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Jennifer (jennifer), Undiagnosed Bio

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i am not sure that i have cushings yet, as i have just made my first appointment to discuss this with my dr.

I first noticed a small hump on my back about a year ago, but just assumed it was poor posture. (yes, i tend to slouch a lot).But, i have been gaining weight steadily, despite weight watchers, low carb diets, trying to exercise regularly (difficult when you are so tired you can hardly get off the couch) (i assumed this was due to depression). i’ve gained about 40 pounds over the past  year. I realize this doesnt sound like a lot , when some people with this disease gain that in a couple of months, but ive always been able to lose really easily.

I dont have stretch marks either, but i have so many other side effects listed (the buffalo hump it seems distinguishes this from a lot of other things. im really scared that ill have this disease, but on the other hand, at least i’d know what is happening to me. I just cant get a hold on my own body. its so awful.

I dont know who to ask, but is there any other disease that has similar symptoms AND a hump?

Voices From the Past: Jane (tiggy2166), Undiagnosed Bio

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Hello all,

I’ve been looking at this board for a little while as my 17 year old daughter developed a buffalo hump last November. She’s not overweight at all but does carry a lot more weight than the rest of our family around her middle and chest. She’s a different build entirely. Her arms, legs and hips are relatively skinny in comparison to her mid section, though she does have very long legs so perhaps that’s natural too.  She’s tried to tone up but the weight does not come off easily.

The hump looks weird! It sticks out a lot. Her neck used to be flat/straight down. I’ve looked at old photos to compare.

I have 3 other children, a 21 year old son who recently discovered he has fused cervical vertebrae in his neck which has been the source of his pain for the past few years (there since birth apparently), a 14 year old daughter who is healthy and a 12 year old son who was diagnosed with Leukaemia last August (he’s doing very well)

My daughter’s been referred to a plastic surgeon for hump removal since it causes her pain and looks ugly. At first we were told it was a lipoma, nothing to worry about, but the plastic surgeon wanted to check with a senior doctor since it was not just a lipoma but a buffalo hump. I’m waiting for an appointment to hear the outcome of her enquiry to the senior doctor but I spoke to her secretary the other day and apparently they are not worried about it. An MRI has shown that it is indeed a fatty lump.

She’s had no blood tests or any tests at all. She does not take any kind of steroid medication.

Her symptoms are:

the hump

daily headaches

severe anxiety

occasional exhaustion

occasional throbbing/aching in or around the hump

weight gain around her stomach/chest

 

She does not have:

thinning skin

stretch marks

excessive thirst

excessive hairyness

 

I’m worried since two of my other children have recently been diagnosed with quite rare conditions. Normally I would say the chances are that it’s a fattty lump that just happened to appear there, liposuction it off, job done. However the odds have not been in my favour this past year! What if she does have a tumour somewhere? that’s my worry and things are moving too slowly for my liking. Next appt with plastic surgeon is 24th April.

I will post some photos of her and maybe some of you can tell me what you think. I can’t see any fat pads at the front but I’m not entirely sure what I’m looking for.

I’ve made an appt with my GP for 21st March to ask him to refer her for tests.

Thanks for reading my bio!

Voices From the Past: Erin, Undiagnosed Bio

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Hi. My name is Erin and I’m 28 years old. The first time I ever heard of Cushing’s was a couple weeks ago while doing a search for hormonal imbalance. I’ll explain why later. I am currently doing a 24 hour urine cortisol test, and thought that in between peeing in the large container, I’d share what little story I have.ufc

I have always been a normal weight and healthy, well, up until about 5 years ago. I mean, obesity was NEVER a word that had to be used to describe my weight. I’m 5’8″ and lingered around 140 lbs my entire life. I was quite the drinker, too. I started gaining weight when I was about 22 or 23, and started taking Adderol to get the weight down, and it worked like a charm. (I am currently a recovering alcoholic and have been in recovery for over a year now.)

When I started trying to get sober, I noticed little things, but mainly the weight gain. I have always had larger hips and thighs and a smaller waist, so when I began to look 6 months pregnant, I thought it was odd (and embarrasing). I have bruised very easy every since I was a teenager, but in the past few years the bruises come easier and are quite large. My acne will just not quit, and I started sprouting these thick hairs on my face, chest, and abdomen. My face has ballooned out like a pumpkin, and I don’t hardly recognize myself anymore.

In May 2012 I had a miscarriage at 12 weeks. During the pregnancy I started getting these purple stretch marks all over my thighs and hips, and since I had neve been pregnant before, decided this was normal. Before then I was having trouble getting pregnant, but just chalked it up to bad timing. After the miscarriage, I noticed my menstrual cycles were different. They had shortened from 26-27 days to 22 days, and just didn’t seem right. I started seeing my gynecologist every month, but kept getting dismissed because it hadn’t been a full year since the loss, and my hormones were probably still imbalanced. I did get them to test for PCOS, and everything came back normal, including an ultrasound, which just made me seem crazy.  I switched gyns and eventually had a hormonal blood test, which revealed very low estrogen and progesterone, and I was referred to a fertility specialist. Another blood test there revealed my ovaries are not responding very well and not secreating enough of the AMH hormone.

