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Sarah, Cyclical Cushing’s Disease

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Hi! I’m Sarah, I’m 15 and I’m from Brazil.

Last year my parents started to suspect that I had Cushing’s and now I’m very close to a final diagnosis. I’ve been feeling incredibly lonely and depressed so I created this account cause I though that if there was any place I would feel understood and not alone it’s here!

I don’t really know how this works but I’m very happy and thankful that this website exists!

Thank you so much for reading my bio! It’s very nice to meet you! I’m sorry you have to be here too but I’m sure we’re all gonna get through this somehow 🙂

Sarah shared more of her story on the message boards at https://cushings.invisionzone.com/topic/55512-introducing-myself/

NOTE:  Sarah included her email address.  For privacy sake, I am not including it here but if you want it, please comment on this post so that I can share it with you.

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Annette S (Annette), Undiagnosed Bio

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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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Hadie (Lane), Undiagnosed Bio

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I have a huge buffalo hump with purple striations below it on my back.

No high cortisol problem found.

Frusterated and searching for possible other cause.

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In Memory of Missy Young ~ January 29, 2017

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in-memory

From Facebook:

 

missy-young

 

 

Missy had been a member of the online Cushing’s community for a long time and was well known to many.

More information as it becomes available.

Voices from the Past: Michele M (Michele), Adrenal Bio

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In December, 2018 I had my right adrenal gland and a pheochromocytoma removed.

Pathologist and endocrinologist diagnosed me with Cushings Disease.

I’ve also been Diabetic for 30 year.

Michele added her Helpful Doctor, Toni Murphy, to the Cushing’s MemberMap

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In Memory of Jenni Moore ~ January 25, 2016

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in-memory

 

A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard.

Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital.

The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland.

A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour.

Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”.

“Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court.

“She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily.

“We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.”

Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken.

Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s.

Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict.

“Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense.

“There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.”

After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.”

From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300

Chelsea, Undiagnosed Bio

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undiagnosed2

 

Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.

Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.

I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.

Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.

My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.

During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.

Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.

At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.

The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.

Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.

It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.

It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.

SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.

Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.

During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.

I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.

A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.

Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.

Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.

Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.

In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.

After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.

If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.

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Toni (Toni), Adrenal Bio

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adrenal-location

 

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

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

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

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

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Melissa B, Undiagnosed Daughters

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undiagnosed4

 

Hi everyone, I never imagined that I would wake up this morning to a life changing realization. I have spent years asking doctors what is happening to my child with no amswers. She was just 5 years old when she began to display cushings symptoms. At the time we repeatedly raised concerns with our pediatrician about her dramatic weight gain specifically in her belly area which made her appear pregnant and a once advanced child was regressing academically but the doctor’s constantly told me not to worry because all children develop differently they said. By the time she was 9 years old she began to display the following symptoms:

1. More weight gain focused in the belly area, face, and back (buffalo hump) with the belly area being firm and her face having a slightly swollen appearance.
2. Dark Black skin around her neck and areas such as in between legs and tummy area
3. Complete loss of hair on her head
4. Complete loss of eyelashes
5. Continued Slow learning in school
6. Depression and Anxiety
7. Lots of hair on arms, legs, and pubic area
8. Acne
9. Stretchmarks

She has been teased brutally in school and after having her go through many tests with no answers I ran across the possibility of her having cushings. Since we have seen two endocrinologists and both have run saliva and urine tests and have said she doesn’t have cushings, thyroid issues, diabetes and so on and so on.

Now my 8 year old is having the same symptoms as her sister. Today i noticed that she is now losing her hair too and I’m absolutely devastated. We need answers and I don’t know where else to turn.

If anyone out there is reading this and can help me get answers please I’m begging you to please reach out to me.

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Janice (Not So Cushie), Installment 4 of When Angels Knock

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Read Installment 1 here

Read Installment 2 here

Read Installment 3 here


4th installment of

WHEN ANGELS KNOCK

by

Janice Barrett

 

                        CHAPTER 2

     By late afternoon, I am taken out of lockdown and put into room 206, a semi-private room in the mental ward of the hospital. It looks like any other room in any hospital. I have no roommate and don’t like being isolated; it gives me more time to wonder about my wacko behaviour, speculating about whether mom’s disease is inherited. I have my mother’s colouring but my father’s features.  

     Alone in the room, alone in my thoughts, knowing what sent me other the edge, wondering what is happening to my life, I’m startled by a rap on the door. A nurse pokes her head into my room, “The Psychiatrist would like to see you. Follow me,” she says.

     I tag along watching her back not really paying attention to where I am going. There is no nameplate on the door we enter. It’s a stark office with a desk, three chairs and no personal family photographs, books or certificates. Nothing to signal ownership. A white-coated doctor sits behind a desk and looks at me, then drops his pen on his pad. He says thank you to the nurse who leaves, closing the door behind her. 

     He motions to the chair across from his desk. “Have a seat.”

     He is dark skinned and I wonder what nationality he is. Looking at his name badge doesn’t help. There is no way I can pronounce that name.

     “Do you have no any concerns?” he asks.

     I’m sure I must have looked at him shocked. Between his heavy accent and his words, I can’t understand what he’s said. And he’s looking at me like I’m slow, because he says again almost irritated, “Do you have no any concerns?”

