Our dreams might just come true
Published: Sunday, Mar. 13, 2005
MORE INFORMATION
For more information on the Reproductive Endocrine unit at Mass General, visit ww.mgh.harvard.edu
/reproendo/ or call 1-617-726-5390.
My parents realized around 1970 that I wasnt growing. After lots of testing, Dr. Hans Bode started me off on human growth hormone (the same drug some athletes are using for performance enhancement.) In my case, three shots administered weekly by my dad caused me to grow an astonishing 10 inches over eight years.
The pituitary is the master gland and also controls other hormones. So I had to take medication to replace the hormones my body was not producing. I took a daily pill (Synthroid) and a monthly injection of testosterone. Over the years Id been told by several doctors and my urologist that I would never be able to have children . . . but I remembered Dr. Bodes words, Come see me if you want to have kids.
I lost touch with Bode over the years - he moved to Australia. I really never thought much about it, I focused more on the mountains and hiking pursuits. But one day among the high peaks in Colorado I met and fell in love with Anne, who would become my wife.
I was up front with her on the first or second date, so she knew that I would never be able to father a child. This was hard, but she hung around anyway. I remember her telling me how much she wanted to be a mom. At times I thought I was less of a man. Just a few months before we were married, a friend told her about Dr. William Crowley at Mass General Hospitals Reproductive Unit.
I made an appointment at the busy clinic for late January 2003. Anne and I were married on Jan. 4. We eagerly looked forward to meeting with the doctors. The day arrived and we were ushered into the small waiting room overlooking Fruit Street across from the hospital. I was nervous. We were introduced to Dr. Nelly Pitteloud, who was positive and upbeat.
She said there would need to be some tests. (When I was 9 or 10 Id gone though a bunch of tests to see if I would respond to growth hormone, so I knew what to expect.) We were also introduced to Andrew Dwyer, the units nurse practitioner and clinical research coordinator. I would need to have a weekly blood draw for now.
As I boarded the elevator that day, I was filled with lots of doubt. It seemed
like a lot of tests, not much fun at all.
In early spring I had an appointment with a pediatric surgeon who performed a biopsy to find out if there were germ cells in my testes, which are necessary for developing fertility. Sitting in the waiting room surrounded by fish-painted walls, toys and kids waiting to be operated on was pretty weird. I got some strange looks from parents, too. You may be wondering why a grown man would need to have a biopsy done by a pediatric surgeon. With my disease (pituitary deficiency), my testes were undeveloped. So the doctor needed to specialize in surgery on children.
After I woke up, the surgeon was pretty negative about the results. She called to make sure I was OK that night; she said it didnt look good, but shed give the results to Dr. Pitteloud and Crowley.
So when I got the call a few days later from Pitteloud, I wasnt holding out much hope. She was positive as always and said we would go ahead and begin treatment. There werent many germ cells, but she thought there were enough to try. They began in June 2003 by prescribing a drug called Profasi, which is a hormone called hCG thats used to stimulate the reproductive organs. I gave myself a shot every other day. Weekly blood tests continued, shipped in a freezer pack to Dwyer.
When we met Crowley that spring, he was concerned about my adrenal glands because an MRI had shown that my pituitary gland was there but wasnt attached to the stalk that connects it to the brain. The pituitary uses the stalk like a telephone wire to send messages to the brain: more hormone!
He asked me: How do you have the energy to hike mountains if your adrenal glands arent working? I always had plenty of energy, sometimes doing 15- or 20-mile trips over multiple peaks. Could it have been the monthly testosterone injections? After 20 years of regular testosterone injections, I stopped taking them in January 2003 to prepare for the tests. In May of that year, I barely made it to the north summit of Mount Hancock in the White Mountains. I had no energy at all.
At that time, Dwyer, the nurse practitioner, invited me to an overnight test at Mass General. They took frequent blood samples to measure LH (a reproductive hormone produced by the pituitary) for 12 hours as I slept through the night. Normally the LH looks like a mountain range with peaks and valleys. My results showed a flat line. Cortisol levels were also tested. Cortisol is a steroid hormone that is extremely important to your health; mine were OK.
