Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hi all!
My story is quite long, as I'm sure most of yours are, so I'll just give you the gist. I've been reading all of your posts for several months now, without posting. I'm hoping in posting here, I may be able to seek answers as well as help provide answers for others too. I'm 29, in Seattle.
After months of being in bed from vomiting so much daily, extreme fatigue, loss of vision, menses irregular and when existent so painful, then headaches I finally after years of trying to find answers I received news that I had a macroadenoma wrapped around my carotid artery pushing on my optic chiasm causing me to lose my sight and eventually go blind. Simultaneously in early August I also discovered I had acromegaly - thought feet growing three sizes over the course of years, wedding ring not fitting AT ALL, and facial swelling, etc being just due to weight gain. Not so much! I have so many blessings that have occurred in my life since all of this, and still so many obstacles. While I live in Seattle, was advised to go to the Mayo clinic in Minnesota who has such an amazingly incredible department of Endocrinology and a heck of a lot of experience with Acromegaly. I went there, underwent surgery within a couple of days of tests and had a 30% chance of success, but the surgery was 100% successful and my very high GH and IGF-1 levels plummeted and returned to normal though did have diabetes insipidis after surgery and low sodium and low cortisol which all returned to normal by my 3 mo. So what an amazing blessing it was - and we thought all my problems would be solved. I'll share some of those blessings at a later time.
Here I am, about to get my 6 month blood tests here in Seattle in a week, and I just don't seem to be getting better - or when one thing gets better, other things arise. I have such low energy and nausea so often. I am losing hair in clumps like CRAZY. I am having two periods a month that are so incredibly painful and this is so abnormal for me, it's usually not even monthly. I am on progesterone now, but that seems to be making things worse - and I'm so depressed (I just feel like a shell of the person I was). I'm doing a lot of alternative stuff, and am also using an ASV/bi-pap machine for central sleep apnea as of 3 mos ago. Has anyone had continued problems even though given a diagnosis of remission of acro? I'm not sure if it's back, or something else is going on now.
I look forward to getting to know you all - and thank you for any encouragement or advice!
My story is quite long, as I'm sure most of yours are, so I'll just give you the gist. I've been reading all of your posts for several months now, without posting. I'm hoping in posting here, I may be able to seek answers as well as help provide answers for others too. I'm 29, in Seattle.
After months of being in bed from vomiting so much daily, extreme fatigue, loss of vision, menses irregular and when existent so painful, then headaches I finally after years of trying to find answers I received news that I had a macroadenoma wrapped around my carotid artery pushing on my optic chiasm causing me to lose my sight and eventually go blind. Simultaneously in early August I also discovered I had acromegaly - thought feet growing three sizes over the course of years, wedding ring not fitting AT ALL, and facial swelling, etc being just due to weight gain. Not so much! I have so many blessings that have occurred in my life since all of this, and still so many obstacles. While I live in Seattle, was advised to go to the Mayo clinic in Minnesota who has such an amazingly incredible department of Endocrinology and a heck of a lot of experience with Acromegaly. I went there, underwent surgery within a couple of days of tests and had a 30% chance of success, but the surgery was 100% successful and my very high GH and IGF-1 levels plummeted and returned to normal though did have diabetes insipidis after surgery and low sodium and low cortisol which all returned to normal by my 3 mo. So what an amazing blessing it was - and we thought all my problems would be solved. I'll share some of those blessings at a later time.
Here I am, about to get my 6 month blood tests here in Seattle in a week, and I just don't seem to be getting better - or when one thing gets better, other things arise. I have such low energy and nausea so often. I am losing hair in clumps like CRAZY. I am having two periods a month that are so incredibly painful and this is so abnormal for me, it's usually not even monthly. I am on progesterone now, but that seems to be making things worse - and I'm so depressed (I just feel like a shell of the person I was). I'm doing a lot of alternative stuff, and am also using an ASV/bi-pap machine for central sleep apnea as of 3 mos ago. Has anyone had continued problems even though given a diagnosis of remission of acro? I'm not sure if it's back, or something else is going on now.
I look forward to getting to know you all - and thank you for any encouragement or advice!
warmcommunique
One more thing Jamie... it was because my tumor was very complicated, and I have familial ties to Mayo Clinic. So I rushed there, not having a team in place here at the time. it was all so fast.
deleted_user
Ok that's awesome. That is my doctor! I am actually headed up today because I have my glucose test first thing Monday morning.
warmcommunique
Hi Jamie! That's so funny! What'd you think of her? She is great. She has helped me build an amazing team of dr's here in Seattle. I have my 9 month post op followup with her on Wednesday next week. Doing another CST stim test just in case, but think it will be ok. How'd everything in your appt go? Are you seeing anyone else for anything or need any other support docs?
deleted_user
Wish I could be more helpful. I can't really give any advice because I'm still undiagnosed but I hope that you're symptoms subside. I hope you feel some relief soon.
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