Charity from Winnipeg, Manitoba
Three years ago my husband Adam was diagnosed with a benign pituitary adenoma. Sure – you think “benign – so it’s not cancer. That’s good right?” Not necessarily. This little tumor has caused a lot of damage to my husband’s health. It has caused him to have a rare disease called “Acromegaly” (ah-cro-meg-a-lee) a disease that can cause many different issues, but in Adam’s case, causes headaches, excess bone growth on his face, hands and feet. He has developed a major crooked under-bite, causing him to mumble, bite his cheeks, and even caused some bone in his mouth to protrude through his gum tissue. He will eventually require surgery to reduce the bone in his lower jaw, and realign his teeth with braces. Skin grafts to cover the exposed bone will happen at some point if needed as well. His chest has barrelled out, giving him a larger appearance; his hip bones have grown too large for the hip sockets, causing chronic pain and osteoarthritis. He has fallen in parking lots and down stairs. He even has to use a cane from time to time. He suffers from depression, due to living in chronic pain. He gets plenty of sleep every night, but is still exhausted – all the time.
He takes a variety of colourful prescription pills every day. Each one made to correct a different symptom of his condition. He also gets a lovely visit once a month from a nurse, sent here by the pharmaceutical company, to inject him with not 1, but 2 subcutaneous 19 gauge needles in his buttocks. Ouch. Those needles cause him to have horrible stomach pains, so bad that he sometimes avoids eating all together. And this is all AFTER having transphenoidal brain surgery to remove as much of the tumor as they could (95% of it according to his surgeon) and then gamma knife radiation a year later. We have tried everything we can up until now to get him into remission – but so far, no success. Last summer he was put on disability. His job switched focus from work to himself. "Get better. THEN come back to work." We naively assumed it would only take a year – get those hips replaced, get your jaw fixed and you’ll be great! It has been over a year and we have very little progress. We finally got a date in September for the first of two hip replacements. February of 2018! Then 9 – 12 months later the 2nd hip, then after he recovers from that –we are hopeful he can go back to work full time at his career that he loves so much.
What is MY role in all of this? Well, aside from caring for our two amazing children every day, and running my own business - a Licensed Home Daycare - I keep track of all of his weekly appointments, and there are A LOT of them (he has 10 doctors and specialists working with him on a constant basis) I make sure he has his test results organized, and that all of his Doctors are aware of what the other Doctor is doing. I make sure he eats; I make sure he takes his medications. I make sure he books his appointments and goes to them. I also make sure that he maintains some sort of a social life - even though most days he just wants to stay home and rest. No amount of rest will ever be enough, so I push him to go out anyways, after all joy is so very good for the soul. And our kids - well - they keep us BOTH going. One foot in front of the other, "fake it ‘til you make it" Our kids keep us happy. They bring us so much joy and we are so proud of the strength they have shown through all of this.
Every day is a gift. We survive this journey one day at a time. Some people may think we don’t do much, we lay pretty low, but the truth is that every day we are fighting a battle you can’t see. We are fighting a battle to get our lives back to where we want them to be. We are fighting a battle to get my husband his quality of life back. He deserves to go skating and tobogganing with his kids. He deserves to have the energy to go to BOTH dinner AND a movie. Not JUST dinner or JUST a movie. He deserves to go back to his job he loves doing so much. Everything that is normal for a 33 year old man to be doing is a challenge for him; we want it to go back to being easy.
I admire him though – because you will very rarely see him complain. He is a tough, TOUGH man.
He has decided this fall to switch gears – he was asked to be an Ambassador of Acromegaly and he is working with a group of wonderful Acromegalics to raise awareness on this rare disease. He and I have also started up a local Facebook support group "Acromegaly Manitoba" to help support those of us locally that need to know they are NOT alone. Additionally, I started an additional Facebook support group for family & friends of people with Acromegaly, as our issues are unique. It is a
closed group that provides a safe environment for us to share our stories, and get advice of our own. Being a support person/advocate for a patient is a different journey all-together.
Today is Acromegaly Awareness Day and we’re doing what we can to erase the stigma attached to this rare disease, to raise awareness that it is diagnosed with a very simple blood test, an IGF-1 blood test. If you suspect that YOU may be suffering from Acromegaly, or you think someone you know may have it, please don’t hesitate to share the name of that test with them. It could save their lives. Because the truth is, my husband’s day-to-day life is heavy. Really, really heavy. But had he gone undiagnosed, and gone untreated, he could have died. This disease does take lives....but I won’t let it take Adam’s.
Three years ago my husband Adam was diagnosed with a benign pituitary adenoma. Sure – you think “benign – so it’s not cancer. That’s good right?” Not necessarily. This little tumor has caused a lot of damage to my husband’s health. It has caused him to have a rare disease called “Acromegaly” (ah-cro-meg-a-lee) a disease that can cause many different issues, but in Adam’s case, causes headaches, excess bone growth on his face, hands and feet. He has developed a major crooked under-bite, causing him to mumble, bite his cheeks, and even caused some bone in his mouth to protrude through his gum tissue. He will eventually require surgery to reduce the bone in his lower jaw, and realign his teeth with braces. Skin grafts to cover the exposed bone will happen at some point if needed as well. His chest has barrelled out, giving him a larger appearance; his hip bones have grown too large for the hip sockets, causing chronic pain and osteoarthritis. He has fallen in parking lots and down stairs. He even has to use a cane from time to time. He suffers from depression, due to living in chronic pain. He gets plenty of sleep every night, but is still exhausted – all the time.
He takes a variety of colourful prescription pills every day. Each one made to correct a different symptom of his condition. He also gets a lovely visit once a month from a nurse, sent here by the pharmaceutical company, to inject him with not 1, but 2 subcutaneous 19 gauge needles in his buttocks. Ouch. Those needles cause him to have horrible stomach pains, so bad that he sometimes avoids eating all together. And this is all AFTER having transphenoidal brain surgery to remove as much of the tumor as they could (95% of it according to his surgeon) and then gamma knife radiation a year later. We have tried everything we can up until now to get him into remission – but so far, no success. Last summer he was put on disability. His job switched focus from work to himself. "Get better. THEN come back to work." We naively assumed it would only take a year – get those hips replaced, get your jaw fixed and you’ll be great! It has been over a year and we have very little progress. We finally got a date in September for the first of two hip replacements. February of 2018! Then 9 – 12 months later the 2nd hip, then after he recovers from that –we are hopeful he can go back to work full time at his career that he loves so much.
What is MY role in all of this? Well, aside from caring for our two amazing children every day, and running my own business - a Licensed Home Daycare - I keep track of all of his weekly appointments, and there are A LOT of them (he has 10 doctors and specialists working with him on a constant basis) I make sure he has his test results organized, and that all of his Doctors are aware of what the other Doctor is doing. I make sure he eats; I make sure he takes his medications. I make sure he books his appointments and goes to them. I also make sure that he maintains some sort of a social life - even though most days he just wants to stay home and rest. No amount of rest will ever be enough, so I push him to go out anyways, after all joy is so very good for the soul. And our kids - well - they keep us BOTH going. One foot in front of the other, "fake it ‘til you make it" Our kids keep us happy. They bring us so much joy and we are so proud of the strength they have shown through all of this.
Every day is a gift. We survive this journey one day at a time. Some people may think we don’t do much, we lay pretty low, but the truth is that every day we are fighting a battle you can’t see. We are fighting a battle to get our lives back to where we want them to be. We are fighting a battle to get my husband his quality of life back. He deserves to go skating and tobogganing with his kids. He deserves to have the energy to go to BOTH dinner AND a movie. Not JUST dinner or JUST a movie. He deserves to go back to his job he loves doing so much. Everything that is normal for a 33 year old man to be doing is a challenge for him; we want it to go back to being easy.
I admire him though – because you will very rarely see him complain. He is a tough, TOUGH man.
He has decided this fall to switch gears – he was asked to be an Ambassador of Acromegaly and he is working with a group of wonderful Acromegalics to raise awareness on this rare disease. He and I have also started up a local Facebook support group "Acromegaly Manitoba" to help support those of us locally that need to know they are NOT alone. Additionally, I started an additional Facebook support group for family & friends of people with Acromegaly, as our issues are unique. It is a
closed group that provides a safe environment for us to share our stories, and get advice of our own. Being a support person/advocate for a patient is a different journey all-together.
