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Kimberly N (Bedrock Mama), Undiagnosed Bio

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For over theee years I’ve had 10-30 anxiety type attack’s a day. I break into a sweat, turn bright red and my heart races. These attacks happen immediately after I am anxious about something so I was always skeptical when people called them hot flashes.

I have a cyst on my pineal gland.

I’ve put on 30 pounds although I eat extremely healthy with limited sugar, flour or dairy. My cholesterol is up to 245. My libido is completely dead which is not the norm at all. I have a shawl of fat on my back with a fat bump on the back of my neck. My stomach is so big I’m embarrassed to go out. My legs have started getting fat on them which never happens.

I’m hyper sensitive to smoke and chemicals and mold.  I get incapacitating headaches frequently. I take feoricet, ice and have to go to sleep. I have no desire to exercise even though I grew up playing the tennis circuit. I have huge difficulty concentrating. I cannot remember even the simplest numbers. I feel like my vision is getting worse even though I wear glasses all the time.

I’m not the happy, gregarious person I once was and I rarely go out anymore. I want my life back.

I live in N.J.  if anyone knows of a Dr who might be able to help me I would be most appreciative. I wish you all good health. ❤

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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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Deanne (DeeR), Suspected Cushing’s

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undiagnosed3

 

Please help suspected cushings. I have chance to go see.Dr f. And Dont want to waste the opportunity.

I am 45 and a chronic pain patient from a drunk neuro surgeon removing my first ribs and scalene muscles when I was mid twentys. He injected me with about 20 cortisone shots in a year trying to cover his mistakes. Seveve hot flashes and mood swings began. Then can ovarian cysts that would burst. Finally contolled by 1/50 birth contol pills.

2003 Prior to loss of insurance and a divorce primary dr did pituitary scan after my complaints of increased pain every few months with my cycle, the hot flashes and my bearded lady feature.

2005 or 2006 menstal cycles so bad can’t leave house because of amount of bleeding and muscle aches, extreme fatigue and weight gain. At this point too old for birth control pill and naughty me yep I smoke.

2007 they day hot flashes, weight gain because i.u.d.is at the end of its life cycle have it removed.

2008 pregnant hot flashes and breast feeding. Beautiful seven year old and I am sleeping through her childhood. Soooo sad. Memory is now awful and cognitive getting worse. Thought I had alzemers new primary says cushings and sad it was a relief not crazy and maybe can get better.

Not alot of tests vit d so low at 17, morning cortisol high , 24 hour fine. Acth ref range low was 6 mine 7.

I’m thinking adrenals. Need help making sure i am as ready as can be to see dr f. Do not want to waste my chance to get better.

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Mickey D (MickeyD), Adrenal Bio

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adrenal-location

I am now 65 years old. I was first diagnosed with Cushings Syndrome in 1995 after 2 years of weekly doctor office visits stating that “my blood tests came back ok, so it must not be anything serious”.

My blood pressure shot up to stroke levels daily, my hair was falling out, I gained about 8 lbs in 6 months, had the moon face, buffalo hump, etc.,etc..

Every possible test imaginable was done to find the problem except a CT scan. The CT scan I had (after 2 years) revealed that I indeed had a tumor on my adrenal. I went to surgery and had the tumor and adrenal removed.

In fact, if I may interject, I was the “guinea pig” for the Laparoscopic Adrenalectomy performed by the doctor who invented the procedure. I was subjected to hundreds of observations while I was in the hospital for 2 days by student doctors and other Endocrinologists who wanted to see the outcome of the new procedure. Anyway, I went home after the surgery, returned to work in a week and was told I would not have to worry about ever getting this again.

I have had problems of various natures since the surgery. They have not required surgery but have been very emotionally upsetting. I can not seem to lose weight no matter what I try and I have tried it all. I did lose about 50 lbs shortly after surgery but I am still overweight and cannot seem to get it off.

