"...I cant hold back..."
Well, thanks to
@tealou Here blog here, I finally sat down and wrote a general letter to my current and future doctors to show what has been going on my entire life. Like the picture above says, so far the docs say this is all normal. Enjoy!
Dear Doctor,
I am writing to you before our appointment so that you don’t feel bombarded or ambushed with all of my information – it allows me to structure my thoughts and hopefully will help you see in black & white the weird journey I have been on in the last few years…
After a consult with a doctor in my hometown of Lewisville, and talking with several patients with the disorder, I have come to the conclusion that I might have Cushing’s Disorder.
I acknowledge how rare these disorders are. But I want to be healthy and I don’t know how to get through to you without appearing like I am in denial for a hidden donut stash… or something…. But I know you’re a good Doctor so here goes.
I have spent the last year on dexamphetamine after a diagnosis of ADHD, and after a year I do not think I actually have ADHD. There are a couple of reasons for this:
My ability to focus, and other “symptoms” of ADHD, eg anxiety, inattentiveness, insomnia etc, should not get worse over time. As an adult, it should get better. My ability to function is actually getting worse as time passes.
When initially prescribed Adderall, my anxiety and other anxiety-related symptoms disappeared. The effects wore off within a few weeks. I lost no weight on Adderall and actually gained 20lbs in the year I have been on it.
I received a formal diagnosis of ADHD from Dr Launis and was prescribed dexamphetamine. Again, I initially functioned well. The Dex helped with my fatigue and anxiety and I felt well for a month or so.
After a month or so of taking dexamphetamine, my body quite literally felt like it was “shutting down”. I had debilitating joint & muscle pain to the point where I could not move. I could not stay awake.
I looked on some ADHD support forums online, assuming that it was a side effect and tried tweaking my dex dose, on the assumption that it was a “crash” from metabolising the drugs too quickly. Nothing helped.
It all led back to Cortisol. Stimulants don’t help that at all. So now, I want you to consider this:
Some background:
I was 6lbs 12oz at birth. My mother was a petite 5’5 but would starve herself to be a size 10-12, until she had children. She was told she would never have children and went years with out having a period. Her middle ballooned after her second child, started loosing her hair, gaining weight in her middle only, growing facial hair, and her joints and muscles ached all the time. My father is of normal weight and 5’10 from what I know. My mother and grandmother also have a history of heart problems and both died in their early 50’s. My mother did not have high cholesterol, but had thin skin, hard to heal, diabetes, thyroid problems and sleep problems. She would have trouble sleeping at night and would stay up late trying to sleep while fighting sleep during the day. I was a skinny child & considered “underweight” until puberty.
I then steadily gained weight from the age of 8 to about 150lbs by the age of 11.
I now weigh 310 lbs
I eat an average of 1500-1800 calories a day, often less. I was active in ROTC in high school, but it got harder and harder to participate. I even trained with the Navy training to get in, but by belly would not go down. In fact, I gained weight during that time even though I was on a strict diet and exercise regiment. Since then, when I have the energy, I exercise. I have a desk job but it is only recent that I have become less active (mostly because of health problems but also because I work long hours). But I am still moderately active.
I wanted to produce a timeline to try and paint a picture of why I am so frustrated. The timeline consists of the major events, but over the years I have had other, general symptoms (listed underneath the timeline) that have been explained away by health professionals over time, to the point where my faith in the medical system is non-existent.
At the insistence of my friends and family I have decided to grow a pair and seek diagnosis for what I suspect. I suspect I have Cushing’s, or a form of Adrenal disorder, that is affecting the thyroid, and is made worse by stress.
TIMELINE
Birth-2000, culminating at Age 9 – Extreme, unexplained fatigue & general ill health. Could not move due to muscle & bone pain. Family GP and parents wouldn't listen to me, said it was growing pains.
1989-1999- Was told I had behavior problems early on. Had trouble focusing, would get picked on for being shy, and later for being fat. Would blow up when fed up, at seemingly random times. Always was a sad child. Anger and sad emotional problems persist through adulthood.
1993-present – Unexplained rashes that would ‘flare up’. Originally thought as some sort of allergy. To this day, I have to wash new clothes before I wear them, and usually have hydrocortozone next to my bed. Bumps all over my arms that turn purple when my stretch marks do. During the day, they are usually pink to skin tone, but when I feel hyper or high they turn purple: both stretch marks and bumps. Clear, skintone bumps also persist. Usually filled with only clear liquid.
1993-Present– Balance issues where I would be standing, and just fall over. Same time period, I started getting bad colds that would turn into chest colds, and later bronchitis. To this day, it happens every time I get a head cold. Skin has hard time healing any wounds and acne is bad and stays bad. Night sweats persistent nearly every night despite the cool temps my mother and I keep in our homes. She had night sweats too.
1993-1999- Would wake up in the middle of the night, my heart pounding, chest hurting, not being able to breathe. Would sit on the floor and rock until it stopped or I had to get ready for school.
