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!
Welcome to the Acromegaly Community! I was just like you before I first signed in for my first posting here. You want to read everyone else and be a bystandard. Well I am glad you finally have come forward, and maybe we can all help you towards the questions and solutions you seek.
I am STRONG believer that Acromegaly once diagnosed is not either 'cured' or is truely in 'remission'. Acromegaly has so many unknown related symptoms, causes, and effects on the body that are long lasting and life long. We only learn to live to MANAGE Acromegaly, it is not cured. Thus...
Hearing your symptoms of sleeping all day, I am diagnosed with Chronic Fatigue.
I have an incompletely resected macroandenoma with right cavernous invasion left over. So I believe the processes I am feeling the Chronic Fatigue, the chronic sore bones, ankles, sleep apea (CPAP Machine I got it ;0), extreme mood swings often happen within moments time, which is extremely scarey. When you feel you are not even in control of your own emotions!! The nightly and daily severe carpel tunnel I experience from my right hand all the way to my right leg and then upward half of my body.
These are all processes that will not be going away, and I am prepared to deal with them life long if need be. I am ok with that, I have made ammends with that, as to which my family and friends just dont understand how I can be so 'cavalier' about it. Well, I ask, how can I not? I'll drive myself insane with anxiety, panic attacks and extreme depression, which! By gosh! I've got diagnosis!
Warm Communique,
You don't need this talk cause' I know you've lived it every day since and before your diagnosis. When you knew your body was simply falling apart before you... Helpless. I had Bad Diabetes with 7 Insulin Injections Daily! Just days after my first Transphenoidal... I no longer needed Insulin... Which I needed Metformin etc since 2008. So the long term I am ready for a good life, a happy life, one that I have no regrets and hold no anger or grudges.
i just assumed i was "cured" as my dr said in MN, and off I went. so i've been thinking something ELSE might be going on with me or that recovery has just been sucky post surgery. i haven't heard before of the concept that we aren't cured but we manage acromegaly. is this widely thought of? do you know of any websites or articles about this you could share? it'd be so helpful!
now, im in seattle... far from MN, and i don't know where to go, who to see. i have an endo i saw initially for the diagnosis when we finally figured out what was making me so sick - the tumor/acro. im supposed to go get blood tests this week which is awesome because i can have something to work from. the mood swing stuff is insane! i have been on cymbalta, and now it just doesn't seem to work. you know what does though? unicorns! ahahaha :)
As for Life Long Management... I Have heard many Doctors who speak of a Medical "Cure" IE... GH and IGF Levels Down to Normal Levels... Indicating a "Cure" However, like me and many other members on this website may attest (I cant speak for everyone), but IGF Levels are constantly in flux with our bodies. The Pituitary Cells, especially if your Pit Gland was damaged, all these added medications we have to take to compensate for someone's normal Pit Gland. I know that is not normal, the feelings I feel, the way I felt long before ever starting to have my intense headaches being led to diagnosed to the Macroadenoma.
I think you should definately seek consultation with your Therapist for changes to your medications depression if you are on any... Because the mood swings are widely known for Acromegaly, and can look into other "Mood Stabilizers"... Ask to be referred to a sleep specialist... If you already have a CPAP and your Still Sleeping Non Stop Post Op... Thats another Chronic Side Effect of Acromegaly (Which Is not Going Away For Me)... Get Diagnosed and then you can get some other help for that from a sleep Doctor/Clinic....
I would keep up with your Endcrinologist... Tell him/her how you FEEL. How you WANT To Feel... And what Can he Offer with Recent Blood tests that he can offer alternative drugs. I don't know your situation, but you sound like a strong and independent girl. God Bless!
Wes- I. Take Duloxetine(cymbalta) as a stand alone anti depressants it can also be taken for bladder issues and for diabetic neuropathy pain. I
I appologize. I shouldnt speak about something I don't know. I could have been certain it was a drug that was being marketed sounding like Cymbalta that was meant to work in companion with other anti depressants.
As it is, Cymbalta, the commercials I have seen... Wow! The side effects and cautions are endless!