Today is Acromegaly Awareness Day and we’re doing what we can to erase the stigma attached to this rare disease, to raise awareness that it is diagnosed with a very simple blood test, an IGF-1 blood test. If you suspect that YOU may be suffering from Acromegaly, or you think someone you know may have it, please don’t hesitate to share the name of that test with them. It could save their lives. Because the truth is, my husband’s day-to-day life is heavy. Really, really heavy. But had he gone undiagnosed, and gone untreated, he could have died. This disease does take lives....but I won’t let it take Adam’s.
Irene Yurashak from Saskatchewan
I was one of those people that never had the flu or got a cold. Besides giving birth to our two daughters, Irone in 1965 and the other in 1968, I was quite a healthy individual. Very active in sports, playing ball, curling, bowling, racket ball, swimming and walking. I was diagnosed in 1999 and was told that my symptoms could have started 15 years prior. I did a very complicate analysis of my medical history to see if and when my symptoms started. I was quite surprised.
1969
Mega trouble with my heart beating hard and fast especially when laying down. I ended up sleeping on the recliner to relieve the pain.
1970
Thyroid Surgery
1975
Hands and feet were getting larger. Rings from 7 ½ to 8 ½
1981
Carpal Tunnel Surgery on both hands. Started having pain from front to back and sometimes radiating to arm and shoulder.
1982
Heart still fast and loud with dull pain in chest
1983
Could not get rid of the heart/chest discomfort, I really think it is more than “gas pains”
1984
Continued symptoms and starting to retain fluids. I was also having tingling/numbness on the right side of my face.
1985
Hysterectomy, continuing all symptoms that started several years ago
1986
- Recurring Hyperthyroid – Radioactive Drink – symptoms relieved
- Recurring Carpal Tunnel Surgery on left hand
- Ring size increased to 9 ½, shoes to 8 ½
1987
Started some weird headaches. One was when I sat down at my desk to work and the other when I would be going to sleep
1988
Headaches getting worse and noticing skin tags
1989
Started snoring – probably Sleep Apnea. Rings to size 10 and shoes to size 9. I was told that “we all spread out as we age” I WAS ONLY 46!!!!
1990
Headaches persisting – sleeping on the recliner again. Went to see about my snoring and the doctor told me to lose weight – I WAS ONLY 165 LBS
1991
Having issues with Angina and headaches continued
1992
Started gaining weight 20 lbs in 2 years, angina and headaches continued
1993
Left arm very tight/sore
1994
All symptoms continuing and I was diagnosed with Diabetes
1997
All symptoms continuing but getting worse. Still gaining weight no matter how I watched what I was eating
1998
Miraculously my one type headache went away when I moved for work. I still had the one that I could not lay down and it was really getting bad.
1999
Neurologist told me he could not find anything in regards to the headaches and told me to “kiss the headache god statue on the way out the door”
Started to have problems with my vision, thought it might be from diabetes, Ophthalmologist said it was something else, sent me for a Cat Scan and found the tumour on the pituitary gland. MRI confirmed
Left arm/chest area still a problem, Cardiologist did a stress test and ordered an Angioplasty, had a stent put in before the pituitary surgery
Another miracle- the day after pituitary surgery I did NOT have a headache.
2000
Colonoscopy – 3 polyps removed
2001
Still seem to be gaining weight 220 lbs in January, 225 in March, put on Sandostatin 30 mg shots but weird weight gain literally after each shot, stopped in April when I was up to 235 lbs. My muscles seem to be weaker and sore. May brought on severe arm/chest tightness/ pain which was diagnosed as Small Vessel disease and started on nitro patch. My CK’s are getting quite high. By June my CK was 865. Muscle biopsy ordered but showed nothing all it did was make my leg very sore and numb. Really struggling especially with sore/weak muscles. Started Cardiac Rehab and Aqua size.
2002
- Having trouble caring things. My strength is getting less by the week. Family doctor suggested booking off work.
- MRI taken before radiation started
- Hands are very sore especially thumbs
-Diabetic Clinic to set up food plan. 284 lbs now
-Skin tags increasing
-Some headache- probably from radiation because they didn’t last too long
-Started using ‘gutter’ crutches from Physio to help hold me up when I walked
-CK’s are still high
-Sleep clinic confirms Sleep Apnea – got CPAS machine
-Continual problem with Angina
2003
- Bones are starting to hurt, tweaking feeling if ‘inside body hugs’
-Left leg feeling numb quite often I think it’s still from the muscle biopsy
-Another Colonoscopy – all OK
-Angina will not go away – probably because of the small vessel disease caused by my soft tissues congesting all the vessels.
2004
- Leg cramps, cotton ball vision, nausea, very tired, plain yucky. Blood tests have been showing Somatasitin C range from 311-582 and CK’s range from 218 to 861. - - - Angina still a problem- small vessel disease.
2005
- Sore, weak legs and starting to feel tweaking and razor sharp pain
- Endocrinologist put an article in the CM Journal about my case and I was also approved for a Pegvisomant (Somavert) drug study. By this time, I am 302 lbs.
- My ring are size 11 ½ and shoe size 9 ½
- Angina continues some days worse than others
2006
- Major leg cramps, still very weak and tired all the time
- Some problem with dizziness and a “thick” head feeling
- Very slowly losing weight 297 lbs
- Somavert increased dosage from 10-15
- Angioplasty repeated- another stent put in
- Having difficulty standing up from sitting position
2007
- A lot of improvement from Somavert – Some C and CK’s down
- Started physio but not really helping
- Lechen Sclorosis diagnosed when ‘waterworks’ checked out.
2008
- Colonoscopy repeated – OK
- Muscle weakness continues which makes me quite tired when I try to do anything that is slightly strenuous
- Angina still a problem, have leaky valve (aortic valve disease)
- Have uncomfortable feeling in my stomach trouble sleeping
2009
- Stomach protruding and feeling quite uncomfortable. Severe pain so went to emergency. Found a large mass.
- CAT Scan confirmed surgery scheduled. Mas was 13 lbs – not malignant
- Aortic valve disease still causing problems being monitored
- Muscle getting weaker and very sore, especially after activity
2010
- MRI shows no change in pituitary gland
- Echo done – monitoring aortic valve disease
- Starting to get blurry vision – possible cataracts
2011
- 4 am woke up with major pain in left arm, nitro spray subdued for a while, by 9 am pain worse and sweating.
- Health Line told me to go to emergency. Pain dissipated by 11 am ECG showed no heart attack.
- Cataract surgery on both eyes
- Slow weight loss – 279 lbs
2012
- Tingly numbness and sharp feeling in hands and feet. Leg foot, 3 middle toes and right foot upper arch. Right hand, middle finger, base of the palm
- Weak and tired legs persist
- Echo repeated for aortic valve disease – stable
- Left little finger has a ganglion that is starting to get very uncomfortable
2013
- Another episode in the middle of the night – Nitro spray helped
- Noticing muscle especially back are getting weaker
- Ganglion removed from left finger
- Started chair yoga and aquasize
2014
- Night episode again – nitro spray helped
- Hands, feet and legs problems getting worse
- Echo done, aortic valve disease getting worse will monitor
2015
- Feet/legs seem to be swelling more, also right arch area very sore. Getting razor sharp feeling on both legs.
- Vertigo – stopped yoga and aquasize – dr’s orders
- Have many mini episodes of angina some lasting longer than others
- Still weak and tired a lot
2016
Major episode ended up in emergency at Wakaw Hospital – IHB (120-130) then at RUH. Several months of having tightness, heavy feeling, angina, IHB. In June, cardiologist did echocardiogram showed calcification of the aortic and mitral valves. Will probably do surgery.
- OBGYN, thinks my incontinence is from weak muscles because of acromegaly
- Continuing razor sharp pains in both my legs and very very tender shin bones on both legs
- Another major episode of IHB and all symptoms, family doctor sent me to RUH again stayed until midnight and went home.
