So I officially turned 40 in February. Not overly excited about that and at the same time, I'm glad I'm still around! I know before my pit surgery and even my CSF leak repair surgery, I was worried something horrible would happen. I hate when they mess with anything near the brain. But all is well and I had a fabulous birthday! My husband was unbelievably sweet and threw me a surprise birthday party! It was awesome and an absolute surprise! I had NO idea!! I did end up having to stress dose when I got home, because I thought I had over done it. It turns out I had was getting an infection. I ended up losing my voice the day after my party, but it lasted like 4 days, which is unusual for me. Nothing a quick dose of antibiotics couldn't fix.
I'm also back on my regular dose of hydro - 20mg. Took me 3 months to wean from 150mg to 20mg. Those last 10 were a doozy. My am cortisol is still less than 1, ACTH is 31, my thyroid # 's are in the middle of the range and my GH is at the low end of normal. My ENT says all is well with my CSF leak repair as well.
My twins turned 11 in March and we had a little party for them, but the first week of April (for Spring Break) we went to Orlando, FL as a part of their gift. We went to Universal Studios and LegoLand! It was a blast! I managed to go that whole trip with only having to stress dose once! After almost 5 years, I'm finally figuring out what I can and cannot do. I was worried about my CSF repair while on the plane, but it was ok.
My kids are both in sports - soccer and baseball - and it's been keeping us busy taking them to practices and games. My daughter plays travel soccer so our weekends are all over NJ! They are also both in Honors Band, so that's another day of practice to work in there. They only have 51 days of school left! Then they move on to Middle School. I'm NOT looking forward to that.
So that's all with me for the time being! I have to have a - ick - colonoscopy here in the next couple weeks (haven't set it up yet). So maybe I will post and let you know how my adrenals (or what's left of them) handles that!
1 comment:
Thank you for your blog. I am replying since I am trying to wait patiently on a diagnosis for my 16 year old son. It all started when he began gaining a lot of weight when he was 8. I started taking him to the dr to have labs and test done to see why. I was always told the same thing that he was normal and just needed to eat less. I kept taking him to different doctors over the years because I knew there was something medically wrong. Still the same. We finally about two month ago got a diagnosis of Hashimoto's and he is on 100 mcg of Synthroid and has a 1cm cyst on his thyroid. After checking and finding out that his cortisol is high, I still know that he has Cushings just can't get the diagnosis. He has just about everything symptom listed for it and now weighs 350. I fired his last Endo (seems like he just didn't know what he was doing)and still kept telling him to eat less and move more. Scheduling for us to come back and see his dietician. Ha! His regular doctor is working on getting us into another Endo, but don't know how long that will take. I took it upon myself to make an appt with an ENT. I am deciding whether to cancel or just keep it and see what they say. Maybe I can get them to run an MRI and CT to check for tumors. I am so very frustrated at this point. It should be so much easier to get these test done and find out what is going on. If you have any advice for me at this point it would be greatly appreciated. You are so right in saying that no one knows what it is like if you haven't been through it. Thank you, from a very concerned Mom. Kimberly
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