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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

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Tanya (Tanylou), Testing for Cushing’s

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Testing!

Hi I’m a 51yo mother of four kidults and 2 grandsons.

I havea few health issues including diverticular disease, hypothyroidism, hashimotos autoimmune thyroiditis (including multinodular gland), secondary hyperparathyroidism, non alcoholic fatty liver, high cholesterol, major depressive disorder and social anxiety and borderline diabetes.

I’m currently undergoing tests for cushings due to 2 recent elevated cortisol levels on a 4 point saliva test and morning cortisol blood tests. I have a hump, puffy face, signicant weight gain, ushing, excessive sweating, anxiety, skin issues (granuloma annulare, new stretch marks, rashes).

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In Memory of Diane, April 2008

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in-memory

My name is Amy and my very best friend just passed away from an adrenal crisis. Diane was unaware that she had any adrenal issue.

She seemed to have gotten sick on Sat. and was passed away by the morning. After 45 days of an autopsy, it was determined that her adrenal glands were “wasted” and she had an adrenal crisis and died.

I am looking for a better understanding of what this is all about.

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Shea S (Shea), Undiagnosed Bio

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I am a 54-year-old woman who over the past two years has developed a buffalo hump and gained 60 pounds.

Initially, I had hair coming in heavily but now I seem to be losing it: my eyebrows, the hair on my forearms, facial hair and now the hair on my head. I hurt… A lot!

I have trouble sleeping, I am moody and I have no “absolute zero” interest in what was once a vibrant sex life. I’m confused and so done with doctors telling me I just need to lose weight.

My self-esteem has bottomed out at zero, going from my very active fitness oriented lifestyle to an often limping, painful, moon faced, overweight, buffalo humped middle-aged woman.

Aaaaaggghhhh!


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In Memory: Alena Renea Weeks Greenhill ~ March 30, 2007

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in-memory

March 30, 2007

AIKEN – Ms. Alena Renea Weeks Greenhill, 31, of Aiken, died Friday, March 30, 2007 at her residence. Funeral services will be held at 3:00 PM Wednesday in the Shellhouse-Rivers Funeral Home Chapel. Reverend Robert Rish will officiate. Interment will follow in the Clearwater Branch Baptist Church Cemetery.

Pallbearers will be Joshua Weeks, Jim Rutland, Morgan Weeks, Greg Smith, Jimmy Jones, and Charles Jones.

Renea was born in Aiken, a daughter of Gail Weeks, Aiken; and James “Randy” and Debbie Weeks, Aiken. She was a lifelong resident, and worked as a medical assistant at the Women’s Health Association.

In addition to her children, Olivia Ann “Libby” and David Randall “DJ” Greenhill, survivors are a sister, Dawn Rutland (Jim) Aiken; a brother Joshua Weeks (Melissa) Aiken; Nikki Weeks, Aiken, Danielle Smith, Aiken; Greg Smith (Maria), Aiken; Kasey Smith, Aiken; JerriLynn Smith, Lincolnton; a maternal grandmother, Joyce Weeks, Aiken; a paternal grandmother, Harriette Weeks, Aiken; twelve nieces and nephews; and her special friend, Jimmy Jones, Aiken.

A niece, Taylor Weeks, and a grandfather, Gene Weeks, preceded her in death.

Please visit Renea’s online memorial at shellhouseriversfuneralhome.com

The family will receive friends at the residence of Joshua Weeks, 2334 Wire Road, Aiken on Tuesday from 12-5 PM and from 6-8 PM Tuesday evening at Shellhouse-Rivers Funeral Home, Inc., 715 East Pine Log Rd., Aiken, SC.


From my email:

Mary, I got a call tonight from Renea Greenhill’s mom who told me that Renea died Friday night. Renea was from Aiken, SC and was on the board until she did not have a computer anymore. She had tried to get groups together in SC. She had left a note that if she died that her mother was to call me and I was to let everyone on the Cushing’s board know of her death. Her mother had seen her on Friday night and talked with her later. Her boyfriend came over and found her on the floor. He called her mother who told him to call 911. He did and her mother got right over there. 911 got there, but did not attempt to revive her and she was to be an organ donor and the organs could not be used. She was dead. An autopsy found nothing wrong with her physically. I told her mother that I bet she died of an adrenal crisis and told her mother to call the coroner to have them do tests for that. She was very appreciative of my thinking of this and was going to call. Renea had been to see Dr. Laws for surgery several years ago. She ended up with meningitis from surgery there. She ended up in critical care at the Medical University of SC. Later had her adrenal glands removed. She had “beat” cushings her mother said. She had lost over 300 lbs. She has two young children who are now without a mother. Her husband had divorced her several years ago, so she was rearing the children as a single mom. Please pass this on to everyone for me for Renea at her request if this happened to her. She loved her Cushing’s friends. Below is her obit. Memorials are to be made to the Cushing’s group.

