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.
Hello all,
I've been reading on here for awhile, but haven't posted yet. My name is Ryan. I'm 29 years old, and currently living in Calgary, Alberta, Canada with my beautiful wife and 3 year old (next month) son. Born and raised on the east coast in Sydney, Nova Scotia, but moved to Calgary a couple months after graduating high school.
In April 2007 I was diagnosed with Acromegaly by complete fluke. I had been having some strange health issues and "didn't know what was wrong with me". Shoe size was bigger, old hats didn't fit anymore, had a bit of depression, developed an under bite.. weird stuff. I went to my family doctor for a yearly physical, and he noticed that my Lipase enzyme (breaks down lipids/fats in the body) was too high and sent for another test. The 2nd test came back with the same result. My doc was confused by this and sent me to an internal specialist, "a doctor's doctor" he said.
The internal specialist sent me for some more tests and the Lipase enzyme was right back down to where it's supposed to be, no problems there. However, he noticed that my growth hormone level in my blood test was WAY high. As we were sitting there talking, he was looking at my face, holding my hands, etc. He asked me about the big hands and my response was "yeah, it's a family trait. All the men in my family have huge hands." Which is the truth. A bunch of other questions of course. Later on my wife asked me how he was and I said "nice guy.. but kind of strange, he was looking at me funny and holding my hands and stuff.., he ordered some more tests because my growth hormone was really high."
Well, as it turns out, he was looking at me funny and holding my hands because he was noticing the physical signs of Acromegaly. He just didn't want to say anything at the time. Well, the second blood test he ordered came back, and again, my GH was crazy high, as well as my IGF-1 this time. I can't remember exactly off the top of my head, but I believe my IGF-1 was in the ~800's at this time. So he said to me, "I don't want you to worry, but I think you have a rare disorder called Acromegaly. Your GH and IGF-1 levels are really high, and you have the physical signs.. etc." He ordered a growth hormone suppression test. As soon as I got home, I got on the computer and 'Googled' Acromegaly. Started reading and I knew right away, yes, this is what I have. I was going through the symptoms saying: "got it, got it, got it, nope, don't have that one, got it, got it.." So when the growth hormone suppression test confirmed Acromegaly, it was tough to hear, but at the same time it was a relief, because at least now I now what's wrong and that I'm not going crazy or falling apart. I was 26 years old at the time, and from what I've read, most people aren't diagnosed until their ~40's, so I was really happy about that. He referred me to the "Health Sciences Centre" at the University of Calgary, where they specialize in things like these.
An MRI followed, and they discovered a 1.7cm macroadenoma on my pituitary. I was referred to a neurosurgeon - Dr. Betty McRae - multiple people have said "she's one of the best neurosurgeons in Canada". Multiple doctors and nurses told me "you're in very capable hands, if I was to have someone operate on my brain, it would be Dr. McRae!" So that was very reassuring. In August 2007 I had my first transsphenoidal pituitary surgery and she was able to get the majority of the tumor out, I only had a ~2-3mm piece left. Shortly after the surgery my IGF-1 had come down to ~400, so things were looking up. My endocrinologist started me on Sandostatin LAR @ 10mg to try and get the IGF-1 down the rest of the way. For a little while it appeared to be working, but then my levels started going back up again, into the ~600's and higher. I was gradually increased to 20mg, and then 30mg, but my IGF-1 levels stayed high. They've since crept into the >1000 range a couple times. My endocrinologist said that "in a perfect world, I would probably switch you to a newer drug called pegvisomant/somavert, but it's very, very expensive". At the time, I had been doing some contract work and did not have drug benefits. He referred me back to Dr. McRae again, and the 3 of us, as well as my wife, all decided that it would be "worth a try" to have a second surgery and see if she could get any more tumor out.
So this past April, I had my second pituitary surgery. Dr. McRae told me that she wasn't very confident that she'd be able to get any more, but she would try her best. This was good enough for me, considering her aforementioned reputation. Immediately after the surgery she told me that it was a failure, that they took multiple biopsy's, but they were all scar tissue from the previous surgery. Too bad.
