I have a question...if anyone has had any experience with something similar, please let me know.
Been having a lot of weight gain and hormonal issues in the past two years. The other day something made me think about it...the year after decompression, I was on a high dose of Diamox to reduce the fluid in my head.During that time, my hormones leveled out a bit and I lost a lot of weight. I got down skinnier than I'd been since age 12! It's been since I got off Diamox two years ago that things have gotten worse and I've gained about 55 lbs. I also cannot lose weight no matter what I do. When I'm very careful with my diet, I can maintain my weight but that is all.
So I went in for blood work:
Everything looks good except:
Testosterone is high
High cholesterol (makes no sense with my diet)
Low vitamin D (even with taking a supplement and getting an hour of sun 6x a week)
Had a couple more tests after that because both my doctors thought it was for sure PCOS. I wasn't convinced which is why I decided to go through more testing to be sure. Everything has come back perfectly normal. My doctor is thoroughly confused...surprise, surprise! So yesterday he went ahead and ran four more pituitary hormone specific labs. Should get the results next week.
I can't take the Diamox because last time I was on it, I couldn't stay awake at all!
I'm also wondering if there's any way to check my ICP levels without having to do a spinal tap.
Susan, it's interesting that you have no appetite. I don't either. For the past year and half especially. I literally have to force myself to eat! I walk at least 5 days a week but it's pretty slow. Otherwise I get too much pressure in my head. Just trying to figure it all out....There is a lot more info than there was even when I was diagnosed 4 years ago, but still so much that isn't figured out. I'd like to figure it out for myself but am also willing to go through what it takes in the process so that maybe in a few years they can actually know what it is!
I was gaining 7lbs by weds and 10 by Fri for several weeks. After my surgery my thyroid quit working but at times it works. I have no appetite either. But do gain a lot of water. I am on 200mcg of synthroid 2x a day and 40 lasix. I had to under go a long thyroid study one series of blood test will not capture the whole picture. My dr. was familar with Chiari having symptoms like mine. I do find that exercise and staying busy helps I know it is not easy doing that and dealing with all the pain but I have finally lost 30 + and I do feel a lot better I still have bad days though. Good luck!
My b/p usually runs around 98/64 unless I am in pain then it will increase. I have a problem with my b/p dropping when I stand up suddenly or from a lying down to sitting position. Eileen
My blood pressures normal. Prior to surgery it would drop when I would stand up. Had a tilt table test and it dropped till I nearly passed out, they laid me back flat again and it went sky high! Miserable.... But it's been normal since decompression.