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Grace (Grace), Undiagnosed Bio

May 12, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Hi Everyone

I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.

I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.

At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The  stretch marks followed the weight gain.  I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly  irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence.  My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.

The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.

I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant  more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.

My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?

The MRI came out normal, only showed that I  suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.

From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.

I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from  Uni this year but due to my health problems I’m  3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point  of view but I feel if I had a child I would do all I could to help them get better.

The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.

As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.

Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.

Thanks for listening

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Renee (Renee), Pituitary Bio

May 8, 2026

MaryO Pituitary, Pituitary Surgery, pseudotumor cerebri, Rathke's Cleft Cyst, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

pituitary-location

I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.

I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.

She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.

Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:

» Extreme weight gain

» Moodiness, irritability, or depression

» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!

» Hypertension–possibly, but undetected because  of I am on meds for other heart anomalies.

» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine

» Hirsutism–embarassing, but true

» Hypercholesterolemia–to the point that I am on a medication for it

» stretch marks

» “moon face”–it isn’t too bad, but it is noticable.

» the storage of fat on my shoulders/back

Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!

Lavane V (lvowell), Pituitary Bio

May 8, 2026

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

The pituitary gland

The pituitary gland

I was diagnosed with Cushing’s Disease in September 2012.  I started my search for a diagnosis back in March.

So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise.  I had weight to lose from a previous pregnancy.  I began working with a nutrionist and personal trainer.  I spent a lot of time working out and logging everything that went into my mouth.  I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong.  i was gaining weight instead of losing.  I was also feeling very run down.  I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff.  I decided to go have my hormones checked.

At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water.  He said we need to run more tests.  He did a salivary test and some bloodwork to check my corisol levels.  On my follow up with him he said that i had very high cortisol levels and wanted to run more test.  He then went on vacation for a few weeks.  I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.

I started researching on the interenet about high cortisol levels.  Everything that I was reading sounded like me.  Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc.  I found another endocrinologist and made an appointment.  I told him all my symptoms and what I felt was wrong with me.  He asked me what i wanted him to do.  I suggested some of the tests that  I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.

After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome.  He indicated that this was very rare and that he had not seen but one case before.  He ordered an MRI.  The radiologist that read my MRI said that he did not see a tumor.  However, he did say that he saw “sinus disease”.  Now I have never hear of that so i questioned it.  I was told that I would need to go to a ENT doctor for learn more about that.

The endo doc wanted to proceed with the IPSS test.  I keep studying on the interenet about the disease and all the testing.  I even watched a few pituitary surgeries.  I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours.   I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test.  I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take.  I was totally not comfortable with just losing part of my master gland.  I kept my scheduled test but started to research experts in cushing’s.  Then I researched which were covered by my insurance.

In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time.  I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation.  Now then, how do you not know this before you prep someone for the procedure?!?!  I told the doctor that there were other hospital that were treating cushing patients and were performing this test.  I had been reading about them on the boards.  He told me that there was not anyone in the US that had the meds.  That was when I really knew that I was going to have to leave my state to get treatment.

I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX.  I also went online and did a self referral.  I just kept following up with them.  They have a pituitary tumor board that reviews cases.  My case was approved and I had my first appointment in Sept 2011.  I spent on day running tests, having an MRI and meeting with the a new endo.

Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary.  In November 2011, I underwent transphenoidal pit surgery.  An 8mm tumor was removed.  There was some concern because the tumor was right up against my cavernous sinus cavity.  This is where your carotid artery is and the surgeon did not want to get close to this artery.

Unfortunalely, I did not experince a “crash” after surgery.  My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.

English: Cavernous sinus

English: Cavernous sinus (Photo credit: Wikipedia)

for me.  He is going to confer with my endocrinologist and then I will go from there.

Marki (Marki), Undiagnosed Bio

May 6, 2026

MaryO Pituitary , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi!