- A few weeks later same thing but didn’t go to hospital because they just wait for things to settle down and then send you home.
2017
- Year started out with another major episode, tightness, sweats, lots of IHB, tingling in my cheeks. Cardiologist arranging for appointment with heart surgeon.
- Tired and weakness is from my legs/muscles
- Open heart valve surgery April 26th with severe reaction to PROTAMINE and did not wake up for 7 days then not discharged until May 14th.
- July started IHB again for 3 days then stopped for 14 days then started again for another 3 days. Then again in August 3 days of IHB
- My feet and ankles feel like bricks, x-ray shows the soft tissue is very swollen
- My chest is still very tender
To summarize the summary – every day is a challenge, not just because of the heart surgery but the constant weakness and tiredness which I really think is getting worse as the years and months go on. I know that I must keep active and I do try but I just get more tired and weak after any physical exertion. I am very thankful that since I went on the Somavert I have at least stopped growing, I just wish I could lose some weight then I might not be so tired.
For someone that did not know what a illness was until this all started I still have trouble dealing with not being able to do all the things I used to do. I keep recording what happens to me because my girls want to know, just in case down the road they find that acromegaly is hereditary. I also hope that it could help with other cases. When you look at the possible symptoms of acromegaly I have 32 so the medical community should learn a lot from me. I just wish that when a patient has 5-6 of the symptoms they should be checked for this condition then maybe it would be caught sooner. All it takes is a simple blood test to see what the Human Growth Hormone is.
I was one of those people that never had the flu or got a cold. Besides giving birth to our two daughters, Irone in 1965 and the other in 1968, I was quite a healthy individual. Very active in sports, playing ball, curling, bowling, racket ball, swimming and walking. I was diagnosed in 1999 and was told that my symptoms could have started 15 years prior. I did a very complicate analysis of my medical history to see if and when my symptoms started. I was quite surprised.
1969
Mega trouble with my heart beating hard and fast especially when laying down. I ended up sleeping on the recliner to relieve the pain.
1970
Thyroid Surgery
1975
Hands and feet were getting larger. Rings from 7 ½ to 8 ½
1981
Carpal Tunnel Surgery on both hands. Started having pain from front to back and sometimes radiating to arm and shoulder.
1982
Heart still fast and loud with dull pain in chest
1983
Could not get rid of the heart/chest discomfort, I really think it is more than “gas pains”
1984
Continued symptoms and starting to retain fluids. I was also having tingling/numbness on the right side of my face.
1985
Hysterectomy, continuing all symptoms that started several years ago
1986
- Recurring Hyperthyroid – Radioactive Drink – symptoms relieved
- Recurring Carpal Tunnel Surgery on left hand
- Ring size increased to 9 ½, shoes to 8 ½
1987
Started some weird headaches. One was when I sat down at my desk to work and the other when I would be going to sleep
1988
Headaches getting worse and noticing skin tags
1989
Started snoring – probably Sleep Apnea. Rings to size 10 and shoes to size 9. I was told that “we all spread out as we age” I WAS ONLY 46!!!!
1990
Headaches persisting – sleeping on the recliner again. Went to see about my snoring and the doctor told me to lose weight – I WAS ONLY 165 LBS
1991
Having issues with Angina and headaches continued
1992
Started gaining weight 20 lbs in 2 years, angina and headaches continued
1993
Left arm very tight/sore
1994
All symptoms continuing and I was diagnosed with Diabetes
1997
All symptoms continuing but getting worse. Still gaining weight no matter how I watched what I was eating
1998
Miraculously my one type headache went away when I moved for work. I still had the one that I could not lay down and it was really getting bad.
1999
Neurologist told me he could not find anything in regards to the headaches and told me to “kiss the headache god statue on the way out the door”
Started to have problems with my vision, thought it might be from diabetes, Ophthalmologist said it was something else, sent me for a Cat Scan and found the tumour on the pituitary gland. MRI confirmed
Left arm/chest area still a problem, Cardiologist did a stress test and ordered an Angioplasty, had a stent put in before the pituitary surgery
Another miracle- the day after pituitary surgery I did NOT have a headache.
2000
Colonoscopy – 3 polyps removed
2001
Still seem to be gaining weight 220 lbs in January, 225 in March, put on Sandostatin 30 mg shots but weird weight gain literally after each shot, stopped in April when I was up to 235 lbs. My muscles seem to be weaker and sore. May brought on severe arm/chest tightness/ pain which was diagnosed as Small Vessel disease and started on nitro patch. My CK’s are getting quite high. By June my CK was 865. Muscle biopsy ordered but showed nothing all it did was make my leg very sore and numb. Really struggling especially with sore/weak muscles. Started Cardiac Rehab and Aqua size.
2002
- Having trouble caring things. My strength is getting less by the week. Family doctor suggested booking off work.
- MRI taken before radiation started
- Hands are very sore especially thumbs
-Diabetic Clinic to set up food plan. 284 lbs now
-Skin tags increasing
-Some headache- probably from radiation because they didn’t last too long
-Started using ‘gutter’ crutches from Physio to help hold me up when I walked
-CK’s are still high
-Sleep clinic confirms Sleep Apnea – got CPAS machine
-Continual problem with Angina
2003
- Bones are starting to hurt, tweaking feeling if ‘inside body hugs’
-Left leg feeling numb quite often I think it’s still from the muscle biopsy
-Another Colonoscopy – all OK
-Angina will not go away – probably because of the small vessel disease caused by my soft tissues congesting all the vessels.
2004
- Leg cramps, cotton ball vision, nausea, very tired, plain yucky. Blood tests have been showing Somatasitin C range from 311-582 and CK’s range from 218 to 861. - - - Angina still a problem- small vessel disease.
2005
- Sore, weak legs and starting to feel tweaking and razor sharp pain
- Endocrinologist put an article in the CM Journal about my case and I was also approved for a Pegvisomant (Somavert) drug study. By this time, I am 302 lbs.
- My ring are size 11 ½ and shoe size 9 ½
- Angina continues some days worse than others
2006
- Major leg cramps, still very weak and tired all the time
- Some problem with dizziness and a “thick” head feeling
- Very slowly losing weight 297 lbs
- Somavert increased dosage from 10-15
- Angioplasty repeated- another stent put in
- Having difficulty standing up from sitting position
2007
- A lot of improvement from Somavert – Some C and CK’s down
- Started physio but not really helping
- Lechen Sclorosis diagnosed when ‘waterworks’ checked out.
2008
- Colonoscopy repeated – OK
- Muscle weakness continues which makes me quite tired when I try to do anything that is slightly strenuous
- Angina still a problem, have leaky valve (aortic valve disease)
- Have uncomfortable feeling in my stomach trouble sleeping
2009
- Stomach protruding and feeling quite uncomfortable. Severe pain so went to emergency. Found a large mass.
- CAT Scan confirmed surgery scheduled. Mas was 13 lbs – not malignant
- Aortic valve disease still causing problems being monitored
- Muscle getting weaker and very sore, especially after activity
2010
- MRI shows no change in pituitary gland
- Echo done – monitoring aortic valve disease
- Starting to get blurry vision – possible cataracts
2011
- 4 am woke up with major pain in left arm, nitro spray subdued for a while, by 9 am pain worse and sweating.
- Health Line told me to go to emergency. Pain dissipated by 11 am ECG showed no heart attack.
- Cataract surgery on both eyes
- Slow weight loss – 279 lbs
2012
- Tingly numbness and sharp feeling in hands and feet. Leg foot, 3 middle toes and right foot upper arch. Right hand, middle finger, base of the palm
- Weak and tired legs persist
- Echo repeated for aortic valve disease – stable
- Left little finger has a ganglion that is starting to get very uncomfortable
2013
- Another episode in the middle of the night – Nitro spray helped
- Noticing muscle especially back are getting weaker
- Ganglion removed from left finger
- Started chair yoga and aquasize
2014
- Night episode again – nitro spray helped
- Hands, feet and legs problems getting worse
- Echo done, aortic valve disease getting worse will monitor
2015
- Feet/legs seem to be swelling more, also right arch area very sore. Getting razor sharp feeling on both legs.
