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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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Stephanie (Stephanie), Pituitary Bio

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The pituitary gland

3 years ago, 2014, I was 43 and very active, running, doing HIIT workouts, volunteering, making and doing stuff, traveling like a maniac.

Then I started getting cysts that were benign but required surgery. One was endometriosis and ovarian, the second, lumbar. Which resulted in my having chronic, severe numbness and nerve pain in my left leg. I attributed the severe weight gain to not exercising.

Then I went to the emergency room for a abscessed cyst in my neck. An ENT did a follow up MRI and found a cyst on the pituitary gland late 2015, but I had to move to Fairbanks. early 2016.

Finally, I have a team of an Endocrinologist specializing in Cushing’s and a Neurosurgeon at Swedish in Seattle. I have to travel but it’s worth it because I’m being treated for something.

I had the first transphenoidal surgery in Aug 2016 that removed the bulk of the macroadema, but there was still elevated cortisol and they found some cyst left. Just had the second surgery January 2017 and will be going to post-op appointment soon.

I still have symptoms of Cushing’s Disease, don’t know yet if I actually have elevated cortisol, but I left the hospital with no change in cortisol from admittance to discharge. I looked at the scale today and despite watching my eating have gained weight- I have gained 60 lbs in 3 years! I still have the severe, chronic nerve pain so am on meds, go to p/t and a pain management specialist.

Have had hypothyroidism and take steroids. I go through cycles of good days but mostly bad with sleeping and bathroom problems and unhappy thinking.

I rarely leave the house anymore. I look and feel ugly and disabled – I just got a handicapped placard. I want to volunteer, travel, go outside but then when I try, I get sick and can’t. So I’m trying to find ways to be active at home or on my own time schedule. I do fiber arts at home but for my own sanity- it’s not good enough to sell but I have enough stuff to sell! I’m also an introvert with a social phobia, I don’t have any extended family, and I’m new to this area so have not made any friends! So this is the great challenge of my life, where all my roads have led me to, to which my strength and knowledge must apply and conquer.

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Kathleen (ForegoneLegacy), Pituitary Bio

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golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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Mae, Undiagnosed Bio

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golden-oldie

 

Originally posted Sunday, October 26, 2008

I am now 34 years old and have recently moved to a new state. I really don’t know when I started to show the signs. I have had migraines since I was in junior high. I used to have dark stretch marks and major mood swings in high school. My periods were so very painful and heavy I would bleed through a sanitary napkin every hour and a half. Once I graduated I went to the health department and asked to be placed on BC pills. I was eighteen, planning on having sex, and wanting to be safe about it. Within the next three months I put on about 60 pounds.

When I first moved to Virginia I was weighing about 135 pounds on a 5’6″ frame ever so happy in a size 8. By the following January I was almost 200 pounds and in a size 20. I went from wearing form fitting clothes to wearing sweat pants and t-shirts as large as I could find them. When I asked the health department about this, I was told that you have to expect to gain weight when you first start on the birth control pills. I was an active 18 year old, I didn’t over eat, and I was a personal nanny to a very active child. I took her on walks daily for at least an hour.

Things happen, as they always do. My fiance and I broke up, I moved to another part of the state, and pretty much ate only enough to make sure I was getting some nutrients into me. Depression set in, and my whole being seemed to change. I went from being an outgoing, happy center of attention to an brooding and depressed loner. I didn’t even want to be around my family (whom I lived with at the time). I went to the doctor again. I wasn’t planning on doing anything, so I stopped taking the birth control. When I asked the doctor about the weight loss, I was told it would fade within time as long as I worked at it.

Two years go by and I worked at it, and 20 pounds went on their way. The depression was starting to ease, I felt some of my old self returning. I decided to move it along and branch back out on my own again. I vowed to take back two years of my life. I was out going again, I WAS ME! I was eating healthy, only getting fast food at the most, once a week. Eating more salads than anything, and county line danceing three to four hours (non-stop) about four times a week (one day a week was for a demonstration team). I wasn’t loosing any weight. As a matter of fact, I had started to slowly gain it again. I also had my first bout with kidney stones. I met my soon to be husband almost two years to the day of vowing to get back my lost years.

Since My husband I have married (9.5 years now), my weight has been a large roller coaster ride. I have never been back down to the 180 I was when we first met. I haven’t been below 200 since then. I have maxed out at 260 so far. Each time I feel almost like my old self, I pick up the hard dieting and working out 4-5 days a week. I love weight training. Not the body building kind, but the lean muscle building kind. I will start out loosing weight and I will keep it up. I will loose about 10 pounds before the gain starts. Then I will tell myself that the gain is muscle and it is to be expected. 20 pounds later, when I am 10 pounds more than when I started, the depression starts to set in. I keep working at it with tears in my eyes and I no longer enjoy it. Finally, when the next 5 pounds hit, I just give up. All of this takes place over about a 4 month period. The only time there was a repreve was when I was pregnant with my daughter. I went back to feeling like myself again when I was pregnant. I also lost 25 pounds while I was pregnant. I was pregnant for 6 months (she was 12 weeks early due to pre-eclampsia).

