And It's About Time There Was Some Support For Cushing's!
My husband was diagnosed with a pituitary tumor in early March. They believe it may be Cushing Disease. He has been to dr. after dr. trying to find out what is wrong and they keep giving him another medication to take, to no avail.
We are tired and frustrated and now our insurance company doesn't want to send us to OHSU. Instead they say to go to someone in Seattle where they already have providers.
Is it always this hard to diagnose and get treatment for this?
My husband, Peter, is 32 years old. He has been ill for at least the last 6 years. At first we thought it was because he had been in a car accident and had cronic low back pain. He kept gaining more and more weight. He tried diet after diet and nothing worked.
He had to sell a business he had had for 10 years because it was too physical. We moved from Tacoma, Washington to Bellingham, Washington so that he could go back to school and I could work and support the family. Peter continued to feel worse and gain more weight.
In 2005 he began going to the doctors and begging for help. We went to doctor after doctor only to be told that he needed to loose weight. At this point he weighed over 400 pounds and gaining. They believed it may be Cushing Disease. He has been to dr. after dr. trying to find out what is wrong and they keep giving him another medication to take, to no avail.
In February of 2006 we went to see an endocrinologist because his testosterone was low. They did a 24 hour urine cortisol and lots of blood at the most inconvienent times. They told him it was probably just mens menopause. No such luck!
Peter was diagnosed with a pituitary tumor in early March of 2006. The MRI showed a 1cm tumor. I began researching cushings and found this board. It was here I found out about Dr. Ludlam. We made an appointment and then fought our insurance company for every visit and even surgery. Our insurance considered him out of network and refused to pay for it. After appealing the appeal and working with my company's broker we our claim was approved. We had to do that for each visit and each test.
We did two 5 day workups, CSS, 32 hour workups, and all the other home testing that it took. He clearly had cushings disease. Peter had pituitary surgery at OHSU on June 22, 2006.
July he had an adrenal insuficiency and was in the local ER where they gave him the hydrocortisone he needed but not the pottasium. 5 days later I drove 6 hours to get him into OHSU to get him better. They are great and had him fixed in a couple of days.
We went to see Dr. L in Seattle on April 26, 2007. Peter's adrenal glands have not woken up and they now believe there is still tumor there. Because he is not close to 460 pounds they are not sure that he can do the surgery laproscopically. We are now waiting for Dr. L. to get back to us with more information and instructions on what to do next.
While we are optomistic that he will have the ability to keep up with our 4 year old daughter, somedays I just pray that he will be around to make her next birthday. He is a shadow of the man I met and never in a million years would I have believed that life would have thrown him this curve. Nevertheless, He is my bestfriend and my soulmate and we are in this journey together.