About a month and a half ago I decided to battle the bulge, and joined a gym and changed my diet. After 2 weeks of cardio and strenth training almost every day, I hadn’t lost a pound. Then at week 3, I finally noticed a 2 pound weight loss, but that’s when the knee pain started. For no reason at all, my knees became VERY sore, swollen, and were bruising from the inside of the joint. I saw an orthopedic who couldn’t find any evidence of injury, gave me a cortisone shot in each knee, and sent me on my way. I should also mention that a week before that I had a cortisone injection in my back for a herniated disc that was causing sciatic nerve pain.

A few days after the last set of injections in my knees, I started feeling very ill and run down. I had also just missed a period for the first time in my reproductive history, and after a negative blood pregnancy test, was told my hormones were too low for my period to start on its own. I thought I was feeling under the weather because of the missed period, so that’s when I started looking up hormonal imbalances online. When I came across the word Cushing’s, I couldn’t stop reading about it. I thought, oh my god, these people are me! They look like me! Thinking back over the years, all of these individual symptoms could be explained away due to stress, inactivity, lifestyle change, etc. But collectively, I started to see the bigger picture.

So, I am currently testing with my PCP. I am selfishly hoping that I get a quick diagnosis, or if it isn’t Cushing’s, that they find some other reason for all of these symptoms. But from what I’ve read this is going to be a long process.

Dana (abnormalaties), Adrenal Bio

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im a 45 yr old female been feeling sick for 5-6 years. like i got flu all the time,real big and fat i am,aching wrists ,knees,SLEEPY always.anxiety ridden….. fatty deposits on collarbone.adrenal mass found in december,

was sent to surgeon and told if its a functioning tumor it mst come out-just got back from my supression test. results in a week.will be a long week…but i pray it can be fixed if its cushings or whatever it is.. God bless.

Genevieve (JenNYC), Undiagnosed Bio

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to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Debbie (flawdnotclawd), Steroid-Induced Bio

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I am a 55 yr. old female recently diagnosed with Cushing’s.

Previous diagnoses included: diabetes, HTN, asthma, Chronic Fatigue, Fibromyalgia, high triglyc/choles., IBS. Still in process of testing to determine cause. Had multiple steroid epidurals in past few years. Have had symptoms for over a year.

Doctors misdiagnosed Cushing’s as Chronic Fatigue, Fibromyalgia, anxiety, depression, hypochondria. So fed up with arrogant judgmental doctors.

Have a great endo now who diagnosed Cushings and doesn’t treat me like I’m nuts.

Cheryl D (tigereye2010), Pituitary Bio

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I am a 46 year old female who was diagnosed with Cushings Disease in December of 2009.

In May of 2010 I had my first surgery to remove the Pitutitary tumor.  It has been two and a half years and still tumor free.

I have other health issues due to the Cushings.  I am a mother of two children and four beautiful grandchildren.

My husband has been wonderful through all this and so has my family.

Gail S, Pituitary Bio

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After constant wondering for over two years, I was sent to see an Endocrinologist about my weight. Numerous tests and an MRI, I was diagnosed with Cushing’s Disease.

I am 2 months post pituitary operations and things are lookings up.

Heres to a road to recovery! 🙂

See my full story here: www.mylifeasacushie.blogspot.ca

Sarah (Sarah), Pituitary Bio

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I was diagnosed with Cushing’s Disease January 2011. The doctors suspect I was suffering from it for at least 2 years prior to diagnosis.

I originaly thought I was just losing weight and having skin problems due to stress and getting older – even though I was still in my mid-late twenties.

A family friend and nurse told my mom one day that she thought I had Cushings and encouraged my mom to get me to look into it. Thank goodness I did. I had honestly nearly given up because I was so ashamed to go to doctors who just told me I needed to work out more and eat less. I was making an effort to lose weight but nothing worked! I told my mom no at first but after a few phone calls of her crying and begging me to go I finally agreed. I sat down at my computer and googled symptoms and sure enough I fit almost every descriptor on the Cushings list.

It took a few months to get into a specialist but my family doctor rushed it. I was so lucky to have this doctor. She was actually just covering for my regular doctor but she was the first one to take me seriously and really investigate my concerns.

Now, two years and three pituitary surgeries later things are looking good! I am back to work and feeling better than I can remember feeling in a long time. I have kept a blog sporadically documenting my experiences with Cushings that I invite you to read for more details on my bio. I hope that my story can be an inspiration to those who are feeling hopeless. I often felt that way but tried to stay positive and believe that one day I would be cured and fingers crossed, it seems like I am 🙂

It is possible to come out on top!! Best of luck to everyone 🙂

 

http://pushingthroughcushings.blogspot.ca

Candy (cjbritton), Undiagnosed Bio

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In seeing an endocrinologist about normalizing my thyroid levels (Hashimoto’s), he became suspicious of Cushing’s.

I was diagnosed with PCOS in 2006 with a suspected onset of 13-14. We’ve done one blood test that came back further pointing to Cushing’s along with the signs & symptoms (i.e. buffalo hump, moon face, sweating, ruddy complexion, etc…). I will be seeing another endocrinologist in the near future (current one is closing his practice & moving to the Middle East) to confirm a diagnosis of Cushing’s.

If I do have Cushing’s it has to be endogenous, as I do not take any steroid mediations that are known to cause exogenous Cushing’s. I take Nasonex periodically, but not any more than I absolutely have to & I’m told that is too small a dose to be a problem.

Wish me luck in getting answers.

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