- Vertigo – stopped yoga and aquasize – dr’s orders
- Have many mini episodes of angina some lasting longer than others
- Still weak and tired a lot
2016
Major episode ended up in emergency at Wakaw Hospital – IHB (120-130) then at RUH. Several months of having tightness, heavy feeling, angina, IHB. In June, cardiologist did echocardiogram showed calcification of the aortic and mitral valves. Will probably do surgery.
- OBGYN, thinks my incontinence is from weak muscles because of acromegaly
- Continuing razor sharp pains in both my legs and very very tender shin bones on both legs
- Another major episode of IHB and all symptoms, family doctor sent me to RUH again stayed until midnight and went home.
- A few weeks later same thing but didn’t go to hospital because they just wait for things to settle down and then send you home.
2017
- Year started out with another major episode, tightness, sweats, lots of IHB, tingling in my cheeks. Cardiologist arranging for appointment with heart surgeon.
- Tired and weakness is from my legs/muscles
- Open heart valve surgery April 26th with severe reaction to PROTAMINE and did not wake up for 7 days then not discharged until May 14th.
- July started IHB again for 3 days then stopped for 14 days then started again for another 3 days. Then again in August 3 days of IHB
- My feet and ankles feel like bricks, x-ray shows the soft tissue is very swollen
- My chest is still very tender
To summarize the summary – every day is a challenge, not just because of the heart surgery but the constant weakness and tiredness which I really think is getting worse as the years and months go on. I know that I must keep active and I do try but I just get more tired and weak after any physical exertion. I am very thankful that since I went on the Somavert I have at least stopped growing, I just wish I could lose some weight then I might not be so tired.
For someone that did not know what a illness was until this all started I still have trouble dealing with not being able to do all the things I used to do. I keep recording what happens to me because my girls want to know, just in case down the road they find that acromegaly is hereditary. I also hope that it could help with other cases. When you look at the possible symptoms of acromegaly I have 32 so the medical community should learn a lot from me. I just wish that when a patient has 5-6 of the symptoms they should be checked for this condition then maybe it would be caught sooner. All it takes is a simple blood test to see what the Human Growth Hormone is.
It is with deep regret that we were informed on Monday October 30, 2017 that Irene passed away. She was a valued member of our group and may she rest in peace.
John Fehr in Vancouver
Have you ever heard of Acromegaly? I hadn’t. And quite possibly neither had the numerous health professionals who were attempting to diagnose a host of peculiar health symptoms my body presented over the last seven years.
In hindsight, when I look back and remember all the suspicious problems that came up, I can piece together how the bizarre changes in my physicality, my appearance and even in my dental health were all related to each other and were forewarning me about a bigger underlying issue.
2005 I donated blood and the screening nurse alerted me to my high blood pressure reading. When I went to follow up on this, the doctor scoffed at the idea, that I was far too young to have high blood pressure. She told me not to let the screening nurse scare me. My dentist at the time, says my edge-to-edge bite was rather unusual.
2006 Once more, I donated blood and, again, the nurses said I had high BP and that I should get it checked out. This time I requested an exam for both my high blood pressure and for my oily, bumpy face. I wore a 24hr cuff, the kind that takes a reading every hour automatically and was eventually told that my BP was completely normal and the bumps and changes to the appearance of the skin on my face were merely whiteheads. I began to observe that my nose seemed larger and thought to myself that I did not like that my nose was growing.
2007 No blood donations this time. By now, I’d developed a strange clicking sound in my jaw whenever I chewed. I checked my BP at drug stores occasionally and the readings were "high-normal". I had a growing feeling that something wasn’t normal about me.
August 2008 I showed my dentist that I was developing an underbite. I told him that I used to have a connecting edge-to-edge bite but that now the bottom teeth exceeded the top teeth. I’d discovered it when I couldn’t bite my fishing line anymore to sever it. The dentist said, "That’s strange" and said we should keep an eye on it. I was turning 40 soon and so I thought all my health problems must be age-related.
August 2009 I showed my dentist that the underbite had worsened at 1/8" and so he referred me to an orthodontist. The orthodontist asked if I'd been in any trauma, which I hadn’t. He took a 180-degree x-ray that told him precisely nothing. The orthodontist then arranged an MRI, which also told him precisely nothing. Finally, he arranged a bone scan, the kind where radioactive material was injected into my veins. This, too, gave the orthodontist no definitive answers and so he recommended pulling all 4 wisdom teeth. The tooth extraction was scheduled for the following spring.
January 2010 I resized my wedding ring from a size 11 to 13, and presumed I must be getting fat. I went on a paleolithic diet and the weight came off drastically from 207 lbs down to 172 lbs by April.
February 2010 I needed an emergency appendectomy. The surgeon commented that my appendix was HUGE. My BP was notably high before and after the surgery, according to the nurses. They ask me if I’m on any medication for this. I tell them I’ve been tested for it and my doctor said I was fine. But now I worry about it again.
April 2010 My wisdom teeth were removed and the orthodontist made a recommendation to avoid doing anything dental for 6 months.
May 2010 I visited my GP, to have a look at my aching feet. I was having a hard time walking, first thing in the morning was the worst. He had them x-rayed and did blood work, both of which produced normal results and of course led him to no real answer for the foot pain. I told him that was the same no answer that I got for my underbite and he said, "That’s strange.” At work a customer said "Oh my God, what happened to your face?" to which I replied that I'd lost weight. He didn’t buy that answer; I’m sure he knew something was wrong with me. I’m not sure when my shoe size changed. I used to be a size 9.5 but now I buy size 11 to get a good fit.
My father gave me a hat he bought in Mexico. It was too small for me. I thought he got the wrong size or maybe he got it for my young son.
August 2011 I have my annual dental check-up. I told the dentist how disappointed I was to get no answers about the cause of my underbite after going through all the scans. The whole thing perplexed my dentist as well. This check-up shows I need a filling. A month or so later he does this and in response to the orthodontist’s recommendation, my dentist shaved down the points on several of my teeth to improve my bite. I did a Google search on underbites and found nothing but an unexpected reference to Acromegaly, the abnormal growth of the hands, feet, and face, caused by overproduction of growth hormone by the
pituitary gland. Amongst these search results I also saw shocking pictures of extreme cases and thought that couldn’t possibly be what I had, so I quickly dismissed it.
I was at a loss for what to do. Maybe I was in denial. At this stage whenever I looked in the mirror I wondered what was going on; I should’ve looked better after losing substantial weight, but then just ended up looking even stranger. At this point my underbite was a visible 3/16".
Winter 2011 The winter was really hard on my hands and I had multiple episodes of Raynaud’s phenomenon. Ice fishing became exceedingly difficult. The enlarged wedding ring no longer fit, and I marveled at how it could have become too small in just a year. People continually made comments about my large hands. My hands were noticeably bigger, and it was obvious when I clutched a pop can as the entire can would become nearly invisible in my grip.
April 2012 My sisters and their children were visiting from out of province. I was holding my baby nephew when my sister commented on how small her son looked in my big hands. This opened up a conversation about all the changes my body had undergone in the last few years. My other sister told me that I looked very different and then she did a web search on my list of symptoms: enlarged hands and feet, Raynaud’s phenomenon, growth of nose and underbite, oily skin and high blood pressure.
After her online search, she told me to check out two things: Marie's syndrome and – there it was again – Acromegaly. After reading through the Acromegaly descriptions once more, it took me a lot to accept it but I finally realized this was the answer.
The online descriptions said Acromegaly most commonly affects middle-aged adults. Left unchecked, it can result in disfigurement and really serious complications; and ultimately, if left untreated, premature death. Because of the way it develops so slowly, the disease is really hard to diagnose in its early stages and it’s frequently missed. To-date I had 7 years of medical and dental exams and tests from multiple health professionals that produced no answers whatsoever.
The descriptions indicated that when the physical changes impact external features, especially the face, the disease finally becomes noticeable. It said that symptoms develop very stealthily, taking years to decades to become obvious. Only 3 out of a million people per year get diagnosed with acromegaly!!!
