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Voices from the Past: Kari W (karialeen), Pituitary Bio

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pituitary-gland

 

I am a 37 year old female.

I had a 6mm tumor removed from my pituitary on May, 7th that was causing me to have cushing’s disease.

I also have hypothyroidism.

I am now in recovery and I had no idea what I was in for. Some days i wish for my tumor back. 🙁

 

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Voices from the Past: Lili, Pituitary Post-Op Update

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hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

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Hannah, Pituitary Bio

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A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.

Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.

Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.

In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.

Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.

Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.

“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”

When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.

Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.

“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”

In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.

After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.

She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.

Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.

“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.

“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”

Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.

After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.

After she came off her medication, Hannah said she knew she was better and became determined to lose weight.

She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.

“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.

“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”

Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.

Hannah said: “I am super proud of myself, I am always worried that the weight will come back.

“I feel so much happier. When I look back at myself, I just can’t believe I was that size.

“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”

Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462

In Memory of Stacy Ollenberger ~ November 4, 2015

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stacy-o-memory

 

Stacy’s sister posted on Facebook:
This is my beautiful sister Stacy she was diagnosed with cushings disease in 2005 at the age of 19 she had two pituitary surgeries radiation and finally an adrenalectomy we watched her suffer struggle and fight this disease for ten years there were countless Dr visits and pills she had to take daily until she passed away in her home on November 4 2015 at the age of 30 we miss her so much she has left a hole in our hearts but we will continue to bring awareness to this horrible disease hoping we can save someone’s life…

…Thank you so much for sharing this I think she struggled with the stigma of the disease she was doing so much better but she passed suddenly of adrenal crisis we were shocked we truly believed that she had this beat I know this group was so special to her she even added me to it I think to help me understand what she was going through you are all incredible amazing people to have the strength to battle through this everyday.

From Stacy’s blog:

Monday, April 27, 2009

Ambers Paper

My friend Amber is currently in school (taking Journalism I believe). She started reading my blog and had to write a paper for one of her classes, she asked me if it would be okay for her to write one about Cushing’s Disease and use my blog and/or me for information. I agreed. Amber found out quickly how hard it is to find useful information about Cushing’s Disease in Humans. Alot of sites are geared towards dogs and horses. She agree with the rest of us that it is retarded that there isn’t more information so that people could at least become more informed about this disease. Anyways this is a copy of what she submitted:

Living with Cushing’s disease
By, Amber Yake

When Stacy Ollenberger was 19 years old she began gaining weight at a rapid pace regardless of her healthy lifestyle, when she went to the doctor she was called a liar and told she was just getting fat.

“I saw six doctors before I was diagnosed,” Ollenberger said. “Doctors told me it was just weight gain and I had to change my diet and exercise.”

After seeing five doctors in two different cities, she finally saw a doctor who realized something was wrong with her. He suspected she had Cushing’s disease and referred her to a specialist in Edmonton.

“Finally I saw another doctor and he knew something was wrong. He didn’t know what so he did a bunch of tests and found out that I had extremely high cortisol levels,” Ollenberger said. “He had seen Cushing’s once before and suspected that is what I had but wasn’t a specialist so he referred me to Edmonton.”

According to Ollenberger, an excessive secretion of ACTH, which is produced by a pituitary tumour, causes Cushing’s disease. The ACTH then triggers your adrenal glands to produce excess amounts of cortisol. Symptoms include upper body obesity, round full face, increased fat around the neck, and thinning of arms and legs among other things.

Ollenberger showed all of these symptoms, however; since Cushing’s disease is so rare, none of the doctors she saw thought that is what she had.

“The specialists in Edmonton did not want to see me because they said Cushing’s disease is rare and they said that there was no way I had it,” she said. “They had all my blood work and stuff, my cortisol was more than 6 times higher than that of a “normal” person, and they told us that the tests were wrong and needed to be redone.”

