediately after I am anxious about something so I was always skeptical when people called them hot flashes.

I have a cyst on my pineal gland.

I’ve put on 30 pounds although I eat extremely healthy with limited sugar, flour or dairy. My cholesterol is up to 245. My libido is completely dead which is not the norm at all. I have a shawl of fat on my back with a fat bump on the back of my neck. My stomach is so big I’m embarrassed to go out. My legs have started getting fat on them which never happens.

I’m hyper sensitive to smoke and chemicals and mold.  I get incapacitating headaches frequently. I take feoricet, ice and have to go to sleep. I have no desire to exercise even though I grew up playing the tennis circuit. I have huge difficulty concentrating. I cannot remember even the simplest numbers. I feel like my vision is getting worse even though I wear glasses all the time.

I’m not the happy, gregarious person I once was and I rarely go out anymore. I want my life back.

I live in N.J.  if anyone knows of a Dr who might be able to help me I would be most appreciative. I wish you all good health. ❤

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sjw (Jane W), Adrenal Bio

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My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.

My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.

in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.

I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.

We shall see. I can only hope.

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Angie (Angie), Pituitary Bio

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My name is Angie.

I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.

My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.

On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.

I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.

Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.

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Renee (rmaxwell), Undiagnosed Bio

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Originally posted December 5, 2008

My symptoms began when I was about 21 years old. At the time I worked as a Martial Art instructor so I was very physical and in good shape, weighing about 120lbs. Suddenly, and I do mean SUDDENLY, I gained about 60lbs or so. It was as if my clothes fit one night and then didn’t fit in the morning. The weight is mostly in the middle area. My face shape changed and I developed a second chin almost.

I also started getting some whiskers on my chin and neck. Not a lot, just a few, but it was strange.

I was under great stress at the time because I had lost both of my parents in the same year, to two different medical things. So as you can imagine, it was very difficult for me. I developed extreme fatigue, and anxiety attacks. Friends were sure all my physical and mental symptoms must be from depression over losing my folks. One friend advised I see a psychiatrist, so considering everything it sounded reasonable, and I did.

I was placed on Paxil, which caused me to gain even more weight. Since then I’ve tried so many antidepressants I can’t even begin to name them. I went through many SSRI’s, then SNRI’s, then tricyclic, and most recently as a last resort an MAOI.
But in spite of this, over the years my depression has only gotten worse. I’ve had two suicide attempts and been hospitialized a few times. My depression seems to follow a pattern or cycle, two weeks of barely being able to function, followed by a week of doing a little better, then a day or two of feeling good, then back to two weeks of misery, etc. I am not bipolar or anything like that.

I continued to gain weight, developed stretch marks on my belly and arms, got a lot of dark hair all over my belly, and the few whiskers that appeared on my chin and neck have become like a beard. I developed insulin-resistance, high cholesterol, and high blood pressure. I can seldom sleep at night. I experience such deep depression and fatigue that I haven’t been able to keep a job or finish collage, I barely function.

For many years I just thought I had really bad depression and continued trying whatever psych meds I was prescribed. I thought all my physical symptoms were my fault for being so depressed and not getting enough excercise, etc. And most of the time, I was on so much medication I didn’t really care, I was so out of it.

Finally I found a great psychiatrist who truly cares about me and wants to see me happy. After having little or no success treating my depression, fatigue, and panic attacks, she did some research and told me not long ago that she felt I must have something biological going on with me that wasn’t any type of clinical depression. She said she had tried hitting all the different receptors in my brain (seretonin, norephinepherine, dopamine, etc..) and I should have responded to something. She suggested I might have Cushing’s Syndrome. I went online to find out about Cushing’s and I was like “Wow I really match a LOT of these things!”

Now I am on quest for getting tested. It’s difficult as I do not have any health insurance. But I am making a little progress and hope I start to get some answers soon.

I either have Cushing’s syndrome, some other endocrine problem, or the most treatment-resistant depression ever.

That’s my story, thanks for reading. I’m open to any comments or advice.

-Renee

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Vic (Tori276), Undiagnosed Bio

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Numerous stressful situations in the last 8 years (death of a parent, breakdown of long term relationship), weight gain around truck and abdomen (despite not eating any more), bleeding when exercising (even what I would consider moderate), history of hydrocortisone use on face daily for last 26 years.

Started experiencing weight gain, and muscle pain and weakness with serious fatigue within last 3/4 years. Have recently developed stretch marks on abdomen and worsening lethargy, muscle pain, back pain, hip pain and gastro-intestinal issues etc. I have ALWAYS suffered weakness in my ankles when stressed and they often give way.

Currently under a lot of stress of work, but most of the pain went away with lots of walking while on holiday for a week.

I previously tried Agnus Castus a few months back for what I thought were hormonal issues, but suffered bad side effects and stopped taking them.

Recently took all the hormone and thyroid blood tests and had high blood pressure, high cholesterol and high prolactin. I was advised to have a cortisol test given my symptoms of stretch marks etc. I am currently waiting on the results…

 

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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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