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Fabiana, Pituitary Bio

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Fabiana had transphenoidal 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

interview

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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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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Magdalena, Food-Dependent Cushing’s Bio

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Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

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Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

Amy (Amybtru), Pituitary/Adrenal Bio

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I am a 45-year-old female I have five children three of which are adults and two that are 17 and 16 years old.

Around 2018 I started to develop a very round face plus I had a lot of weight gain in August 2019 I had an MRI of my brain and there was a pituitary microadenoma 6 mm I had a second MRI in August 2020 and I still had the pituitary microadenoma well then December 2020 I had an MRI and the microadenoma was gone sooooooo I said to my Endo maybe we should take a look at my kidneys

well I just found out about those my right one has a 8 1/2 mm nodule on the adrenal gland and then my left kidney has a some type of cyst on the superior pole of the kidney And some kind of lesion I’ve been referred to a urologist to take out possibly my adrenal gland my endocrinologist he did notate that he was going to be considering adrenalectomy as possibly the Best treatment along with the urologist I just got referred to the urologist I have to call them back on Monday to set up an appointment

I am I am nearly 400 pounds I have lost all my hair I’ve lost my fingernails twice due to fungus ravaging my body when I am sick weak such opportunistic little suckers and I don’t eat very much out of the seven of us in this house I eat less than anybody does no matter how little I eat I just keep getting bigger and bigger and bigger and then I got the skinny legs and I’ve got fins skin that cracks open all the time for no apparent reason and then take forever to heal

I had one midnight salivary test will come back 253 I had a second salivary come back 127 but four months later they messaged me and said it was a mistake the 127 was not my results my result was normal little bit shady I asked how and why this could’ve even happened four months later and the doctor says he does not now s

o then my next cortisol test was with the 8 mg dexamethazone suppression and it took it down very low so I’ve been with this endocrinologist since August 2019 and he’s tested my cortisol three times and my urinary cortisol has collected one time there was nothing cortisol related with my urine and also cortisol blood tests that were within normal limits as well so he says I have intermittent Cushing’s disease

Cushing syndrome yeah I don’t feel that he is vigorously done anything to treat me do more testing do more salivary‘s do more anything if I wasn’t so deep in this already I had to wait four months to see him back in April or August 2019 I’m this far in and to back out now and try to find an endocrinologist would be a total pain in the ass my whole body has changed my mind has changed my memory my vision my confidence

I have a very hairy face now and it actually connects all the way around to make it go to you now so that’s wonderful and my stretch marks have gotten deeper and more severe on my abdomen and sometimes even feel like they could crack open him as I’m prone to fungal infections when I am not in good health I have ringworm on my stomach I have ingrown hairs all over my chin that can’t get through the scar tissue from a previous health issue that I can get into later so the hairs get stuck Behind the scar tissue and just keep getting more ingrown and More ingrown.

I am basically paralyzed and I’ve been telling him this for over a year I feel like I am going to be paralyzed I feel like my legs are not working my muscles are not working I have such weakness and such pain in my body it is unreal it’s inhumane in my opinion and awls I can take for it is Tylenol

I cannot believe in the year 2021 once they killed a bunch of people off with opioids they never thought hey maybe we should develop something else for pain real pain that works idiots!

There is a lot more to my story that I hope to get to share with people that have gone through this living hell and I am in desperate need of support in guidance I have no one to talk to you about this that knows really anything about it so I’m hoping here I can find support.

FIND SOMEONE TO SAY “OMG ME TOO” just any connection and advice I hope to find here. I’m afraid I’ll die before they finally decide to take action.

Carola B (Carola), Adrenal Bio

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On December 26, 2014 I went to a local urgent care clinic with pneumonia, confirmed by an x-ray, for which I was treated.  I received a phone call from the urgent care clinic a few days afterwards explaining that the radiologist had seen something unusual that needed further examination.  After numerous tests my suspected Cushing’s diagnosis was confirmed.  Although I’d had symptoms for the prior ten years or so, I had no idea that they were due to anything other than aging (I was 68). My symptoms included weight gain around my middle which for the first time in my life I couldn’t shed, high blood pressure, pre-diabetes, osteoporosis, bright red blotches all over my arms and eventually hands, which came from even the mildest bump (very embarrassing, so I was constantly looking for the right makeup to cover them up, and wearing long sleeves in spite of living in a tropical climate), a full round face, thin skin that would tear at the slightest nudge with profuse bleeding, very dry hair, splitting nails, and a constant bad taste in my mouth (I always carried a toothbrush, toothpaste and gum), etc.  All these things were puzzling and upsetting, but since no doctor was concerned I didn’t think it was anything other than my body wearing out.

