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Meriam S (Jomisa03), Pituitary Bio

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The pituitary gland

The pituitary gland

 

My name is Meriam San Antonio, 52 years old from Fairfield, California. I have been married for 19 years and have three teenage children. I was sick for almost 7 months ( starting March 2013) and the doctors couldn’t figure out what is wrong with me. My symptoms were being bloated, had edema on my feet and legs, swollen all over, had a “moon face”, bruising on my hands, myopathy/neuropathy, aching nerves, bloated stomach (as if I was pregnant), double vision, and lost my ability to walk.

I have been in and out of the ER due to having a congested heart failure, urinary tract infection, colonitis. I suffered from acute depression and tried killing myself. My blood pressure and blood sugar was soaring so high and uncontrolled.

After a series of tests, I was finally diagnosed of having Cushing’s syndrome. A surgery was done on August 2013 to removed my pituitary gland at the left side of my brain.. I had to take an early retirement from work and currently on Social Security Disability.

Two years had past and I have recovered. I lost weight, my blood sugar and blood pressure were now on the normal range. It seems after the surgery, everything was back to normal. I can now walk on my own ( without the help of a cane, walker and wheel chair) but had to undergo a knee replacement as I fell many times on my knees due to nerve weakness. I had a rough time and had gone through a lot.

I stopped taking my PTU medication as told by my doctor as I am already “Cushing’s free”.

But my endocrinologist just informed me that the result of my thyroid test was high. She ordered me to take a “nuclear iodine test” next week. I am so worried that my Cushing’s will come back. I do not want to undergo such experience as I was so traumatized by it.

 

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Karen K, Undiagnosed Bio

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undiagnosed2

 

Hi, I’m Karen 51 yrs old, undiagnosed by a doctor, just realized all my crazy symptoms are related and have made an appointment with my doctor for next week.

I think it started in my Mid 30s with very bad acne, horrible migraines with throwing up, vertigo, high blood sugars, major depression, sleep apnea.

My symptoms over the last 12 years are hair loss on my scalp, weight gain no matter what I eat or how much I exercise all in my torso, buffalo hump and fat pads above clavicles, daytime exhaustion, insomnia, bloated feeling, edema in my legs and feet, tendonitis, arthritis and bone spurs, dehydration daily, sweating a lot during the day and at night, bruise easily, muscle weakness, depression, scary crazy mood swings with lots of screaming, no libido, red and white patchy tongue, high blood pressure and diabetes, my face gets red and hot like I’m blushing or have a bad sunburn, then goes back to normal looking, fat face, really bad heartburn everyday several times a day and before I go to bed I need to take antacids, it’s so bad I feel like I’m going to throw up. then theres the strange boil on my back that comes and goes, and the diverticulitis, and most recently a blocked salivary gland! also some back pain by my hump and side pain next to my left breast, I get so angry and I just want to cry all the time, it’s so frustrating, and I’m so so tired everyday.

I have seen doctors for most of these issues. I never thought they had anything to do with each other, I was sick a lot when I was a kid, I just thought I was someone that got sick a lot. Especially with the diabetes, I just assumed I was getting infections because of my weakened immune system and premature menopause.

I’m not sure when I got the hump but it’s in my wedding photo’s. Our 12 year anniversary is coming in January. My periods stopped right before I got married at 40, that’s also when I was diagnosed with diabetes, high blood pressure and high cholesterol, over the last 12 years my weight had gone up and down but mostly up 75 lbs. I eat better now than I ever have, plus there’s all the exercise everyday walking 3-5 miles a day on weekdays.

Recently I was switched to the U500 insulin, so my sugar readings have been great, finally after a few years of very high readings and feeling like crap, diarrhea and vomiting.

I’m so glad I found this website!

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Leeza, Undiagnosed Bio

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Hi everyone, my name is Leeza and I think I have Cushings Disease.

I have had blood tests that say high cortisol, low eosin, high lymphs, low vitamin d, I have diabetes type 2 but now I have low blood sugar.

I have done two 24hr urine tests over the years and both were normal so the doctor then didn’t repeat. I have most of the physical attributes except for stretch marks.

I see an endocrinologist called Dr Henley next week so hopefully I’ll find out more.

Wishing everyone all the best and hugs Leeza

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Leslie, Undiagnosed Bio

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A Golden Oldie

I have no diagnosis but have a number of questions.  I think for now I would like to read others experiences.

Update September 5, 2011

Hi,

I am wondering if the issues I am currently having may be related to Cushing’s.  So I am actually looking for more information, before I ask my doctor about testing.  I have always been in the short and fat catagory physically, however in the last few years I have gained a rediculous amount of weight all in my middle.  Recently my blood pressure has gone from running very low 110/70 on a high day to 152/108.  I am waiting for more test results, blood sugar, etc.    In the past I had a horrible reaction to a cortisone shot in my knee that resulted in stretch marks that appeared overnight and horrible itching and agitation and am wondering it this was a symptom related to cortisol levels in my system already being to high.

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In Memory: Liz Raftery

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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.’

Sharon, Undiagnosed Bio

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A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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Jean (Jinxie) Cushing’s and Acromegaly Bio

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This bio was originally posted 1/26/2008

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My Cushing’s and Acromegaly Odyssey

During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.

Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.

During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.

I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.

At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.

January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.

This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.

It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.

By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.

I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.

After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.

I am now 4 months post-op.

Click any thumbnail to view the larger image.

Before Cushing’s [Photographer: Jeanne’s family]

In the kitchen [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

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