Home

Sheryl, Pituitary Bio

March 6, 2026

MaryO Pituitary , , , , , , , 2 Comments

My journey started about 7 years ago. I began with generalized symptoms. I had severe insomnia, muscle and joint aches. I would be wired for a few days than couldnt get out of bed for days. The symptoms continued to get worse.

I sought help from several dr’s which led nowhere. after doing research I really felt that my symptoms were related to cushings. My local endo did run a few urines and salivas which came back elevated, however, he just wanted to re test in 6 months. I was deteriorating so rapidly that I decided to go to LA and see Dr. Friedman. Best decision of my life.

I will be starting on Ketokonazole after he gets labs that he drew back, and he has Dr. M at MD Anderson reviewing my MRI.

For the first time in many years I feel there is a light at the end of the tunnel. I am so greatful that I have found Board s like this one so that I am able to inform myself. So thank you !

Sheryl added her Helpful Doctor, Theodore Friedman, to the Cushing’s MemberMap

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

In Memory: Erica Michelle “GaGa” Meno ~ March 6, 2015

March 6, 2026

MaryO Adrenal Surgery, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , Leave a comment

in-memory

Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.

I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.

Erica’s official obituary: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.

In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.

She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

~~~~~~

Some of the comments from other Cushies:

My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.

~~

Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,

~~

My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.

~~

I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!

~~

 

Shon (Shon), Undiagnosed Bio

March 5, 2026

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

golden-oldie

 

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.

Below I’ll list my symptoms.

Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Nancy, Pituitary Bio

March 4, 2026

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

The pituitary gland

The pituitary gland

I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order. 

In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.

I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.

I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Gianna, Pituitary Bio

March 4, 2026

MaryO Pituitary, Success Stories, Video , , Leave a comment

In March 2020, college student Gianna Schembari, 23, began to battle an illness that she would later learn is an extremely rare disorder of the endocrine system, the body’s complex network of glands and organs which uses hormones to control critical functions such as metabolism, energy level, and the ability to respond to injury, stress, and mood.

“The most noticeable symptoms that happened that early were the significant weight gain, my mood swings,” recalls Ms. Schembari. “I just kind of started getting into a really depressive state. I would get these headaches and I would get heart palpitations. I mean, things just started getting worse very quickly.”

Eventually, an MRI revealed a small benign tumor, called a microadenoma, located on Gianna’s pituitary gland. That’s an indication of Cushing disease, a rare and serious disorder that affects only 10 to 15 people per million. With proper surgical or medical treatments, a person with Cushing can return to a healthier life — as was the case with Ms. Schembari after she met a team of experts in removing pituitary tumors at Miami Neuroscience Institute, part of Baptist Health.

(Watch video and hear from patient Gianna Schembari and her surgical team: Neurosurgeon Vitaly Siomin, M.D., Miami Neuroscience Institute, and Francisco Pernas, M.D., an ENT (ear, nose and throat specialist) affiliated with Baptist Health. Video by Carol Higgins.)

 

Neurosurgeon Vitaly Siomin, M.D., Miami Neuroscience Institute.

“The pituitary gland is one of the most critical parts of the brain and I would picture it as a command center that would produce the critical hormones and send them to the bloodstream,” explains neurosurgeon Vitaly Siomin, M.D. “Cushing’s disease is a condition when one of the hormones, which is called ACTH, is produced in excessive quantities.”

Once in the bloodstream, the ACTH hormone stimulates different organs of the body, and patients “may present clinically with high blood pressure and with some fat deposition in a very abnormal way. Some patients may decompensate and develop diabetes. The immune response is altered. They may develop brittle bones, pimples on the face and other problems.”

Medication to help shrink the tumor presented severe side effects.

“It made me very, very sick,” said Ms. Schembari. “I could not function. I was in bed. We were just like: Okay, maybe we need to go ask somebody else what they think.”

Ms. Schembari and her family then turned to neurosurgeon, Michael McDermott, M.D., chief medical executive at Miami Neuroscience Institute. A multi-specialty team of physicians experienced in the treatment of pituitary tumors was assembled for her case, including neurosurgeon Vitaly Siomin, M.D. and Francisco Pernas, M.D., an ENT (ear, nose and throat specialist) or otolaryngologist, affiliated with Baptist Hospital and other Baptist Health facilities.

“When I met with the team of all of my different doctors, I just instantly felt like everything was going to be okay,” said Ms. Schembari. “They knew exactly what it was and then they just had their plan as to the treatment.”

Dr. Pernas emphasizes the importance of the team approach at Miami Neuroscience Institute. “Some neurosurgeons will do the surgery on their own,” he said. “The difficulty becomes in the nasal anatomy. We as ENTs are skilled at nasal anatomy, and we’re skilled at nasal endoscopy.”

