| | Rare Disease | Pheo and Addisons?
have suffered for years with extreme fluctuation in blood pressure and hospitalized numerous times/14 days each. It has gone as high as 250/100 and as low as 57/40. I've been tested for Pheo (urine test) but only slightly elevated. However, I've done extensive research and that is not 100% proven test especially when the nurses don't do it correctly (keeping on ice)
I've had numerous scans done; the one location outside the hospital has shown a small "benign" tumor on my left adrenal gland on 5 occasions. In the hospital, they NEVER see anything??? I had a kidney stone almost 2 years ago and they SAW the "benign" tumor in my left adrenal gland.
My blood work, when I had what they believe (still not confirmed) Addison's crisis was off the wall. This happens every time I have an episode. For example, LOW: my DHEA is <15, Cortisol 1.0, Potassium, 3.4, D-Dimer .22, Creatine .54, Bilirubin .3, ALT 13, Creatine .54, ACTH 5, Protein 5.6, Calcium 8.1, Albumin 2.7, A/G Ratio 1.0, GFL 47, Aldosterone 2.1, Total protein 5.5; HIGH Glucose around 200 and Chloride 111.
When I had my last bad episode over a year ago, they put me on steroids. I gained 50 lbs (normally 135/5' 6") within two months! I had steroid rage and other health issues. I decided to slowly take myself off the steroids which I know I'm at great risk. I currently moved back to Boston and don't have a specialist.
If anyone can give me some answers and/or direction on what to do or recommend a specialist for these two complicated, hard to diagnose rare diseases I would greatly appreciate it! I'm at my wits end and afraid that at 47 that I'm going to have a stroke from my pressure going to high or Addisons crisis. Thank you in advance. Michelle