Hi, my name is Crystal and I’m new. I’m a 35 yr.old mother of a 5 yr. old with more energy in her little pinky than I have in an entire day and I’m married to an amazing man, who makes living with this possible.
I was finally diagnosed with Cushing’s Disease (excreting pituitary tumor). In April 2017. I had the typical doctor who didn’t believe me so I took it into my own hands and figured out what I thought was going on….Cushings without a doubt in my mind.
So I went to a naturopath and asked her to order me a 24 hr. urine test and when she got it she said I need to go to an endo asap. I had already made appointments with two, one being at OHSU in Oregon with one of the best pit. teams in the US. I only live 2 hrs. away and am sooo lucky for that. I know many people have to travel much further to get the best healthcare for this.
Anyways, the endo I saw in Portland looked at me and immediately and said I had a very cushoid appearance and that we needed to do about 6 tests in the next two weeks. I did the tests, then had to do an MRI, which showed a 5×4 tumor in my pituitary gland, next was an IPSS to make sure it was 100% pituitary and not ectopic coming from somewhere else in my body. Once this was all confirmed I was scheduled for surgery in June.
As my surgery date approached, my symptoms got significantly worse and I finally called my endo to tell them. The nurse told me I had to deal with it until surgery and that there was nothing tI could do about my symptoms. Within 5 minutes of hanging up the assistant to the neurosurgeon called and told me surgery was being moved to the following week which was four days away. I had the transsphenoidal surgery about 6 weeks ago and my cortisol dropped to 0.6 in less than 24 hours after surgery. The neurosurgeon said I was technically in remission and although I’m happy, it seems to good to be true after the last couple years I’ve had. I came to this site looking for information on recovery. I know everyone is different and I was warned a little bit about it, but I’m pretty miserable and very curious how others recoveries are going.
Thanks, glad to be here. Crystal
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Aug 14, 2017 @ 10:54:33
Hi Crystal. How is your recovery going? I jut had adrenal surgery last week. Would love to compare and share experiences post op
Aug 19, 2017 @ 03:16:33
I just randomly saw this while searching for other’s recovery stories. I’m going to bed, but I’d totally chat about the last three months.
Oct 24, 2017 @ 14:48:09
So smart of you to be yuor own advocate and push. This is what we all have to do. Is what I am doing now. I am seeing an MD with a masters in nutritional biochemisrty. I believe people with Cushing’s can’t properly process starches in their foods. And it doesn’t show up until the starches turn to sugars and we develop diabeties. But as you say everyone is different. If I eat starchy foods I get Cuhing’s symptoms back again.
I am asking people to participate in an experiement to take out the starchy foods. Maybe after your recovery and when you are feeling back to normal you might want to try this. Especially if after eating you find your stomach is bloating up huge again. But I hope that never happens. But if it does there is this option. Good luck for a speedy recovery and long term good health.