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Téra (HappyGirl), Video Bio

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Téra is a member of the message boards – you can respond to her posts here.

Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!” These are very important things to remember.

1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.

2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.

3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.

4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.

5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!

6. Put down the mouse & step away from the computer & examine me!

7. Actively Listen to what I am saying to you!

8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.

9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.

10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!

11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.

12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.

13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!

14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!

15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.

16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.


Part 2

In addition to the 16 items above, she added:

17. You can have normal ACTH levels and still have Cushing’s. “Patients with ACTH-secreting tumors will either have a normal or elevated level of ACTH.” – Dr. Findling Dr. Findling is an endocrinologist and Professor of Medicine at the Medical College of Wisconsin. Dr. Findling has been dedicated to the clinical evaluation and care of patients with Cushing’s syndrome for over thirty years. He has over 100 publications and was a co-author of the Endocrine Society guidelines for the diagnosis of Cushing’s syndrome.

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Why Did I Stop Sleeping?

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From Prevention Magazine…

Joanna, Undiagnosed Bio

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Im a 41 year old female currently in the very beginning stages of testing. Im pending results of a 24 hour urine cortisol and will be completing the 1 mg dexamethasone suppression test shortly.

My symptoms are buffalo hump, thin arms and thinner legs, fatigue, extreme leg aching, skin feels loke its sunburned, high triglycerides, high cholesterol, weight gain, hair growth on face, the list goes on and on and on.

I was tested for adrenal issues in 2017 and administered the 1 hour ACTH test which came back normal. At that time i was diagnosed with hypothyroid, and elevated testosterone. I recently changed health insurance and had to find a new PCP. At my initial appt i mentioned my buffalo hump was getting worse.

I had a ultrasound done where the “Findings suspicious for hypertrophy in the neck fat pad which could represent fat redistribution syndrome”. These findings were what kicked off the Cushings testing. Ive gained  40lbs in the last 4 months with no change to my diet.

Im just praying that i can find some answers because Im miserable and want to live a very full and productive life.

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P. Hyde, Undiagnosed Bio

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48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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In Memory: Liz Raftery, March 2012

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A Golden Oldie

We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards.  She had a photo gallery there.  The photo below is from that gallery.

Liz in 2002The image at left is from 2002.

Liz wrote in her bio:

Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)

I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later.

So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.

In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!

Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages!

Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.

As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.

Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).

Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too.

All the best.
Liz

Update April 21, 2005.

Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring!

It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!!

Wish me luck …

Posts in Liz’s memory:

Terry: Oh no, that is terribly sad.

Jenny: Oh no, what happened, did he say? 😦

Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 😦

Regina: How tragic! :/

Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies

Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life..  Hugs and prayers to Liz’s family!

MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say.  I hate when Cushies die 😦

Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx

Liz: Me too Mary me too, just brings everything to a scary place for all of us !!

Trisha: I am so sorry to hear this. I remember Liz from the boards.

Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx

Lisa: God bless her family..so sad 😦

Kim: So sad

Jennyfer: Oh no no more cushies down please send my love

Judy: So sad. Does anyone know how old she was, I had never figured that out.

Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences.

Linda: No! Not Liz! No no no

MaryO: She was 45. On the C-H boards, her name was Lizr007

Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply.

Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone….

Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young.

Adrienne: so sorry, so sad!!!

Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone.

Stephanie: How tragic!! Thoughts and Prayers for her family and friends.

Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences.

Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease.

Sandra:  RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx

Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family..

Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful.

Janelle: So sad.. Please let us know what the complications were.. 😦

Alicia: So sad. We are losing way too many people to this disease. Praying for her family.

Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly.

Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family.

Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her.

And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group.

Hugging all of you a little tighter today.

— Melissa, TX

Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R.

Chanelle: Omg!! Ugh my head hurts :((

Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x

Christina: 😦 so sad to hear this, RIP to her.

Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend.

Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey.

Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you.

missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s.

Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family.

Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking.

Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends.

Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was.

Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know.

Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair.

Just read it was a heart attack (Thanks Sandra).  – heartbreaking.

Gumdrop: So sad to hear this. I pray her family is comforted.

Sandra: If I find any more info out I will post

Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time.

Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her.

Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her…

Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers.

Mary: oh no! devastating news. so sorry and saddened to hear. 😦

Amy: I am so broken hearted. 😦 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind”

Dacia: Please send my love, my thoughts and prayers to all…

AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!!

Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx

The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart.

Rest in peace lovely lady….

Your Cushy friend, always,

Diane

x

Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is.

Monica:  Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle.

Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift.

love,

melly

3v3:  I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 😦

Judy:  Mine too. It’s just so sad. I pray for the family.

Beth: Such a tragic loss.. I wish her family and friends strength and peace. 😦

Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X

Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers,

Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years.

Stanley : I’m sorry to hear that.

Melissa: This makes me cry all over again.

Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records.

Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young.

Rissa: This is so sad. Praying for Liz and her family tonight.

Ikho: This news makes me so sad. My condolences to her family.

Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them.

Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 😦

Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. 😥

Jo: cant believe it.  very sad, god bless our dear friend Liz.taken far too soon.

Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 😦

Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away.  Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed.

Mary R:  We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family.

PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf.

Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family.

Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx

Amy: I was so very fond of Liz and my heart is still broken in two. 😦

Diane:  I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed.

Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it.

Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad.

betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family.

Liz, may you rest in peace, and dance among the angels.

Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz.

Diane:  That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx

Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x

Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her.

Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones.

Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012.  Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome.

Tanya: 😦 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’

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

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Hi Ladies and Gents, my fellow Cushies!

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

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

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

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

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

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

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

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

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

Stay Beautiful xoxox

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

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Nicole, Undiagnosed Bio

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My name is Nicole, currently 19 years old. I’m a student at The Juilliard School in New York studying Dance. I don’t know why it’s taken me so long to reach out to this community, I have certainly been stalking and researching this disease for months now… I guess I’m ready now to share my own story, especially since I feel more hopeless and alone than ever before.

July 2015— It all started about two years ago. I was only 17 and very much in peak-performance shape. I looked and felt like an athlete training to be a professional ballet dancer. I prided myself for my toned body, which is very very important in the dance world. I think I weighed about 103 lbs at a height of 5’4″.

But that summer I noticed it became increasingly difficult for me to fall sleep at night. I would sometimes stay up until 3 or 4 AM when I knew I had to be up at 6 or 7 AM for a full 8 hour day of dancing. I started to stress eat a lot as well and by the end of summer I blamed myself when I had gained back all the weight I had worked to lose the previous year, plus some. I think I was about 114 lbs by the end of August.

Around this time I also sought out a Naturopathic doctor for the first time at the suggestion from a friend to help me treat an underlying anxiety disorder. I was given supplements, and for a while my health improved considerably. I felt more calm and sane than ever before in my entire life. But that didn’t last long. I continued to steadily gain weight during my senior year, always going on extreme fad diets to try to maintain. Sometimes it worked, sometimes not.

March 2016– By the time Spring rolled around I was really starting to notice a difference in my appearance. My face had begun to swell and I began to wonder if maybe my weight was out of my control. Maybe there was an explanation for my struggles and failed efforts. So I began researching hypothyroidism, since it runs in my family, and I went to my primary care doctor to ask for the first tests. Little did I know this would be the beginning of a long and defeating marathon.

My doctor initially treated me like I was crazy. Saying that if anything I was still underweight and that I should be concerned about my primary amenorrhea (I had still never had a period). But he did the tests and the results came back suggesting hyperthyroidism. I was confused because all my symptoms suggested otherwise. Nevertheless I was shipped off to an endocrinologist who was of little help to me throughout the summer while I continued to dance and went away for a summer intensive in Chicago.

June 2016– While in Chicago my weight just ballooned even more. I admit I did gain muscle but that was thanks to the rigorous amount of training I was doing at the time. I definitely didn’t look right though. My muscles were buried under a layer of fat, no tone was visible, and my puffy face made me look like a stranger to friends when I returned home. I tried various thyroid replacement hormones at low doses, desperate to get my body back.

August 2016– I had returned to my Naturopath in the hopes she could finally diagnose me with hypothyroidism. She did, and in fact she discovered I have Hashimoto’s, which explained the fluctuating levels. She put me on NaturThroid before saying goodbye as I departed for my Freshman year of college at The Juilliard School.

September 2016– My health improved a short while. I lost some of the puffiness on my face, dropped some weight, but settled around 117 lbs. This only lasted about a month.

October 2016– By October things turned for the worst. I felt only weaker the more I pushed myself each day. My muscles weren’t allowing me to dance at the same capacity as I once had, I was embarrassed by my short comings, especially being surrounded by so many talented individuals. My weight started rapidly increasing now. I regained the puffiness around my face and neck, and my weight went from 117 to 126 in a matter of a month.

I was referred to a Reproductive Endocrinologist who thought I had PCOS and put me on metformin. To her credit, I did fit the profile. I complained of rapid weight gain, I had slightly elevated testosterone, and I had a few small cysts on my ovaries. But there were also things that didn’t fit the bill. Like my apparent lack of Estrogen, which is usually elevated in PCOS. And that I had never had a period before. I also showed no signs of pre-diabetes.

January 2017– After winter break I really could no longer put a stop to my weight gain. No matter what, it just went up. I tried cutting carbs, sugar, and calories to below 1,200 a day, all while dancing 6-8 hours a day and my weight only went up.
Metformin didn’t work. Repro. Endo. put me on estrogen and progesterone for a while, but I stopped seeing her eventually because she didn’t listen to me and ignored my qualms about weight.

I also grew very very depressed around this time and began to wonder if this was the end of my dance career. I was starting to look like a joke in classes. I mourned my body. I didn’t recognize myself in the mirror.