Ollenberger was finally seen by specialists in Edmonton, AB and has since had two brain surgeries in attempts to remove the tumour on her pituitary gland increase. She feels angry at the medical system for not diagnosing her symptoms sooner.

“If I were diagnosed sooner the symptoms of my disease probably would not have gotten so bad and I probably would not have had to go through everything that I have had to—two surgeries, radiation and now I have to get my adrenal glands removed,” she said.

“I mean my family doctor made me feel like I was just a fat slob who didn’t eat right or exercise. He had been my doctor for years, and for me to gain so much weight so fast he should have known something was medically wrong.”

The doctors were unable to completely remove Ollenberger’s tumour. It’s not shrinking or growing. It is not an option to remove more of the tumour so her next option is to get her adrenal glands removed.

According to Ollenberger, this will make her body not be able to produce any more cortisol. Because you need cortisol to survive, after her surgery she will have to start medication to replace the cortisol that her body needs to survive.

“I will be on medication for the rest of my life,” she said.

Ollenberger is also working with her cousin to create a Cushing’s Awareness day in Canada. She wants to educate people so no one has to experience the things she has.

“It only takes one person to educate many and that is what I would like to do, bring awareness to this disease so others do not have to go through what I had to” she said.

 
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MaryO, 32nd Pituitary Surgery Anniversary

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Today is the 32nd anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I didn’t look forward to telling my endo!  I have had a couple more injections.

I also developed an allergy to blackberries in October and had to take Prednisone – and I had to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

MaryO, 31st Pituitary Surgery Anniversary

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Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Autumn, Pituitary Bio PLUS Cushing’s Awareness Stickers

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A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:

CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!

April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.

In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…

Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.

I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.

The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.

And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.

The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.

As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.

I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.

For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.

I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.

These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).

Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.

If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.

Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!

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MaryO: Giving Thanks for 30 Years

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Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Irene, Pituitary Bio

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FOR Irene Fox, everything seemed to go wrong all at once. It was 1999 and she thought her life was falling apart. She felt her relationships had deteriorated.

Her face and stomach became bloated. Meanwhile, her arms and legs became very thin. Her blood pressure was extremely high. The sunlight irritated her eyes.
One day the mother-of-two from Bray, Co Wicklow, lost the use of her leg. Then she started falling. “I was losing power in my arms and legs,” she recalled.
Irene was 47, so, she reasoned, maybe it was just the menopause. But she went to the doctor and found out that it wasn’t. She was sent to St Columcille’s Hospital in Loughlinstown for a battery of tests which went on for more than two years.
In 2002 Irene was diagnosed with Cushings Syndrome, following an MRI scan. It emerged that a tumour on her pituitary gland was causing an excess production of cortisol, the stress-relieving hormone. She had an operation in Beaumont Hospital in August 2003.
“Before the operation I couldn’t walk for more than a few stops before falling down,” she recalls.
Irene’s condition did not improve following the operation, however. She discovered she was unable to keep any food down. In October she collapsed and was brought back to Loughlinstown where she stayed until January 2004.
“I was in intensive care for two weeks and then in the general hospital for 10 weeks.”
Irene, now aged 59, was told she had to increase the amount of steroids she was on.
“I take hydrocortisone and I wear a hydrocortisone bracelet to inform people that I take it.”
These days the mood swings are gone and her eyesight is better. “I walk with a stick but I don’t fall any more — the symptoms were caused by the tumour on the pituitary gland. I’m told that it affects different people in different ways.”
There should be more public awareness about the pituitary gland and its functions, she says.
“I feel there should be more awareness of the pituitary gland and what can happen if anything goes wrong — it’s one of these things that people just don’t seem to know much about.”

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Faith’s Husband, Pituitary Bio

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My husband has Cushings, has had 2 pit surgeries, radation, and is still not any better.

We go to MGH Boston, love our endocrinologist, just wish we would see progress.

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