After meeting with my endocrinologist about a month after the surgery however, he told me that Dr. McRae was too critical of herself and that in fact, every biopsy taken was tested as being GH secreting. She had gotten more of the tumor after all! Great news! Sadly though, after my next bloodwork, my IGF-1 levels were still in the 800's. However, by this time I had gotten myself a new permanent job, with excellent benefits. We looked into it, and Pegvisomant/Somavert is covered 100%. My endocrinologist immediately decided to stop the Sandostatin LAR, and write a prescription for Somavert. I picked up my first months supply last week, and went to the hospital for instructions on how to administer it. My nurse and I had a good chuckle over how long it took a big tough guy like myself, to actually stick a tiny needle in my belly!! haha.
I've now been on a 10mg dosage of Somavert for one week as of today. I'm still having a bit of trouble with the idea of sticking myself with a needle. Even though I know it doesn't really hurt at all, it's a total "mental" thing! But it's getting better everyday. The last few days I *think* I'm feeling a bit different. IE - not feeling the symptoms as much, but I'm trying not to get too excited about that because I have felt that way before in the past 3 years and my next IGF-1 would come back higher than ever. However, I'm remaining positive that the new drug will do the trick. My endo and I are really really really not wanting to have any radiation if at all possible (mainly because I'm only 29)! Have the requisition form to have my next blood work done once I've been on the Somavert for 1 month. So we'll see what happens!!
Take care everyone and keep positive! And sorry for the "book" I just wrote! haha
rb
I've been reading on here for awhile, but haven't posted yet. My name is Ryan. I'm 29 years old, and currently living in Calgary, Alberta, Canada with my beautiful wife and 3 year old (next month) son. Born and raised on the east coast in Sydney, Nova Scotia, but moved to Calgary a couple months after graduating high school.
In April 2007 I was diagnosed with Acromegaly by complete fluke. I had been having some strange health issues and "didn't know what was wrong with me". Shoe size was bigger, old hats didn't fit anymore, had a bit of depression, developed an under bite.. weird stuff. I went to my family doctor for a yearly physical, and he noticed that my Lipase enzyme (breaks down lipids/fats in the body) was too high and sent for another test. The 2nd test came back with the same result. My doc was confused by this and sent me to an internal specialist, "a doctor's doctor" he said.
The internal specialist sent me for some more tests and the Lipase enzyme was right back down to where it's supposed to be, no problems there. However, he noticed that my growth hormone level in my blood test was WAY high. As we were sitting there talking, he was looking at my face, holding my hands, etc. He asked me about the big hands and my response was "yeah, it's a family trait. All the men in my family have huge hands." Which is the truth. A bunch of other questions of course. Later on my wife asked me how he was and I said "nice guy.. but kind of strange, he was looking at me funny and holding my hands and stuff.., he ordered some more tests because my growth hormone was really high."
Well, as it turns out, he was looking at me funny and holding my hands because he was noticing the physical signs of Acromegaly. He just didn't want to say anything at the time. Well, the second blood test he ordered came back, and again, my GH was crazy high, as well as my IGF-1 this time. I can't remember exactly off the top of my head, but I believe my IGF-1 was in the ~800's at this time. So he said to me, "I don't want you to worry, but I think you have a rare disorder called Acromegaly. Your GH and IGF-1 levels are really high, and you have the physical signs.. etc." He ordered a growth hormone suppression test. As soon as I got home, I got on the computer and 'Googled' Acromegaly. Started reading and I knew right away, yes, this is what I have. I was going through the symptoms saying: "got it, got it, got it, nope, don't have that one, got it, got it.." So when the growth hormone suppression test confirmed Acromegaly, it was tough to hear, but at the same time it was a relief, because at least now I now what's wrong and that I'm not going crazy or falling apart. I was 26 years old at the time, and from what I've read, most people aren't diagnosed until their ~40's, so I was really happy about that. He referred me to the "Health Sciences Centre" at the University of Calgary, where they specialize in things like these.
An MRI followed, and they discovered a 1.7cm macroadenoma on my pituitary. I was referred to a neurosurgeon - Dr. Betty McRae - multiple people have said "she's one of the best neurosurgeons in Canada". Multiple doctors and nurses told me "you're in very capable hands, if I was to have someone operate on my brain, it would be Dr. McRae!" So that was very reassuring. In August 2007 I had my first transsphenoidal pituitary surgery and she was able to get the majority of the tumor out, I only had a ~2-3mm piece left. Shortly after the surgery my IGF-1 had come down to ~400, so things were looking up. My endocrinologist started me on Sandostatin LAR @ 10mg to try and get the IGF-1 down the rest of the way. For a little while it appeared to be working, but then my levels started going back up again, into the ~600's and higher. I was gradually increased to 20mg, and then 30mg, but my IGF-1 levels stayed high. They've since crept into the >1000 range a couple times. My endocrinologist said that "in a perfect world, I would probably switch you to a newer drug called pegvisomant/somavert, but it's very, very expensive". At the time, I had been doing some contract work and did not have drug benefits. He referred me back to Dr. McRae again, and the 3 of us, as well as my wife, all decided that it would be "worth a try" to have a second surgery and see if she could get any more tumor out.