Dr. Siomin explains how technology has helped advance the removal of pituitary tumors via minimally invasive techniques.

“We could put the scopes through the nostrils and navigate the scopes using what’s called the image guidance technology,” says Dr. Siomin. “It is just like GPS that most people use for driving. We use the same technology for surgery that helps us to go directly to the tumor, open up very minimally and resect the tumor using the endoscopic visualization.

Ms. Schembari recalls her condition before the surgery. “I had high blood pressure, anxiety, panic attacks, nausea, vomiting — all that stuff and I was on about five medications.” But now, she is on track to a full recovery. “Since the surgery, I am not on one medication and all of those symptoms are completely resolved,” she says. “It’s been about seven months since the surgery and I feel amazing.”

Says Dr. Siomin of the pituitary tumor: “It’s all gone. And she has normal pituitary gland tissue.”

To say that Ms. Schembari is grateful is a huge understatement: “They are the best doctors on earth. I feel like a whole new person. I basically got my life back and I’m super, super happy.”

From https://baptisthealth.net/baptist-health-news/i-basically-got-my-life-back-how-experts-at-miami-neuroscience-institute-defeated-this-college-students-tumor-and-debilitating-disorder/

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Lisa B (Lisa/FNP2B2017), Adrenal Bio

March 2, 2026

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

adrenal_glands

 

Hello,

Where do I start? I have had Cushing symptoms since the late 1990″s. I was tested for cushings and was told that I did not have it.

Then in 2007 I was diagnosed with a tumor in my adrenal gland, mind you I still had symptoms off and on since the 90’s. I went to every endocrine in the Fredericksburg area and was on the OR table to have my adrenal gland removed when the Endocrine said that Cushings was not completely ruled in as what was going on with me, despite 3 24 hour urines showing elevated cortisol levels.

Then I went to this doctor then that doctor…….still saying they couldn’t confirm my diagnosis. In October 2007 I was admitted to the hospital with a pneumonia and did an MRI of my head (again) because I was having severe headaches which showed a lesion of some kind.

After 6 weeks of IV antibiotics and a repeat MRI I decided that I should go see a neurosurgeon. As soon as I walked into his office and never saying a word with medical records in my hand he said “Have you ever been worked up for something called Cushing Syndrome? I replied yes and he said you are very sick and need to have it taken care of and sent me to Georgetown Hospital in Washington DC….where I saw a surgeon and had my right adrenal gland removed 12/29/2008.

I have been pretty healthy until about 18 months my primary doctor was concerned about my heart rate being so high and my brother had just had a quad bypass surgery and sent me to the cardiologist. My heart rate has never been lower than 100 since I can’t remember…..and back in March 2014 I started having weakness going up the stairs, then in September my hips and back started hurting and I was having problems falling asleep and staying asleep.

My HbgA1c was 13.7 and I could not figure out why my blood sugars were spiking despite being on a diet and insulin. My cortisol level was normal in October. I started a really strict diet and not cheating the week of Christmas…..yes I know crazy…..I was only eating veggies, protein and 2 fruit servings a day…to detox my body….I gained 6 pounds.

When January came and I had to see my cardiologist for a follow up my heart rate was 128 and I i had gained 17 pounds in four weeks and guess where it all was…..my abdomen…..I felt like my Cushings had been causing havoc on my body. I was noticing the thin skin and bruises that wouldn’t heel. But I was thinking this can’t be returning until my cardiologist ordered that dreaded 24 hour urine and my levels were 98….2 times the normal….

I just did a repeat last week and had a MRI of my abdomen which the urine was guess what positive for elevated cortisol and the real shocker came today when my doctor called and said my MRI showed both adrenals….but how can that be I had the right one removed in 2008 that had a 4cm tumor in it??? My doctor is wondering if there was residual tissue left behind and what seems to be an adrenal is really a tumor??? Has anyone experienced a re-growth or Cushings for a second time….

My doctor is trying to get me into Georgetown asap because obviously the beast has returned.

Thank-you for your support and understandings in advance!!!!!

Lisa

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Mary (Mary), Pituitary Bio

March 2, 2026

MaryO Adrenal Surgery, Fibromyalgia, Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , , , , Leave a comment

golden-oldie

 

I am 38 and had three transphenoidal surgeries for Cushing’s.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing’s so I went on to have a laproscopic adrenalectomy followed quickly by galbladder problems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Jill (Jillleesmith), Adrenal Bio

March 1, 2026

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Treatments , , , , , , , , , , , , , , , 1 Comment

adrenal-glands

 

Cushing’s Syndrome
Addison’s Disease

After I had my daughter in 1995, I started gaining weight. I went from 110 pounds to over 200 pounds in a year. I had so many symptoms and was told to quit eating. My family wondered what happened to me. I never ate much. I was always the smallest one. One doctor even wrote me a prescription to get a dog. Over the course of 10 years, I was told I had possible MS, high blood pressure, diabetes, weight gain, severe depression resulting in several suicide attempts, hallucinations, declining vision, stress, severe fatigue, inability to work, divorce, personality disorder, inability to walk the stairs or walk for that matter and numerous others.