May 2012 I went back to my GP and presented him with my case and he immediately scheduled blood work and an MRI. I got the blood work results before my MRI results, and when my doctor discussed the blood tests with me he observed that someone at the lab had wrote "insignificant" beside the 9.9 Human Growth Hormone (HGH) number. With these readings, my GP still questioned my self-diagnosis and now was skeptical about it. He said lots of men have large hands. I said there is no other explanation for my underbite. He then said that maybe I grew up with it, obviously not believing me. That frustrated me greatly and I had no confidence with him and I started to see what I could do about seeing another doctor.
The MRI results came in a week later confirming a 10 mm secreting adenoma of the pituitary. Finally my doctor actually showed some concern. He had conferred with his colleagues and none of them had ever seen a case of acromegaly. I was actually relieved to hear this news. I knew I had all the symptoms and now I had confirmation.
July 2012 I was referred to an endocrinologist, who recommended tumor removal and then reassessment. That 9.9 HGH was extremely high! Less than 1 is normal. She said people don't hit that level during a growth spurt in the peak of puberty. A bodybuilder seriously abusing HGH couldn't reach that number. She said in the medical history of Manitoba there might be about 100 - 150 cases, not quite 1 case per year. Unfortunately this disease places me at a high risk for colon cancer too.
My self-diagnosis really impressed the endocrinologist. She said I should not be too hard on my doctor and dentist because they did not know what they were looking at.
The endocrinologist also had some good news. She told me all the soft tissue swelling would go away, that my tongue would reduce in size, my oily skin would clear, and that my face would return to normal except for the underbite. She referred me to a neurosurgeon for tumor removal, and then indicated that I would have to wait a little.
I saw the neurosurgeon on July 30. Turns out he is one of the best, if not the best, neurosurgeon in Canada. After doing research on him and then meeting with him, I had complete confidence in having surgery for Sept 20.
Just 2 weeks before surgery a customer came up to me and asked to see John. I said "you're looking for John?" He said, "Yes, John the sign guy" as he pointed to my empty desk. Now I've known this customer for more than 10 years but only see him about two times a year. I asked if this was a joke, and he said no. I say "If you're looking for John, I'm John!" The customer looked very confused and made some excuse about being tired and that I just didn't look like myself. I guess I'll tell him why next time I see him.
September 2012 Surgery was a success! My hands and feet stopped hurting immediately! Doctor said the tumor was completely removed and the pituitary gland seemed to just bounce back where it should be. He said there was no sign of a cranial fluid leak. The nurse in recovery told me my BP was really good, in the 120s! One week later and I am wearing my wedding ring again!
January 2013 Even though I had blood work done two weeks after surgery, I was not told what the results were. I guess no news is good news. I’m not on any medication. I had a follow up appointment with the ENT doctor and he said I was doing fine. I also had a follow up appointment with the neurosurgeon and he scheduled a follow up MRI scan. Everything looks good. There is no sign of any tumor. My hands and feet are great. No more carpal tunnel symptoms and no episodes of Raynaud’s this ice fishing season. I breathe really well through my nose now and do not snore anymore. My sense of smell is still really poor, I do not know if this will get better over time.
I saw the neurosurgeon in April, he said I looked much better and we went over the last MRI results. He showed me that there was no sign of tumor. He also had the results from the blood test from October. IGF-1 was 208, only 2 points over normal. Growth hormone was at 0.2, way better than 9.9 before surgery.
June 12 I had another blood test done. Now my IGF-1 level is 103 and GH 0.1! I guess I’m in remission! July 25 I had another MRI done. No sign of tumor and will not need another scan for a year. So now I only need to see the specialists once a year. What a strange year it's been.
Have you ever heard of Acromegaly? I hadn’t. And quite possibly neither had the numerous health professionals who were attempting to diagnose a host of peculiar health symptoms my body presented over the last seven years.
In hindsight, when I look back and remember all the suspicious problems that came up, I can piece together how the bizarre changes in my physicality, my appearance and even in my dental health were all related to each other and were forewarning me about a bigger underlying issue.
2005 I donated blood and the screening nurse alerted me to my high blood pressure reading. When I went to follow up on this, the doctor scoffed at the idea, that I was far too young to have high blood pressure. She told me not to let the screening nurse scare me. My dentist at the time, says my edge-to-edge bite was rather unusual.
2006 Once more, I donated blood and, again, the nurses said I had high BP and that I should get it checked out. This time I requested an exam for both my high blood pressure and for my oily, bumpy face. I wore a 24hr cuff, the kind that takes a reading every hour automatically and was eventually told that my BP was completely normal and the bumps and changes to the appearance of the skin on my face were merely whiteheads. I began to observe that my nose seemed larger and thought to myself that I did not like that my nose was growing.
2007 No blood donations this time. By now, I’d developed a strange clicking sound in my jaw whenever I chewed. I checked my BP at drug stores occasionally and the readings were "high-normal". I had a growing feeling that something wasn’t normal about me.
August 2008 I showed my dentist that I was developing an underbite. I told him that I used to have a connecting edge-to-edge bite but that now the bottom teeth exceeded the top teeth. I’d discovered it when I couldn’t bite my fishing line anymore to sever it. The dentist said, "That’s strange" and said we should keep an eye on it. I was turning 40 soon and so I thought all my health problems must be age-related.
August 2009 I showed my dentist that the underbite had worsened at 1/8" and so he referred me to an orthodontist. The orthodontist asked if I'd been in any trauma, which I hadn’t. He took a 180-degree x-ray that told him precisely nothing. The orthodontist then arranged an MRI, which also told him precisely nothing. Finally, he arranged a bone scan, the kind where radioactive material was injected into my veins. This, too, gave the orthodontist no definitive answers and so he recommended pulling all 4 wisdom teeth. The tooth extraction was scheduled for the following spring.
January 2010 I resized my wedding ring from a size 11 to 13, and presumed I must be getting fat. I went on a paleolithic diet and the weight came off drastically from 207 lbs down to 172 lbs by April.
February 2010 I needed an emergency appendectomy. The surgeon commented that my appendix was HUGE. My BP was notably high before and after the surgery, according to the nurses. They ask me if I’m on any medication for this. I tell them I’ve been tested for it and my doctor said I was fine. But now I worry about it again.
April 2010 My wisdom teeth were removed and the orthodontist made a recommendation to avoid doing anything dental for 6 months.
May 2010 I visited my GP, to have a look at my aching feet. I was having a hard time walking, first thing in the morning was the worst. He had them x-rayed and did blood work, both of which produced normal results and of course led him to no real answer for the foot pain. I told him that was the same no answer that I got for my underbite and he said, "That’s strange.” At work a customer said "Oh my God, what happened to your face?" to which I replied that I'd lost weight. He didn’t buy that answer; I’m sure he knew something was wrong with me. I’m not sure when my shoe size changed. I used to be a size 9.5 but now I buy size 11 to get a good fit.
My father gave me a hat he bought in Mexico. It was too small for me. I thought he got the wrong size or maybe he got it for my young son.
August 2011 I have my annual dental check-up. I told the dentist how disappointed I was to get no answers about the cause of my underbite after going through all the scans. The whole thing perplexed my dentist as well. This check-up shows I need a filling. A month or so later he does this and in response to the orthodontist’s recommendation, my dentist shaved down the points on several of my teeth to improve my bite. I did a Google search on underbites and found nothing but an unexpected reference to Acromegaly, the abnormal growth of the hands, feet, and face, caused by overproduction of growth hormone by the
pituitary gland. Amongst these search results I also saw shocking pictures of extreme cases and thought that couldn’t possibly be what I had, so I quickly dismissed it.
I was at a loss for what to do. Maybe I was in denial. At this stage whenever I looked in the mirror I wondered what was going on; I should’ve looked better after losing substantial weight, but then just ended up looking even stranger. At this point my underbite was a visible 3/16".
Winter 2011 The winter was really hard on my hands and I had multiple episodes of Raynaud’s phenomenon. Ice fishing became exceedingly difficult. The enlarged wedding ring no longer fit, and I marveled at how it could have become too small in just a year. People continually made comments about my large hands. My hands were noticeably bigger, and it was obvious when I clutched a pop can as the entire can would become nearly invisible in my grip.
