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Marian U (MaidM), Adrenal Bio

May 8, 2026

MaryO Adrenal, Adrenal Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

HI!

I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012.  Before 2 years ago, I had never even heard of Cushings.  Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today.   Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years.  My goal is to help as many people as possible in battling this devastating disease.

I am so happy that I have a new chance at a real life! Feel free to contract me.  Below is a piece I wrote before surgery and my stats.

🙂 Marian

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My Experience with Cushing’s Syndrome

The changes came about gradually.  So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else.  I had become someone unrecognizable: the “Not Marian.”

One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference.  Individually, the changes I experienced were easily explained.  I was tired. I had nighttime hot flashes.  I gained weight. I was moody and forgetful.  My sight was blurry.  I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first.  One day, I forgot how to roll down my car windows.  I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.

I also noticed that I stopped getting compliments.  People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore.  I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get.  I had “hit” the proverbial “wall.”

It is easy to look in a mirror and only see a stylized version of yourself.  But, photos are more precise.  For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line.   They just didn’t look like me anymore.  I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.

My epiphany came in the form of the photos on my work identification cards, taken about three years apart.  Not only do I look like I have aged about ten years — I also look completely different.  My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow.  I look like a bad photo copy of my former self.

Now, I realize that how I look is a small part of who I am as a person.  However, it is also the part of me that everyone sees first.  I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror.  I was astonished at my reflection and cried.

A friend suggested that I just realize that this “Not Marian” is who I am now.  I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow.  I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables.  I exercised four or so times a week.  I went to a diet doctor.  I ate under 1200 calories a day.  I bought new clothes.  I got my nails done.  Despite these efforts, I only saw minor improvements in the way I looked and felt.  I still felt as though I was always wearing a rubber suit over my skin that covered my former self.

In many ways, the diagnosis of Cushing Syndrome was a relief.  Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease.   But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop

My initial inclination was to tell everyone.   I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have.   “It’s not really me!  It’s the Cushing’s.”  I tried it a couple of times with mixed results.

Mostly, people said that they had not noticed a significant change in the way I looked or behaved.  My closer friends were more tolerant, expressed concern, and asked questions.  The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments.  And though it was significant to me, the changes were not readily observable.  So, I will try not to talk about it.

I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such.  I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment.  I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation.  Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.

STATS

July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA.  Low ACTH. Referred to NIH.

Late July 2010:  CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)

Sep 2010: NIH testing.

Nov 2010:  NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.

Dec 2010 – April 2011:  Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.

April 2012:  Follow up testing at NIH.  Cortisol is high.  CT of adrenal tumor is stable.

June 2012.  Second cortisol at NIH is high.  Diagnosis cyclical Cushings.  Will not operate.  Note that I do not look like clinical Cushings, so that was part of the problem.

July 2012: Bone density loss of 25% in three years confirmed through Kaiser.  I happened to luckily have had a previous bone scan so that they could compare.  The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.

Aug 6, 2012: Referred for surgery on Aug 27.

Aug 26, 2012: Enter NIH.  Surgery postponed but I can’t leave because of the testing!

Aug 29, 2012.  Surgery!  The surgery itself was easy.

Sep 2, 2012:  Left NIH

Returned to work half days Sept 4 and full time Sep 10.

Michelle (Michelle), Undiagnosed Bio

April 25, 2026

MaryO Cyclic, Familial Cushing's, Insulin Resistance, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , 6 Comments

Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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Voices from the Past: P. Hyde, Undiagnosed Bio

March 14, 2026

MaryO Cyclic, Male, Other Diagnosis, Prolactinoma, Undiagnosed , , , , , , , , , , , , , , , , , , Leave a comment

48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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Sheara (sbailey), Pituitary Bio

March 8, 2026

MaryO Cyclic, Hashimoto's, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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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.’

Sarah, Cyclical Cushing’s Disease

January 31, 2026

MaryO Cyclic, Undiagnosed , , , , Leave a comment

Hi! I’m Sarah, I’m 15 and I’m from Brazil.

Last year my parents started to suspect that I had Cushing’s and now I’m very close to a final diagnosis. I’ve been feeling incredibly lonely and depressed so I created this account cause I though that if there was any place I would feel understood and not alone it’s here!

I don’t really know how this works but I’m very happy and thankful that this website exists!

Thank you so much for reading my bio! It’s very nice to meet you! I’m sorry you have to be here too but I’m sure we’re all gonna get through this somehow 🙂

Sarah shared more of her story on the message boards at https://cushings.invisionzone.com/topic/55512-introducing-myself/

NOTE:  Sarah included her email address.  For privacy sake, I am not including it here but if you want it, please comment on this post so that I can share it with you.

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Michelle (Michelle), Cyclical Cushing’s Bio

November 10, 2025

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

I am an avid runner run about 15 miles a day then in April I gained 50 lbs my worst nightmare. I gained 50 lbs in two lbs with no change in activity or eating. I was ashamed and embarrassed I didn’t want anyone to see me my friends or family.