I had an adrenalectomy at UCSF nearly a year after the initial concerning x-ray.  I was told that I should stay home from work for a week, and that I’d be on hydrocortisone until my remaining adrenal gland functioned properly again, but I was given no information about the severity of withdrawal from the huge amounts of cortisol to which my system had become accustomed. I woke up from the “no big deal just one night in the hospital” surgery and felt sick in every cell of my body.  The surgeon came in with his friendly face and asked how I was.  I told him I was sick and he asked where – all I could do is repeat “everywhere”.  He said he couldn’t help me if he didn’t know where I was sick, and I wondered in my grogginess how I was supposed to answer when the answer was that it was everywhere in every way.  At home I slept nearly continually.  After 5 days I saw some slight progress when I was able to wash my hair before falling back in bed.

When I returned to the surgeon after a week he upped my hydrocortisone, at the same time telling me, as did my endocrinologist, that there was no reason I should feel so ill.  The same day the surgeon increased my hydrocortisone my endocrinologist lowered the dose. I was told that I may be having an extreme reaction to the anesthetic, or perhaps I’d had too many surgeries in a short period of time (I’d had knee replacement surgery 6 months prior from which I had fully recovered).  My doctors also said I’d feel better in about 6 months (never had I been told anything about a long recovery period). When I showed my endocrinologist my swollen ankles he said he didn’t know the cause, nor about the aches, fatigue and nausea – one of his theories was that the cortisol had been masking the normal aches and pains of aging.  He discouraged internet research, saying there’s “too much misinformation out there”, but when I asked for a suggestion about a medical textbook, he said that it would be too hard for me to understand.  I did buy a medical textbook on Cushing’s (Cushing’s Syndrome, Ed. Lewis S. Blevins, Jr. M.D.), and therein learned about the extreme discomfort faced by patients undergoing “withdrawal syndrome” and finally felt validated.  I also discovered CRSF, and was thrilled to discover this wonderful resource for understanding my situation, no longer feeling so alone and confused.

What lay ahead was a very challenging, requiring me to make important life changes. My fatigue and nausea were severe, leading to my decision to stop working and cancelation of numerous plans. For months I also felt like an empty shell of a human being and wondered whether I would ever again have a personality – it was the weirdest thing, feeling as if I had no center.

Today my body is different in mostly good ways.  Immediately following surgery my blood pressure was normal, I was no longer pre-diabetic, no red spots ever appeared again, nor does my skin tear as it had.  I also lost the excess weight, and eventually my “real” hair and nails came back.  I am grateful for these wonderful results, and that I had the good fortune to be alerted to the adrenal tumor by a most perceptive radiologist.  The depression eventually lifted, my core sense of self returned, and I feel good.  The bad taste in my mouth disappeared, so I’m no longer a compulsive teeth-brusher, and I was relieved of nausea after four months.  I no longer have the high level of energy I enjoyed prior to surgery, and I’m cold when others are either warm or comfortable, so I just wear more layers, and these are things I can live with.

Gradually I’ve developed better muscle tone after the loss of muscle caused by Cushing’s, with lots of exercise, and I am grateful that I can do yoga, long walks, and other physical activities. I still get extreme fatigue and nausea from time to time after stressful events, such as international travel, and there’s nothing to do except to rest for a day or a few days until I feel better. I’m enormously grateful for the unending support of my husband, family and friends, and to the Cushing’s community for helping me along this strange journey.

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Yana, Pituitary Bio

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It took Yana Zavros 16 years to get diagnosed with a disorder called Cushing’s disease.

Sixteen years of a demoralizing condition that causes muscle weakness, mood changes, and weight gain, among other symptoms, because the patient’s adrenal glands produce too much of the stress hormone cortisol.

By the time Zavros received her diagnosis, she was an accomplished researcher at the University of Arizona who focused on gastric and pancreatic cancer. Cushing’s is rare in humans, and Zavros was frustrated by how long it took to diagnose and that the only treatments available to her weren’t even specific to her disease.

Then, she remembered that she was qualified to start a research program and do something about it.

“It was a turning point in how I viewed research and what we do as scientists,” she says. “I found my purpose.”

In fall 2024, Zavros joined UGA’s new School of Medicine as Research Center Director and Georgia Research Alliance Eminent Scholar in Molecular Medicine. Already, she is partnering with scholars on campus to find new answers for Cushing’s while continuing her cancer research.

Zavros believes the solution for better diagnosis and treatment for Cushing’s disease in humans is first understanding how to cure the disease in dogs through an approach to research called One Health. This concept looks for health solutions beyond the human by also considering animal and environmental health. In the last five years, UGA has invested in the One Health approach as part of a broader effort to bring interdisciplinary research teams together to tackle complex 21st century challenges.

While Cushing’s in humans is rare, that’s not true for canines. About 100,000 dogs are diagnosed with the hormonal disorder each year. Like their human counterparts, dogs with the disease suffer from weakness and weight gain. They also lose their fur, gain pot bellies, and can have a shorter life span.