April 2012 My sisters and their children were visiting from out of province. I was holding my baby nephew when my sister commented on how small her son looked in my big hands. This opened up a conversation about all the changes my body had undergone in the last few years. My other sister told me that I looked very different and then she did a web search on my list of symptoms: enlarged hands and feet, Raynaud’s phenomenon, growth of nose and underbite, oily skin and high blood pressure.
After her online search, she told me to check out two things: Marie's syndrome and – there it was again – Acromegaly. After reading through the Acromegaly descriptions once more, it took me a lot to accept it but I finally realized this was the answer.
The online descriptions said Acromegaly most commonly affects middle-aged adults. Left unchecked, it can result in disfigurement and really serious complications; and ultimately, if left untreated, premature death. Because of the way it develops so slowly, the disease is really hard to diagnose in its early stages and it’s frequently missed. To-date I had 7 years of medical and dental exams and tests from multiple health professionals that produced no answers whatsoever.
The descriptions indicated that when the physical changes impact external features, especially the face, the disease finally becomes noticeable. It said that symptoms develop very stealthily, taking years to decades to become obvious. Only 3 out of a million people per year get diagnosed with acromegaly!!!
May 2012 I went back to my GP and presented him with my case and he immediately scheduled blood work and an MRI. I got the blood work results before my MRI results, and when my doctor discussed the blood tests with me he observed that someone at the lab had wrote "insignificant" beside the 9.9 Human Growth Hormone (HGH) number. With these readings, my GP still questioned my self-diagnosis and now was skeptical about it. He said lots of men have large hands. I said there is no other explanation for my underbite. He then said that maybe I grew up with it, obviously not believing me. That frustrated me greatly and I had no confidence with him and I started to see what I could do about seeing another doctor.
The MRI results came in a week later confirming a 10 mm secreting adenoma of the pituitary. Finally my doctor actually showed some concern. He had conferred with his colleagues and none of them had ever seen a case of acromegaly. I was actually relieved to hear this news. I knew I had all the symptoms and now I had confirmation.
July 2012 I was referred to an endocrinologist, who recommended tumor removal and then reassessment. That 9.9 HGH was extremely high! Less than 1 is normal. She said people don't hit that level during a growth spurt in the peak of puberty. A bodybuilder seriously abusing HGH couldn't reach that number. She said in the medical history of Manitoba there might be about 100 - 150 cases, not quite 1 case per year. Unfortunately this disease places me at a high risk for colon cancer too.
My self-diagnosis really impressed the endocrinologist. She said I should not be too hard on my doctor and dentist because they did not know what they were looking at.
The endocrinologist also had some good news. She told me all the soft tissue swelling would go away, that my tongue would reduce in size, my oily skin would clear, and that my face would return to normal except for the underbite. She referred me to a neurosurgeon for tumor removal, and then indicated that I would have to wait a little.
I saw the neurosurgeon on July 30. Turns out he is one of the best, if not the best, neurosurgeon in Canada. After doing research on him and then meeting with him, I had complete confidence in having surgery for Sept 20.
Just 2 weeks before surgery a customer came up to me and asked to see John. I said "you're looking for John?" He said, "Yes, John the sign guy" as he pointed to my empty desk. Now I've known this customer for more than 10 years but only see him about two times a year. I asked if this was a joke, and he said no. I say "If you're looking for John, I'm John!" The customer looked very confused and made some excuse about being tired and that I just didn't look like myself. I guess I'll tell him why next time I see him.
September 2012 Surgery was a success! My hands and feet stopped hurting immediately! Doctor said the tumor was completely removed and the pituitary gland seemed to just bounce back where it should be. He said there was no sign of a cranial fluid leak. The nurse in recovery told me my BP was really good, in the 120s! One week later and I am wearing my wedding ring again!
January 2013 Even though I had blood work done two weeks after surgery, I was not told what the results were. I guess no news is good news. I’m not on any medication. I had a follow up appointment with the ENT doctor and he said I was doing fine. I also had a follow up appointment with the neurosurgeon and he scheduled a follow up MRI scan. Everything looks good. There is no sign of any tumor. My hands and feet are great. No more carpal tunnel symptoms and no episodes of Raynaud’s this ice fishing season. I breathe really well through my nose now and do not snore anymore. My sense of smell is still really poor, I do not know if this will get better over time.
I saw the neurosurgeon in April, he said I looked much better and we went over the last MRI results. He showed me that there was no sign of tumor. He also had the results from the blood test from October. IGF-1 was 208, only 2 points over normal. Growth hormone was at 0.2, way better than 9.9 before surgery.
June 12 I had another blood test done. Now my IGF-1 level is 103 and GH 0.1! I guess I’m in remission! July 25 I had another MRI done. No sign of tumor and will not need another scan for a year. So now I only need to see the specialists once a year. What a strange year it's been.
Connie Jeffrey in Vancouver
Hello, my name is Connie Jeffrey.
Normal parents, siblings, loving family with lots of aunts and uncles and 13 cousins I still keep in touch with. Nothing out of the ordinary, right? I was the tallest of my cousins, but I had two aunts who were tall because my Papa was over 6' tall, so no idea anything was wrong, right?
When I was 12, I got appendicitis and had to have surgery to remove it. After surgery, I was told that they had removed a 12" inflamed appendix that had twisted in and around my bowels. I was told at that time it was the largest appendix they had ever seen as a normal appendix is the length of your baby finger! But, nothing wrong, just a quirk of nature, right?
By the time I was 15, I still had not started my menstrual cycle so visited a doctor who thought he needed to check me out down there, so I had another surgery because they thought I might have 2 vaginas but upon having me under, they discovered a hymen that was very thick and had to be cut. Nothing out of the ordinary, right?
At the age of 17, my feet were still growing and I went from a size 8 to size 9 and then a size 10 in a matter of 2 years. My feet should have stopped growing many years earlier, but nothing out of the ordinary, right?
At the age of 18 I was pregnant with my first child. No problems during pregnancy, childbirth or with my son. He was born, 8 lbs., 5 oz., to a single Mom who loved him very much. I married for the first time at the age of 19 and my ring size was 7.5! I was divorced before my 21st birthday.
Although I was a tall girl (5' 8"), I had "big bones" and was able to carry 140 - 150 lbs. very well. My youth did not show any issues with my face, my foot growth seemed to slow down and I was able to diet and lose weight. I was active, working and enjoying my son and my supportive family. I married again in October 1977, my ring size was now 8.5, I had two more children, a son in May 1978 and a daughter in June 1982. I also suffered a miscarriage at 13 weeks pregnant in 1981. My second son weighed 11 lbs., 5 oz., and my daughter weighed 9 lbs., 14 oz., at birth. I was told I had large babies because both my grandmothers had developed Type 2 Diabetes and as it ran in my family, larger babies are often a result. But I was still healthy, my babies were healthy and nothing out of the ordinary, right?
From the age of 20, I had been prescribed tranquilizers to relieve my anxiety as I was prone to panic attacks. I still take 1 mg Lorazepam tablets to this day when I have an attack. Ordinary, right?
In my mid-30's I had carpal tunnel surgery on my right wrist. Nothing unusual because I worked on a computer, my Mom had had both wrists done, hereditary? My left wrist has never been done, but bothers me still. Ordinary, right?
In my late 30's I was having trouble with my menstrual cycles being only 17 days apart. It was making me very weak because the cycles lasted 6-8 days and the loss of blood made it hard for me to function some months. I had a Dilation and curettage (D&C) and 9 days after my D&C I had a full period! The doctor said this was not normal and that I should have been free of a cycle for at least 21 days after the D&C. So, they gave me a hysterectomy in 1990 to resolve the problem. Normal?
In 2000, I was on a business trip to Ottawa where I suffered a severe Gall Bladder attack. I was able to make it through the Conference and home to see a doctor where I had surgery to remove the gall bladder 3 months later. It was full of stones and needed to be removed.