I went undiagnosed for 10 years. I was home sick one day on September 9, 2006. I was watching Mysterious Diagnosis and saw a woman with my symptoms. She had Cushing’s Disease. She turned out to be Sharmyn McGraw, a friend and mentor. I made an appointment for the next day. I asked my doc to test me for Cushing’s. I was diagnosed with multiple tumors in each adrenal gland called Cushing’s Syndrome. I was literally on my death bed. I was unable to care for all my kids and had given my cousin custody of my oldest son and my ex was given full custody of my daughter. I did manage to care for my son Gavin, who actually took care of me. Riding his bike home from school to make sure I was ok and riding his bike home right after school to take care of me.

I went through many different testing including vein catheterization to see which adrenal needed to come out first. I begged my endo to just take them both but with that it would mean I would have to be on steroid replacement everyday for the rest of my life in order to sustain life. I had surgery on November 14, 2006 to remove my left adrenal gland. I lost 45 pounds in 1 month but all of a sudden I was gaining weight once again. It was found that the other tumor riddled adrenal gland needed to come out.

On February 14, 2008, I had my right adrenalectomy. This was an even more difficult recovery. I was hospitalized for 15 days. Resulting in Addison’s Disease, I am unable to work. I lost my home, my kids, my animals, my car, my life. I have not been able to return to work and am on disability. I am just surviving.

The reason for this letter???? First, I want to bring awareness to these very rare life-threatening diseases, Cushing’s Syndrome and Addison’s Disease. My body has never recovered from the extreme weight gain and weight loss. The overproduction of cortisol for 12 years, has caused irreversible damage to my body. I have lost 40 pounds. My stomach hangs and gets in the way. I could never be intimate with anyone because of how my body looks.

Steroids everyday for the rest of my life is a hard pill to swallow. Forgive the pun. Lol

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Brenda, Steroid-Induced Cushing’s

March 1, 2026

MaryO Adrenal Insufficiency, Steroid-Induced , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have had Cushing’s for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health’s Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day…..I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then…I was gaining 10-12 pounds of fluid WEEKLY…finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing’s was related to the steroid’s I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds!

I returned again to Mayo 1/08 and then again 4/08….in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I’d wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing’s Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds…they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!).

After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family…now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows….I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics …unfortunately the “hospitalist” I was assigned (In Michigan your internist doesn’t round on you-you are assigned a hospitalist to take care of your inpatient care)…anyways-he didn’t believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, “my God-she’s in an adrenal crisis!” Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn’t talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn’t talk-I remember hearing the receptionist-but I coudln’t talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08……at this point I was 300 pounds-they did a full body CT, MRI’s of knee’s, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and “Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo’s. I kept a photo journal from the beginning of my journey-taking photo’s of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention – I took these photo’s monthly so the doctor’s could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is “we are here for the patient” unlike many doctor’s I had run into in Grand Rapids-I’m sure many can relate to some doctor’s that don’t even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It’s refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I’ve slowly been weaning-but I’m stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee’s-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby….I’ve been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing’s Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can’t do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I’m suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing’s. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee’s ankles-but I’m not a surgical candidate per my ortho doc….he’s just doesn’t know how to help me.

I think the hardest things for me are just ADL’s (Activities of Daily Living) shower, even using the bathroom, hygeine, etc….and still not allowing anyone to help me-I’m stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it’s too hard-and the stares I get from people, and the laughs because of the Cushing’s is hard….I had been getting my groceries using an Amgio cart-but now that I’m living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it’s been a devestation financially.

I wish everyone with Cushing’s the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can’t imagine not having faith to get throgh this.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

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.’

Older Entries Newer Entries