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Debra LF (DebraLF), Undiagnosed Bio

May 31, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , 2 Comments

Hello, I  am in search of opinions please.

I present with most of the outward physical characteristics: age 57 “weight gain (obese which began about 1991 with a sudden 60 lb increase in 2 months and no explanation, physician had wanted me to go to a Mayo clinic for eval but at the time I could not spare time nor expense…and more recently continuring weight gain, easy bruising, (menses stopped at age 50, but don’t recollect too many probs except migraines), ravenous appetite, occasional trouble sleeping, depression or mood swings, anxiety, fatigue and altered mentation which is trouble concentrating or decreased memory and now diagnosed ADHD.

1-3. Physical abnormalities include new onset obesity, mine is more recent weight gain, primarily in the abdominal,  buffalo hump which presented suddenly a few summers ago but has been brushed off by doctors…, rounding and reddening of the face which began about ten years ago, thin skin, decreased muscle strength, high blood pressure, and excess hair growth on face, have to shave every day, some times twice, have 5 o’clock shadow, but I have already been to a local endocrinologist in Billings, Montana, there are only a couple in this sparsely populated area, and none of the lab tests showed anything particularly abnormal…open to suggestions, thanks so much…

Video: People Don’t Understand Cushing’s Disease

May 22, 2026

MaryO Male, News Items, Video , , , , Leave a comment

Cushing’s disease changed my body, my mind, and honestly my whole life.

The swelling, cortisol, mood swings, pain, exhaustion… people don’t always understand how brutal it can be.

This morning one of our viewers shared that they were just diagnosed too, and it hit me hard.

So to anybody out there fighting something silently — cancer, Cushing’s, chronic illness, fear, depression, anything…

You are NOT alone.

We’re praying for you over here.

Kristi (kingskid), Undiagnosed Bio

May 14, 2026

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

Hi my name is Kristi and I’m seeking any help or advice on Cushings.

I had always been active growing up into sports, running, weight lifting and horseback riding.

27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy.  Less then a year later I was carrying my second daughter.  I had no appetite and could barely eat but was gaining 10 pds every other day.  My blood pressure soared and I was diagnosed with pre-eclampsia.  I have been sick ever since I gave birth.

In the past 20yrs I have put on over 150 lbs and I can’t get it off.  I was told I had a fatty liver and my cholesterol and triglicerites are off the chart.  I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/   I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping.  Get cyst on my breast, head, ears and pubic area.  Have little hard bumps on pubic area that never go away.  No sex drive left for husband and even when we are active it’s very painful..  Major swelling in face, neck, legs and feet, backaches, headaches.  When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair.  I sweat even in winter.  I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast,  behind neck and arm pits.

Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit.  My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery.  It has been 5 months and I still can’t heal.  Have been packing the wound every day and seeing the surgeon every 2 wks.  Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.

Today I recieved a call that the urine test I took for cushings came back with normal levels.  Needless to say I sat down and sobbed.  I am 46 yrs old and I have been sick for half my life.  I have seen so may doctors, been through so many surgeries and painful testings.  I have been told over and over that there is something wrong but the Doctors can’t find it.  I thought cushings was the answer and that I could finally get treatment and get better.  I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers?  Where will I get the strength?

Gina M, Ectopic Bio

May 9, 2026

MaryO Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , 3 Comments

I was diagnosed with Cushing Syndrome in June 1999.  At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery.  After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

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 🙂

Peggy (concerned for spouse), Pituitary and Adrenal Bio

May 5, 2026

MaryO Adrenal, Diabetes, Pituitary , , , , , , , , , , , 1 Comment

I’m married to my best friend who’s health has steadily declined for around 15 years.  High Blood Pressure, Diabetes, weigt gain, mood change are part of the decline.

He had a pituitary tumor removed in May 2012 after a diagnosis of Cushings.  We know that he still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.

My husband, my best friend, thinks they have ruined him forever.  He feels worse than ever before.  The doctors say it may take up to a year, that this has been coming on for a long time.  His blood pressure is now controlled and he has gone from 12 blood pressure pills a day down to 2 1/2 pills per day.  Other that that, he has a poor quality of life with no energy, no happiness.

I wish I knew more and could help and support him better.  I am the fixer in our life, our family, our business that we have worked in together for 10 years and I’m so sad for him.

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?

Shannon (Shannon), Undiagnosed Bio

May 4, 2026

MaryO Undiagnosed , , , , , , , , , , , Leave a comment

Hi, my name is Shannon.  I’ve had years of frustration with symptoms that go unexplaiined.

I read about Cushing’s today while trying to seek out explainations for the 9 years of issues I’ve had.  This includes multiple trips in an ambulance to the ER with elevated blood pressure, heart rate, and SEVER PANIC ATTACKS.  Mine do not last 10 minutes, they can go on for hours if Im not given Ativan.

Also, in the past couple years I wake up out of dead sleep with a sudden panic and jolt.  My heart feels its going a million miles a minute.  Sometimes it goes away after a few minutes, but a couple times its lasted longer.  Also, people accuse me of pregnancy even though I am not pregnant and I carry weight around my midsection.

I have a round face, and I do have a hump on the back of my neck.  I experience mood swings, and depression.  The repeated attacks that I have with panic, is wearing on me and my emotional aspect of knowing I look pregnant despite diet and exercise is very exhausing.

If anyone has any thoughts or answers, please help.  Oh…I have these episodes of panic daily…Ive had thousands of them.

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.’

J Stone (J Stone), Pituitary Bio

January 11, 2026

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

 

Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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