Then I broke out in hives all over my body I went to urgent care. They saw a large hump on the back of my neck thought I had cushings. I saw 10 different doctors in la. One passed me off to another.

It was a nightmare then I went to Mayo Clinic where she thought I had cushings from an external source ( September ) she told me to just wait and everything would go back to normal. Even though there was no outside steroid source.

Then I wasn’t getting better in the end of October I went to two doctors in nyc, who didn’t do anything.

Finally I found an artical on cyclical cushings and sent it to my doctor at Mayo Clinic. She agreed with me and told me to come in. My cortisol was finally high now and she’s running other tests I hope I’m fixed soon.

I’m so sad and depressed.

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Jason T, Pituitary Bio

October 27, 2025

MaryO Cyclic, Hypothyroidism, Other Diagnosis, Pituitary , , , Leave a comment

2 traumatic brain injuries (strike for heathcare with first, no ambulance called for 2nd minor one!!!), and one discharged head injury resulting in a concussion before 19 yrs old.

Symptoms of seizures/mood/anger/agitation from 4yrs old.

Symptoms of regular seizures, depression, brain fog and Carpel Tunnel Syndrome from 18 yrs old.

Loads of mental health diagnosis from 19 yrs old (til now 51 yrs old).

Diagnosed with Auto Immune Hypothyroidism at 23 yrs old.

Diagnosed with Post Trauma Brain Syndrome (now Post Concussion syndrome)in 20’s.

Pituitary tumour found in 2020 (posterior lobe), now test after test and 2nd MRI still shows microadenoma.

2022-await 3rd MRI,CRH test,etc as healthcare all about any diagnosis to avoid free healthcare for surgery!

Not able to work.

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David T (Wombat), Adrenal Bio

October 12, 2025

MaryO Adrenal, Adrenal Surgery, Cyclic, Male, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

adrenal-locationHi, I have been diagnosed with probable cyclical adrenal cushings. This all started after a scan on my abdomen for something unrelated revealed bilateral adrenal adenomas. When I googled adrenal adenoma everything fitted into place. I had been depressed , put weight on which were my main symptoms along with anxiety.

I was then referred to an endocrinologist in the UK who ordered some initial tests. I did Two 24hr UFC’s on consecutive days one came back at 36 and the one the day after was 91(normal below 50. Another time the normal range was 165 and the 1st one was 108 and the one the day after was 393.

I then did an overnight dexamethasone test and suppressed below 50 to 48. My endocrinologist then said he didn’t think I had cushings and said come back in six months and said it might be due to stress. I then got a second opinion and then the real testing started.

Roll forward four years and I have done about 30 – 24hr UFC’s numerous ACTH and full blood counts. renin and aldersterone, metoclopramide test, glucagon test, vassopression test, oral glucose stimultation test, day curve cortisol, spent a day in hospital walking round the ward for two hours, then eating a mixed meal and then sitting down for two hours while they tested my cortisol every hour . Did a Low Dose Dexamethasone Test and came out in a rash and my blood pressure dropped so got told I can’t do the test again. Had a bone density scan. I hIad a pituitary scan that revealed a lump inside my tongue and then had to have a whole body scan followed by a tongue biopsy(which turned out to be benign.

I have had about five CT scans on my adrenal glands and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy. The right one is 4cm in diameter.

He said looking at the scan he thinks it looks like macro nodular adrenal hyperplasia but wont know till pathology get to examine the specimen.

It’s been a long, long journey but finally looks like it’s coming to a conclusion now.

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Elizabeth (ToxicNudibranch), PCOS Bio

October 9, 2025

MaryO Cyclic, Other Diagnosis, PCOS, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , Leave a comment

This has been a difficult road to even get to a tentative diagnosis, and I know it’s going to be even more difficult going forward, but it’s better than nothing, eh?

I was a pretty healthy kid. I didn’t eat that well, I wasn’t that active, but I was always strong and fairly lean. When I was 19 that all changed. I’m 27 now, and have just barely found an Endo who was willing to order the obvious tests for my obvious signs. It’s been frustrating. To wit:

*2006 I move to the dorms and put on what I assume are the Freshman 25 within the first semester, even though I’m much more active and eating markedly more healthfully than I was ever raised to. 190lbs
*2007-2008 Job prospects are not great, so I’m dead broke. I end up leaving college for the time being. I’m walking everywhere since I can’t afford a car and public transport is not adequate, and eating less than I should. Weight stabilizes at 195lbs
*2009-2012 I’m not eating much more, just better (lean meats and leafy veg instead of rice and beans for every damn meal!), but my weight starts piling on again (30 in 2 months). I begin experiencing migraines, marked fatigue, and anxiety. Fat settles entirely around middle. Face still relatively normal. Continue moderate gains thru weight watchers, south beach, Atkins, etc. Bring concern to PCP, where I am accused of mis-stating caloric intake and asked to track food. I do, and on my follow-up appointment, my PCP just looks at me like I’m lying and and offers stimulant diet pills. I decline. Hirsuitism increases, as does fatigue. OBGYN diagnoses PCOS, I start Metformin 500mg/2x No reduction in weight. 220lbs
*9/2012 I put on another 15lb in 4-5 weeks. Face is getting fatter, gut sticks out like a basketball. I know something is very wrong, and by this point I’ve heard something about Cushing’s and thought “Hey, that looks exactly like me.” I go to see my first Endo. He notes that I have the hump, torsal weight gain, hirsuitism, weak limbs, easy bruising, anxiety, etc. Mild striae. I even show him pictures of myself from 6 months ago. The change in my appearance is enormous. He waves those away and runs a single midnight cortisol (inconclusive) and an8am dex test (kinda supressed) and says that I’m just fat because I’m clearly stuffing myself with chocolate cake on the sly and totally lying about the 5-8 miles *a day* that I’m running by this point. He recommends a more restrictive diet or gastric bypass. And did he mention that he just happens to be able to provide me a referral to a good colleague of his that runs a whole surgical center that will throw in some laser hair removal with Lapband? Asshole. I feel degraded and helpless. 235lbs
*10/2012-5/2013 Continued migraines, increasing sinus pressure and constant sinus infections, eyes very irritated. PCP blames allergies and stress. Could be migraines, could be cluster headaches. I take at least 1600mg of Ibuprophen daily. I can’t run anymore because my ankles and knees are hurting pretty badly, but I start swimming again. Continued creeping weight gain despite increased exercise. 240lbs
*6/2013-10/2013 Migraines increase. Mis-diagnosed with multiple sinus infections. (5/28/13, 6/19/13, 7/2/13, 9/10/13, 10/18/13) The sinus pressure and pain never seem to get any better, so I go see an ENT. He says we may have to roto-rooter my sinus cavity to correct the constant inflamation. However, once he reviews my CAT Scan, he says I have only the mildest of swelling in my sinuses. Whatever it is, it’s not my sinuses.
*11/2013-4/2014 I develop double vision, my right eye stops tracking with my left, both eyes are bugging out (exoplthalmos). ER doctor and Opthamologist diagnose it as Thyroid Eye Disease/Graves. I have no symptoms of hyperthyroidism/Graves, (TSH, Thyroid antibodies all negative/normal) but my main concern is regaining sight, and the course of treatment is the same, regardless. First course of Prednisone. Rapid weight gain of roughly 20 over 3 months. I track and weigh my food obsessively, averaging 1400kc/day, which should be resulting in steady weight loss. In addition to smimming, I adjust my commute so I walk instead of drive and am doing body-weight yoga. Strength is a fraction of what it used to be. My striae get worse, as does my torsal fat distribution, hirsuitism, fatigue, hair loss, hump, mental fogging, etc.  I’ve stopped wearing pants and moved entirely to dresses. 260lbs
*5/2014 I’ve been weaned off Prednisone entirely. My eyes look normal again. I’m still eating well, but I feel so badly and I’m so tired that I can’t exercise much anymore. My heart starts pounding from relatively mild activity. I’m not experiencing migraines anymore, but I just plain don’t feel good. My moon face gets even worse. Everything gets even worse, actually. My weight is the same, but I can’t lean my head back because of the buffalo hump and I can’t even properly snuggle with my fiance because I’m feeling choked by the massive beer cozy o’ fat that surrounds my neck.
*6/2014 My eyes are swelling again. Thyroid levels still normal and I don’t have any markers for Graves specific antibodies. We begin 2nd course of Prednisone.
*8/2014 I’m off Prednisone again. I know something is very wrong. I go to another Endo, Dr. Knecht, who actually listens. He reviews my medical history, looks at my clear physical symptoms, and orders a crapload of labs. The results are pretty clear. It’s Cushings. He thinks there’s a good chance it’s cyclical. Now we start in to determine exactly what kind we’re dealing with.  It’s very likely that all the things I’d been suffering from (the PCOS, the pain/pressure that turned into exoplthalmos, anxiety, migraines) have been directly related to this condition. In Dr. Knecht’s office, I cry from relief. When I get home and tell my partner, I cry because I’m kinda scared.

And then I found you guys. And now I’m really scared. Hopeful, still, but terrified. Because the clinical, dispassionate descriptions about the surgeries that may be needed to “cure” (or at least knock into remission) Cushing’s are very different than yearing about the actual day to day experiences of living with a messed up or woefully inadequate adrenal/endocrine system. I’m confident I’ll get through it, but damn. This is going to be really hard.

I will update more as we get more conclusive answers and I begin treatment.

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