My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.

My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.

About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.

When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:

24 hour-

range- 0-50

me- 49.7

Midnight saliva-

range- .5-1

me- 9.16

So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!

Update:

My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂

Mary W (chloeblack101), Pituitary Bio

May 6, 2026

MaryO Adrenal Insufficiency, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , , , , , , , , , , , Leave a comment

I was dianosed with Cushing’s Disease in 1998. At the time I looked like a textbook case. Moon face, buffalo hump, wasted extremities, straiea, hypertension, pancreatitis. Had resectioning of pituitary in 1998 but had reoccurance in 2002 at which time I had the cyber knife gamma radiation treatment.

Now no cushing’s but I have adrenal insufficiency from the treatment and have to take replacement hydrocortisone and I also take Megace. I have been sick lately and don’t have a very good Endo so I have many questions and I am seeking feedback from others who have post-Cushing’s complications. I want to continue to be active and productive and hope to learn from and also share with others.

Emma (emma22), Undiagnosed Bio

May 5, 2026

MaryO Hypothyroidism, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi there,

I’m not really sure where to start! I’m 22, and work full time (10-12 hour shifts) as a porter in the operating department of a city centre hospital- so i’m very very active, constantly walking/lifting/carrying on a daily basis.

I was diagnosed with chronic fatigue when i was 13 after a bout of severe flu/repeated shingles infections, and never really recovered, but i was gradually well enough to live a more or less normal teenage life. I have never struggled with my weight (a constant 9 stone at 5 foot 5), until a year ago, when i suddenly started suffering from extreme weight gain (7 stone in 10 months), fatigue, acne, mood swings, hair loss where there should be hair/hair growth where there shouldn’t be, stria, irregular periods (and when they arrive they’re incredibly heavy, buffalo hump, heat intolerance and all manner of horrible symptoms.

I’ve been diagnosed after tests and ultrasounds with PCOS and hypothyroidism, and am currently being treated with 75mg thyroxine (to be increased), and am due to start on metformin.

There’s been very little improvement in how i feel, and after a pretty horrible meeting with the endo, in which all she really did was call me fat, tell me to stop the late night trips to mcdonalds (I’M VEGAN! mcdonalds is pretty much the antichrist to us!) and refer me to the dietician. i felt really let down and all i could do was try to hold the tears in until i got back to the car.

she didn’t seem to realise that for a 22 year old woman to be feeling more like a 90 year old, is a pretty horrific experience. but i digress…

i’m due to be tested for cushings in a few days time with the low dose dexamethasone, and i know this is awful to say, but i’d jump for joy knowing what’s going on with my body at last.

although i know i have pcos and an underactive thyroid, i just know that there’s something else going on with me, and unfortunately my consultant just won’t listen to me.

my social life has disapeared, i just feel too goddam ill, not to mention my incredibly unsupportive boss, who seems to want to make my life a living hell because i’ve had to take a lot of time off work- she even screamed at me until i cried when i collapsed at work one day. i’ve actually taken to hiding in the toilets in the afternoon to have a nap, and to regroup, just so i can get through the day. never mind that i’m a 22 year old who has gained 7 stone in under a year- it’s hard to feel great about myself!!!

anyway, hopefully one day i’ll find out what’s wrong with me

this was me last year:

 

and this is me now:

quite a difference huh?! and apologie for the poor fashion sense!
anyway, wish me luck, and and my best wishes for everyone going through diagnoses/treatment for any health issues, we’ll get there in the end 🙂

Dana E (Dana), Undiagnosed Bio

May 4, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

Hello, my name is Dana. I am a 43 year old female. I live near Dallas, TX. I attend college and spend allot of my time taking care of my crazy family, whom I love very much. After reading posts on this site I decided to document my symptoms and experiences.