So this past April, I had my second pituitary surgery. Dr. McRae told me that she wasn't very confident that she'd be able to get any more, but she would try her best. This was good enough for me, considering her aforementioned reputation. Immediately after the surgery she told me that it was a failure, that they took multiple biopsy's, but they were all scar tissue from the previous surgery. Too bad.
After meeting with my endocrinologist about a month after the surgery however, he told me that Dr. McRae was too critical of herself and that in fact, every biopsy taken was tested as being GH secreting. She had gotten more of the tumor after all! Great news! Sadly though, after my next bloodwork, my IGF-1 levels were still in the 800's. However, by this time I had gotten myself a new permanent job, with excellent benefits. We looked into it, and Pegvisomant/Somavert is covered 100%. My endocrinologist immediately decided to stop the Sandostatin LAR, and write a prescription for Somavert. I picked up my first months supply last week, and went to the hospital for instructions on how to administer it. My nurse and I had a good chuckle over how long it took a big tough guy like myself, to actually stick a tiny needle in my belly!! haha.
I've now been on a 10mg dosage of Somavert for one week as of today. I'm still having a bit of trouble with the idea of sticking myself with a needle. Even though I know it doesn't really hurt at all, it's a total "mental" thing! But it's getting better everyday. The last few days I *think* I'm feeling a bit different. IE - not feeling the symptoms as much, but I'm trying not to get too excited about that because I have felt that way before in the past 3 years and my next IGF-1 would come back higher than ever. However, I'm remaining positive that the new drug will do the trick. My endo and I are really really really not wanting to have any radiation if at all possible (mainly because I'm only 29)! Have the requisition form to have my next blood work done once I've been on the Somavert for 1 month. So we'll see what happens!!
Take care everyone and keep positive! And sorry for the "book" I just wrote! haha
rb
BTW, thru my research I have heard that depending on the size and location of your tumor, if there's any left of it? there's a fairly new type of surgery using the Endoscope (endoscopic surgery) that can get alot more out and may be able to get your whole tumor out. If this is of interest, you may want to research that. I know of 3 docs in USA doing this type of surgery: Daniel Kelly in CA, Edward Laws in MA, and Paul Gardner in PA - if you want their contact, send me a private message or search for my previous post where I list their websites.
Best of luck to you... hang in there! sounds like you're doing good. Peace, Sunny
Welcome to our group. Thanks for sharing your interesting story. You are lucky to have been diagnosed earlier than most. Good for you (and your doctors). I am on pegvisomant and can tell you that after a few weeks, injecting is like brushing your teeth. It something that comes automatically. It is a good idea to remember to rotate your injection sites or you may get lumps under your skin. I usually go from thigh to thigh, then to the right side of my stomach, then left. Initially, I was injecting everyday, but now only twice a week.
The only side effect I have from peg is occasional shoulder pain. I do get headaches, but i don't know if this is from peg or the acro because i have had them for so many years now.
I wish you the best of luck with your appointments and pegvisomant.
Take care,
Mish
P.S. I live in Toronto and am very happy with my neurosurgeon and endocrinologist.
HIgh School Musical
The nurse was always quite amazed (so it seemed).
I don't really know why to this day.
Trys
www.acromegaly.wordpress.com
Lanreotide of course has a smaller (though stll substantial) needle and never really bothered me. Somavert has a tiny needle -- but you do have to adminster it yourself!
John
Yes, you are probably quite right. :)
It did ache a little the following day sometimes - a feeling like a diffuse bruise, but that would pass within a day or so.
(As an aside, I was given an emergency intra-muscular injection of hydrocortisone into my leg by my wife after my surgery, on the way to Accident & Emergency. That injection didn't hurt either.)
Fat-arsed Trys
www.acromegaly.wordpress.com