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In Memory of Natalie Fay ~ April 21, 2008

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This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Kendra D, Adrenal Bio

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My journey to writing this bio started in 2014, 34 years old.  I ended up in an emergency room in Denver while travelling with severe and unknown abdominal pain.  It came on rapidly during a lunch and I was taken to hospital via ambulance from my hotel room.  Luckily, in Denver, you get a CT scan when there is something wrong with you.  The source of the abdominal pain was never determined, however, the attending physician gave me a CD of the CT, letting me know they had observed a small tumor on the left adrenal gland and even though likely benign, I should discuss with my family physician in Canada.

Back home, I did let my family doctor know and they dismissed it.  Over the next year, I struggled with weight gain and depression, since a surgery the year prior to treat WPW (Wolf Parkinson Whyte syndrome).  It’s an extra electrical pathway in the heart that produced rapid heartbeat (SVT), starting in 2011.  3 years and several physicians later, I underwent and electrocardiogram catheter ablation after a trip to the emergency room with a heartbeat of over 200 BPM’s for approx. 5 hours.  Luckily the emerg room physician was also a cardiologist.  He recognized a small irregularity on my ECG.  I was admitted that night and had the procedure done in 5 days.  After that procedure, I noticed a decline in my energy.  Started gaining weight and just didn’t feel like I had.  I chalked it up to the rapid heart rate accounting for all the gusto I used to have not being a medical professional and that being the only real change in my life to date.

I went to see a naturopath to discuss my symptoms and try to find some answers.  I was ‘diagnosed’ with adrenal fatigue syndrome which I’m sure many of you have heard of.  And you also know how much the mainstream medical community thinks of the ‘condition’.  Not much.  But the books I’d read fit my situation and I went down the road of hormone replacement therapy.  Months of hard to find prescription pills and creams that are not covered by insurance became the bain of my existence and I wasn’t seeing measurable improvements.  I became frustrated and started cleansing, diets, supplements, and working out regularly.  Between strict diet control and working out hardcore daily (crossfit, running, weights), I started to feel pretty good.  I also started taking antidepressants, which really pushed my energy levels up, especially in the initial 6 months.  Then they would plateau, so I would try something different.  Same thing over and over.

That was the last 3 years of my life.  Trying a new drug.  A new routine.  A new relationship.  A long yo yo of up’s and down’s.  If I gained weight and felt lousy, I attributed it to the pills not working anymore.  A relationship that wasn’t working.  Stress.  Work.  Being a single parent.  If I changed something up, I could lose the weight.  If I looked good, I felt good.  That was the litmus test – never mind the depression and anxiety that was ever present.

In 2018, I began to put on weight.  I began to suffer from unmanageable anxiety/depression.  I was so tired, I completely stopped going to the gym.  I went to see the doctor about a new antidepressant.  In the clinic, they noticed my blood pressure was unusually high and started to monitor.  I was prescribed a high blood pressure medication as well as a new antidepressant.  The antidepressant was intense.  I started reading up and what I read scared me.  In conjunction with high blood pressure, I started to really consider that I’m possibly doing more harm than good.  Plus, I was not feeling better like I had in the past.

I quit both the antidepressant and the HBP meds.  Started up with the more natural approach – CBD.  Supplements.  Giving myself a break from hard core exercise.  And reading.  Everything.  In 6 months, I had gained approx. 40 lbs and weighed as much as I had the day I gave birth to my son.  My depression was unmanageable.  I was going through a lot of work/relationship stress as well.  I had tried the ‘chill out’ approach and it simply was not working.  I went back to the doctor, who referred me to an endocrinologist.  I remember bawling in her office bc I felt like a failure and a total loser.  Admitting how my weight had spiraled out of control and how I could not manage my mental health and I’d stopped taking my prescription for HBP – I felt crazy.  She looked me in the eyes and promised to do everything she could to figure out what was wrong.  In that moment, I felt like maybe there was something wrong, maybe I wasn’t crazy.  TBD.

So we spent the next year doing all of the tests.  High cortisol being the constant result.  I started back on a HBP med that acts also a diuretic – which at least helped with water weight.  At the end of all the testing, my endo revealed that she suspected cushing’s syndrome and since we knew there was an adrenal tumor from way back, we re scanned and determined it had doubled in size.  Good chance it could be the culprit, especially if increased in size, it’s a good indication that it is active.  She referred me to one of the best endo surgeons in Calgary and let me know that if her diagnosis did not make me a candidate for an adrenalectomy, the surgeon would not perform it.

