Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.
About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.
When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.
My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.
Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
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.
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.
Another Golden Oldie, this bio was originally posted 01/22/2008
Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.
I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.
Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.
In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.
After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.
I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.
Oregon Health Sciences University. (Photo credit: Wikipedia)
That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.
In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.
I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.
Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.
Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.
I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.
I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!
As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.
In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”
Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.
Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).
So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!
After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*
I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be… You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂
Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy
Hi, My name is Diana. I have been sick for over two years now.
I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.
I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.
I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.
Here are my symptoms:
Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)
Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test
Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery
Extreme fatigue/ as tired when I get up as when I go to bed.
Muscle weakness with any exertion, especially going up stairs and most days just walking across the room
Pallor
low grade fever on and off
blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently
Rising cholesterol over the last couple of years with no change in diet
Right flank pain
Low back pain
Burning pain in upper buttocks and upper back thighs
Stomach and groin pain
Extreme hip pain
Shaky and fine tremor in hands and sometimes my head also shakes
I started having issues in my 30’s. I noticed my skin getting splotchy and my periods became horribly painful and irregular. I had migraines and started gaining weight. I went to my doctor who said I was just getting older (again 30ish). The weight kept creeping on, the periods got worse. Again I asked my doctor , again it’s part of aging. This went on for years. I finally changed doctors and ended up with a hysterectomy, the doctor assured me this would fix things. It didn’t.
A year after the hysterectomy I get my first ambulance ride from my doctors office to the ER. They thought it was my appendix . The ER found nothing so they sent me home. I have sever nausea I , body shaking chills and sever side pains. They sent me to a gastroenterologist who ran tons of test and found nothing. BUT as they were reviewing my latest test results by phone the mentioned that my adrenal cyst hadn’t grown any. I said what adrenal cyst? They said throne that was in the ER report. This had never been disclosed to me. They referred me to a urologist? I skipped the urologist and looked for a endocrinologist. My symptoms had multiplied in this time. I now had a fuzzy face, fuzzy vision, more weight and stomach tenderness to the point it hurt to wear some clothes.
I saw my endocrinologist and he ran a ton of test and came back with Cushings. I just finished my second MRI, this time they are looking for a pituitary tumor. I am waiting for results to see if I have the pituitary issue as well as the adrenal gland cyst. Apparently my adrenal cyst was large enough to cause cancer concerns , but luckily doesn’t act like cancer. Happy that! I am now in my 40’s and it has taken eight years to get a diagnosis or someone to take me seriously! So don’t take NO for an answer!
After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.
One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).
On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.
On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.
I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.
6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.
I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.
Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.
From 2002:
“Touched By a Pituitary Tragedy”
Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.
Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”
Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”
But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”
Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”
I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.
About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!
Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.
I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.
First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.
I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.
All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.
That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.
In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.
My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.
I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.
I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.
Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.
The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!
Recent Comments