On the message boards:

• I knew Renea – I met her the Tennessee CUSH Conference. What a shame sad.gif

• I am sorry to hear of Renea’s passing…thank you for sharing with us. Condolences to her family, friends and loved ones.

• So very young — so very sad.

• My Goodness, she was so very young. This is a startling reminder how serious an adrenal crisis can be. Thank you for carrying out her wishes to let us know.

• Oh my…

I talked with Renea a few months ago. It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn’t need replacement. She hadn’t taken hydro for some year(s), and yet her cortisol was always “0”. The doctors would just scratch their heads.

Thanks for posting Mary. My prayers are with her and her family.

• I am so sorry to hear about this. My prayers go out to her children and her family. What is scary to me is the fact that, considering her history no one there thought to check to see if an adrenal crisis was responsible.

• How terribly sad. And the two young kiddies too. She sounds a remarkable woman. Very sad indeed.

• I am absolutely heartbroken over Renea’s death. She was far too young and she already suffered so much. I hope her kids know how much she loved them. I have been struggling with my own health issues lately and her death brings home just how dangerous our lives can be.

I hope she is at peace and that her family is able to cope with her death. I am so very sorry that we lost such a great person. Renea was a great source of strength for me and I will miss her dearly.

• Very sad news! My thoughts are with her family and her children.

• Thoughts with her family and children. Her mother must be devastated. I hope she can read the posts and know she’s thought of.
Very sad for these children to lose their mother at such a young age.

• My deepest condolences to her family and friends.

• How very sad. So young, and had already been through so much.

My thoughts are with her family & friends

• So very sad. So young , & so much still ahead of her.

In my prayers

• I wonder if they checked her for Nelson’s also? She looks very tan. My deepest condolences to her family and friends.

• Such a sad ending to a beautiful life. Sending peaceful thoughts to her family..

• It is very sad to fight that hard… and then the family does not know why… my thoughts and prayers are with them… It breaks my heart to think that she had to suffer so much, but she must have been such a strong, brave person to go through it. My prayers are with the family..

• How sad – she was so young. My sympathies to her children and all of her family.

• I’m so sorry to hear that another Dear Cushie was lost, I remember Renea from the old board mostly and remember how, very sick she was after her surgery, as others said she was way too young, and I’m sure her family and friends will miss her so very much. Someone we have to get all doctors on board to realize how very serious this illness is, not just a few who are out West, we all know they are good doctors, but we need some good ones in the Midwest, in the South, in the East, I know there are some, but we need more pit centers and more pit spealist on understands the devastating and life or death realality some of these pituitary tumors or adrenal tumors can cause.

I’m so sorry to learn on this happening to a dear cushie I remember from the boards.

• My prayers to her family. May God bless and keep her children. I can’t imagine how hard this is for them.

In Memory: Shianne Lombard-Treman, March 28, 2018

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Shianne was a Cushing’s Survivor who had just published a book, Be Your Own Doctor

After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone.

With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances.

Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

 

 

Shianne Lombard Treman took her life on Wednesday, March 28th after a long struggle with depression brought on by the removal of her adrenal glands to the advancement of Cushing’s Syndrome. 

Shianne is survived by; her husband Timothy Treman, fur babies Molly & Charlie of Baltimore, her mother Geraldine Lombard, sister Danielle Huston, Husband John Huston and their 6 children, Caleb, Alaina, Juliana, Jeremy, Ashley, Aaron of Tawney Town, Brother Michael his wife Sue and brother Enzo and partner David of San Francisco and New Orleans. 

Shianne was born on May 3, 1977. She graduated from Towson University with a degree in Kinesiology. She used this degree to become a personal trainer. She loved helping people get healthy and ended up training two of the “Biggest Losers” on the reality TV show. This led to her being on Oprah as well as Dr. Phil to talk about fitness and health. 

She started her own business as a trainer in San Francisco for 5 years. It was in San Francisco that she met her dashing husband, Tim Treman. They were married in Bethany Beach Delaware in May of 2013 and moved to Baltimore in June of 2013 joining the O’Donnell Square neighborhood.