A couple of days ago I was discussing my endoscopy and colonoscopy results with my mother-in-law. They showed I have GERD, esophagitis, stomach erythema, duodenitis, hiatal hernia, hemorrhoids, nine polyps, and IBS. Wow. After all that she asked me if I was checked for goiter. GOITER? I told her I was just fat. Over the last several years I have gained weight. I did the Atkins diet in 2000 and lost 70 lbs, but gained back 100. Most of my weight is in my abdomen, face and neck. I have relatively small legs, hips and rear. I have had several people think I was pregnant and told how disproportionate my body is. Recently my kids and even my 4 year old grandson have commented on my weight and health. I have noticed that my neck is getting larger, despite being the same weight for a while now.  I have poor eating habits, which I am trying to change. I only eat once or twice a day and I am an active person. I do not exercise except for walking. After my mother-in-laws comment I decided to do some research.

I have almost every symptom of Cushing’s. Central obesity, thinning skin and bruising, especially on my hands. Oral candidiasis, axillary and cervical skin tags, round, fat, red face and neck, oily skin and hair with recent increased acne, headaches, fat pad on back of neck, blurry vision, fatigue, back pain, arm weakness, heat intolerance, pain in joints and swelling in hands and feet, thirst, facial hair, and increased heart rate at weird times. I have been treated for depression/bi-polar for several years now. It took two and a half years of experimenting to find something that would keep me stable. I still have emotional instability, depression, cognitive difficulties, and mood swings. I have many stretch marks but only a few are red. I have very fair skin so my coloring is not the same as others. The only symptoms I do not have are irregular periods. I do have what feels like a soft mass under my chin fat. There are lymph nodes under the area, so this could be the cause.

I pray I am able to find a doctor who will not dismiss my symptoms as some of you have experienced. My first appointment will be next week with my primary care physician and we will go from there. Wish me luck and I will update regularly.

Does anyone know of a good endocrinologist in the Dallas-Ft. Worth area?

Sabrena (Sabrena), Undiagnosed Bio

May 4, 2026

MaryO PCOS, Undiagnosed , , , , , , , , , , 1 Comment

Hii my name is Sabrena and i am only 16 years old,

i realised i had all the symptoms of Cushings disease about a week ago. I started seeing the fact that i am constantly gaining weight, i went to see my doctor and i told her about it i told her i had all the symptoms of CD and i am constantly gaining weight each day i have stretch marks on my abodmen, my arms and back too, my periods dont come for about 3month sometimes more/ or less.

My doctor said she doesnt think i have CD because my face is Oval not Moon,

is this TRUE can someone not have cushing’s disease just because their face is Oval,

someone Help please as i have had these symptoms for a long time, and my doctor is putting aside the fact that it might be CD because i dont have a moon face she thinks it might be PCOS instead.

The problem is that PCOS doesnt cause weight gain and i am a person with a very small appetite and i am constantly gaining weight plus i already have the buffalo hump too.

My doctor still send me for a blood test but i am not sure whether that is enough to prove that i have Cushing’s disease.

HELP!!

Meriam, Pituitary Bio

April 27, 2026

MaryO Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Hi, my name is Meriam from California, a 51 years old female. I was diagnosed with Cushing’s last August 2013.

I had all the typical symptoms (weight gain, edema, purple marks, bruising, aches all over the body, hair loss, depression, anxiety, uncontrolled diabetes, high blood pressure, high cholesterol, poor concentration, sleep apnea, etc.) I thought all of these problems was partly caused by my weight  gain (230 lbs.).  I underwent a gastric by-pass but still didn’t  lose weight that much.

Eventually. my body seems to shut down and had been and out of the ER. I suffered congestive heart failure, blood clot, blurred/double vision, colon inflamation, body pains and aches, myopathy but the hardest part was, I lost my ability to walk.

It was a rough year for me; been hospitalized for almost a year. Finally, after 6 months of suffering, my Endocrinologist was able to diagnosed me of having Cushings.