     A few more now. They’re growing by the minute. Of course I’m concerned, I’m in a mental ward. Is that a question? How am I to answer that? It’s too general. I need a specific question; concerns about what? About my hospital stay, the room, the nurses, about my life and what part of it? 

     “I think I am paranoid schizophrenic like my mother.”

     There I did it. That’s a legitimate concern. Maybe it will be all right after all.

     “No any paranoid person would walk in my office and articulate that. They would try to hide it and that was the one thing you say first. So you no any paranoid.”

     Oh My God, I think I understand him. I don’t know if that makes things better or worse. And think of the eye doctor when he’s examining your eyes and asks better or worse and when it gets to that point where you just aren’t sure; that’s where I am. But his words are a relief. I’m not schizophrenic. I had worried for years that I would be like my mother. I trust what he says as truth. 

     The Psychiatrist picks up his pen again. “Do you know why you are here?”

     “I went crazy.”

     “You remember?”

     “Yes.”

     “What number medications did you take?”

     “Medications? I don’t know what you mean.”

     And then I recognize Bob’s gym bag on the corner of his desk. He stands up to place the bag between us on the desk.

     “You recognize this?” he asks.

     “Yes, it’s my husband Bob’s gym bag.”

     The Psychiatrist opens the bag. “Your husband find medications. Did you buy?”

     “Yes. They’re vitamin pills.”

      “They are 37 medications.” 

     When the vitamin pills are scattered between three bathrooms and kitchen cupboards, it doesn’t seem a lot until you see them dumped in one bag. Most of these bottles have been kicking around our house for years and are long expired, but getting rid of them is a hassle. You can’t flush them down the toilet or put them in the garbage. I always forget about them on hazardous waste day when I get rid of my paint cans.

     It’s a bag of failure, a multitude of good intentions, inspired by doctors on television, or magazine articles over the past ten years to eat right, exercise and supplement with vitamins. A reminder that, I can’t stick with any program.   

     The Psychiatrist stares into this bag without examining the bottles. He doesn’t even put his hand in the bag to move them around. He sits forward in his chair, looking at me, expecting me to come up with some revelation of some kind. They are frigging vitamin pills. What does he want from me? Yeah there are a bunch, but many of the newer bottles only have a few pills out of them, because when they make my stomach bloat, I stop taking them and try and find other ones which my body can tolerate. He looks at them as some kind of evidence; for what I can’t imagine.       

     “What number medications you take from the bag?”

     “I am not on any prescribed medications from my doctor. I took vitamin A, C, D, E, and the two homeopath liquids my Chiropractor gave me, a liver-detox and lymph something drops.”

     “Here 37 bottles your husband find and put in bag. You take each?”

     “No. Four vitamins and the homeopath stuff.”

     “How you are feeling now?”

     “There’s something physically wrong with me. It’s really serious. Whatever this thing is I have, it’s weird. I’m weak and my stomach bloats up huge.”

     The Psychiatrist lays his pen down, falling back into his chair.

     “I feel like I’m going to collapse, am weak all over and get tired out fast. My head is in a fog and I get confused with pressure in my head. Sometimes my words get mixed up and my eyes are gummy and blurry.”

     He stops looking at me, his eyes roaming the ceiling, his arms crossed. This Psychiatrist is just like my family doctor, Dr. Smith. Just like this Psychiatrist, Dr. Smith won’t even acknowledge that there’s something physically wrong with me. He looks at me like I’m fat and lazy. Like I won’t help myself by dieting and exercise.

     If it weren’t for Nurse Hill, I wouldn’t know what’s wrong with me. She’s the only one who listens and believes me.

                             ***   

     I’m at Dr. Smith’s office so much, I don’t even bother sorting through the magazines. I’ve read them all. Nurse Hill calls my name and takes me to a room she works out of.

     “Dr. Smith is on holidays so you will be seeing a locum doctor,” she says.

     I wonder what kind of a doctor that is; locum at least it isn’t “loco,” but I never question, it isn’t my nature.

     The nurse does the usual blood pressure and temperature.    

     “So how are you feeling?”

     “I’m really sick but I have so many weird symptoms.”

     “Like?” Nurse Hill takes out pen and paper and lists them as I speak. She believes what I’m telling her! I don’t have to convince her I’m sick. I can relax, reassured that she’ll help me.

     Without any hesitation, she says, “This sounds like Cushing’s Disease.”

     She taps diligently on her computer keyboard until the screen displays large letters reading: “Cushing’s Disease and Syndrome. “Yes, you have almost all the symptoms listed here. I’m going to recommend blood work be done to investigate this. The locum doctor will be in shortly,” and she leaves.

     I let out a big sigh. That it could be so easy after all these horrible months of suffering. Back and forth numerous times complaining about these same symptoms, with Dr. Smith dismissing them and me over and over again.

     I wait, hopeful. The locum doctor sits down. He examines me and questions me further and writes out a requisition form for me to take to the lab to have blood work done at eight AM, precisely.

     I’m the first one in line at the lab the next morning. It’s a quick procedure and I am out the door in no time and back home. I check many websites on the internet about Cushing’s disease. The more I read about it, the more certain I am I have it. These sites are describing what is happening to my body.

                            ***

     And now here I am stuck in this hospital when I need to follow up on the blood work results. 

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