Kidney stones started happening more frequently. UTI’s (which I had never had before being pregnant) started happening about every 6 months. I had been diagnosed with endometreosis, and the ovarian cycst I had been diagnosed with at 17 had come back. I was diagnosed with depression, and was always being told by the doctor that I needed to loose weight. No matter now many times I told him that I tried only to gain it, it was like he never heard me.

My break through came about a year and a half ago. I was reading one of my mother’s Reader’s Digest’s she had left at my house. I was shocked. It was almost like reading my own story. That night I hopped on line and came to this website. There was a diagram hand drawn of what a body could look like with Cushings. While I was reading the symptoms, my husband walked in. He asked when I had posed for the drawing. I broke down in tears. My wonderful husband came over and held me while I cried it out. Then listened as I explained it to him. I still didn’t have the courage to ask my doctor about it.

The following month, the recurring UTI’s started. I was getting one every two -three weeks. Then my mind started to go. Like one of the bio’s I have read here, it felt like there was an alien in my head. I could see myself acting in ways that weren’t me. I couldn’t even interact with my daughter without having flashes of anger. The depression medication pretty much stopped working, and there were times I couldn’t even stand myself. I finally found the courage.

I made an appointment to see my PCP. Since there was nothing ‘wrong’, the earliest they could see me was a month away, I agreed. I nearly called back to cancel the appointment at least three times. I kept it. He wasn’t very supportive. I was overweight and fat people like us have to find a way to loose it was pretty much what he said. But he would order and 24 hour UFC test. and we would go from there. Guess what? It was high. He refered me to an Endo. Wonderful Endo. I hated leaving him.

I went to see Dr. Barnes and he listened to me. I took pictures of me for every year since I was 18(which took a while to gather since I haven’t really had any pictures taken of me for the last 8 years). He asked me questions. He listened to me. He made me feel as if what I had to say was important and needed to be heard. Then we did the exam. He talked, measured, asked, and explained the whole time. He looked at the hair loss, the hair that was growing where it shouldn’t, even the stretch marks that have long since faded to white (but once in a while flair red). He ordered a dexa test. Then he put me on blood pressure medication (my blood pressure had been creeping up for about a year), started me on Fortamet to help ease some of the symptoms, and ordered me back in two weeks. The test came back only slightly elevated. Enough to be over the norm, but not eoungh to confirm a diagnosis. He ordered a midnight cortisol test (it was now about almost 2 months since I first saw him). The results were on the high side of normal. He wanted to keep an eye on me. He couldn’t diagnose me, but he felt that my concern was warrented. He wanted to keep on eye on me. I was to see him every three months. If my symptoms were to come back, then I was to call him immidiately.

Four months ago I had to say good-bye to Dr. Barnes. I moved with my husband when he retired from the military. I am now back to the drawing board. I have a wonderful PCP now (which I didn’t before). She listened to me and refered me to an Endo. I left the new Endo’s office very exasperated. She walked into the appointment and didn’t even shake my hand. Strike one. Next came the physical exam. She felt my thyriod, one point in her favor. That was all she checked, strike two. Then, right there told me that I was diabetic (go figure that the last blood test I got said my sugar levels were excellent) and I had PCOS. The woman had only known me for ten minutes, if that, and was diagnosing me without seeing blookwork results or anything else. Third and final strike. I am still so put off by this experience, I haven’t gotten the nerve to go back to my PCP and ask for another referal. The Endo did do a dexa test, and said that according to that test, there was no way that I could have Cushing’s and that was the end of it.

Since then, I have had my gall bladder removed after having a gall stone pains for the last 4 years that no one could find. I also have two new kidney stones. One of them about a half an inch in diameter (again). The fatigue has returned. Insomnia is hitting again. Depression is setting in. My temper is starting to flare for the slightest wrong. My concentration is failing. When I changed the chanel and found the Mystery Diagnosis on about Cushing’s, I felt that was God’s way of pushing me. So, when the week starts, I will be calling my PCP and see if there is another Endo she can refer me to. As the song goes, ‘Here I go again on my own”.

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In Memory: Kate Myers ~ 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.

 

In Memory: Kate Myers

7 Comments

kate-fb kate

 

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.

 

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