In December 2003 I brought my Mom to live with me as she was in the early stages of dementia and needed a caregiver. I was still working, commuting every day to work and managing my life, but it was getting more and more difficult as my Mom was starting to need more help than I could provide while working full time. In May 2006 I sadly put her in a care facility where she remained until her death in December 2011. Stress upon stress upon stress, but I handled everything and kept going. I noticed my knees were starting to hurt and so were my hips. I had seen a specialist but at that time he told me I was too overweight to do anything, so basically, live with it for now!
In June 2006 my family doctor sent me to a new Endocrinologist as he was concerned about my sugar levels and my family history with diabetes. My Endocrinologist, Dr. Jennifer Klinke, was very proactive with tests, blood workups and MRI's and by September, 2006, the diagnosis was in, I had Acromegaly! It took 3 or 4 MRI's to locate my very small pituitary tumour but in the mean time, I was put on a medication called, Sandostatin Octreotide with injections every 28 days by a registered Nurse starting June, 2007. This brought my GH levels down, but made my diabetes worse.
I also had a small lump on my left Thyroid gland that she wanted removed so I saw an Ear, Nose and Throat doctor who arranged for the surgery in 2007. The anesthetist at the hospital I had the surgery at told me that because my tongue was so large, I would have to be awake for the intubation so she could be sure she could do the intubation. This scared me, but I soldiered on. They gave me something to relax me, made me swallow something to numb my throat and sprayed my throat, but nothing helped and she struggled to get the tube down my throat. I found out afterwards that the ENT doctor told them to give me the anesthetic and he intubated me. He said to me, "What kind of an ENT would I be if I couldn't intubate my patients!" and he said he just couldn't watch this new doctor trying to do it. That was nice to know! His name is Dr. David Anderson. So, the removal of the benign tumour/growth from my thyroid did not make any difference other than I now had to be supplemented with synthroid. Normal for Acromegaly, right!
Finally, in 2010, I said that I would be ready for the surgery after I retired in January, 2011, so Dr. Klinke got the ball rolling to visit Dr. Heran, the Neurosurgeon, who she assured me had done several of these surgeries and was very good. I met with him, surgery was performed July 6, 2011 and the tumour was so small that they could not even save a small bit of it for a biopsy. Although the surgery was supposed to be a day surgery, I had to stay for several days because the shock to my pituitary gland made me extremely thirsty and they had to monitor my intake and output for several days. I was the healthiest patient in the critical care area of the hospital!
So, now it's 2015, my GH is a high normal, but good enough for my Endo. My diabetes is under control with Victoza injections daily. I'm off high blood pressure medications and on a lower dosage of Synthroid as my right thyroid is doing just fine. I still suffer daily nausea, slight headaches occasionally and fluctuations with my body heat. I'm getting tested for low cortisol levels next month as my numbers are on the lower end of normal and may be affecting my feelings of exhaustion. My knees and hips are still painful and the arthritis is moving up my spine, but it's manageable. I go for IGF1 tests every 3 months. Life is good because I'm still here. My symptoms took years to recognize and yet, I wouldn't change anything. Yes it's been tough at times, but my struggles are not nearly as difficult as some of those I have read about on Facebook. I have a faith that is never ending, a family that is ever loving and friends that are ever supportive. Now I have my Acromegaly family.... what more could I ask for?
Hello, my name is Connie Jeffrey.
Normal parents, siblings, loving family with lots of aunts and uncles and 13 cousins I still keep in touch with. Nothing out of the ordinary, right? I was the tallest of my cousins, but I had two aunts who were tall because my Papa was over 6' tall, so no idea anything was wrong, right?
When I was 12, I got appendicitis and had to have surgery to remove it. After surgery, I was told that they had removed a 12" inflamed appendix that had twisted in and around my bowels. I was told at that time it was the largest appendix they had ever seen as a normal appendix is the length of your baby finger! But, nothing wrong, just a quirk of nature, right?
By the time I was 15, I still had not started my menstrual cycle so visited a doctor who thought he needed to check me out down there, so I had another surgery because they thought I might have 2 vaginas but upon having me under, they discovered a hymen that was very thick and had to be cut. Nothing out of the ordinary, right?
At the age of 17, my feet were still growing and I went from a size 8 to size 9 and then a size 10 in a matter of 2 years. My feet should have stopped growing many years earlier, but nothing out of the ordinary, right?
At the age of 18 I was pregnant with my first child. No problems during pregnancy, childbirth or with my son. He was born, 8 lbs., 5 oz., to a single Mom who loved him very much. I married for the first time at the age of 19 and my ring size was 7.5! I was divorced before my 21st birthday.
Although I was a tall girl (5' 8"), I had "big bones" and was able to carry 140 - 150 lbs. very well. My youth did not show any issues with my face, my foot growth seemed to slow down and I was able to diet and lose weight. I was active, working and enjoying my son and my supportive family. I married again in October 1977, my ring size was now 8.5, I had two more children, a son in May 1978 and a daughter in June 1982. I also suffered a miscarriage at 13 weeks pregnant in 1981. My second son weighed 11 lbs., 5 oz., and my daughter weighed 9 lbs., 14 oz., at birth. I was told I had large babies because both my grandmothers had developed Type 2 Diabetes and as it ran in my family, larger babies are often a result. But I was still healthy, my babies were healthy and nothing out of the ordinary, right?
From the age of 20, I had been prescribed tranquilizers to relieve my anxiety as I was prone to panic attacks. I still take 1 mg Lorazepam tablets to this day when I have an attack. Ordinary, right?
In my mid-30's I had carpal tunnel surgery on my right wrist. Nothing unusual because I worked on a computer, my Mom had had both wrists done, hereditary? My left wrist has never been done, but bothers me still. Ordinary, right?
In my late 30's I was having trouble with my menstrual cycles being only 17 days apart. It was making me very weak because the cycles lasted 6-8 days and the loss of blood made it hard for me to function some months. I had a Dilation and curettage (D&C) and 9 days after my D&C I had a full period! The doctor said this was not normal and that I should have been free of a cycle for at least 21 days after the D&C. So, they gave me a hysterectomy in 1990 to resolve the problem. Normal?
In 2000, I was on a business trip to Ottawa where I suffered a severe Gall Bladder attack. I was able to make it through the Conference and home to see a doctor where I had surgery to remove the gall bladder 3 months later. It was full of stones and needed to be removed.
In December 2003 I brought my Mom to live with me as she was in the early stages of dementia and needed a caregiver. I was still working, commuting every day to work and managing my life, but it was getting more and more difficult as my Mom was starting to need more help than I could provide while working full time. In May 2006 I sadly put her in a care facility where she remained until her death in December 2011. Stress upon stress upon stress, but I handled everything and kept going. I noticed my knees were starting to hurt and so were my hips. I had seen a specialist but at that time he told me I was too overweight to do anything, so basically, live with it for now!
In June 2006 my family doctor sent me to a new Endocrinologist as he was concerned about my sugar levels and my family history with diabetes. My Endocrinologist, Dr. Jennifer Klinke, was very proactive with tests, blood workups and MRI's and by September, 2006, the diagnosis was in, I had Acromegaly! It took 3 or 4 MRI's to locate my very small pituitary tumour but in the mean time, I was put on a medication called, Sandostatin Octreotide with injections every 28 days by a registered Nurse starting June, 2007. This brought my GH levels down, but made my diabetes worse.
I also had a small lump on my left Thyroid gland that she wanted removed so I saw an Ear, Nose and Throat doctor who arranged for the surgery in 2007. The anesthetist at the hospital I had the surgery at told me that because my tongue was so large, I would have to be awake for the intubation so she could be sure she could do the intubation. This scared me, but I soldiered on. They gave me something to relax me, made me swallow something to numb my throat and sprayed my throat, but nothing helped and she struggled to get the tube down my throat. I found out afterwards that the ENT doctor told them to give me the anesthetic and he intubated me. He said to me, "What kind of an ENT would I be if I couldn't intubate my patients!" and he said he just couldn't watch this new doctor trying to do it. That was nice to know! His name is Dr. David Anderson. So, the removal of the benign tumour/growth from my thyroid did not make any difference other than I now had to be supplemented with synthroid. Normal for Acromegaly, right!
