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Laura F, Undiagnosed Bio

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undiagnosed7

 

Hi. I am now 52 yrs old.

I’ve been gaining weight for about 3 1/2 yrs since having my thyroid removed due to a 25 yr old nodule that was calcified. My thyroid levels have always been good, before and after removal. There were A typical cells in the nodule, that’s why they advised removing the thyroid.

As I gain weight and have lumps of inflammation now over all of my body, all I have been told is to eat less and exercise more. Even though I have told my drs that I barely eat at all.

I have been through the cardiologist, rheumatologist, ent, gastroenterologist, pulmonologist, 2 gen practice drs and finally now an endocrinologist.

I still have the same symptoms; weight gain, headaches, abdominal distention, inflammation in ribs, feeling of breathlessness, buffalo hump, heart palpitations, acne, worsened vision, poor memory, insect bites take weeks to heal, teeth have moved leaving large gap, no armpit hair but facial hair instead, etc…

I have been waiting to see this endo for so long and she switches my levothyroxine (generic synthroid) to name brand synthroid plus gave me a paper to have many labs done. Day 4 of the synthroid, I woke up with hives. I took benadryl and it helped. Day 5 again hives but also feet swelled very bad. So I went back to the generic and those issues are gone.

Now i have to wait 2 months to have labs done and see endo again. I’m so upset and depressed. I feel like just doing the labs now and get a copy so that atleast I might have an answer. Waiting is frustrating. I keep telling these Dr’s that I’m not looking for something to be wrong with me, there is something wrong with me.

Whether it is adrenal/ pituitary or something else entirely, I don’t know. I feel like I am begging them to find out. All of my appointments with the specialists have been, come back in 2 months. WTH. This is very frustrating. I just want an answer. I will update if I ever get one. Best to all of you.

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Ryley (Sunshine), Possible Adrenal Bio

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golden-oldie

 

A Golden Oldie originally from Monday, November 17, 2008

I am currently in diagnosis – Finally got fed up and met with an endo. who is wonderful – she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do – go look up symptoms on line.

I have ALL of the sympoms for a Cushie – from the over emotional bit to the hump – Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don’t know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis – Hoping for the best!!
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Wendy, Pituitary Bio

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pituitary-gland

 

I was diagnosed in April 2016 with Cushing Disease caused by a pituitarty adenoma. I believe I have struggled with these syptoms for over a decade.

I had a goiter removed from my thyroid in 1997 and have had numours biopsys on other nodules on my thyriod over the years.

Fortunately, I changed doctors and walk into Dr. Levetan office in Chestnut Hill Hopital. The discovery of my high cotisal levels, many tests, MRIs and a cat scan confirmed my diagnonis. She gave me many answers to different symptoms I have been struggling with that seem to be worse by the day.

In May, I met with Dr. Salvatori at John Hopkins and I am scheduled for surgery 8/10/2016.

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Heather (HeatherKY), Pituitary Bio

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golden-oldie

 

From Monday, February 2, 2009

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

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Xchicagoan (xchicagoan), Undiagnosed Bio

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golden-oldie

 

From Thursday, March 12, 2009

Hi there!

I’m new to the site, and quite frankly, new to Cushing’s Syndrome itself. Over the years I have been having what seemed to be a lot of unrelated symptoms, which are now escalating in intensity. And like most of you I have been from doctor to doctor trying to figure out what’s going on, with no success. What I find really scary is I’m now seeing uncanny similarities to the mystery illness that took my mother’s life. Out of frustration I’ve turned to the Internet for answers; starting by putting in different combinations of symptoms in hopes I would stumbled on to something conclusive.

It might seem pretty logical now, but I have been in a fog both literally and figuratively, never really looking at the “big picture”, since some of my symptoms were vague and generalized. Edema, hair loss, uncontrollable weight gain, etc., etc., etc.. Put those symptoms in and you get hundreds of different possibilities. And truth be told I had come across Cushing’s before, but I wasn’t convinced that was my problem. However, while surfing last night it occurred to me to include some family health oddities into the mix to see what I could come up with. The first one I started with was Adrenal Hyperplasia, and Bingo! I hit sight after site that described me, my mother, (dead at 61), and my niece (dead at 9), and I knew this was it.

So People of the Boards, where do I go from here? Over the years I have gone to two different Endocrinologists seeking answers, but because I have Hashimoto’s (Thyroid) Disease, both were convinced there was nothing else wrong. I am incredibly tired of wasting my time with doctors who are completely dismissive, and don’t take the time to look any closer than a few symptoms.

I’m turning to you, hopefully for some answers. If anyone knows of a competent doctor in the Huntersville/Charlotte, North Carolina area familiar with Cushing‘s, would you please respond?

Thanks for being here,
Xchicagoan

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Barbara (2maro), Pituitary Bio

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golden-oldie

 

After being told for ten years that all of my “problems” would just go away if I “lost a little weight, I fell and hit my head on my fireplace hearth requiring several stitches.

When it was time for them to be removed, I went to my new Internal med Dr. to have that done and ask if I was having a reaction to one of my meds as my face seemed swollen.

She had seen one case of Cushings in it’s recovery phase, but had studied to help that patient. She suspect, tested and diagnosed with me with Cushings in December of 2001.

I spent the next few months searching the net, reading this site and going through testing to determine the origin of my disease, and ended up at MD Anderson with Dr. McCutcheon who removed the pituitary tumor transphenoidally.

Miraculously, over the next 9 months, I lost 100 pounds. I am no longer diabetic and did not have high blood pressure until 2008. I continued to lose until my Internal med doc actually told me I needed to put weight back on. By 2008, my pituitary function had pretty much ceased, and I am now on replacement hydrocortison, synthroid and human growth hormone. I turned 50 this year, and I feel very reborn.

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lyebye0, Pituitary Bio

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The pituitary gland

The pituitary gland

 

I am stuck in the same doctor visit, testing, referral, waiting cycle that many of us find ourselves in and in the meanwhile my symptoms continue to worsen. I suddenly have developed high blood pressure and have high serum glucose. My TSH is also recently elevated for the first time ever, despite my Hashimoto’s. An MRI revealed a pituitary tumor.

I did two midnight salivary tests with one coming back high (but only slightly above the utmost limit) and the other fell in the normal range. The doctor believes that this is something to be “watched.” This mentality is so frustrating. I am planning on getting a referral to a local neurosurgeon. I no longer care what doctors’ opinions are. I will find someone who knows more about this than a regular endocrinologist.

These boards and support groups are life saving. When I read over and over again other people’s stories that are the same as mine, I feel affirmed. And affirmation is hard to come by with this disease.

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