They agreed that my monthly testosterone steroid injections had compensated for the fact that I didnt have any LH coming from my pituitary. This finally answered why my energy levels were so low that spring.
That same summer I was prescribed a new drug called Gonal/f (FSH), also to be injected. I was able to mix it in the same syringe as the hCG hormone I was taking, so I didnt have to poke too many holes in myself. The doctors explained that the two drugs would work together to induce puberty. Imagine, puberty at 43 years old?
Gonal/f, another hormone produced by the pituitary and important for reproduction, is extremely expensive. We were fortunate that our insurance covered it. One of the funny side effects from 10 months of treatment was that my hair (which had been thinning badly) started to grow back. Evidently the change in my hormones had temporarily halted my hair loss! Unfortunately it didnt last.
I noticed on a strenuous hike up a rock slide in November that my energy was back to normal. I had other symptoms of puberty also, the folks at the reproductive unit told us what to expect. The shots continued, I got real good at mixing and injecting and was faithful to it. Time passed and this became routine. Everyone was happy with the progress.
We went to Africa in the summer of 2004 on a short-term mission trip. We were able to carry our supplies and I continued treatment. I had no problems with lack of energy on our climb of Mount Kilimanjaro.
In October, Dwyer said it was time for another test. So, after 17 months of treatment, it had come to this. On Dec. 17, we got incredible news. My sperm count had gone from zero to 1.2 million/milliliter (actually 20-million/milliliter is considered normal, but you dont need that number to be fertile.)
Andrew told us at our latest appointment. This is why we do what we do; your story makes it all worthwhile.
So now we would begin the process to become pregnant. I cant begin to tell you the different feelings that Ive experienced through this long process; once it seemed like there was no end to all this, and no hope. But now we feel like our dreams might just come true and well be hearing the pattering of little footsteps coming down the hall real soon.
Our heartfelt thanks to the people at the reproductive unit at Mass General. Youve given us a chance for our dreams to come true. Thanks also to Andrew Dwyer for contributing to this article.
Published: Sunday, Mar. 13, 2005
MORE INFORMATION
For more information on the Reproductive Endocrine unit at Mass General, visit ww.mgh.harvard.edu
/reproendo/ or call 1-617-726-5390.
My parents realized around 1970 that I wasnt growing. After lots of testing, Dr. Hans Bode started me off on human growth hormone (the same drug some athletes are using for performance enhancement.) In my case, three shots administered weekly by my dad caused me to grow an astonishing 10 inches over eight years.
The pituitary is the master gland and also controls other hormones. So I had to take medication to replace the hormones my body was not producing. I took a daily pill (Synthroid) and a monthly injection of testosterone. Over the years Id been told by several doctors and my urologist that I would never be able to have children . . . but I remembered Dr. Bodes words, Come see me if you want to have kids.
I lost touch with Bode over the years - he moved to Australia. I really never thought much about it, I focused more on the mountains and hiking pursuits. But one day among the high peaks in Colorado I met and fell in love with Anne, who would become my wife.
I was up front with her on the first or second date, so she knew that I would never be able to father a child. This was hard, but she hung around anyway. I remember her telling me how much she wanted to be a mom. At times I thought I was less of a man. Just a few months before we were married, a friend told her about Dr. William Crowley at Mass General Hospitals Reproductive Unit.
I made an appointment at the busy clinic for late January 2003. Anne and I were married on Jan. 4. We eagerly looked forward to meeting with the doctors. The day arrived and we were ushered into the small waiting room overlooking Fruit Street across from the hospital. I was nervous. We were introduced to Dr. Nelly Pitteloud, who was positive and upbeat.
She said there would need to be some tests. (When I was 9 or 10 Id gone though a bunch of tests to see if I would respond to growth hormone, so I knew what to expect.) We were also introduced to Andrew Dwyer, the units nurse practitioner and clinical research coordinator. I would need to have a weekly blood draw for now.
As I boarded the elevator that day, I was filled with lots of doubt. It seemed
like a lot of tests, not much fun at all.
