John Moody’s Story

I was diagnosed with Ulcerative Colitis in the summer of 1998. I have always dealt with numerous bouts of infections since I was a child such as kidney and especially tonsilitis and strep throat. At the same time i was also diagnosed with mononucleosis. After I got over the initial bout with the colitis and supposedly the mono, I still didn’t feel well and was persistently fatigued and just generally felt ill and unhealthy. In 2000 I had my gallbladder taken out and for months afterward I spiraled downhill with weight loss, fatigue and just general ill health. In May of that year I was on the internet and came across Addison’s disease and reading the causes and symptoms was like reading a diary of my daily life. After further testing, it was determined I was hypopituitary, and my testosterone, adrenal function were both low and needed supplementation. After the initial replacement of both I felt dramatically better for a while as long as the colitis was kept under control. However it wasn’t long until I started having other problems again and the endo I was seeing was no help. I decided to get another opinion and went to another endo and as it turns out I had become hyperthyroid. The new endo had me undergo the radioactive ablation of the thyroid and started on synthroid as my thyroid began failing. I am now on 1.25mg of synthyroid per day. I have pain in my upper right abdomen under the ribcage and further around on the right flank that the doctors cannot diagnose. They have performed ultrasounds, CAT scans, and X-rays all to no avail. I take oral narcotic pain killers three or more times daily to handle the pain. I also take 7.5 mg of prednisone for the adrenal insufficiency every day although I think it needs to be 10 mg per day because I think I feel better at that dose. My primary doctor is very thorough with me and is stumped by the pain and fatigue. I also have a heart condition that causes my heart rate to be abnormally fast and sometimes it becomes tachycardic and the rate will run close to 200bpm. This will put me in the hospital to get it under control. I made the mistake of running out of my two heart meds one weekend and ended up in the ER with a heart rate out of control and proving that it isn’t a good idea not to take my meds as prescribed. My heart doctor says that the endocrine problems alone are enough to keep my entire body out of kilter. He is going to set me up to see his partner to have an ablation done of my heart to hopefully get me off one of the cardiac meds and prevent the tachycardic episodes. I will still probably have to take meds to control the fast heart rate for the rest of my life. AS it is right now I still suffer from severe fatigue that some days keeps me in bed all day long. I have night sweats, sores in my mouth, abdominal cramps, fevers of unknown origin, mildly elevated sed rates, and extreme muscle weakness in my arms and legs. If I try to run, I fall flat on my face as I don’t have the strenth and balance to maintain an upright postition. My health problems have cost me my last two jobs as i am just physically unable to consistantly perform up to an acceptable level either to myself or my employer. It is very frustrating. So my list of maladies is such–Adrenal Insufficiency, Hypogonadism, Hypothyroidism, Hypoituitarism, Ulcerative Colitis, GERD, Sclerosing Cholangitis, and Pain Syndrome of unknown origin. My list of prescription meds and supplements is as follows. Colazal, prednisone, nexium, potassium, oramorph, covera, nadolol, lexapro, diaudid, phenergan as needed, tigan as needed, colocort enema, androgel, synthroid, aspirin, calcium/magnesium supplement, DHEA, Vitamin C, and a Multi-Vitamin daily. I still suffer from such fatigue that some days I just spend the day in bed sleeping–not even getting up to eat, only to go the bathroom and right back to bed. The doctors still can’t find a reason for the pain in my right side/flank area, and the narcotics it takes to control the pain has steadily increased. If it gets much higher I am afraid it is going to affect my cognitive function and make me a hazard to myself and others especially driving or operating machinery. My health has cost me my last two jobs and I may have to try and get on disability to pay the bills. I told the PCP that if he can’t get me better soon, that will be a distinct possibility.