The fact that both humans and man’s best friend share the disease (which, to be clear, is not contagious) might be the key to finding better treatments or perhaps even a cure for Cushing’s for both species.

“One Health is all about the intersections between humans, other animals, and our environment,” says Jon Mochel, director of UGA’s Precision One Health Initiative. “What can we learn about similarities in diseases, such as cancer or cardiarenal and metabolic diseases, that are shared by humans and other animals? What conditions lead to disease transmission between animals and humans? What role does the environment play in all of this? And how can we create better conditions to optimize human, veterinary, and environmental health?”

One Health has been practiced at UGA for over a decade, but the concept accelerated with the launch of UGA’s Precision One Health Initiative, supported by a hiring initiative in 2021. With UGA’s new School of Medicine, UGA is one of 13 universities in the nation with schools of veterinary medicine, human medicine, and agriculture on one campus. Add these to UGA’s other strengths, which range from pharmacy and engineering to public policy, law, and business, and UGA is positioned to make a unique impact.

“By working together, we can accelerate the discoveries of cures and then speed up the translation of discoveries to bedside practice,” said Jack S. Hu, senior vice president for academic affairs and provost at UGA’s One Health Symposium in November.

This interdisciplinary approach is being targeted at Cushing’s disease. UGA researchers are trying to understand, on a molecular level, the tumors that often cause the condition. And since the disease is much more common in dogs, researchers are collecting tumor biopsies from canine patients at UGA’s Veterinary Teaching Hospital.

“From those biopsies,” explains Mochel, who is also a co-investigator on the Cushing’s project, “we’ve created mini-tumors in dishes to screen for thousands of molecules in the cells. This process will allow us to determine which drugs could be safe and effective in fighting the disease.”

Researchers hope to customize optimal treatments for individual canine patients. If the trial treating dogs for Cushing’s is successful, then the next step is studying treatments in humans.

The research project could help with other applications as well. For example, Karin Allenspach, a clinician scientist and professor of pathology in the College of Veterinary Medicine, is a co-investigator on the Cushing’s research, helping create the mini-tumors called organoids, which serve as three-dimensional models of diseased tissues. These organoids can also be used in cancer research to help try out more drugs more quickly and pinpoint which ones should be tested in clinical trials. If this approach works, it means better treatments delivered to patients faster and cheaper.

UGA’s Precision One Health Initiative is just getting underway, but there’s already momentum toward making an impact.

“We have the resources, the talent, and the expertise to move this field forward,” Mochel says. “Our next step is to effectively translate these efforts from the lab to the patient’s bedside.”

–Aaron Hale, University of Georgia

Cushing’s Stories from the CushieWiki

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Cushie Warriors

Personal Stories – Autumn

Personal Stories – Deb

Personal Stories – HockeyGirl

Personal Stories – Jessica

Personal Stories – Kate

Personal Stories – MaryO

Personal Stories – Staticnrg

All Personal experiences

Linda, Pituitary Bio

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I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical.  I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.

One year prior to my  symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6  and 9.  They are now 17 and 20.  I feel I stopped raising them at this age.  If any of you have seen the Sting  the movie with Paul Newman obbserve that he  dunked his head in ice.  I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!

I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The    E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.

After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills.  I lost 65 lbs. A few years later my head started  hurtimg worse.

After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth.  Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.

I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks..  No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double.  Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??

The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing  hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it    I attempted to drink it.  Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M.  everydyt. If I miss two consecutive days I will die.

I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth.  Only episodes  I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?

By the way, I have a theory  bipolar is assosiated chromosome 13.  I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!

 

Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!

 

Sincerely,,

 

Linda

Tiffany R (tiffers), Adrenal Bio

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I was just diagnosed with Cushings Disease today after over a year of being misdiagnosed..

I’m still not real sure how to react or what this disease actually is, but its nice to see a website where i can can help/info and support! Thanks!

Today would have been Shianne’s Birthday

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I just noticed Shianne’s name on the message boards birthday section.

Instead of remembering this special day every year, we have the annual In Memory post.  This makes me so very sad 😢

 

 

 

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

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

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

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

 

 

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

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

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

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

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

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

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

Her obituary can be read here.

 

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

Linda (lawlesslaw), Adrenal Bio

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The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with Cushings in October of 2009 and had a tumor and my adrenal gland removed in November.

I immediately lost about 55 pounds and it took about a year on meds to get back to “normal”.  My other adrenal gland was awfully lazy so it took it awhile to wake up.  My problem now is that I feel it has come back.

I have the hump and back and stomach fat.  My ankles are swealing but nearly as bad as when I had it the first time.  I have an appointment on 9/5 with my endo doc to see what he thinks.

I was wondering if there is anyone on here I can talk with about cushings reoccurring….

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