And It's About Time There Was Some Support For Cushing's!
Believe yourself. When you don't feel like yourself. When your mood and aspirations are different. When you body changes and you no longer feel like you're inside the same skin. Believe yourself. Believe yourself. When the Doctors say you are just depressed, but you don't feel the same sort of depression you've felt before.....believe.
It all started three years ago. I was about 120 lbs. Having moved back home to pay off some debts I was living with my mother and I began putting on weight. My eating habits had not changed drastically but I no longer walked everywhere so I attributed it to that. I was no longer excited about all the creative aspirations I once had. In fact I was lacking any creative drive whatsoever. All these are symptoms of depression. I figured I was just depressed. But it was unlike any depression I had ever had. Previously I had lows, but typically was much more of a manic person, this was just lethargy. The next year goes by with continued weight gain about 40 lbs worth and these awful stretch marks.I also started getting discharge in my breasts.
I started putting weight on in places I never had. I'm girl with an hour glass figure. The first place I put weight on is my butt. No longer. I started being a bit top heavy. Another year and I was finally out of the weight of debt. I was still down though and still having discharge. I had it checked out....."nothing"......."don't worry"...."it's normal". But at that point it wasn't a daily occurrence.
I was concerned and wanted to rule out anything medical so I went to a GP and told her my story. At this point I was about 160. I had some thyroid history in my family so I just wanted to check it out. The Dr. took one look at me and my history and said I was depressed. She said, "We can run some labs but I think you're just depressed. We'll put you on Prozac and that might even aid with the weight loss." Tests came back fine although I found out later I had a high WBC and Platelets.
I took the Prozac but it made me nauseous....so I stopped. I was also upset because I felt like she never even listened to me. I felt like she decided I was depressed within the first two minutes. Of course I'm depressed! My body is changing in front of me and there doesn't seem to be anything I can do. And I know what I'm like when I'm depressed and this wasn't it. This was a complete change of personality and ambition. I'm a very passionate person and all the passion faded. But she said the tests came back fine, so i had to believe her. But it still didn't stop my suspicions. That it wasn't all in my head, or mental state.
I decided it was change of scenery that was necessary. I picked up and moved across the country. I was maintaining my weight. Couldn't seem to loose with exercise and diet, but at least maintaining. At this point I was about 170. This is the point when I started noticing the numbness. It would come and go. But still kind of freaked me out. I moved out with my best friend and was looking forward to good times. Well the job market wasn't what it should have been. So I had to come back three months later and regroup. Decided to move again this time to NY. I had an opportunity. So I moved to NY in FEB.
Determined to actively change my outlook I focused on a getting a job. Well the job market everywhere is bad, but I landed enough temp work to be ok. I moved here weighing about 175. I did notice that walking around seemed to be lot more difficult. The muscles at the front of my shins were hurting. Also my arm muscles seemed to be weakening. At this point there was breast discharge possible everyday. This is not how my body ever used to be, but the gyno said discharge was normal. Then I also noticed gray hairs. I'm only 26 and there aren't supposed to be this many gray hairs all at once. It seemed that no matter what I did I was having less and less energy and getting around was more and more difficult. Then I noticed a "rash" My skin is turning red everywhere. One weekend I'm very very swollen. I can't see my ankles anymore. I'm very scared. Then it starts to change. It's no longer just in my lower legs it's moving to my chin and my mid-section. I go to the Dr. All the tests are normal except for a very very very very high cholesterol count. I take an over the counter diuretic because it seems to be the only thing that helps. He seems to think it is just an infection and will go away but I call him two days later because it is much worse. I go in first thing after the weekend and take more tests. I'm on the diuretic though so it may have affected the tests. He doesn't have any answers and refers me to an endo. At this point all that helps is the cool bath and the diuretic. I'm swelling beyond belief. During the course of that month I gained another ten -15 lbs. to put me at 195-200 depending on the time of day.
I finally went to the endo and I felt neurotic until she saw my stretch marks. And the fact that my stomach is balloon now. She took me off the diuretic and consequently in the two weeks between my visits I swelled anywhere between two inches in my bust and four inches in my mid-section within 12 hours. My hair seems to be thinning and what isn't thinning is graying. My skin is breaking out and very very oily. and I've noticed facial hair that I never had issues with before. My hand is numb about half the time and getting up from the ground is very dfificult. I'm scared and tired. And ready to have things figured out.
