And It's About Time There Was Some Support For Cushing's!
My story actually starts about a year ago when I was diagnosed as hypothyroid with a large goiter on the left side. My endo at the time put me on Levoxyl to try and shrink the goiter and control the hypothyroidism. About three months later I returned to him and the goiter was gone, he cut my dosage in half and gave me instructions to come back and see him in January to do bloodwork to see if my levels were still ok.
In October I started feeling really good and began a pretty rigorous workout schedule. I was still eating healthy and losing weight at a pretty steady rate. I started sleeping less and less, but felt so good I didn't worry. I switched insurance companies at the end of the year and couldn't return to my endo.
Toward the end of January I realized that I was not sleeping hardly at all and had started to loose sensations and feelings throughout my body. I went to the emergency room because I was unable to sleep and unable to feel anything, I didn't feel hungry I didn't feel a need to go to the bathroom, I just felt "good" and hyper all the time. I knew that this wasn't right and thought maybe my medicine was too high of a dosage.
The emergency room doc took my explanation of symptoms as "manic" and decided to diagnose me with bi-polar disease. My family and close friends all knew this to be ridiculous, I am generally a very happy person and have never had what could be described as a "depressive" side. I was referred back to my primary care (also new now, due to insurance change) that I had never met. He was on vacation so I saw his physicians assistant instead. This man that I had never met had only the emergency room docs diagnosis to go on and was blind to my physical symptoms. He said that there was nothing wrong with my thyroid anymore it had "healed itself," and he took me off of the synthroid cold turkey. He gave me sleeping pills for the insomnia and wanted me to take other meds to "even me out"
At one point I asked if there could be something in my head causing these headaches and pressure on my head, and strange feelings like someone was injecting me with pain medication all the time and adjusting the dosage without any prior notice. He said "What, you think you have a tumor in your head?, Ok I will order a CAT scan just to make you feel better because there is nothing there." He didn't believe anything was physically wrong even though I told him of weakness in my legs, numbness, acne, loss of my period and weight gain.
All of the sudden I started being incredibly tired all the time and getting weaker and weaker in my legs. My symptoms started to mirror my Mom's who has MS and I told my suspicions to my doc. He said maybe I was right and he had had tunnel vision concerning the bi-polar thing and he would refer me to a neurologist, but first I had to see a psychiatrist. I agreed to do this and he agreed to push through my referral first think Monday morning. I left him a total of six messages Monday and Tuesday after a horrible weekend of increasing weakness and ability to stay awake.
I went and saw the psychiatrist on Tuesday and he told me that I did not to be seeing him I needed to see a neurologist.
Tuesday night after no response from my doctor I went to the ER where they began to do a series of tests. I had three MRIs in a 12 hour period and they found blood clots in the veins of my brain. I was admitted and put on heparin to stop my blood from clotting. Nobody could figure out where the clots were coming from and I had many specialists coming to see me. They performed so many tests on me and drew so much blood the nurses told me they had never seen such a complete work-up.
One of the specialists I got to see was Dr. Jonathan Insel, the endocrinologist I had an appointment to see in three months time. He was very curious about my case and decided to do a 24 hour urine test based solely on my acne and lack of period. After I was released and sent home he called me and said he suspected that I may have Cushing's, my cortisol level was over 750.
After a series of more tests including two more MRIs, CAT scan of my adrenals and a PSS, I was finally diagnosed with Pituitary Cushing's Disease. I have surgery scheduled for July 9th to remove the tumor my doctor ridiculed me about.
Through all of this I actually feel very fortunate and blessed! At my follow up visit with my Neurologist after the second MRV to check the status of my blood clots, it was decided that not only were they gone, but had never been there in the first place. Several Radiologists had reviewed the films and decided they had been misread. Since this was the only reason I was kept in the hospital for so long and was seen by Dr. Insel I probably would still be un-diagnosed at this point if they hadn't made this mistake.
I spent two months on Coumadin, getting my blood drawn weekly and seeing another specialist who tested for every possible blood disorder know to man that may cause you to clot and could find none. I am grateful to not have to be on blood thinners for the rest of my life and look forward to getting past surgery stop gaining weight and my "bear claw marks" on my sides, abdomen and breasts to start (hopefully) to fade.
I had my surgery on July 9, 2003 and was released after 5 days in the hospital. I am currently recovering at my Mom's house and doing pretty well. I had a mild adrenal crisis and had to be rushed to the emergency room two days after I was released, needing fluids and blood sugar. My endo upped my prednisone dosage and feels confident that the entire tumor is gone, since my cortisol levels were under 1. The past couple of days I have not even had a headache, which is a miracle to me, there hadn't been a day without headache for weeks before my surgery. As I gradually begin to get my strength back, I hope to get my life all back to "normal": normal weight, skin, hair, etc.. The hardest part has been being separated from my 4 year old, he has been passed around among friends and family for the past week and a half.
I originally posted my bio 4 years ago when I was diagnosed with Pituitary Cushings and had surgery. I cannot remember my old username/password so I am starting over here. :-)
I recently have had recurrence of cushings and am awaiting an appointment with the neurosurgeon so schedule a second surgery. It is hard to believe I am starting this all over again!
I have an 8 month old and am currently breastfeeding so my Endo cannot prescribe anything to help me feel somewhat normal in the meantime. I have to wean my baby before surgery anway, and am working on that.
My symptoms this time are similar to before, but at least this time, my doctor knew right away what was causing it and what to test for. I have been unable to loose weight, increased acne, weakness, fatigue, inability to sleep, headaches, disorientation, confusion, throat fullness (I know, that is a weird one, but I had it last time too), and mild depression/anxiety.
Anyone who has gone through two surgeries and wants to chat, please let me know.