And It's About Time There Was Some Support For Cushing's!
Cushing's Disease, My Story
A little Personal Information: I'm 43 years old, married, I don't have any children (not by choice) it just didn't happen. I have a mentally and physically handicapped foster adult. He was my aunts foster son and at her death he came to live with me.
A short summary of my life before Cushing's:
I have always been overweight, even as a child. Being overweight seemed to be a part of my family, especially on my mother's side. I have 1-brother, and 1-sister they are not small but have never had a true weight problem, such as I have. My Mother is overweight, and diabetic and my Dad is a little over weight. At some stage in their life all 4 of my grandparents were diagnosed with diabetes.
As a child, I seemed to be pretty healthy other than being overweight and I had a lot of tonsillitis and allergies. I had a tonsillectomy at the age of 13 or 14. I do remember my elbows, and knees being rough and dark, also my neck was dark. My mom would scrub and scrub but it never would come clean, and "Mom-ma's just don't believe us when we say it "ain't dirt Mom-ma" It has been interesting to learn this could be related to an endocrine problem.
In 1983 I learned that I had gallstones, I put surgery off until 1986 which at this time I had no choice because I had developed an infection. My gallbladder was removed (the old fashion way, long incision) I did just fine.
In 1987 I had bronchitis, went to my medical doctor and upon examination of the glands in my neck he found a lump in my thyroid region. He scheduled me for an ultra sound and some other type of scan that uses iodine. A few days later my doctor called to tell me I had a thyroid nodule and he was sending me to a surgeon, this scared me to death because I didn't even know what a thyroid was. Thank goodness I could see the same surgeon that did my gallbladder surgery, I had a lot of confidence in him. After seeing the surgeon and having a biopsy he decided to try to shrink the nodule with medication. I started taking synthroid at this time. After taking the synthroid for 6 months the nodule was not shrinking, I had several biopsies during this time. My doctor decided the nodule needed to come out, I had the surgery in which he removed the right side of my thyroid gland. The pathology report indicated a benign tumor. I have been on synthroid since then, my current dosage is 200mcg. Per day.
Around 1992 I had a kidney stone, I remember waking up in the middle of the night with pain in my back around the rib area that extended down to my lower abdomen. After I got out of bed I started throwing up and the pain got worse. I went to my local ER and was told I had a kidney stone. The urologist wanted to admit me but at that time I didn't have insurance so I opted to go home. It took 2 weeks for me to pass the stone.
In 1994 I went through a divorce after 15 years of marriage. The foster adult came to live with me, I married again within 1 year of getting a divorce, and my husband's mom died suddenly from a heart attack just 10 days before we were married. This was a hectic year and I started noticing that I was getting tired and feeling like I had no energy but I just chalked it up as everything I had been through.
From 1994 until around July 1999 - I often felt tired and didn't have much energy. During these years I started gaining weight and dieting was useless. I remember how I would get real weak, my body would shake inside, and my heart would beat very rapid. When I told my primary care physician about this he told me I had an Idiopathic nervous system disorder and that my body did not handle stress very well which was causing my blood sugar level to drop. I started eating a teaspoon of peanut butter when I had these episodes and wow, it was like a magic, the symptoms would vanish within a few minutes.
From July 1999 until around Feb. 2000 this is when I started noticing more symptoms.
I had gained so much weigh that I thought all of my symptoms were because of the weight gain. My blood pressure was high, I had rapid heart beat, shortness of breath, excessive swelling, and I would have episodes of sweating so bad that my hair would literally drip. I didn't want to mention any of this to my doctor because I thought he would say it was due to the weight gain.
I finally told my doctor about the shortness of breath because it was starting to scare me. He ordered an echo of my heart to check for heart valve leakage, the results were normal. The mystery to me was that all of my symptoms would come and go. It was like I would be fine one day and the next I could barely move. Sometimes the symptoms would last a day or two and sometimes a week. In the beginning it would usually be several weeks between having the episodes. As time progressed I started having more symptoms (*see list of symptoms at bottom) and the episodes had become more frequent. I made a decision to go to the doctor. I was swollen very bad and upon examination, he immediately said "we need to do some test because I think you have overactive adrenal glands or kidney failure." He ordered some blood work and 24 hour urine. On my way home from the doctor's office I kept thinking which one of these illnesses would be worse the kidney failure or the overactive adrenal glands. I knew neither one sounded very good but I didn't know much about adrenal glands. When I got home I searched my computer and for adrenal glands. I learned that if I had overactive adrenals this indicated that I either had Cushing's disease or some type of Cushing's syndrome.
Within a few days my doctor called to confirm that my diagnosis was over active adrenal glands and he had been in contact with the professor of endocrinology at a hospital here in Alabama. The endocrinologist's orders were for me to do a Dexamethasone suppression test. If the Dexamethasone suppression test indicated the pituitary as being the source of the high cortisol then he wanted me to have an MRI of the pituitary.
My Dexamethasone suppression test did indicate that the source of my Cushing's was pituitary. I had the MRI, it showed normal pituitary with no visual tumor. My local medical doctor went on with the plan to send me to the endocrinologist.