Finally, in 2010, I said that I would be ready for the surgery after I retired in January, 2011, so Dr. Klinke got the ball rolling to visit Dr. Heran, the Neurosurgeon, who she assured me had done several of these surgeries and was very good. I met with him, surgery was performed July 6, 2011 and the tumour was so small that they could not even save a small bit of it for a biopsy. Although the surgery was supposed to be a day surgery, I had to stay for several days because the shock to my pituitary gland made me extremely thirsty and they had to monitor my intake and output for several days. I was the healthiest patient in the critical care area of the hospital!
So, now it's 2015, my GH is a high normal, but good enough for my Endo. My diabetes is under control with Victoza injections daily. I'm off high blood pressure medications and on a lower dosage of Synthroid as my right thyroid is doing just fine. I still suffer daily nausea, slight headaches occasionally and fluctuations with my body heat. I'm getting tested for low cortisol levels next month as my numbers are on the lower end of normal and may be affecting my feelings of exhaustion. My knees and hips are still painful and the arthritis is moving up my spine, but it's manageable. I go for IGF1 tests every 3 months. Life is good because I'm still here. My symptoms took years to recognize and yet, I wouldn't change anything. Yes it's been tough at times, but my struggles are not nearly as difficult as some of those I have read about on Facebook. I have a faith that is never ending, a family that is ever loving and friends that are ever supportive. Now I have my Acromegaly family.... what more could I ask for?
Deanna Badiuk in Vancouver
I am Deanna Badiuk and I am 47 years old. I was born and raised in British Columbia and I currently live in Vancouver. I was diagnosed with Acromegaly in 2008. Prior to the years of being diagnosed, I had developed high-blood pressure; I also suffered from having a menstrual period every two weeks, along with milk lactating from my breasts. But I was not pregnant so that raised some questions, in 2006 I had a hysterectomy done.
In September of 2008, I suffered from a heart attack. The cardiologist on duty at the hospital was unable to hear a certain sound that your heart makes when you have a heart attack. Being a bit puzzled he asked me some questions, like: “Had I gained any weight, how much, and in what time period?”. I was floored, because I actually had gained 112 pounds, in a one and half year period. He also asked if my hands and feet had grown, to which I had to answer, “Yes, they had”
After having an angiography done, I went home. A few weeks later I received a phone call from an endocrinologist requesting to see me in his office and I booked an appointment for the following week. This is the appointment that changed my life forever. I was told I had Acromegaly. I left in a state of shock and disbelief. In April of 2009, I had an endoscopic transsphenoidal surgery done which is the process by which the tumour is removed. Shortly after that I went on medication to help suppress the growth hormones.
I am the founder of the Vancouver Acromegaly Support Group (VASG) which was launched in 2013 and which now has its own website which reaches out to others with Acromegaly across Western Canada. We help provide support to other Acromegaly people and to bring more awareness about the disease and enable others to come out and talk about it openly. VASG meets twice a year, usually in Vancouver or Burnaby and we have specialists and other experts come and present to members, also to address their concerns and questions in an informal setting. The best part is being able to bring us all together. We have become a family and we support each other through the process of dealing with Acromegaly. We want to make sure that everyone can live completely normal and productive lives while managing this disorder proactively.
I am a mother and stepmother with a multitude of grandchildren. I recently got married to Malcolm, who I actually met 9 weeks after my transsphenoidal surgery. He has been very supportive in my journey to start the support group. My career is also a love of mine; I am a Resident Care Aide, in the field geriatrics, which focuses on health care for elderly people with dementia and other complex medical diagnoses. I love to garden, sew, take photos, spend time with my family and friends, and I recently took up fishing and my first catch was a seagull, believe it or not! My favorite time of the year is the fall as I really enjoy the cool crisp air in the mornings, and watching the leaves on the trees change color.
Catherine in Vancouver
Catherine was born and has lived in Vancouver her entire life. She is married with 3 stepsons and 6 grandsons. She retired in 2006 after a 34-year career in sales.
My name is Catherine and I was diagnosed with Acromegaly in September of 2007. My story is a very fortunate one, as I was not experiencing any symptoms that affected my day-to-day life.
My husband Richard had been referred to an Endocrinologist for his diabetes. On our second visit to this doctor, she asked if she could ask me a couple of personal questions even though I was not her patient. I said of course and the first question was if Richard or I had noticed any change in the shape of my face, which we had not. She then asked if I had noticed any changes to my feet or hands and I said that my shoe size had increased by a full size and that I had to replace all of my shoes and my rings no longer fit me either. I had attributed these changes to arthritis or my carpel tunnel for which I had already had surgery. The doctor said that was going to be her next question as to whether or not I had carpel tunnel. She then explained that she suspected I had Acromegaly (and what it was), as my jaw line did not look right for my face. The next step was for me to ask my family doctor to run some blood work and a glucose tolerance test.
I booked an appointment with my doctor and explained what had taken place. He said of course he would run the test but that Acromegaly was quite rare and there could be other causes. The tests came back positive for Acromegaly and I was referred to the same Endocrinologist as a patient this time. The next steps were an MRI and booking an appointment with a neurosurgeon. This all took place between November 2007 and February 2008. On March 13th, 2008 I had surgery to remove the majority of the tumour. The surgeon informed me that he could not remove the entire tumour, as it can be quite dangerous to scrape that close to the brain. I was home two days later with no soreness, bruising, swelling or any side effects.
My health was good and when my husband was told he would need a kidney transplant I asked to be tested and turned out to be a match as a donor. In August of 2013 the transplant took place and was a success. Late into 2013 my growth hormone numbers began to climb back up but I was not feeling any symptoms or anything amiss. My Endocrinologist began a low dose Sandostatin injection every 4 weeks beginning in April of 2014. As of now my numbers have never been better and I have no side effects of the medication or disease at all.
I have been very fortunate in the discovery of my acromegaly, timing and treatment due to early detection. This is not a disease that is easily recognized or diagnosed. It is important that you note any changes to your body and discuss with your doctor as you see these changes – it may save your life.
Catherine was born and has lived in Vancouver her entire life. She is married with 3 stepsons and 6 grandsons. She retired in 2006 after a 34-year career in sales.
My name is Catherine and I was diagnosed with Acromegaly in September of 2007. My story is a very fortunate one, as I was not experiencing any symptoms that affected my day-to-day life.
My husband Richard had been referred to an Endocrinologist for his diabetes. On our second visit to this doctor, she asked if she could ask me a couple of personal questions even though I was not her patient. I said of course and the first question was if Richard or I had noticed any change in the shape of my face, which we had not. She then asked if I had noticed any changes to my feet or hands and I said that my shoe size had increased by a full size and that I had to replace all of my shoes and my rings no longer fit me either. I had attributed these changes to arthritis or my carpel tunnel for which I had already had surgery. The doctor said that was going to be her next question as to whether or not I had carpel tunnel. She then explained that she suspected I had Acromegaly (and what it was), as my jaw line did not look right for my face. The next step was for me to ask my family doctor to run some blood work and a glucose tolerance test.
I booked an appointment with my doctor and explained what had taken place. He said of course he would run the test but that Acromegaly was quite rare and there could be other causes. The tests came back positive for Acromegaly and I was referred to the same Endocrinologist as a patient this time. The next steps were an MRI and booking an appointment with a neurosurgeon. This all took place between November 2007 and February 2008. On March 13th, 2008 I had surgery to remove the majority of the tumour. The surgeon informed me that he could not remove the entire tumour, as it can be quite dangerous to scrape that close to the brain. I was home two days later with no soreness, bruising, swelling or any side effects.
My health was good and when my husband was told he would need a kidney transplant I asked to be tested and turned out to be a match as a donor. In August of 2013 the transplant took place and was a success. Late into 2013 my growth hormone numbers began to climb back up but I was not feeling any symptoms or anything amiss. My Endocrinologist began a low dose Sandostatin injection every 4 weeks beginning in April of 2014. As of now my numbers have never been better and I have no side effects of the medication or disease at all.
I have been very fortunate in the discovery of my acromegaly, timing and treatment due to early detection. This is not a disease that is easily recognized or diagnosed. It is important that you note any changes to your body and discuss with your doctor as you see these changes – it may save your life.