I’ve spent the last several months not knowing what to expect.  I think many of you can relate to living in a state of being thankful for an answer but still in disbelief.  I still battle in my head with ‘did I cause this’, ‘is this actually what’s making me sick’, ‘what if I remove my adrenal gland and I never feel good again’, ‘what if the tumor isn’t the culprit’.  I have one last CT scan upcoming Aug 7, prior to setting a surgery date and suspect it will fall within a few weeks of the scan.  I’m looking forward to getting it over with one minute and then feeling really scared the next.

I know I can’t live my life in my current state so I have to proceed with whatever solutions are being offered to me.  That rationale promotes a positive mindset.  But it’s one day at a time.  Some days I feel great, some days I can’t get out of bed.  Still living a yo yo life.  My work keeps me pre-occupied and gives me a reason to get out of bed in the morning.  My therapist helps keep me sane.  No antidepressants.  My family has been a great support.  Most people have never heard of Cushing’s so I just stopped telling people. It is isolating.  People assume I’ve gained weight bc people get fat.  And I have to just embrace where I’m at and not let that affect me so negatively.  This is a rare disease.  I’m excited to share more of this journey on the other side.  These bios have given me such peace of mind over the last several months.  Thank you for listening.

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Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

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Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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Brian R, MENS Bio

1 Comment

 

I became sick July 2014, August my family physician sent me for blood tests etc. by September, I saw thyroid surgeon, had CT and MRI of head throat area. I went to local hospital for the tests. The tests were inconclusive. Bad equipment, I later found out.

Surgeon said we should monitor condition and wait or we could do exploratory surgery. I CHANGED DOCTOR.

Next I went to Nuero for tests, nuropothy had already set in my legs and I was falling all the time. Rapid weight increase, tired and cramping all the time, irritable and miserable. She sent me to endocrinologist and more tests, definitely showed para thyroid adhesions, had surgery in October 2015, didn’t do both sides and would have to have surgery again in December.

Returned to work and immediately tore my shoulder muscles and was finished from work, (Workman’s comp) fought having a MRI, I did it anyhow, went to surgeon and he wouldn’t operate because of my health issues.

In December they removed the growth on other side of para and a lump from thyroid. Four days later I became wheel chair bound.

Now we scheduled the pituitary surgery for February. Wednesday was the surgery and I could get up from bed the next day and walk. (I thoight it was a miracle) Discharged Friday, went for blood test Saturday and tried to get some rest.

By Wednesday I returned to the emergency room with 103 temp and sleeping all the time. They put me in ICU and I spent the next 10 days there.

Upon release we treated the body shutdown with cortisol steroids and continually adjusted my blood pressure meds. Three months later I started therapy to learn how to walk again. I would fall if I turned my head, left or right. Balance and equilibrium was really bad.

I finally returned to play golf in October, exactly 2 years from my first surgery. Weak, but I was able to drive, walk, (gingerly) and socialize.

It is a terrible disease and in July this year I felt it was back and blood tests confirmed my fears. I won’t go into my current conditions.

We all know how this saga plays out.

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Sahana (Sahana), Adrenal Bio

1 Comment

 

My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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A Stunning Woman Reveals The Devastating Secret Behind Her Weight Gain

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Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.

Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.

The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.

But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.

After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.

Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.

“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.

”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.

“I felt bloated all the time and I didn’t want to leave the house.

“I continued working out at the gym not realising I was causing damage.”

In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.

Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”

Despite numerous tests, medics continued to deny there was anything wrong.

The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.

She said: “I took my MRI and CT scan and they saw the tumour was in my brain.

“My hospital had completely mis-read it.”

After further tests, doctors were able to confirm it was a brain tumour.

She said: “I’m not sure how long I had the tumour. I thought I was going to die.”

After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.

She said: “Two days after the first surgery and my feet were normal.

“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.

“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.

“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”

The road to recovery has been long and after eight months, Vicki still has a way to go.

But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.

She said: “It’s a slow process.

“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.

“But I am starting to see improvements and I’m just focusing on my son and school.”

Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.

“He’s the most important thing, I couldn’t have got through this without him.”

From http://www.dailystar.co.uk/diet-fitness/594013/Gain-weight-bikini-fitness-model-brain-tumour

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Wendy, Pituitary Bio

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pituitary-gland

 

I was diagnosed in April 2016 with Cushing Disease caused by a pituitarty adenoma. I believe I have struggled with these syptoms for over a decade.