Among her accomplishments are a Black Belt in Taekwondo, multiple marathons, Tri Athlons and her work with charities.
Shianne changed lives. So many people have come forward to say that she changed their life by teaching them healthier ways to live. She inspired so many that when she was diagnosed with Cushing’s disease, a rare condition, she went into research mode to find out everything she could so she could keep doing this work of helping others. Again, she brought her knowledge of health into play by writing a book about the experience to help others with this disease. “Be Your Own Doctor” explains her battle to maintain fitness and recovery which had never been previously explored for folks dealing with Cushing’s. She was asked to speak at the Magic Johnson conference on rare diseases and in Congress about Cushings. She was also asked to speak at the National Institute of Health Conference. Unfortunately, that was never to be. Cushing’s took more than just her body, it slowly took her mind and spirit.

She was an extraordinary person who lived an extraordinary life… a bright star that burned out too soon.

Viewing will be from 4-7PM Wed April 4th at Connelly Funeral Home of Dundalk 7110 Sollers Point Rd 410 – 285 – 2900.
Reception from 7:30- for close family and friends at Sparrows Point Country Club 919 Wise Avenue, Baltimore MD 21222

Her obituary can be read here.

 

Shianne F. Lombard-Treman
May 03, 1977 – March 28, 2018

MaryO/COVID Vaccine 2

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Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection was March 15, 2021.  This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot.  My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)


Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment.  On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already.  YAY

I got this information again from CVS:

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

This time I wasn’t met by anyone  at door but I knew from before where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 2 people ahead of me that I could see.  It went very fast.  I was in the little partitioned off area within less than 10 minutes.

The nurse asked if left arm was ok to use.

The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..

The nurse said if I get a headache, take Tylenol only.  She also said to stay hydrated.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).

Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out.  I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:

Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer.

Who knew – I thought I’d made them up.  I hope this was the only one.

I could not believe how thirsty I was for the first couple days.  My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot.  Sometimes, I didn’t quite make it.

I was so tired, I skipped my growth hormone injection.

About 10 pm I started being very cold.  I don’t know if that’s a symptom but I noted that on February 17, also.

My arm seems like it is more sore than last time.

About 3 am, I got up needing to get a drink of water and I was still so cold.  I was under 3 blankets, wearing a hoodie and a very warm knit cap.  I didn’t have the death dreams like last time but some that were work-related and all jumbled up.  This has to get done before that can, but then, this other thing happens, type thing.  I just got up, got a little hydrated and checked my emails.

As soon as I typed this sentence, I put my mittens back on.

Tuesday, March 16, 2021:  My arm was sorer than Monday and I was still feeling cold, sleeping off and on.  Still very thirsty.

I skipped my growth hormone injection again.

I had trouble sleeping, especially if I tried to roll over.

Wednesday, March 17, 2021:  We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.

I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty. I slept more until about 1 pm and I cancelled piano lessons for the day.  

After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.

At that point, I realized I hadn’t eaten for 2 days or had any coffee!. 

For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant.  I have never in my life craved salad.

I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.

I went to bed at 11 pm.  Tossed and turned all night.

Thursday, March 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday.  The call was pretty funny because we both were brain foggy and trying to think of words.  His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in.  That sounds to me more like it was injected into a vein than a muscle.

My DH went out to Domino’s and got some dinner – and finally, I got that salad!

Friday, March 19, 2021: Just the normal tiredness.  Hooray!  We went back to water exercise.  I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.

Saturday, March 20, 2021: DH gets his second shot!

In 14 days, I’ll  be considered to be vaccinated.  April 8, we will go visit our new grandson in NYC without quarantining or testing.


Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the second injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

A really good article – Coronavirus Life: What To Expect When You Get Vaccinated Against COVID-19

In Memory: Deloreese Daniels Owens, March 16, 2002

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March 16, 2002

Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.

From 2002:

“Touched By a Pituitary Tragedy”

Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.

Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”

Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”

But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”

Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”

In Memory: Marie Richardson, March 2009

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A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body’s hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson’s death had been Cushing’s disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson’s husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson’s family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson’s treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: “This is not an indication of responsibility, blame or judgment.
“That is not my jurisdiction.

My very sincere condolences go to the family.”

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P. Hyde, Undiagnosed Bio

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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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Cheryl, Bilateral Adrenalectomy Patient Bio

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Recently had both adrenal glands removed 5/7/20 after 2 failed pituitary surgeries due to Cushings disease.

Cheryl huth 63 yrs old married to David Huth  live in Mount Dora florida.

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