I know my age isn’t helping but I am very physically active even with my age. My middle section is fatty, my breasts are enornous which is not a family trait, and I had had a total hysterectomy in 1994 at the age of 46 and I suffer daily with extreme hot flashes and mood swings.

The hot flashes are affecting my life. I am miserable. I have talked with my doctor about the weight, hot flashes, irritability but he doesn’t think it is caused by the Cushings from before. I DO!!! I have not been to an Endocrinologist since I was diagnosed back in 1995 so I have not had my levels checked. I don’t know what to do. I’m starting to think like I did back in 1995, that this is all in my head and it’s my fault that I cannot get relief for these symptoms I still have. I do not have a OB/GYN because my old one retired.

So, I am hoping that there is someone who has advice for me . I didn’t know this resource was here but I sure am  glad I found you.

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Marian U (MaidM), Adrenal Bio

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HI!

I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012.  Before 2 years ago, I had never even heard of Cushings.  Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today.   Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years.  My goal is to help as many people as possible in battling this devastating disease.

I am so happy that I have a new chance at a real life! Feel free to contract me.  Below is a piece I wrote before surgery and my stats.

🙂 Marian

————————————-

My Experience with Cushing’s Syndrome

The changes came about gradually.  So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else.  I had become someone unrecognizable: the “Not Marian.”

One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference.  Individually, the changes I experienced were easily explained.  I was tired. I had nighttime hot flashes.  I gained weight. I was moody and forgetful.  My sight was blurry.  I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first.  One day, I forgot how to roll down my car windows.  I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.

I also noticed that I stopped getting compliments.  People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore.  I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get.  I had “hit” the proverbial “wall.”

It is easy to look in a mirror and only see a stylized version of yourself.  But, photos are more precise.  For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line.   They just didn’t look like me anymore.  I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.

My epiphany came in the form of the photos on my work identification cards, taken about three years apart.  Not only do I look like I have aged about ten years — I also look completely different.  My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow.  I look like a bad photo copy of my former self.

Now, I realize that how I look is a small part of who I am as a person.  However, it is also the part of me that everyone sees first.  I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror.  I was astonished at my reflection and cried.

A friend suggested that I just realize that this “Not Marian” is who I am now.  I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow.  I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables.  I exercised four or so times a week.  I went to a diet doctor.  I ate under 1200 calories a day.  I bought new clothes.  I got my nails done.  Despite these efforts, I only saw minor improvements in the way I looked and felt.  I still felt as though I was always wearing a rubber suit over my skin that covered my former self.

In many ways, the diagnosis of Cushing Syndrome was a relief.  Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease.   But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop

My initial inclination was to tell everyone.   I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have.   “It’s not really me!  It’s the Cushing’s.”  I tried it a couple of times with mixed results.

Mostly, people said that they had not noticed a significant change in the way I looked or behaved.  My closer friends were more tolerant, expressed concern, and asked questions.  The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments.  And though it was significant to me, the changes were not readily observable.  So, I will try not to talk about it.

I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such.  I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment.  I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation.  Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.

STATS

July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA.  Low ACTH. Referred to NIH.

Late July 2010:  CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)

Sep 2010: NIH testing.

Nov 2010:  NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.

Dec 2010 – April 2011:  Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.

April 2012:  Follow up testing at NIH.  Cortisol is high.  CT of adrenal tumor is stable.

June 2012.  Second cortisol at NIH is high.  Diagnosis cyclical Cushings.  Will not operate.  Note that I do not look like clinical Cushings, so that was part of the problem.

July 2012: Bone density loss of 25% in three years confirmed through Kaiser.  I happened to luckily have had a previous bone scan so that they could compare.  The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.

Aug 6, 2012: Referred for surgery on Aug 27.

Aug 26, 2012: Enter NIH.  Surgery postponed but I can’t leave because of the testing!

Aug 29, 2012.  Surgery!  The surgery itself was easy.

Sep 2, 2012:  Left NIH

Returned to work half days Sept 4 and full time Sep 10.

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