May 2017– After months of research I began to wonder if I might have Cushing’s disease. I had the stretch marks on my butt and thighs, the filling in of fat around the collar bone, neck and jawline. Rapid weight gain, fatigue, depression, angry outbursts, and flushed cheeks. I do not have central obesity, but my weight has always tended to go to my butt and thighs. Though for the first time ever I begin to form a muffin top and fat on my arms. Cellulite appeared everywhere when I stretched my skin even a little bit, very odd to see cellulite on your knees! I had swollen legs too.
I now weighed 135+ lbs.

June 2017– When I got home for summer break my mom and I saw Neuro Endocrinologist Dr. Kevin Yuen at Swedish Pituitary Center. He listens to me, the first doctor to really listen! And he began testing.
Four 24/hr urine, 4 midnight salivary cortisol, 1 dexamethasone suppression test, 1 dex-CRH test, 1 Pituitary MRI.

July 2017– (current weight = 147 lbs) After a visit with Dr. Yuen and weeks of speculation he concludes there is only a 50/50 chance I have Cushing’s. Test results are as follows:
-2 mildly elevated 24/hr urines
-2 normal 24/hr urines
-3 elevated midnight salivary cortisols
-1 completely normal midnight salivary cortisol
-normal response (suppressed) after low dose dexamethasone
-normal response to Dex-CRH
-normal MRI

I’m disappointed to say the least that there is not more resounding evidence that I have this disease. I feel so certain that I have it. My body and mind are changing so rapidly I just want to cry every day. It’s so bad I don’t think I can return to school in the fall. I may have to take a year off of dance if I don’t get my body back in shape by the fall. And a year off of training could ruin me!!

Dr. Yuen suggests doing a hospital stay at Swedish to conduct further testing, particularly midnight serum cortisol, to see if more positive results might outweigh the normal results. I guess he wonders if I did something to mess up the cortisol response in some of the tests, though I don’t see how I could have! I’ve barely done anything this summer, definitely nothing exciting. I’m home-bound because I feel so depressed.

I don’t go to ballet classes anymore because it’s too painful to see myself in the mirror and try to dance in a fat suit. None of my clothes fit anymore. I just don’t feel like a young attractive woman like I used to. Not to mention my energy is out the window.

I haven’t quite given up yet! I eat a very limited paleo diet that omits grains and sugar (except those naturally occurring). I try to swim at least every other day and keep up with my pilates and stretching. It’s not the same though.

I might give up if after the hospital stay, the tests come back normal and I’m told I do not have Cushing’s, when I don’t see how it could be anything else!

I just want my life back.

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Annette S (Annette), Undiagnosed Bio

2 Comments

undiagnosed3

 

43 yr old female- trying to get diagnosed
I have about 41 out of 42 Cushing Symptoms
Have been diagnosed as insulin resistant and as of recent was told I am not insulin resistant
Have had one Dex Suppression test – negative and 2 – 24 hour urine negative
I am at a complete loss- Can I have Cushing’s and these test come back negative?

 

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Melissa, Pituitary Bio

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golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

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Emily, Undiagnosed Bio

2 Comments

undiagnosed2

 

Hello, my name is Emily. A few months ago I was “diagnosed” with Cushings Syndrome as I had very high levels of cortisol.

I was sent to a ENDO Dr. & most tests came back saying I have it. But two tests, like the salvia midnight test said the high cortisol dropped a little bit at night which indicates I don’t have it, and the surpression pill test also dropped my cortisol level. But the 24hr urine test and regular blood tests at 8am (done severl times, on different days), says I have extremely high levels of cortisol, which “stumped” the Dr. In the same sentence he told me I have Cushings (on paper), but by looking at me, I don’t have it at all and would be the first case he’s ever seen that had Syndrome but don’t have the physical signs (eg., I don’t have purple stretch marks but have some white stretch marks on legs, I’m average slim build but just recently have gained some* belly midsection weight that I can’t loose, I have only some* facial chin hairs but not a lot yet).

I do have most other symptoms of Cushings including changes in menstrual cycles, night sweats, fatigue, anxiety for no reason and never had problem with that before, have fractured two ribs easily in the last year, weak muscles at times etc. In my initial blood work, it also showed I had no estrogen which the ENDO Dr. didn’t investigate.

My last phone call with ENDO; he basically said it appears I have it on paper, but not by looking at me and therefore his conclusion is I don’t have it, and nothing can be done at this time.

Have any of you on here experienced anything like this? I’m getting a second opinion at the Stanford Hosptial in the Bay Area of California, and driving a good 4 hours to get there. Hoping I get better results.

Also…I’m not a heavy drinker, don’t smoke, never had a problem in past of depression which can also lead to Cushings. I’m 33 years old and although usually healthy, I’ve been experiencing these symptoms for maybe 2 years?? Not as persistent until recently though. What got me to go see a general practioner to begin with was no menstrual cycle at all, or very irregular, nausea at times, night sweats, loosing some hair, breaking out on face, fatigue.

Any help or anyone that went through something similar & can help in knowing what to do, will be greatly appreciated.

Thank you!

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