I had a goiter removed from my thyroid in 1997 and have had numours biopsys on other nodules on my thyriod over the years.

Fortunately, I changed doctors and walk into Dr. Levetan office in Chestnut Hill Hopital. The discovery of my high cotisal levels, many tests, MRIs and a cat scan confirmed my diagnonis. She gave me many answers to different symptoms I have been struggling with that seem to be worse by the day.

In May, I met with Dr. Salvatori at John Hopkins and I am scheduled for surgery 8/10/2016.

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Toni (Toni), Adrenal Bio

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adrenal-location

 

Diagnosed with cushings syndrome, right adenoma. Reviewed right adrenalectomy after 3 years of being bounced from doctor to doctor. Diagnosed with high blood pressure, high cholesterol. Hair loss, intense itching, bruising, weight gain, depression and osteoporosis, eith multiple fractures, torn ligaments and tendons.

Finally after researching a medication that one endocrinologist put me on for the osteoporosis I found another endocrinologist in NY at colombia presbyterian hospital that specializes in premenapausal idiopathic osteoporosis and this medication. I got an appointment with her.

On one review of my history she sent me for 24 hr urine cortisol which came back through the roof.

She then refereed me to their adrenal specialist had a CT scan which revealed a 3.5cm maas on right adrenal gland. Had surgery the next week and am now 4 weeks post op.

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Roseglass (Roseglass), Adrenal BIo

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I have been ill for 9 years. I was experiencing severe anxiety/depression, profuse sweating, extreme hypertension, a non-stop migraine, and living in a constant state of fight-or-flight. Seven years ago, a full body CT scan revealed a left adrenal tumour. It has taken until this past year (actually just a few months ago) to finally get a diagnosis of pheochromocytoma from the medical field (no one listens to the patient – I have been telling them about the pheo and that I have Cushings for 7 years! My cousin died from an undiagnosed pheo.) Fortunately, I have wonderful long-term family doctor and more recently a great endo who have given me alpha and beta blockers to keep the symptoms more tolerable while we waited for a confirmed diagnosis.

Besides the above symptoms from the pheo, I have all the typical Cushing’s symptoms, I have also had a stroke, at least one TIA, and a heart attack. My heart has become enlarged and I can hardly breathe. After the heart attack, my weight took a huge jump. I had already become quite large but then I gained 7″ around the middle in 4 weeks. I complained to my doctors that something was terribly wrong but they kept saying I was just eating too much (sound familiar?). I also have a variety of lesions covering a variety of organs.

Due to the diagnosis of pheochromocytoma (via a MIBG), I was sent to a surgeon. The first was an idiot (don’t stand for that – ever – there are decent people out there). Then I was allowed to choose my own team. I found a team in Toronto, at Princess Margaret Hospital, who are knowledgeable and really understand this disease. When they said I had classic Cushing’s, my eyes teared up – finally someone saw it.

I have just had my 1st consultation with them, plus more tests, and am waiting for my 2nd consultation in January when I also expect to meet with the surgeon. It is looking hopeful that I may have my life back. They believe my body will go back to normal: my heart, diabetes reversal, my hair return to normal (more on head, less on chin), pain relieved (I can hardly walk and cannot climb stairs), and other delightful changes …including a normal life span.

I am worried about small lesions developing on my pituitary and right adrenal gland but no one is really looking at those at the moment. I just got word that the left adrenal tumour doubled in size recently so getting this out is the priority. It has been such a long and frustrating process that I won’t feel truly at ease until I have an actual surgery date.

Roseglass

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TONIGHT! Interview with Fabiana

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Fabiana will be our guest in an interview on BlogTalk Radio  Wednesday, October 21 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 88 other past interviews to listen to!

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Fabiana had transsphenoidal surgery (pituitary) July 30th 2004.  She had a recurrence after seven years of being Cushing’s free.  A second pituitary surgery on 10/26/2011 was unsuccessful.

Another Golden Oldie, this bio was last updated 9/12/2015

Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!

I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.

My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.

As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.

High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.

Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.

When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.

I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)

In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.

July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!

It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.

This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…

I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!

ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!

Update November 6, 2011

Well- here is an update, after seven years of being Cushings free it has returned.

With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.

So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.

It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.

I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.

Many Blessings!

Fabiana

Update September 12, 2015

So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.

My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.

In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.

So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.

Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.

But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.

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