1994-1999 – Missed at least a week of school each year due to chest colds and bad mussel pains. Continued to gain weight. Would ride my bicycle to school each day, despite pains.
1999 Officially diagnosed with Asthma. Was prescribed albutrol and it helps some, but the “panic attacks” still persist. Best described then as, “my lungs stop working on their own and I feel frightened and feel like I have to remember just to breathe.” Due to this, I was prescribed Advair, but still used my rescue inhaler 2x a day or more.
2000-2004 First job at Wal-Mart as a cart pusher. Worked on the lot for 2.5 years, then worked as a grocery stocker pulling pallets. Eventually, I had to move up front as a cashier when the pain got too much to pull pallets around. During this time, I trained with the Navy and would be exhausted each time I would train with them. Started throwing up breakfast each and every morning, uncontrollable diarrhea started and was random no matter what I ate. Was RXed prilosec and then Prevacid for GURD. Steadily gained weight. Lost medical insurance in 2002 after I graduated and moved out, stopped taking Advair. Was engaged, but emotional stress split us up. Met my wife in 2004 after the Navy refused to accept me at 240lbs. Red Cross refused to take my blood donations due to “ Hepatitis” readings in the blood. Was told this was a fatty liver. Hair started to thin during this time also, but has sped up in recent years.
2005- Got insurance through wife’s work. Seen by Dr. Maxwell for GURD and diarrhea. Orders colonoscopy. Comes back normal. Diarrhea persists randomly.
2005-2007 – Started seeing Christian Community Action Doctors, noticed my depression and pains. RXed Celexa, but had no effect. Weight was steady, if not fluctuating. Was told I had high blood glucose, and high blood pressure. Hurt my back from moving, all joints pop at this point, I feel grinding in my knees. Heart palpitations and late nights do not stop. Sleep is getting worse. Have trouble staying awake while driving my school bus. Considered looking into narcolepsy.
2008 – Dr. Lanius starts treating me for asthma. RXs Qvar. Still no Insurance. Focusing on work becomes harder and harder.
2009 – Dr. Lanius RXs Adderall due to job incident. Adderall works for a short time, but stops working. Too afraid to say anything, I continue taking it. July 3rd, 2009, at 11:30 pm admitted to ER for severe chest pains and heart palpitations. EKG said heart was healthy and pain only subsided when morphine was administered. Was wired until then. Admitted to hospital for further tests. Dr in hospital suggested I had Cushing’s and did a CT scan. CT showed nothing, but Dr was unconvinced that something wasn't there. Suggested I follow up with an Endo.
2009-2010 – Weight gain continues despite diet, exercise, and meds. Pain gets worse, fatigue gets worse, night palpitations and “high” feelings persist and worsen. Sensitivity to cold increases. Libido decreases. Hair loss is rapid. Constantly second guessing what people say. Depression worsens. Dr. Lanius doesn't listen to my concerns.
2010- Same chest pains and heart palpitations that sent me to ER happens again. Start cortisol saliva tests on my own, See Dr. Auchus and he allows a 24 UFC, does not believe my symptoms. Finally see pattern in diarrhea. Diarrhea happens when I am sore, achy, and tired. When I feel like my body is shutting down. Normal/Constipated stool when I feel high and wired.
OTHER ONGOING/GENERAL CONDITIONS
- frequent chest infections when I get a cold
- Slow healing wounds
- Stretch marks that are red/purple especially at night
- Tingling/numbness in hands & feet
- Grey and thinning hair
- Reflux/Gastro pain/symptoms
- Carpal Tunnel symptoms in wrist and fingers.
- Easy bruising/blistering. Get boils & large pimples on body
- Dental problems from an early age
- Nails breaking
- Jawline acne
-Low Libido
- Malaise
- Celexa has had limited effect. ADHD meds help with mood, focus, fatigue and wellbeing some of the time and if I take a day off when feeling unwell, usually cant
- Throughout university & other deadline-based activities, my “3 day crash” after it is over whereby I can’t move, have pain, and need to sleep.
My theory is, after years and years of trying to find an answer, that I have a pituitary mass that explains all the “weirdness”. It may be Cushing’s, it may be something else, but I believe that the problem lies in this area.
Whatever the final diagnosis is, I believe that it is also affecting thyroid. Thyroid makes big arms and at least explains the lack of “looking Cushoid”.
When I read the stories of people and their journeys to a diagnosis of Cushings, I kept seeing mine. Despite what Doctors have said over the years, when I look at the faces, and the subclavical fat, I see my own body. I may not be a classic, typical case, but all I want is to be taken seriously and not called fat & lazy, or a hypochondriac.
So, I have requested a 24 hour Cortisone at the time of this writing. Any other tests you can provide to make diagnosis easier will help.
So, hopefully you’ll see that I am being quite serious about finding a diagnosis and getting well. Because ultimately I am the one who has to live in my skin, and it sucks.
Feel free to call me to talk about this anytime, otherwise I will see during our appointment.
Regards,
The Weary Zebra
