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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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rokchix86 (rokchix86), Undiagnosed Bio

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undiagnosed3

 

So, I’m in the process of being tested for Cushings. I have to have an MRI and CT scan pending bloodwork results for the contrast dye. My endocrinologist said I keep failing my cortisol tests. In other words something is always elevated.

For me my journey began a few years back when I was working out like crazy doing cross training and kickboxing 4 days a week and bike riding and taking long walks, I was also dieting. I kept gaining weight. I started needing maternity clothes. I had the hump already for a few years but was previously able to lose weight.

I assumed oin was menopause but nothing I did worked. The Drs did bloodwork which was all fine. I started having hot flashes do they put me on HRT which actually caused me to drop 5 lbs. Now I know something is off.

It took my BP shooting up suddenly along with my A1C reaching prediabetic range for the Drs to believe there really was something going on.

So here I am, I started my testing in June and now it’s Sept. Still no official diagnosis. I’m very tired and depressed. I don’t go out because I don’t want to see anyone. I can only wear stretchy pants and have a hard time finding long enough shirts.

I don’t recognize myself anymore. *sigh*

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Rita (Rita), Steroid-Induced Bio

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Hello to those who are frustrated & suffering!

My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.

My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.

I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.

I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.

I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.

Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.

I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.

During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.

I was extremely depressed and felt like I was dying!!!

April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.

This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)

He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.

I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.

Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.

If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j

Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!

Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!

Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!

Thank you kindly for reading my story,
Rita in New Jersey

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In Memory of Natalie ~ 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.

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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.

Sandi J, Undiagnosed Bio

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Recently I had a kidney stone. I went to the ER where they did a CT scan. The confirmed the stone and gave me pain pills to tough it out. A couple of weeks later I got a letter describing all of the CT findings. I had to look up all of them to figure out what they meant. One of them was adrenal adenoma. When I started reading about this one it was like reading my medical history. Weight gain in the belly, hump on my shoulders, high blood pressure, high sugar, high triglycerides, fatigue, depression, serious panic attacks, aching muscles…

I didn’t have a regular doctor because I just moved to Phoenix and was fed up with the VA. I’m a disabled vet due to a back injury in my first year of enlistment. So I got an internal doctor and showed her my CT findings, she wasn’t worried but upon insistence I got her to test more. She called me a few days later to tell me that it was a functioning adenoma. She is sending me to an endocrinologist because it might be part of a bigger autoimmune disease, I’m guessing Cushings.

I told her I knew exactly when it started, in 2003. That was shortly after finishing Hepatitic C treatment and when I had my first panic attack. I had no idea what was happening and called 911 and took an ambulance ride to the ER. They found nothing physical, so continued my life of being treated as a hypochondriac. Oh yes, prior to the Hep C diagnosis I was treated as a mental patient, depression got stamped on my forehead for over a year…

Now here I am 11 years later, 60 pounds over weight, can barely go up stairs without getting out of breath and starting a panic attack. Doctors have been riding me about my weight, and not exercising… Finally they hear me!

Now I have found this board and have lots of reading to do.

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Interview May 14 with 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

If you   have questions for our guest, the call-in number is (347) 843-4703
Archives will be 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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Rebecca D (Rebecca D), Pituitary Bio

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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

Update:  Rebecca is writing blog.  Find it at http://thecurvycushie.blogspot.ca/

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Rosemary (Berry), Undiagnosed Bio

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No formal diagnosis yet.  Self-diagnosis by overhwhelming clinical suspicion, including CT scan evidence of growing left adrenal adenoma.

Clueless endrocrinologist who has missed the diagnosis for the whole two years I have been consulting her, including missing an acute state caused by prescribed Prednisone that resulted in my being pushed into her office in a wheelchair.  She didn’t even comment on that. :-O

I am booked in to see another endocrinologist in late January – the earliest appointment I could get.  Meanwhile I have some fairly serious symptoms that are getting worse.  I hope I make it to surgery.

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Teri, Adrenal Bio

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golden-oldie

My name is Teri and I was dignosed with cushings about a year ago though I believe I have had it a long time.

I went to the emergency room for a kidney stone and the did a c-scan and found a large mass on my right adrenal gland and later found out there is another one on my left. I had my adrenal gland removed the first of November.

I am also about to have my thyroid removed due to several nodules and a large goiter! Cortisol levels are still high!!!

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Kim, Undiagnosed Bio

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golden-oldie

Hello, everyone. Below is information from my introduction at Cushings-Help.

“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.

From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.

…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”

January 30, 2012

Today I had an initial appt with an endo who ordered the following tests:

Gave blood today to measure:

UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)

GONAD #1

Thyroid Antibodies

Vitamin B12/Folate

IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)

IGF-BP3

ACTH

Cortisol

Cardio CRP

DHEA (history of high DHEA … 554, 717, 1342)

Ferritin

Prolactin

Free Testosterone (history of low Free T)

Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)

Vitamin B1

Vitamin B6

Vitamin C

Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).

Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet

Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)

I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.

This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)

I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.

I’ll post more about my journey as my test results start coming in.

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