My pituitary gland was removed and was given the necessary treatments. As my cortisol level went down, most of my symptoms disappeared except for bouts of body aches and depression.

I am currently doing physical therapy to be able to walk on my own again. I lost weight and on the way to recovery.

My greatest fear is for the Cushing’s to come back and I do not want to undergo the same ordeal again.

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In Memory: Liz Raftery, March 2012

March 1, 2026

MaryO Adrenal, Cyclic, Golden Oldies, In Memory, Pituitary , , , , , , , , , , , , , , , , , , , , 1 Comment

We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards.  She had a photo gallery there.

Liz wrote in her bio:

Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)

I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later.

So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.

In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!

Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages!

Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.

As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.

Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).

Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too.

All the best.
Liz

Update April 21, 2005.

Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring!

It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!!

Wish me luck …

Posts in Liz’s memory:

Terry: Oh no, that is terribly sad.

Jenny: Oh no, what happened, did he say? 🙁

Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 🙁

Regina: How tragic! :/

Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies

Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life..  Hugs and prayers to Liz’s family!

MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say.  I hate when Cushies die 🙁

Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx

Liz: Me too Mary me too, just brings everything to a scary place for all of us !!

Trisha: I am so sorry to hear this. I remember Liz from the boards.

Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx

Lisa: God bless her family..so sad 🙁

Kim: So sad

Jennyfer: Oh no no more cushies down please send my love

Judy: So sad. Does anyone know how old she was, I had never figured that out.

Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences.

Linda: No! Not Liz! No no no

MaryO: She was 45. On the C-H boards, her name was Lizr007

Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply.

Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone….

Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young.

Adrienne: so sorry, so sad!!!

Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone.

Stephanie: How tragic!! Thoughts and Prayers for her family and friends.

Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences.

Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease.

Sandra:  RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx

Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family..

Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful.

Janelle: So sad.. Please let us know what the complications were.. 🙁

Alicia: So sad. We are losing way too many people to this disease. Praying for her family.

Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly.

Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family.

Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her.

And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group.

Hugging all of you a little tighter today.

— Melissa, TX

Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R.

Chanelle: Omg!! Ugh my head hurts :((

Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x

Christina: 🙁 so sad to hear this, RIP to her.

Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend.

Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey.

Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you.

missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s.

Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family.

Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking.

Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends.

Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was.

Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know.

Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair.

Just read it was a heart attack (Thanks Sandra).  – heartbreaking.

Gumdrop: So sad to hear this. I pray her family is comforted.

Sandra: If I find any more info out I will post

Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time.

Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her.

Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her…

Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers.

Mary: oh no! devastating news. so sorry and saddened to hear. 🙁

Amy: I am so broken hearted. 🙁 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind”

Dacia: Please send my love, my thoughts and prayers to all…

AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!!

Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx

The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart.

Rest in peace lovely lady….

Your Cushy friend, always,

Diane

x

Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is.

Monica:  Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle.

Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift.

love,

melly

3v3:  I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 🙁

Judy:  Mine too. It’s just so sad. I pray for the family.

Beth: Such a tragic loss.. I wish her family and friends strength and peace. 🙁

Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X

Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers,

Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years.

Stanley : I’m sorry to hear that.

Melissa: This makes me cry all over again.

Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records.

Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young.

Rissa: This is so sad. Praying for Liz and her family tonight.

Ikho: This news makes me so sad. My condolences to her family.

Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them.

Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 🙁

Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. :'(

Jo: cant believe it.  very sad, god bless our dear friend Liz.taken far too soon.

Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 🙁

Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away.  Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed.

Mary R:  We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family.

PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf.

Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family.

Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx

Amy: I was so very fond of Liz and my heart is still broken in two. 🙁

Diane:  I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed.

Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it.

Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad.

betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family.

Liz, may you rest in peace, and dance among the angels.

Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz.

Diane:  That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx

Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x

Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her.

Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones.

Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012.  Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome.

Tanya: 🙁 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’

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