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Dana, Undiagnosed Bio

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Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.

But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).

My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.

Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.

I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.

 

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Ren, Undiagnosed Bio

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Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

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