I am on Atacand PLus as it is, but my exercising and food changes over the past month have been lowering my blood presure to the points that I am having dizzying spells and bumping into walls. I should have my Atacand 32 MG reduced back to its original. My Blood pressure recently has been great again. It was only three months this past 8 that it seemed to skyrocket.
i'm going to see the same psychiatrist next week. she's one of the best in seattle as far as understanding the medication side. however, most psychiatrists aren't super familiar with acro, and so she's asked me to bring anything i have found on it and it's relation to depression/anxiety - and what has worked for other acro patients. woot! time to get me back.
It's funny. I can wake up from having the most vivid dreams of bad things, sad things or worrying things and within moments of waking up I am wanting to cry, but tears can never come out. I used to be able to cry, but I feel like solid ever since, and not in a good way. It's hard to explain.
Four months later, the symptoms started to return.......the IGF-1 level started climbing, the pains got worse, the fatigue (both mental and physical) returned.
In 2003 they performed a Gamma Knife procedure to kill any residual tumor cells and the pituitary.
Since 2000, I've been on 6 daily shots of Sandostatin for 8 years and my IGF-1 levels never got lower than the high 500's. The last 3 years I've been on the monthly LAR shot and my levels have hung in the 120-130 range consistently for the past 2 years.
My first endo told me there was no cure.... only management. My next endo was of the school that if my levels were in acceptable range I was cured. He was getting ready to retire and wanted a bench mark to hand off to his associate. At the end of 2009 we halted the monthly injections for 4 months........in 4 months my IGF-1 levels went from 120-130 range to just under 700. As he put it, this was good news and bad news. The good news was the monthly injections were keeping the IGF-1 levels in control. The bad news was the resections and Gamma Knife apparently were not as successfully as hoped for and the tumor and pituitary were still very much active. He also commented that maybe he would have to rethink his position on cure vs. management...... duh.
My current Endo is about to get fired. In the past 18 months, I figure I've seen him all of 10 minutes total. He sees no need for any follow up MRI's to monitor any tumor growth. As he said, the levels are consistently in the 120-130 range now (acceptable for my age) and I'm cured.
In 2009 I volunteered for a layoff from the design firm I was working with. Since then my condition has deteriorated to far worse levels than before my treatments began. I have constant pain and fatigue (both mental and physical), a good day the pain levels hoover around 5-6 on a 10 scale. Bad days it goes to a 9-10 and I stay in bed. Coordination has dropped off to the point I have trouble controlling the mouse on the computer. Headaches are constant...... when they get really bad (1-2 times a week), I take Amitriptyline, which knocks me out for 12-14 hours and leaves me with a hangover effect for most of the next day. My memory and cognitive skills have dropped off. I find myself getting confused and lost when driving more and more. The Neurologist finds nothing in the MRI or CT Scan to explain the headaches or the memory issues and attributes it to the Acro. A couple hours of work and I'm physically and mentally exhausted.
I have chest pains that my Cardiologist can't explain and also attributes to the Acro. All the test have cleared any fears of heart troubles (other than slight enlargement) or vascular issues. Actually, my resting pulse rate is in the high 40's to low 50's, something she attributes to the Tai Chi I do to keep my joints and muscles limber..........
and still my Endo thinks I'm cured.....I wish he had to walk a month in my shoes. The headaches he attributes to stress. The fatigue and pain he attributes to growing older along with the memory and the coordination...........I turn 56 in March. The mental confusion and depression he thinks are "psychosomatic' due to being out of work. Today, I go for the quarterly blood work, my monthly shot and I'm asking him to fill out a mental and physical evaluation for SSD..........depending on his responses, I thinking he may just be fired today.
I will be sending good thoughts and love your way!
Best,
Lolo
I just noticed that you went to the Mayo as well. Weren't they great! Since my surgery, I've transferred my treatment up closer to where I live but now that my numbers are going up again (1.5 yrs post surgery) I'm seriously thinking about going back down there. It's easy for me...just an 1 1/2 hr south of where I live. I love their complete approach to everything. When I left there I felt like I'd been thoroughly checked out. My doc also said he thought I was cured, at least biochemically so I've been a bit in denial. My symptoms starting resurfacing several months ago and I should have listened to my body. Oh well.
what's the status from your latest check? Are your numbers going up? Are you taking any acro meds?
At 56 years of age you are still a baby!!!! LOL Try 70 & still fighting against that "Aging" stigma!
Knowing what we know & what we have been through, we probably try to keep ourselves fitter, healthier, more knowledgeable, more alert, etc. than the majority of the population.