I saw a doctor called a "fellow" at first, when I went to the new clinic. (I think this is like an intern, he had enough schooling to be a medical doctor but still in training for the endocrinology field) he gave me an examination from my head to toe as if he was looking for a flea. When he finished my exam he said that he was going to bring the professor in to see me, along with another endocrinologist from another hospital who was there for a seminar. Before he left the room he said we will probably get some more test done to see what is going on but I will tell you that "I don't think you have Cushing's" and he asked me if I drank alcohol. I told him no I didn't drink at all, not even socially.
When the professor and other doctor came in my room they proceeded to look at my body for the ever so famous stretch marks which I didn't have. (I didn't get these until late in my disease and it's only a few small ones) then I was asked to stand up and squat down in the floor, I tried to do it with little avail. Then I was asked to walk up to a chair, put one foot in the chair and lift my body up in the chair. I told the doctor that I didn't know how on earth this would help in my diagnosis for Cushing's because I couldn't lift my body in such fashion even if my muscles were at the strongest point of my life. I never claimed to be a gymnast. The professor said he wanted me to have some lab test, he thought I might just have some hormonal imbalance but "he didn't suspect Cushing's." Before he left the room he asked me the same question the fellow had asked "If I drank alcohol" he took it a step further by saying if this is the problem we can help you with this and gave me a pat on my knee. I was about in tears at this point, knowing how much my body had changed, how bad I was feeling, and now this doctors thinks I'm a closet drinker and I don't drink at all.
I kept waiting to hear from my lab results and decided to call after several weeks of waiting. I was told the results were not available yet, I asked that the doctor call me. I ended up calling there once a week until 4 weeks had passed. My local medical doctor called me and asked me if I had heard from the endocrinologist. I explained what was going on and he said that I may want to consider going somewhere else because it was very important for me to get some help.
My local doctor got me an appointment with an endocrinologist at a teaching hospital in another state. Upon my first visit the endocrinologist was confident that I had Cushing's but wanted me to do some further testing to be sure the source was pituitary. During the course of test I had more dexamethazone suppression test, The CRH test, Petrosal Sinus Sampling (PSS), and the Octreo Tide scan. It was determined that the source of my Cushing's was indeed pituitary even though no tumor showed up on MRI.
It was a hard decision to have surgery not really believing that I had a tumor in my head. It would have made my decision so much easier if the tumor would have showed up on the MRI. However, I knew I was sick and getting weaker everyday and knew I had no choice but to trust the doctor's decision. I had transsphenoidal pituitary surgery on October 26, 2000. During my surgery the neurosurgeon did not find a tumor. My pituitary gland was covered with some type of tiny little infectious pockets. In an effort to achieve a cure the neurosurgeon decided to remove my entire pituitary gland in hopes that one of the tiny pockets was the tumor he was searching for. When the pathology report was in I was told there was no tumor cells found.
Remaining with Cushing's disease after total removal of my pituitary gland proved for sure that I had the ACTH producing tumor. Otherwise, I would not be producing any ACTH.
Second pituitary surgery was not an option in my case since the whole glad had already been removed. My doctor and I opted to try radiation. On May 10, 2001 I had Photon Knife Radio Surgery. This is a one shot high dose of fractionated radiation. This type of radiation can take several years to know if it will be successful.
While waiting to see if the radiation is going to be a success I am taking the drug Ketoconazole I was on 200 MG. every 12 hours to keep my cortisol levels in normal range. I have responded well to this drug. Recently my Ketoconazole dosage was lowered and my ACTH has started to decline slowly.
My next treatment option will be total removal of both adrenal glands, if and when I give up on the radiation working. My doctor has told me that if and when I'm ready we will discuss the adrenal surgery. I'm not ready to lose any more body parts just yet. I still have hope that I can keep my adrenal glands.
Having Cushing's disease has affected every aspect of my life and it's been a long hard road to travel. However, it has made me a stronger person and I have learned to appreciate the simple things in life.
As a Cushing's patient I realize how debilitating the disease is and how it has affected every aspect of my life. Remaining with residual Cushing's, I have pain, sleeplessness, weakness, etc. on a regular basis. Helping others gives me a sense of reasoning and helps me believe that having Cushing's it's not all in vain. Because of this, I have volunteered to be the representative for The Cushing's Understanding Support & Help Organization (CUSH) in Alabama and Tennessee. I was elected as treasurer of CUSH in November 2003. This non-profit organization was formed in an effort to promote Cushing's awareness, show support to those who are going through test, surgery, and recovery. I am proud to be a part of the CUSH organization.
"Uniting together we can make a difference"
Cathy (ChatiCat), CUSH Treasurer
Heart palpations, high blood pressure, diabetes, hair thinning on top of head, excess hair on body, extreme weakness with no energy, 100 lb. weight gain within 1 year, hump on back of neck, red face, oily skin and hair, extreme perspiring, severe edema, sleeplessness, thin skin, yeast infections, high white blood cell count, and mosquito's stopped biting me… I also remember how I would just sit in my chair for hours with no TV, stereo or anything and do nothing (not asleep). It wouldn't seem like very long but I would actually do this for 3 or 4 hours at time, on some days. My feet hurt and would burn on the bottom.