I met with my endo for the results to the 24hr urine test and she said my cortisol was only slightly elevated. She was going to do the low dose dex test but I was pretty adamant about how I wanted to get things resolved. I brought in pictures and mentioned Cushings. She seemed to think that it is indicated but that this next test would determine it. I'm thankful that she seems to believe me. But frustrated with how long each of the tests seem to take to get back. Another frustrating thing is that my cholesterol did not improve, though I was very strict about what I was eating. In the last month my bad cholesterol increased from 176 to 217!!!
Hopefully things will get squared away soon.
Most likely pituitary. MRI showed enlarged pit gland.
08/03 Enlarged Pituitary Gland shown in MRI but unable to "see" the tumor
10/03 Diagnosed with Cushing's Disease
Testing continuing to locate the tumor.
When my journey began I was 23, and at 5’3” a size four and about 115 lbs. After years of doctors telling me that I was fat and depressed, that Prozac was the answer, I am finally healing. Six months ago I had pituitary neurosurgery for Cushing’s disease.
It took doctor upon doctor to NOT diagnose me. Had I not trusted my instincts and not kept fighting I may never have found a cure.
It took four years, seven doctors, one hundred pounds, ten dress sizes and almost thousands of dollars in credit card debt from being unemployed or out of network doctors, before I got diagnosed. Never mind my sinus headaches, horrendous weight gain and blurry vision. Never mind the embarrassing symptoms when your hormones are up in arms. Never mind the constant defending I had to endure. Why did I have to prove that I was sick? The more I documented the more they looked at me as if I was a hypochondriac.
It was easy for me to know the difference because I was always such an active person. My diet and exercise had not changed, yet I was gaining weight and losing muscle tone. Suddenly this girl who had never struggled with her weight in her life now looked the dough girl. Suddenly this energetic hopeful young woman no longer had any sort of confidence or certainty about who she was. The changes I experienced not only transformed my outward appearance but also changed my hormones and emotional levels so that rather than feeling highs and lows, everything dissipated into a lethargic blahblahblah.
Life definitely brings its tests and some days I feel like I’ll never get through this one. Between the ridiculous debt I incurred and with another seventy pounds to lose, I have lot of anger to get past about being ignored. I have a lot of anxiousness about never having the opportunity to just relax into my recovery, considering I haven’t stopped to breathe since my surgery. However, more than anything else, I have hope! Hope for what tomorrow can bring. Hope and confidence in my own ability to determine what was wrong and get it fixed. (I enlisted myself in a study at the National Institutes of Health. Even my endocrinologist was impressed with the fervor and intellect I brought to my own diagnosis and treatment.) The reassurance it brought to me about my instincts is priceless. Trust yourself. Persevere.
The tumor was 15mm, about the size of a dime on a gland the size of a peanut, (and the first neurosurgeon and neuroradiologist didn’t see it)! Some days are good, some bad. I long for my old body back. I want the body that could jump and dance. That doesn’t have to plan how to get up stairs or up from the floor. It’s slow-going but now finally after nine months, I see my face again. I can run again. I recognize myself. My pituitary gland is producing a little cortisol on its own. And best of all, my silliness and excitement is back.
Recovery doesn’t come over night. I do get stressed out a lot easier than before. I’m peaking out from the debts and the poor self-image and living again. The first four months were very rough. The last five have brought a lot more joy. The aches haven’t stopped but I’m so ready to be that girl again that I push myself. And everyday I realize I’m lucky to be alive. I’m lucky to be part of and contributing to the world I live in.
I’m working on a book about my experience and life in the hopes to reach others who don’t have the backbone to stand up for themselves. I am also training at the Institute for Integrative Nutrition to become a certified holistic health counselor. I hope to help others awaken the mind/body relationship and realize they already have all the information inside them. Armed with the knowledge of how to eat well, and put themselves into a positive life affirming environment, they too have the ability to be lead a consciously healthy life. You must know yourself in order to be healed. Emotionally and physically.
Pituitary Surgery January 1, 2004 for a 15mm ACTH-producing Macroadenoma
Recovery steady and on track....
Total weight loss at 9 months: 40 lb.
Total inches in circumference lost: 7.5