In early spring I had an appointment with a pediatric surgeon who performed a biopsy to find out if there were germ cells in my testes, which are necessary for developing fertility. Sitting in the waiting room surrounded by fish-painted walls, toys and kids waiting to be operated on was pretty weird. I got some strange looks from parents, too. You may be wondering why a grown man would need to have a biopsy done by a pediatric surgeon. With my disease (pituitary deficiency), my testes were undeveloped. So the doctor needed to specialize in surgery on children.
After I woke up, the surgeon was pretty negative about the results. She called to make sure I was OK that night; she said it didnt look good, but shed give the results to Dr. Pitteloud and Crowley.
So when I got the call a few days later from Pitteloud, I wasnt holding out much hope. She was positive as always and said we would go ahead and begin treatment. There werent many germ cells, but she thought there were enough to try. They began in June 2003 by prescribing a drug called Profasi, which is a hormone called hCG thats used to stimulate the reproductive organs. I gave myself a shot every other day. Weekly blood tests continued, shipped in a freezer pack to Dwyer.
When we met Crowley that spring, he was concerned about my adrenal glands because an MRI had shown that my pituitary gland was there but wasnt attached to the stalk that connects it to the brain. The pituitary uses the stalk like a telephone wire to send messages to the brain: more hormone!
He asked me: How do you have the energy to hike mountains if your adrenal glands arent working? I always had plenty of energy, sometimes doing 15- or 20-mile trips over multiple peaks. Could it have been the monthly testosterone injections? After 20 years of regular testosterone injections, I stopped taking them in January 2003 to prepare for the tests. In May of that year, I barely made it to the north summit of Mount Hancock in the White Mountains. I had no energy at all.
At that time, Dwyer, the nurse practitioner, invited me to an overnight test at Mass General. They took frequent blood samples to measure LH (a reproductive hormone produced by the pituitary) for 12 hours as I slept through the night. Normally the LH looks like a mountain range with peaks and valleys. My results showed a flat line. Cortisol levels were also tested. Cortisol is a steroid hormone that is extremely important to your health; mine were OK.
They agreed that my monthly testosterone steroid injections had compensated for the fact that I didnt have any LH coming from my pituitary. This finally answered why my energy levels were so low that spring.
That same summer I was prescribed a new drug called Gonal/f (FSH), also to be injected. I was able to mix it in the same syringe as the hCG hormone I was taking, so I didnt have to poke too many holes in myself. The doctors explained that the two drugs would work together to induce puberty. Imagine, puberty at 43 years old?
Gonal/f, another hormone produced by the pituitary and important for reproduction, is extremely expensive. We were fortunate that our insurance covered it. One of the funny side effects from 10 months of treatment was that my hair (which had been thinning badly) started to grow back. Evidently the change in my hormones had temporarily halted my hair loss! Unfortunately it didnt last.
I noticed on a strenuous hike up a rock slide in November that my energy was back to normal. I had other symptoms of puberty also, the folks at the reproductive unit told us what to expect. The shots continued, I got real good at mixing and injecting and was faithful to it. Time passed and this became routine. Everyone was happy with the progress.
We went to Africa in the summer of 2004 on a short-term mission trip. We were able to carry our supplies and I continued treatment. I had no problems with lack of energy on our climb of Mount Kilimanjaro.
In October, Dwyer said it was time for another test. So, after 17 months of treatment, it had come to this. On Dec. 17, we got incredible news. My sperm count had gone from zero to 1.2 million/milliliter (actually 20-million/milliliter is considered normal, but you dont need that number to be fertile.)
Andrew told us at our latest appointment. This is why we do what we do; your story makes it all worthwhile.
So now we would begin the process to become pregnant. I cant begin to tell you the different feelings that Ive experienced through this long process; once it seemed like there was no end to all this, and no hope. But now we feel like our dreams might just come true and well be hearing the pattering of little footsteps coming down the hall real soon.
Our heartfelt thanks to the people at the reproductive unit at Mass General. Youve given us a chance for our dreams to come true. Thanks also to Andrew Dwyer for contributing to this article.
